This morning I needed to go pick up Kyle's school computer, so I figured I would check in on the shop and get the business mail from the PO. I was early for the pickup as I thought there would be a long line but luckily there was no line. So I didn't have to panic that my car would overheat and die on me while waiting in line. One stressor I could get rid of. After I left the school, I figured I would blast the radio and sing my stress away, I mean after all doing that a couple of weeks ago saved me for getting into a serious car accident as I was caught in the middle of a high speed chase. After this tough week, that day looks like good times!
Sadly, singing didn't help! All my stresses still hit me full swing! Since the boys weren't around, I could just give in and cry. I cried the whole way to the shop. Staying home with the boys is not a problem at all. Brings me back to the days when they were toddlers and I was helping them with their therapies! Although I do wish that I had textbooks to teach with, we will make do with what we have! My stressors come from how many are responding to the Coronavirus! My friends that know me well, know that the Blizzard of 78' is one of my favorite childhood memories. Not because of the horror of the storm but because people worked together to help one another. Neighbors that didn't like each other, put aside their differences and helped each other shovel. People checked in on those they had never met. People cared and most importantly, they understood the importance of working together and doing what needed to be done!
Coronavirus could be a time like the Blizzard of 78' but we are a divided America! As I recently said in a comment - How parents are reacting to 'flatten the curve' varies as much as the Autism Spectrum! Some of us have hunkered down and only leaving when we have to. Some are trying to find a balance of letting their kids still see friends and practice Social Distancing! And others are living life as normal, thinking their is nothing to worry about! Then you have all the FB post comments of the blame game, the media has blown this out of portion, the Dems did this on purpose to make Trump look bad, the comparing other viruses to this virus, etc....
The fact is, we are all in unchartered waters, some of us will have done the right thing and some will regret the decisions they made. My tears today came from fear! Fear that people will continue to think the Coronavirus is no big deal and I could lose my life! See if I get the Coronavirus and there are limited resources, there is a good chance I will not be the one to get a ventilator as it would go to someone that is younger and doesn't have several Autoimmune Diseases. While my brain knows this is the right decision for the greater, my heart knows that my children still need me! While my Daughter is grown and has her own children, she stills needs me for advice. My boys, my amazing Autistic boys need me to continue to push them out of their comfort zone, help them find ways to advocate for themselves, to teach them life skills for independence, teach them to cook more meals, etc...I could go on and on but I think you get my point. I fear the promise I made to Mike on our wedding day will be broken. I want to make it to our 50th Anniversary! And I fear losing Karleen's Ideas, my business that I have spent 12 years building! My way to help other Autistic & Special Needs children/adults and their families!
Now I am sure some of you reading this will think that I am overreacting. Well, I would rather overact and hunker down than spread the virus and cause someone to lose their life. That life could be your Mother, Father, Husband, Brother, Sister, Grandchild, etc... I see many comparing this to other viruses like H1N1, and others but you all need to stop! The number you are reporting from those viruses cannot be compared to Coronavirus numbers because those viruses are done and the Coronavirus is not! Also, instead of saying it was worse back then, how about looking at the fact that we learned where things went wrong and are trying a different approach to make sure this time less lives are lost! So in the end, if we have less fatalities, be happy that staying home saved lives!
If you are still trying to find a balance or are completely ignoring the 'flatten the curve,' I ask that you start to taking this seriously and do you part to 'flatten the curve.' The longer you ignore the guidelines, the longer this will last. The more you do your normal routine the greater the chance this will spread and that will lead to more fatalities! We all want our normal life back but that cannot happen until everyone pulls together and do their part to 'flatten the curve.'
This is a time that it is better to be safe than sorry!
Friday, March 20, 2020
Sunday, July 7, 2019
ABA Twitter Chat
For the past few days I have been
chatting on Twitter about ABA. I had heard about the controversy about ABA and
I wanted to understand why so many Autistic adults are against ABA so I joined
in on a few twitter conversation. I wish I could say that I have a better
understanding of their views on ABA but I am left with more questions and feel
that many parents may never be able to fully understand their side. The reason
for this is that we all have a different perspective! Plus throughout the
conversation, it was clear that there are different aspects of ABA as one
person's experience differs from another. There were times, I was told I am
abusing or damaging my sons by doing ABA, times when I was told what I did was
not ABA and it was said that what I did was ABA leaning. So which is it?? I am
not sure but I am sure that I have not abused or damaged my sons! What I do
know, is that a person's perspective of ABA varies based on their experiences,
whether it was true ABA or not, what information they read about ABA & how
they interpreted what they read, is the person NT or on the Spectrum, did they
have a good therapist or a bad therapist, was the person speech &
developmentally delayed or hit all their milestones, were they dx'd at an early
age or found out as an adult that they were on the Spectrum and most of all -
where are they on the Spectrum. As a parent to 3 Autistic sons & been in
many discussions with Autistic adults, I am use to Autistic adults insisting
that my views and opinions don't matter because I do not have Autism. While I
feel that all views & opinions should be listened to, I am often told that
what I have to say is irrelevant.
One problem with trying to chat
on twitter is that you are only allowed so many characters in a tweet so a
person tries to pack in a lot of information in as few tweets as possible so
sometimes things are left out or not fully understood by the reader. Or if
there are a lot of continuous tweets or a thread with hundreds of tweets, a
reader may miss one or more and judge without all the information. This morning
I woke up to 56 notifications on twitter and have had about another 50 since
then. Many are comments about a portion of a tweet thread judging me without
reading ALL the tweets where I may have explained in more detail. One thing I
have learned over the years is that you need to know an Autistic person's
experience & how they are doing now as an adult to know whether they are
giving you good advice or not as I explained in my blog Autism Advice. So I asked
questions trying to get background to understand their perspective. Questions
like - What is an example of ABA you had? Have you sat in on a recent ABA
therapy session? One person explained that here Mother would yell & scream
at her to make her eat food she did not like. This is not ABA, it is abuse!
With that explanation, how can I believe that this person truly understand what
ABA is when she/he speaks out against ABA? Others didn't answer that question.
No one had been in a recent ABA session but have read about. That leaves me to
the question of - Did you read information from both the pro and the against
side? I didn't ask but the answer does matter because if you are only reading one
side, your viewpoint is skewed.
I was asked - Can you give ONE example of something that is unique to ABA which does
not encompass one of the things autistic people complain about? Something that
other autism therapies don’t use? My Answer - Ok, meltdowns. I always had a Sensory Bags of activities & items
with me. If we were in a store grocery shopping & I sensed a
meltdown, I would redirect them to another activity. If they chose not to
do that activity, I gave them a time out. While it sounds like a
punishment it actually gave them a break from overstimulation and gave them the
time to work through things. They knew I was there for them the whole time.
When they were ready, we talked about how I offered them an activity to
help. Over time they learned to take the redirection I Offered. Once they
learned how to identify a trigger, they started redirecting
themselves. They have always had clear rules, clear consequences
along with a lot of love and support! That person's response -That sounds great! It’s also not ABA. ABA
teaches that removing the child from the situation is rewarding the negative
behavior and instead the child should be kept in the overstimulated environment
until they are passive. So I clarified - I didn't
remove them, sorry I should have clarified that a bit more. Their
time out was in the store, right where they started the meltdown.
Removing a child from a store for a meltdown, only teaches a child that
they can get out of shopping by having a meltdown. That person's response was - Ah. Then that
is more ABA-leaning. Let me explain why autistic people don’t like that line of
thinking - we can’t help having meltdowns. They are involuntary and feel awful.
Being asked to go into a grocery store is like putting your hand in ice water. My response - Grocery shopping was hard for them at first but
they needed to learn how to do it! They were allowed to show distress & cry
if needed but they also learned that meltdowns are unacceptable behavior! Which
is why I taught them to identify their trigger & taught them techniques .
to help them when they felt a trigger. Whether it was deep breathing,
fidgets or as they got older, removing themselves from the situation. Now
they love shopping!
Now I had done it, I said meltdowns were unacceptable behavior! How dare I say something is unacceptable, even though it is true! Now I should have gone into more of an explanation but it would have been a waste of typing because I wouldn't have been heard. So I will explain a bit more here and then I will address some of the responses I got. Meltdowns are unacceptable behavior, understandable behavior and maybe even needed but that doesn't change the fact that having a meltdown in the middle of a store is unacceptable behavior. At the age of 5 it may seem harmless but at 15, that same meltdown may hurt someone and at 25 that meltdown will get you fired from a job, so yes a meltdown is unacceptable behavior. Which is why I helped my sons learn to identify their triggers, how to use fidget or other sensory items and helped them learn techniques to help them work the pain, stress or overstimulation without having a meltdown. Does it always work, no and that is OK but it is important for them to always try. To say that a person is allowed to have a meltdown whenever needed is wrong and telling that to parents only sets up a child to become an adult that will lose their jobs and/or get arrested for assault. I am setting my sons up for success and yes that means that they need to know that if they are in a board meeting with their company's CEO's that they cannot have a meltdown.
Here are some comments that I woke up to, I have not replied to them on twitter but will respond to a few here and post this blog to the thread.
“What a nasty piece of work you are! If you had the first idea of how we feel under this type of pressure you would realize why this is torture. We have online grocery shopping, why would anyone have to go into a supermarket?” The whole, we can shop online is a false safety net! Sorry but if there was a blizzard and you lost power or internet for 2 weeks, how would you order online? You can't, you would have to go to the store. Now for a person that didn't learn techniques of handling the triggers of shopping, they would have a harder time having to go into a store or they would just not do it. Living like that is not fully living, it is limited living and I want my sons to have a full life!
“Meltdowns are not unacceptable behaviour though. Meltdowns are expressions of extreme distress. Basically what you described is a toughening-up process whereby we learn to ignore our feelings and tough it out. I totally understand why it seems necessary and great, but...” Teaching a child techniques to help them work though their stress & feeling is not ignoring their feelings!
“Meltdowns are not behaviours, they are involuntary responses to extreme distress. You are teaching them that you are not a safe space and they must internalize their pain whilst w/ you. Flee, fight, freeze. What do your children do now? My heart hurts for your children and you.” I just showed this to my 13yo, his response - My Mom is my safe space, she is the one I call when I am struggling with overstimulation as talking to her and her reminding me to take a deep breath helps me regulate until I can get to a safe place.
I could keep going but this is a long blog and I need to get back to work. Since I have more questions, I will continue to do more research on both sides of ABA because I do feel that understanding both sides gives parents a better viewpoint to help our children. The problem comes when parents are dismissed because we don't have Autism! My advice to Autistic adults - ask us more questions as to how we came to our viewpoints! If anyone had asked me that, I would have explained that I understand Sensory Issues because medical conditions left me with many Sensory Issues. I understand Anxiety, OCD, depression and PTSD as I am a survivor of every form of abuse, I also had a Mother that always tried to conform me to the daughter she wanted by not loving me for who I am. My life has many limits because of my Anxiety, like I cannot attend a school function without micro-dose of Medicinal Cannabis. I didn't want my sons life to be limited like mine so I helped them find techniques that work for them. I am baffled at how that is wrong or how so many won't believe that these techniques are not abusive and that they will not suffer from PTSD. So while it is true that I do not have Autism, I am far from being a typical person! Also ask parents what level of Autism their child has because it matters. If you are an adult with Asperger's and all your experiences are with others that have Asperger's then you cannot understand what a parent of a child with no speech & developmental delays are facing! Our fear that if our child stays nonverbal & cannot take care of themselves, that when we die, we have to rely on strangers to care for our children and we all know that is not always safe for them. You are on twitter so you either you didn't have delays or your parents helped you get to where you are today and we are doing our best to get our children there too! Most of all, stop telling us that we have damaged our children! Unless you were to witness our children in person, you cannot make that assessment!! You are taking your experience and demanding that our children will have the same affects you did when you don't know if that is the case. Because it seems, ABA is different for everyone just as a dx of Autism is different in Autistics!
We raised our sons to Embrace their Autism, to own it and to be open about it. Yes we are strict, yes we have rules & consequences but we balance it all with a lot of love & support! Now that he boys are older and doing well, I spend my days helping other families understand the Sensory part of Autism, standing up for all children, telling parents to stop looking at the disability and find the abilities in their children and most of all, trying to get parents to believe in their children!
I will continue to support what I know ABA to be because it is working to help child! With that said, I do not support abuse, withholding love or ignoring a child for any reason and have to say, I have never seen or heard of those techniques in ABA. My feelings about ABA are not set in stone, with my research if I find that the majority of ABA is abusive then I will change my stance. But I have a feeling that what was once ABA is not what ABA is today. Maybe with the modification of ABA over the years and the changes that were made, they should have changed the name so there would not be so much confusion!
Side note - While I will post this blog to the original twitter threads I chatted on, but I will not be commenting about this blog on those threads, I will only comment on the blog thread form my page!
PS - Sorry about the highlighted and color changes throughout the blog, I have no idea how to fix that!
Now I had done it, I said meltdowns were unacceptable behavior! How dare I say something is unacceptable, even though it is true! Now I should have gone into more of an explanation but it would have been a waste of typing because I wouldn't have been heard. So I will explain a bit more here and then I will address some of the responses I got. Meltdowns are unacceptable behavior, understandable behavior and maybe even needed but that doesn't change the fact that having a meltdown in the middle of a store is unacceptable behavior. At the age of 5 it may seem harmless but at 15, that same meltdown may hurt someone and at 25 that meltdown will get you fired from a job, so yes a meltdown is unacceptable behavior. Which is why I helped my sons learn to identify their triggers, how to use fidget or other sensory items and helped them learn techniques to help them work the pain, stress or overstimulation without having a meltdown. Does it always work, no and that is OK but it is important for them to always try. To say that a person is allowed to have a meltdown whenever needed is wrong and telling that to parents only sets up a child to become an adult that will lose their jobs and/or get arrested for assault. I am setting my sons up for success and yes that means that they need to know that if they are in a board meeting with their company's CEO's that they cannot have a meltdown.
Here are some comments that I woke up to, I have not replied to them on twitter but will respond to a few here and post this blog to the thread.
“What a nasty piece of work you are! If you had the first idea of how we feel under this type of pressure you would realize why this is torture. We have online grocery shopping, why would anyone have to go into a supermarket?” The whole, we can shop online is a false safety net! Sorry but if there was a blizzard and you lost power or internet for 2 weeks, how would you order online? You can't, you would have to go to the store. Now for a person that didn't learn techniques of handling the triggers of shopping, they would have a harder time having to go into a store or they would just not do it. Living like that is not fully living, it is limited living and I want my sons to have a full life!
“Meltdowns are not unacceptable behaviour though. Meltdowns are expressions of extreme distress. Basically what you described is a toughening-up process whereby we learn to ignore our feelings and tough it out. I totally understand why it seems necessary and great, but...” Teaching a child techniques to help them work though their stress & feeling is not ignoring their feelings!
“Meltdowns are not behaviours, they are involuntary responses to extreme distress. You are teaching them that you are not a safe space and they must internalize their pain whilst w/ you. Flee, fight, freeze. What do your children do now? My heart hurts for your children and you.” I just showed this to my 13yo, his response - My Mom is my safe space, she is the one I call when I am struggling with overstimulation as talking to her and her reminding me to take a deep breath helps me regulate until I can get to a safe place.
I could keep going but this is a long blog and I need to get back to work. Since I have more questions, I will continue to do more research on both sides of ABA because I do feel that understanding both sides gives parents a better viewpoint to help our children. The problem comes when parents are dismissed because we don't have Autism! My advice to Autistic adults - ask us more questions as to how we came to our viewpoints! If anyone had asked me that, I would have explained that I understand Sensory Issues because medical conditions left me with many Sensory Issues. I understand Anxiety, OCD, depression and PTSD as I am a survivor of every form of abuse, I also had a Mother that always tried to conform me to the daughter she wanted by not loving me for who I am. My life has many limits because of my Anxiety, like I cannot attend a school function without micro-dose of Medicinal Cannabis. I didn't want my sons life to be limited like mine so I helped them find techniques that work for them. I am baffled at how that is wrong or how so many won't believe that these techniques are not abusive and that they will not suffer from PTSD. So while it is true that I do not have Autism, I am far from being a typical person! Also ask parents what level of Autism their child has because it matters. If you are an adult with Asperger's and all your experiences are with others that have Asperger's then you cannot understand what a parent of a child with no speech & developmental delays are facing! Our fear that if our child stays nonverbal & cannot take care of themselves, that when we die, we have to rely on strangers to care for our children and we all know that is not always safe for them. You are on twitter so you either you didn't have delays or your parents helped you get to where you are today and we are doing our best to get our children there too! Most of all, stop telling us that we have damaged our children! Unless you were to witness our children in person, you cannot make that assessment!! You are taking your experience and demanding that our children will have the same affects you did when you don't know if that is the case. Because it seems, ABA is different for everyone just as a dx of Autism is different in Autistics!
We raised our sons to Embrace their Autism, to own it and to be open about it. Yes we are strict, yes we have rules & consequences but we balance it all with a lot of love & support! Now that he boys are older and doing well, I spend my days helping other families understand the Sensory part of Autism, standing up for all children, telling parents to stop looking at the disability and find the abilities in their children and most of all, trying to get parents to believe in their children!
I will continue to support what I know ABA to be because it is working to help child! With that said, I do not support abuse, withholding love or ignoring a child for any reason and have to say, I have never seen or heard of those techniques in ABA. My feelings about ABA are not set in stone, with my research if I find that the majority of ABA is abusive then I will change my stance. But I have a feeling that what was once ABA is not what ABA is today. Maybe with the modification of ABA over the years and the changes that were made, they should have changed the name so there would not be so much confusion!
Side note - While I will post this blog to the original twitter threads I chatted on, but I will not be commenting about this blog on those threads, I will only comment on the blog thread form my page!
PS - Sorry about the highlighted and color changes throughout the blog, I have no idea how to fix that!
Wednesday, February 20, 2019
Kennebunk - It is time to speak up!!!
Kennebunk is in the news again!! I have read the news articles, the districts response to the news article and many of the comments on the posts about the article and all I can say is - I am not surprised at all!!! To the woman these articles are about - I am so sorry for what you went through!!!
Some in town seem very shocked that these events took place, I am not. Why? Because of everything we have been through with our sons is the simple answer. A small part of me says, "don't write this" but the larger part say "Do it because not speaking up is the biggest problem in this town." And what do I have to lose, most of the town doesn't like me already.
May marks 9 years we have lived in Kennebunk. We moved here so our boys would get a better education and because Kennebunk looked like an amazing community. At first is was great but the longer you live here the more you realize it is a Faux Community for transplants (Transplant is what natives call people that move here). Leaving my hometown and state was an easy decision because the schools there were not supporting our sons the way they needed and we had heard great things about the schools here. At first it seemed like I fit in, even made some friends. I joined in on parent/child activities offered through the Rec department, quickly found out that being open about a child's dx of Autism was not something that was done here. OK but the boys need friends so I will play along. Well that didn't last too long!!
Time came for D to speak to his class about his Asperger's, the school did not want that to happen but it did. I lost a friend and one of D's friends with Asperger's stopped talking to him. But his talk helped children understand him and he made some other friends, or what I like to call polite friends. A polite friend is a person that is nice to you while you are at school or a school function but does not want to be around you outside of that setting. On a positive note, school administration saw that his talk helped his peers to understand him, his quirks and that there was more acceptance & understanding by students.
I quickly started to realize that Kennebunk is a community that goes with the flow, keep your head down, don't ask questions and don't point out flaws. I tried to abide by that, I really did but then I saw how D was treated by his basketball teammates in his second year of playing. They bullied by exclusion and I could not get the coach to do anything about it so I talked with the players. The talk went great, his teammates were very receptive, it was a great day (click on 'talk' for the blog). Sadly the next day the email from the coach quickly showed me that he and parents were upset, even stating how unfair it was for the boys to have to go through that and I was no longer wanted to assist in coaching. I was baffled how talking to the team was unfair but excluding D was OK. I asked that I be allowed to let the boys know that I was unable to help because of babysitting issues but was told, I was no longer allowed to talk to the boys again. I did receive two emails from parents stating that they thought the talk was a good life lesson for their sons but at the games I was ignored and got dirty looks!! I broke the unwritten rules, lost a few more friends. Within a few weeks of me not helping coach, D was excluded on the court again, the team started to lose again because they weren't working as a team and at the end of the season, D said he would no longer play. Within a year or 2 he was bullied out of baseball too. I was vocal about both events but there was no community support!! So we turned him to other interests.
A year after the basketball incident, Karl had asked to go to camp as he wanted to have fun at camp with his friends. As you can read in the blog (click on camp) the town manager didn't allow it. I was vocal again and again no community support. Even had another Autism Mom say "I can understand why the town is doing that." I was blown away that so many were OK with a 7 year old not being allowed in camp because he needed a little extra supervision. I couldn't even get help from organizations with lawyers because they would be up against Kennebunk so it wasn't winnable and I couldn't afford a lawyer so he couldn't go. The school refused extended school year because Karl was doing great but all agreed that camp was needed to help him continue to build on social skills and to be with his friends.
This blog could go on and on if I were to list all the times I have spoken up for what is right in Kennebunk but I am not in the mood to type it all, plus many of you already know which is why I am called 'a pain in the ass' and God only knows what else. But here is the thing - I will not stop being a pain in the ass as long as my sons and other children need me to speak up!!! Speaking up has brought much needed change to this community and it has been for the better. My social media campaign to bring awareness to the serious issue of drivers not stopping for buses lead to buses getting camera's. While now and then a car may not stop, the number of passing cars has be reduced and at the start of each school year there are signs placed reminding drivers that school is starting and to stop for buses. So you may have all hated that I was recording cars breaking the law, posting the videos, posting about how an officer gave a warning to a man that confessed to breaking 2 laws, 1) he was on the phone distracted and 2) that he did not stop for the bus, but I bet you like the fact that buses got cameras.
Autism awareness and openness is one thing we have brought to the Kennebunks, While I know many still feel 'Autism' is not word that is to be spoken or the Awareness Ribbon to be seen, there a some families that feel they no longer need to hide their child's dx and most importantly many children with Autism know that are not alone! Through the years I have gotten a couple of messages thanking me for the work we have done and how it has helped their family and that is all I need to know to assure me that speaking up is the right thing to do. Don't get me wrong, speaking up is not all sunshine and roses, it is very lonely, as I said, I have lost friends through the years because of it. Hell I have 2 friends in town that I trust and a quite a few 'Polite Friends,' ones that say they are my friend, are facebook friends with me but don't want to hang out or associate with me in the real world. No worries, I am use to it, my own mom and sisters didn't want me around either. My childhood is not something I would wish on my worst enemy. I was sick from birth, spent most of my life until 3.5yo in the hospital, even spent 2 months in a plastic bubble, I am a survivor of every form of abuse, I even know what it is like to not be allowed to join groups and such because I was too sick, and through it all my Dad had my back, at least for what he knew about. With his heart condition, as I got older I feared he would have a heart attack from the stress of knowing. Through it all I became a very unique person with a very different perspective on life. A perspective that many do not understand at first but over time, when what I have said comes true, they realize that I had an insight to where things were headed. Empaths tend to do that. As a teenager, I begged God to let me know why he allowed so much to happen to me. Was I that horrible as person? Was I suppose to die like the Doctors thought? Is this punishment for living? Then I had my daughter, with raising her I started to get some clarity!! Years later when we found out that D had Asperger's many were surprised that I was not upset. To me there was no reason to be upset, I just wanted to know how I could help him. I remember going to my Dad's grave and talking with him about D and his dx and how Karl (in my belly at the time) may have it too. I looked up at the sky and said "I get it God, I now know why." While I wish there was an easier way to learn the lessons he needed me to learn, I forgave him and accepted my role in raising children with Autism. I knew that I would need to be their voice as I taught them how to be their own voice.
Moving to Kennebunk, a place where people go with the flow, ignore problems, exclude those that are different, bully what they don't understand, call new neighbors transplants and a place where it is wrong to ask questions did not change my mission, I have and will continue to speak up for what is right!!!
Now Kennebunk my question to you is - Has this last event made you realize that there are real problems in this community and are you ready to speak up?? I for one would like the bullying to stop, the exclusion to stop and for our town to be a real community that supports one another!!
Some in town seem very shocked that these events took place, I am not. Why? Because of everything we have been through with our sons is the simple answer. A small part of me says, "don't write this" but the larger part say "Do it because not speaking up is the biggest problem in this town." And what do I have to lose, most of the town doesn't like me already.
May marks 9 years we have lived in Kennebunk. We moved here so our boys would get a better education and because Kennebunk looked like an amazing community. At first is was great but the longer you live here the more you realize it is a Faux Community for transplants (Transplant is what natives call people that move here). Leaving my hometown and state was an easy decision because the schools there were not supporting our sons the way they needed and we had heard great things about the schools here. At first it seemed like I fit in, even made some friends. I joined in on parent/child activities offered through the Rec department, quickly found out that being open about a child's dx of Autism was not something that was done here. OK but the boys need friends so I will play along. Well that didn't last too long!!
Time came for D to speak to his class about his Asperger's, the school did not want that to happen but it did. I lost a friend and one of D's friends with Asperger's stopped talking to him. But his talk helped children understand him and he made some other friends, or what I like to call polite friends. A polite friend is a person that is nice to you while you are at school or a school function but does not want to be around you outside of that setting. On a positive note, school administration saw that his talk helped his peers to understand him, his quirks and that there was more acceptance & understanding by students.
I quickly started to realize that Kennebunk is a community that goes with the flow, keep your head down, don't ask questions and don't point out flaws. I tried to abide by that, I really did but then I saw how D was treated by his basketball teammates in his second year of playing. They bullied by exclusion and I could not get the coach to do anything about it so I talked with the players. The talk went great, his teammates were very receptive, it was a great day (click on 'talk' for the blog). Sadly the next day the email from the coach quickly showed me that he and parents were upset, even stating how unfair it was for the boys to have to go through that and I was no longer wanted to assist in coaching. I was baffled how talking to the team was unfair but excluding D was OK. I asked that I be allowed to let the boys know that I was unable to help because of babysitting issues but was told, I was no longer allowed to talk to the boys again. I did receive two emails from parents stating that they thought the talk was a good life lesson for their sons but at the games I was ignored and got dirty looks!! I broke the unwritten rules, lost a few more friends. Within a few weeks of me not helping coach, D was excluded on the court again, the team started to lose again because they weren't working as a team and at the end of the season, D said he would no longer play. Within a year or 2 he was bullied out of baseball too. I was vocal about both events but there was no community support!! So we turned him to other interests.
A year after the basketball incident, Karl had asked to go to camp as he wanted to have fun at camp with his friends. As you can read in the blog (click on camp) the town manager didn't allow it. I was vocal again and again no community support. Even had another Autism Mom say "I can understand why the town is doing that." I was blown away that so many were OK with a 7 year old not being allowed in camp because he needed a little extra supervision. I couldn't even get help from organizations with lawyers because they would be up against Kennebunk so it wasn't winnable and I couldn't afford a lawyer so he couldn't go. The school refused extended school year because Karl was doing great but all agreed that camp was needed to help him continue to build on social skills and to be with his friends.
This blog could go on and on if I were to list all the times I have spoken up for what is right in Kennebunk but I am not in the mood to type it all, plus many of you already know which is why I am called 'a pain in the ass' and God only knows what else. But here is the thing - I will not stop being a pain in the ass as long as my sons and other children need me to speak up!!! Speaking up has brought much needed change to this community and it has been for the better. My social media campaign to bring awareness to the serious issue of drivers not stopping for buses lead to buses getting camera's. While now and then a car may not stop, the number of passing cars has be reduced and at the start of each school year there are signs placed reminding drivers that school is starting and to stop for buses. So you may have all hated that I was recording cars breaking the law, posting the videos, posting about how an officer gave a warning to a man that confessed to breaking 2 laws, 1) he was on the phone distracted and 2) that he did not stop for the bus, but I bet you like the fact that buses got cameras.
Autism awareness and openness is one thing we have brought to the Kennebunks, While I know many still feel 'Autism' is not word that is to be spoken or the Awareness Ribbon to be seen, there a some families that feel they no longer need to hide their child's dx and most importantly many children with Autism know that are not alone! Through the years I have gotten a couple of messages thanking me for the work we have done and how it has helped their family and that is all I need to know to assure me that speaking up is the right thing to do. Don't get me wrong, speaking up is not all sunshine and roses, it is very lonely, as I said, I have lost friends through the years because of it. Hell I have 2 friends in town that I trust and a quite a few 'Polite Friends,' ones that say they are my friend, are facebook friends with me but don't want to hang out or associate with me in the real world. No worries, I am use to it, my own mom and sisters didn't want me around either. My childhood is not something I would wish on my worst enemy. I was sick from birth, spent most of my life until 3.5yo in the hospital, even spent 2 months in a plastic bubble, I am a survivor of every form of abuse, I even know what it is like to not be allowed to join groups and such because I was too sick, and through it all my Dad had my back, at least for what he knew about. With his heart condition, as I got older I feared he would have a heart attack from the stress of knowing. Through it all I became a very unique person with a very different perspective on life. A perspective that many do not understand at first but over time, when what I have said comes true, they realize that I had an insight to where things were headed. Empaths tend to do that. As a teenager, I begged God to let me know why he allowed so much to happen to me. Was I that horrible as person? Was I suppose to die like the Doctors thought? Is this punishment for living? Then I had my daughter, with raising her I started to get some clarity!! Years later when we found out that D had Asperger's many were surprised that I was not upset. To me there was no reason to be upset, I just wanted to know how I could help him. I remember going to my Dad's grave and talking with him about D and his dx and how Karl (in my belly at the time) may have it too. I looked up at the sky and said "I get it God, I now know why." While I wish there was an easier way to learn the lessons he needed me to learn, I forgave him and accepted my role in raising children with Autism. I knew that I would need to be their voice as I taught them how to be their own voice.
Moving to Kennebunk, a place where people go with the flow, ignore problems, exclude those that are different, bully what they don't understand, call new neighbors transplants and a place where it is wrong to ask questions did not change my mission, I have and will continue to speak up for what is right!!!
Now Kennebunk my question to you is - Has this last event made you realize that there are real problems in this community and are you ready to speak up?? I for one would like the bullying to stop, the exclusion to stop and for our town to be a real community that supports one another!!
Thursday, April 12, 2018
Autism Advice
In many ways I wish I could avoid April, partly because I become a year older but mostly because it is Autism Awareness Month. I am all for Autism Awareness but some of the awareness is very damaging to Autistics.
I have been a Mom for 29 years, am I perfect, Hell No!!! Do I know everything, again Hell No!!! But as of yesterday I am 49 years old, so I do know a few things about raising children. Having raised a child without IPads, Android phones & very limited internet access and currently raising children with access to all those electronics, I can say parenting without electronics was so much easier!!! Many say that when it comes to Autism, one must think out of the box, well for me there is no box!! Now you might think that this blog is going to tell you that you should do what I suggest, well it is not. This blog is about the importance of knowing who you are taking advice from.
Why I want to help children - Ever since I was a little girl, I wanted to help other children. My dad use to tell me stories about how I would help kids that were sicker than I was while I was in the hospital. Having been admitted to the Hospital 57 times before I turned 3 1/2, I helped a lot of children. I have always been in tune with what children need. My younger sister was non-verbal for a while, she would tug on my shirt and I knew exactly what she needed without her saying a word. I now know that my speaking for her may have been why it took Doctors so long to find out that she was half deaf in her left ear. Luckily, they found out what was wrong, with time and speech therapy she got on track. That life lesson, my love for helping children, the story of Helen Keller and my intuition is what drives my approach to raising 3 sons with Autism. Because of my anxiety, OCD and SPD, I have thought many times that I may be on the Spectrum too but I am not, as Sheldon from BBT would say, 'I was tested for that.....' My anxiety, OCD, SPD and severe insecurities come from mental abuse (from my Mother), isolation (Hospital, once I lived in a plastic bubble for two months) and from the fact that the one person who believed in me died the day I graduated from High School. So there are many life experiences I can draw on to help me help my sons. Things like, I know that avoiding triggers only enable a person. I wish I had more time with my Dad so he could have continued to help push me out of my comfort zone. He tried so hard to pick me up when I my Mom would crush my spirits but when he died, so did my free spirit. I use to be a girl that wore purple eye shadow even though everyone said it looked bad, I loved it and didn't care what others thought. After he died, I got screamed at for the smallest of things, everything I did was wrong and I was worthless, so I became a wallflower, even today I feel worthless. So while I do not have Autism, I have a great deal of life experience of being told to conform. My techniques are not about my sons conforming, it is about them surviving in a harsh world and for them to be independent adults. While I am not the 'Free Spirit' I was before my Dad died, I still cannot conform to what everyone wants me to do, I have tried but I have to speak up when wrongs are being done. I am the town outcast because I speak up too much. I speak for not only my children, I speak up for all children that need a voice and no matter how lonely it can be, I will always speak up because it is the right thing to do.
Enough about my experience and why I do what I do to help kids. Autism advice is tricky, each child is different, everyone has an opinion on cause, approaches, techniques, vocabulary, etc......My advice about Autism Advice - 1) Pick your goals for your child, or if they are old enough, what are their goals in life. 2) Are you hoping for your child to be independent or that you will be their guardian. This one can be hard, some child may not be able to be independent but that does not mean it cannot be a goal even if you know partial independence is all there will be. I always pushed my sons 10 steps past each goal set by therapists. 3) Know who you are getting advice from!!!! There are things you have to look at in a persons advice. If a person is giving advice to avoid triggers and they are someone who as an Autistic Adult still avoids their triggers, that tells you that avoiding triggers does not change anything. The other end - An Autism Mom may give advice about how to slowly help your child overcome that trigger with tools & techniques AND can give you examples of how it helped her children. Two bits of advice that are total opposites!!! The only way to know which advice you should take is by knowing what the goals are for your child. Do you want your child to always have to avoid the rain because he has an extreme OCD about rain getting him wet or do you want your son to be able to go for a walk with light rain showers? I know this one all too well. When Kyle was two, if a drop of rain touched his skin, he would scream for 20 to 30 minutes, you would have thought it was acid that touched him he scream so loud. Now at 9yo he can walk in light rain and not have a problem and hopefully as he gets older he will get easier for him with heavier rain.
Both bits of advice comes from a different perspective and while I do not support avoiding, I will not bash a person for their perspective. Sadly many do not respect my perspective, I tend to be called nasty names and get comments like "I feel so sorry that your boys have you as a Mom." That one came from my advice to put extreme limits video games because children with Autism will use those games to avoid social interaction. If you know me, you know that I am firmly against children using computers, IPads and video games as they are creating a huge Social gap for ALL children. Yes computers have a place for learning but they are being used too much in school and at home. The Doctors, research and studies back me up this one. Above I used the 'avoid' example because I have seen a bad trend of Autistic adults giving this advice. While I would love to say that because they have Autism they are experts but that is not always the case. See there are many that did not find out that they have Autism until they were adults. Why is this information important?? Because they will tell you that their parents pushed them and that pushing caused a great them a great deal of stress. While I feel bad that their parents did not use the right approach, that does not mean that all parents who push their children out of their comfort zone are doing it wrong. The difference between me and that persons parents is that I know my sons have Autism and their parents didn't. Temple Grandin talks a lot about parenting needing to push their children more. While I have not had a chance to read her new book The Loving Push, I hear it is great! Temple Grandin is an adult with Autism that I would listen to!! I have a feeling her Mother and I may have a lot in common!! This is why knowing how a person came to their perspective is very important to know what advice to listen to.
I have been a Mom for 29 years, am I perfect, Hell No!!! Do I know everything, again Hell No!!! But as of yesterday I am 49 years old, so I do know a few things about raising children. Having raised a child without IPads, Android phones & very limited internet access and currently raising children with access to all those electronics, I can say parenting without electronics was so much easier!!! Many say that when it comes to Autism, one must think out of the box, well for me there is no box!! Now you might think that this blog is going to tell you that you should do what I suggest, well it is not. This blog is about the importance of knowing who you are taking advice from.
Why I want to help children - Ever since I was a little girl, I wanted to help other children. My dad use to tell me stories about how I would help kids that were sicker than I was while I was in the hospital. Having been admitted to the Hospital 57 times before I turned 3 1/2, I helped a lot of children. I have always been in tune with what children need. My younger sister was non-verbal for a while, she would tug on my shirt and I knew exactly what she needed without her saying a word. I now know that my speaking for her may have been why it took Doctors so long to find out that she was half deaf in her left ear. Luckily, they found out what was wrong, with time and speech therapy she got on track. That life lesson, my love for helping children, the story of Helen Keller and my intuition is what drives my approach to raising 3 sons with Autism. Because of my anxiety, OCD and SPD, I have thought many times that I may be on the Spectrum too but I am not, as Sheldon from BBT would say, 'I was tested for that.....' My anxiety, OCD, SPD and severe insecurities come from mental abuse (from my Mother), isolation (Hospital, once I lived in a plastic bubble for two months) and from the fact that the one person who believed in me died the day I graduated from High School. So there are many life experiences I can draw on to help me help my sons. Things like, I know that avoiding triggers only enable a person. I wish I had more time with my Dad so he could have continued to help push me out of my comfort zone. He tried so hard to pick me up when I my Mom would crush my spirits but when he died, so did my free spirit. I use to be a girl that wore purple eye shadow even though everyone said it looked bad, I loved it and didn't care what others thought. After he died, I got screamed at for the smallest of things, everything I did was wrong and I was worthless, so I became a wallflower, even today I feel worthless. So while I do not have Autism, I have a great deal of life experience of being told to conform. My techniques are not about my sons conforming, it is about them surviving in a harsh world and for them to be independent adults. While I am not the 'Free Spirit' I was before my Dad died, I still cannot conform to what everyone wants me to do, I have tried but I have to speak up when wrongs are being done. I am the town outcast because I speak up too much. I speak for not only my children, I speak up for all children that need a voice and no matter how lonely it can be, I will always speak up because it is the right thing to do.
Enough about my experience and why I do what I do to help kids. Autism advice is tricky, each child is different, everyone has an opinion on cause, approaches, techniques, vocabulary, etc......My advice about Autism Advice - 1) Pick your goals for your child, or if they are old enough, what are their goals in life. 2) Are you hoping for your child to be independent or that you will be their guardian. This one can be hard, some child may not be able to be independent but that does not mean it cannot be a goal even if you know partial independence is all there will be. I always pushed my sons 10 steps past each goal set by therapists. 3) Know who you are getting advice from!!!! There are things you have to look at in a persons advice. If a person is giving advice to avoid triggers and they are someone who as an Autistic Adult still avoids their triggers, that tells you that avoiding triggers does not change anything. The other end - An Autism Mom may give advice about how to slowly help your child overcome that trigger with tools & techniques AND can give you examples of how it helped her children. Two bits of advice that are total opposites!!! The only way to know which advice you should take is by knowing what the goals are for your child. Do you want your child to always have to avoid the rain because he has an extreme OCD about rain getting him wet or do you want your son to be able to go for a walk with light rain showers? I know this one all too well. When Kyle was two, if a drop of rain touched his skin, he would scream for 20 to 30 minutes, you would have thought it was acid that touched him he scream so loud. Now at 9yo he can walk in light rain and not have a problem and hopefully as he gets older he will get easier for him with heavier rain.
Both bits of advice comes from a different perspective and while I do not support avoiding, I will not bash a person for their perspective. Sadly many do not respect my perspective, I tend to be called nasty names and get comments like "I feel so sorry that your boys have you as a Mom." That one came from my advice to put extreme limits video games because children with Autism will use those games to avoid social interaction. If you know me, you know that I am firmly against children using computers, IPads and video games as they are creating a huge Social gap for ALL children. Yes computers have a place for learning but they are being used too much in school and at home. The Doctors, research and studies back me up this one. Above I used the 'avoid' example because I have seen a bad trend of Autistic adults giving this advice. While I would love to say that because they have Autism they are experts but that is not always the case. See there are many that did not find out that they have Autism until they were adults. Why is this information important?? Because they will tell you that their parents pushed them and that pushing caused a great them a great deal of stress. While I feel bad that their parents did not use the right approach, that does not mean that all parents who push their children out of their comfort zone are doing it wrong. The difference between me and that persons parents is that I know my sons have Autism and their parents didn't. Temple Grandin talks a lot about parenting needing to push their children more. While I have not had a chance to read her new book The Loving Push, I hear it is great! Temple Grandin is an adult with Autism that I would listen to!! I have a feeling her Mother and I may have a lot in common!! This is why knowing how a person came to their perspective is very important to know what advice to listen to.
Now rule 4 is the most important - Stop bashing one another!! Having a debate over a difference of opinions is fine but no name calling!! The Autism Community is too divided!! For example I am sure some are going to be yelling that I used 'Autistics' in my sentences and then others are going to be yelling because I said 'sons with Autism.' The argument is petty and it distracts everyone from what is really important. Which word or phrase I use all depends on how I form the sentence and which makes more sense. Just to cover my basis and everyone knows that I am not offending my sons - My sons also use both 'I am Autistic' and 'I have Autism.'
#Embrace Autism
#Embrace Autism
Friday, May 12, 2017
Fidget Spinners
Spinners are very popular right now and there is quite the controversy about them. Schools are banning them as they are disrupting class, parents insisting their children 'need' them for Autism and ADHD. Well here is my take on Spinners.
As many of you know, our shop Karleen's Ideas started with making weighted blankets, lap pads, vest and other Sensory Items to help Special Needs children. We have grown over the years to include other Sewn Items, Jewelry, Wall Art, Shell Art and Sensory, Therapy & Social Toys. We have a great selection of Fidgets - Spinners, Cubes, Bracelets, Rings, Tangles, Chew Tubes, Pencils, Balls, etc....all great for fidgeting. The key is to know what item works best for different senarios, whether the child is at home, school, a baseball game, etc.....different fidgets may work better in different places. For example a child may like using a chewy tube at home but a chewy pencil topper may work better at school.
Having 3 sons with Autism, I understand that the schools need to understand our children need to fidget. But we as parents need to understand that typical child have a right to an education without being distracted. My children's right to fidget does not trump a typical child's right to an education. This is where Special Needs Parents need to pick and choose our battles. Yes our children should have the right to fidget but our children do not have the right to disrupt class. Now if spinners were the only fidget available, then my views would be different but spinners are not the only fidget available. Hell when Donald was in elementary school his only fidget was velcro under his desk and a bungee cord on his chair and it worked. Parents should be thankful we have so many more options now and many of them do not disrupt the class.
My point is, appreciate that we have more options and choose a fidget that does not disrupt other children. I agree with the schools, spinners should not be allowed in class!! With that said they should be allowed at recess. I have seen many comments from Special Needs Parents saying "typical kids should not be allowed to use them"........."It is not fair that they are sold as toys"........."why do regular kids have to ruin it for our kids".... and other things like that. Seriously??? They are sold as toys because they are a toy, a fidget toy yes, but still a toy. I think it is great that there is a toy that ALL children like and that is bringing kids together. The child that stays alone at recess may now have kids talking to him/her about spinners, showing each other tricks, trading and having fun. Spinners could be a great opener for future friendships!!!
The attitude of 'us verses them' has to stop!!!! To the parents who want to insist their child can use a fidget spinner even though it distracts the class, you are setting your child apart from the class. We need to find the middle ground to help our children and not promote separation. Fidget cubes are a great middle ground, they can fidget and not distract the other kids. Demanding your child can use one will only make it harder to fit in. We all need to work to bring our children together not serarate them!!
Wednesday, March 29, 2017
Rocktopia
Last night was the most amazing experience for our Donald!!! He sang in the Choir for Rocktopia, we are so proud of him for all that he has achieved. During the concert Karl struggled with being overstimulated by the loud music and lights. At one point during the concert, I looked at Karl & Kyle next to me and Donald on stage and realized that I was dealing with all stages of anxiety from Autism all at once and figured it would make a good blog.
On different online forums, we all see posts, questions and memes about Autism. When I see questions about a topic that I have helped the boys with, I comment. Lately I have been getting bashed by other Autism Parents and adults with Autism. Many stating that I have no idea what Autism and or SPD is, that I should be more understanding, go easier on the boys and allow them to live in their own world. Karl saw the comment about living in their own world and said "I live in the real world and my own world when needed." He is 10 years old and realizes that he needs to be able to cope with living in the real world and he is glad that I try to help other parents with my techniques. I am sorry but way too often I hear, "my child cannot do .... because he/she has Autism." It breaks my heart to hear that as I heard my boys wouldn't be able to do many things and they are doing them because I kept trying new techniques to help them cope. I know not every technique will help every child, the key is to never stop trying new techniques.
Back to Rocktopia - A few weeks ago, Donald got a message about being in a choir for an upcoming concert. All he needed to hear was that it consisted of Classical and Classical Rock, he was hooked. After the first rehearsal I asked, on a scale of 1 to 10, how excited are you? He said "Mom the scale is broken, this is going to be so lit." This was quite different from the Donald I knew 7 years ago!!!! Seven years ago when we lived in RI, Donald's Chorus group sang the National Anthem for a Providence Bruins game. After they sang we were in the stands watching the game, watching Donald try to be excited and deal with the noise made for a very interesting game. I have a video of him clapping, covering his ears with his hands, then clapping, then covering, etc.... We watch that video now and all we can do is laugh. Pushing Donald out of his comfort zone with my techniques over the years took Donald from covering his ears to singing on stage with an orchestra right in front of him, lights everywhere, loud rock music, cheering crowds, etc..... all the while he is handling it all without issue. He is on cloud one thousand today from the amazing experience :) I wish I knew a stronger word for proud!!!!
Now while I am tearing up with tears of pride watching Donald on stage, I am also holding Karl who is struggling. The day before the concert Karl was adamant that he was not going to the concert. He had every reason lined up, he yelled at me that there was no way he would attend and he begged me to let him stay home. While there was a large part of me that wanted to protect him and let him stay home, a larger part knew that I had to help him work through his fears and anxiety to experience something amazing. I talked with Karl about his worries and how I would be there to help him work through them, so he agreed to go. Last night we had to bring Donald dinner and clothes, the boys and I had an extremely long wait for the concert to begin, then there were technical issues which delayed entry. Luckily Karl carrying a backpack that weighed over ten pounds helped him regulate. After we were allowed to enter, we went to our seats, let the boys look around, then walked around the hallways for a bit to walk off some pent up energy. We planned our seats so we were on the aisle and the wall was behind us so he didn't have to worry about being in the middle of the crowd.
Then the concert began and Karl shut down emotionally. He had a blank stare, I got his attention and signed "are you OK?" he said "No." I pulled out the ten pound family lap pad and the thick earmuffs. He got better for a bit. Then he put his head in his lap and was crying, the lights were hurting him. At first he used the lap pad to block the lights, then he used the earmuffs. I knew he wanted to leave, I wanted to give in but felt this was too important, that we had to stay. I held him and he would squeeze my hand when it was too much. Slowly he started to take interest in the music. During intermission, I went against my norm and allowed him to play Candy Crush to relax. We talked about how he had been feeling and that it was worth trying to get through the second half of the concert and he agreed.
Well during the second half, he was a different child. He was watching more of the concert, singing and then playing an air guitar, rocking out to the music. My heart leaped with joy, had tears of happiness but most of all he was having fun. After the concert Karl and I talked about how he felt during the first half and he said he was glad we stayed. This morning I asked him if he would go to another Rocktopia concert and with excitement in his eyes and voice he yelled "YES."
While I was helping Karl cope, Mike was with Kyle. By the time Kyle was born, I had learned a lot about Autism and had started creating techniques to help Karl and Donald cope with Autism, OCD, ODD and SPD issues. This allowed me to apply those techniques very early with Kyle which means he has less issues at the age of eight then Karl and Donald did. Before the concert Kyle did have a temper from his anxiety but was excited about the concert so he pushed through. Kyle did not have any anxiety during the concert. He loved the concert!!! After he was oversensitive and had a meltdown from being tired but things quickly got better with Mom cuddle time :)
It is so easy to sit behind a computer and accuse someone of being mean, not understanding Autism, that they don't get Sensory Processing Disorder because you feel their techniques will not work. But when that parent says it has helped her three sons with Autism overcome many obstacles maybe, just maybe she knows what she is doing and maybe she can help you and your child. I would have loved for someone to post techniques that help. Sadly all to often posts and blogs are only about how hard it is to raise a child with Autism, reasons why meltdowns should be allowed, why their child cannot do a task, etc... when there are ways to help. If you feel something won't help your child, fine but there is no need to bash someone when it helps their child and many others.
I am hoping that after reading this blog you can understand that there are ways to help children with Autism cope in the real world. That keeping them home in fear of what might happen only enables them to not try new things. Our children need to try new things, experience events, go to the store, go swimming in the ocean, discover their own interests and most of all LIVE.
Every child with Autism should have the chance to go from covering their ears in a crowd to singing on stage at a Rocktopia concert.
Thank You to Camille & Ann for inviting Donald to be in the Choir!!!
A Heart filled Thank You to Rocktopia for bringing your amazing talents to Maine, allowing my boys to have the most unforgettable first concert experience.
If Rocktopia is coming to your area, I highly recommend you go, it is the most Amazing Concert11!
On different online forums, we all see posts, questions and memes about Autism. When I see questions about a topic that I have helped the boys with, I comment. Lately I have been getting bashed by other Autism Parents and adults with Autism. Many stating that I have no idea what Autism and or SPD is, that I should be more understanding, go easier on the boys and allow them to live in their own world. Karl saw the comment about living in their own world and said "I live in the real world and my own world when needed." He is 10 years old and realizes that he needs to be able to cope with living in the real world and he is glad that I try to help other parents with my techniques. I am sorry but way too often I hear, "my child cannot do .... because he/she has Autism." It breaks my heart to hear that as I heard my boys wouldn't be able to do many things and they are doing them because I kept trying new techniques to help them cope. I know not every technique will help every child, the key is to never stop trying new techniques.
Back to Rocktopia - A few weeks ago, Donald got a message about being in a choir for an upcoming concert. All he needed to hear was that it consisted of Classical and Classical Rock, he was hooked. After the first rehearsal I asked, on a scale of 1 to 10, how excited are you? He said "Mom the scale is broken, this is going to be so lit." This was quite different from the Donald I knew 7 years ago!!!! Seven years ago when we lived in RI, Donald's Chorus group sang the National Anthem for a Providence Bruins game. After they sang we were in the stands watching the game, watching Donald try to be excited and deal with the noise made for a very interesting game. I have a video of him clapping, covering his ears with his hands, then clapping, then covering, etc.... We watch that video now and all we can do is laugh. Pushing Donald out of his comfort zone with my techniques over the years took Donald from covering his ears to singing on stage with an orchestra right in front of him, lights everywhere, loud rock music, cheering crowds, etc..... all the while he is handling it all without issue. He is on cloud one thousand today from the amazing experience :) I wish I knew a stronger word for proud!!!!
Now while I am tearing up with tears of pride watching Donald on stage, I am also holding Karl who is struggling. The day before the concert Karl was adamant that he was not going to the concert. He had every reason lined up, he yelled at me that there was no way he would attend and he begged me to let him stay home. While there was a large part of me that wanted to protect him and let him stay home, a larger part knew that I had to help him work through his fears and anxiety to experience something amazing. I talked with Karl about his worries and how I would be there to help him work through them, so he agreed to go. Last night we had to bring Donald dinner and clothes, the boys and I had an extremely long wait for the concert to begin, then there were technical issues which delayed entry. Luckily Karl carrying a backpack that weighed over ten pounds helped him regulate. After we were allowed to enter, we went to our seats, let the boys look around, then walked around the hallways for a bit to walk off some pent up energy. We planned our seats so we were on the aisle and the wall was behind us so he didn't have to worry about being in the middle of the crowd.
Then the concert began and Karl shut down emotionally. He had a blank stare, I got his attention and signed "are you OK?" he said "No." I pulled out the ten pound family lap pad and the thick earmuffs. He got better for a bit. Then he put his head in his lap and was crying, the lights were hurting him. At first he used the lap pad to block the lights, then he used the earmuffs. I knew he wanted to leave, I wanted to give in but felt this was too important, that we had to stay. I held him and he would squeeze my hand when it was too much. Slowly he started to take interest in the music. During intermission, I went against my norm and allowed him to play Candy Crush to relax. We talked about how he had been feeling and that it was worth trying to get through the second half of the concert and he agreed.
Well during the second half, he was a different child. He was watching more of the concert, singing and then playing an air guitar, rocking out to the music. My heart leaped with joy, had tears of happiness but most of all he was having fun. After the concert Karl and I talked about how he felt during the first half and he said he was glad we stayed. This morning I asked him if he would go to another Rocktopia concert and with excitement in his eyes and voice he yelled "YES."
While I was helping Karl cope, Mike was with Kyle. By the time Kyle was born, I had learned a lot about Autism and had started creating techniques to help Karl and Donald cope with Autism, OCD, ODD and SPD issues. This allowed me to apply those techniques very early with Kyle which means he has less issues at the age of eight then Karl and Donald did. Before the concert Kyle did have a temper from his anxiety but was excited about the concert so he pushed through. Kyle did not have any anxiety during the concert. He loved the concert!!! After he was oversensitive and had a meltdown from being tired but things quickly got better with Mom cuddle time :)
It is so easy to sit behind a computer and accuse someone of being mean, not understanding Autism, that they don't get Sensory Processing Disorder because you feel their techniques will not work. But when that parent says it has helped her three sons with Autism overcome many obstacles maybe, just maybe she knows what she is doing and maybe she can help you and your child. I would have loved for someone to post techniques that help. Sadly all to often posts and blogs are only about how hard it is to raise a child with Autism, reasons why meltdowns should be allowed, why their child cannot do a task, etc... when there are ways to help. If you feel something won't help your child, fine but there is no need to bash someone when it helps their child and many others.
I am hoping that after reading this blog you can understand that there are ways to help children with Autism cope in the real world. That keeping them home in fear of what might happen only enables them to not try new things. Our children need to try new things, experience events, go to the store, go swimming in the ocean, discover their own interests and most of all LIVE.
Every child with Autism should have the chance to go from covering their ears in a crowd to singing on stage at a Rocktopia concert.
Thank You to Camille & Ann for inviting Donald to be in the Choir!!!
A Heart filled Thank You to Rocktopia for bringing your amazing talents to Maine, allowing my boys to have the most unforgettable first concert experience.
If Rocktopia is coming to your area, I highly recommend you go, it is the most Amazing Concert11!
Friday, January 20, 2017
The Hate Needs to Stop!!
As a Mom I have worried about my children but I did not lived in fear, as an Autism Mom, I worry and have a few fears, well that all changes this afternoon when Mr. Trump is sworn in. For the first time since I heard the word Autism 11 years ago, I have great fear for my sons future, for their freedom, education and protection from others. I have seen so much hate with this election, it scares me. BTW it is on both sides, not just one side.
While part if me wants to posts all of Trump's shortfalls to try to get others to understand why everyone needs to be concerned, I won't because it won't help. All the posts do is promote arguments, name calling and hate. While there have been times I was able to have healthy debates with Trump supporters as I tried to understand why they felt Trump was a good choice. Please note, I did try to understand, I searched, and searched trying to find one good plan of his that would give me a bit of hope that he will be a good President. Sadly most of my debates turned nasty from the other side, I was called things I would never even call my worst enemy. The worst part of that was some that I thought were my friends allowed it to happen. I am all for a healthy debate but the hate was too much for me.
The hate in this country is what is destroying America, THE HATE NEEDS TO STOP!!!
For 8 years I have watched many blame Obama for everything wrong in their life. It feels like America saw two different President Obama. For a long time I have been wondering how is it, so many see him so differently. Last night looking at many different post comments about the Obama's leaving the white house, it came to me. Most people see what they want to see, they understand their single view of the topic and refuse to acknowledge other possibilities. Not many have the ability to look at both sides and see the bigger picture. Maybe it is because of my upbringing, being so sick, having to be wallflower, and by being a survivor, I have a very different perspective on life, my views on topics are out of the box, hell most of the time I destroy the box. One of the big topics Trump supporters keep stating it is Obama's fault that there are so many mass shootings nowadays. I have read many arguments on this topic and read many reasons why everyone thinks it is Obama's fault and it seems many miss the fact that Obama was not holding the gun, therefore it is not his fault.
America also needs to face the fact that one person is not responsible for another's choice. I grew up in a house with parents that were prejudice towards others. Does that mean that I grew up being prejudice? Hell no, I grew up the direct opposite. I spent most of the first 4 years of my life in a hospital, I am a survivor of every form of abuse, I was molested by 2 different people for years before I was 8 and I was raped by a boyfriend at 17, do I blame my shortfalls on them, no. Do I blame them for things that go wrong in my life, no. It happened, it sucked and yes it is still hard to overcome some of the shit I went though but I do my best to be a good person. While my experiences left me with a lot of insecurities, it also left me with a very different perspective of life. I look for the best in life, I find the silver lining to the clouds, I own who I am and what I have done and do not blame anyone or anything for my decisions. Now what could be the silver lining of my childhood hell?? Easy, my perspective on life has helped me help my children. The roadblocks of so many illnesses have helped me realize that the diagnosis of Autism does not limit my sons future, it does not define who they are or that no matter what, they can and will be independent. No President, friend, foe or even my parents created who I am today. I created me by the choices I made in life, I am the one that is accountable for my actions, not the President, not my parents, me. I think that is something Society needs to understand, no one makes the choice for you, you make your own choices. In high school I drank, I drank a lot to try and hide from the hate and abuse form my mother. I was making a bad choice, many would say it was her fault, that telling me daily how ugly I was and how she hated me and wished she had aborted me would be a good reason to drink, but it wasn't. Then one day I was so depressed I drank a bottle of vodka in an hour, passed out and couldn't remember a thing the next day. After the hangover, I thought about how I felt, I knew I could not continue down that path so I made the decision that I would not drink when I am depressed. It can be hard at times but for the most part I have kept to that decision. Have I slipped up a couple of times? Yes I am human and I make mistakes but I hold myself accountable. Who I am today was not decided by the actions of others, it was because of the choices I have made, some good, some bad but in the end, I do not blame others, I just do the best I can to be a good person and to help others.
America also needs to face the fact that one person is not responsible for another's choice. I grew up in a house with parents that were prejudice towards others. Does that mean that I grew up being prejudice? Hell no, I grew up the direct opposite. I spent most of the first 4 years of my life in a hospital, I am a survivor of every form of abuse, I was molested by 2 different people for years before I was 8 and I was raped by a boyfriend at 17, do I blame my shortfalls on them, no. Do I blame them for things that go wrong in my life, no. It happened, it sucked and yes it is still hard to overcome some of the shit I went though but I do my best to be a good person. While my experiences left me with a lot of insecurities, it also left me with a very different perspective of life. I look for the best in life, I find the silver lining to the clouds, I own who I am and what I have done and do not blame anyone or anything for my decisions. Now what could be the silver lining of my childhood hell?? Easy, my perspective on life has helped me help my children. The roadblocks of so many illnesses have helped me realize that the diagnosis of Autism does not limit my sons future, it does not define who they are or that no matter what, they can and will be independent. No President, friend, foe or even my parents created who I am today. I created me by the choices I made in life, I am the one that is accountable for my actions, not the President, not my parents, me. I think that is something Society needs to understand, no one makes the choice for you, you make your own choices. In high school I drank, I drank a lot to try and hide from the hate and abuse form my mother. I was making a bad choice, many would say it was her fault, that telling me daily how ugly I was and how she hated me and wished she had aborted me would be a good reason to drink, but it wasn't. Then one day I was so depressed I drank a bottle of vodka in an hour, passed out and couldn't remember a thing the next day. After the hangover, I thought about how I felt, I knew I could not continue down that path so I made the decision that I would not drink when I am depressed. It can be hard at times but for the most part I have kept to that decision. Have I slipped up a couple of times? Yes I am human and I make mistakes but I hold myself accountable. Who I am today was not decided by the actions of others, it was because of the choices I have made, some good, some bad but in the end, I do not blame others, I just do the best I can to be a good person and to help others.
So to all those that want to blame Obama for mass shootings, stop! Put the blame where it belongs, the person holding the gun. They made the wrong choice and deserve to be punished for it. But you blaming Obama for what the shooter has done, is you making the choice to spread hate for Mr. Obama when Mr. Obama didn't even know the shooter. And you and others spreading hate for Mr. Obama is not resolving or proving anything, it is just creating more hate, so STOP!
Soon Mr. Trump will become my President, while my stomach is twisted with stress about it, I will not bash him, I will not put him down because I want the hate to stop. For everyone that does not support Mr. Trump, please do not act as many did towards Mr. Obama. No matter who is President, it is up to every individual to make the a decision - Do you want the hate to continue or do you want it to stop? If you see a post that upsets, you have three choices, spread hate, ignore it or look into how you can help those affected by the post. No ones controls your response but you!! I for one will be ignoring or finding ways to help, but if I do see hateful comments I may reply with -
#TheHateNeedsToStop
Soon Mr. Trump will become my President, while my stomach is twisted with stress about it, I will not bash him, I will not put him down because I want the hate to stop. For everyone that does not support Mr. Trump, please do not act as many did towards Mr. Obama. No matter who is President, it is up to every individual to make the a decision - Do you want the hate to continue or do you want it to stop? If you see a post that upsets, you have three choices, spread hate, ignore it or look into how you can help those affected by the post. No ones controls your response but you!! I for one will be ignoring or finding ways to help, but if I do see hateful comments I may reply with -
#TheHateNeedsToStop
Wednesday, November 9, 2016
Numb with Nerves
I could barely sleep last night worrying about the election results. Mike kept telling me not to worry but my gut was telling me something very different. Then around 6am I looked at my phone and my nightmare was true, Donald Trump was elected President. So many things went through my head, wondering how we are going to tell the boys, how we will assure them everything will be OK and how I will do it while keeping my emotions in check.
You may be wondering why our boys would be so affected by the election results, well our boys are not your average children. Growing up with Autism has given them a different perspective on life, just as my childhood gave me a different perspective on life. The boys have been watching and learning during this election, some has been good, some bad and some very bad. Early on in the election, the boys did not like Trump, they had a bad feeling about him. While we did try to keep a lot of the bad stuff away from the boys, they did hear some things from Trump videos. Each time, they would be very upset with his words. They would say he is mean, that he should respect woman and that he is a bully. My boys know what a bully looks like as they have had to deal with them, just like every woman survivor knows Trump is an abuser as we have dealt with them. Mike and I have raised the boys to respect woman and to treat them right, so we were proud that they knew Trump's behavior was wrong. What concerned us was that Trump supporters didn't.
When the boys got up this morning, we told them. Donald didn't believe us and K&K were upset. Karl cried, he said, "all my wishes and prayers were wasted." My heart broke as I asked him what he meant. He said "every 11:11 he wished Trump would lose and he prayed to God that he would lose." He asked to stay home, then Kyle asked to stay home also, we said they could. We turned on the cartoon Skylanders for a couple of episodes to let them relax for a bit. Then we asked them what their fears were. Kyle didn't really have any fears but did not like that Trump won. Karl worried about the wall, Trump being mean but he mostly feared what will happen to therapies for children. See Karl understands how much his Early Intervention helped him, he understands how important therapy is and he fears that since Trump mocks people with Special Needs that he will not want to help them like Hillary wanted to help. At age 10 Karl is so wise, he has the ability to see the bigger picture even when he doesn't understand it all, he takes after me like that. This ability can be a blessing and a curse, it gives us the ability to see both sides of situations but it also shows us how things can go horribly wrong, luckily it also gives us time to prepare. Knowing that Karl was feeling the same feelings I had been feeling, I explained to the boys that everything would be OK. I explained that I had the same fears as Karl, that the support for children with Autism would be decreased and that Autism acceptance may get harder but not to worry. I explained to them that our shop opened just in time to help families, I reminded them that all the toys we sell are Sensory, Therapy and Social based and that we can teach parents how to help their children like we helped our boys. We also talked about how as a family we have overcome many obstacles and that we will continue to do so.
Then we turned our talk to respecting Mr. Trump. We talked about the fact that while we like President Obama, there are many that did not approve of him and bashed him every chance they could. Mike and I explained to the boys that there will not be any Trump bashing in our house and that we will respect Mr. Trump as our President even if we do not agree with him or his actions. We explained that no matter what we would protect the boys, that I may have to become a more vocal Autism Activist and that together we can do anything. We talked about how we can do our part to make America great again by being good to others.
Now for my message to America - No President can make America great again!!!!!! Only Americans can make America great!!!!
Ways to do that are:
Stop bashing others!
Stop putting other down!
Stop judging!
Stop assuming!
Let people have their own opinion!
Be supportive!
Be Caring!
Be understanding!
Accept Difference!
Shop Local!
Look for the positive!
Get off your computer more!
Be friends in real life, not just online!
Stop complaining and start living!
I could go on and on but I think you get the idea;)
Embrace Autism
You may be wondering why our boys would be so affected by the election results, well our boys are not your average children. Growing up with Autism has given them a different perspective on life, just as my childhood gave me a different perspective on life. The boys have been watching and learning during this election, some has been good, some bad and some very bad. Early on in the election, the boys did not like Trump, they had a bad feeling about him. While we did try to keep a lot of the bad stuff away from the boys, they did hear some things from Trump videos. Each time, they would be very upset with his words. They would say he is mean, that he should respect woman and that he is a bully. My boys know what a bully looks like as they have had to deal with them, just like every woman survivor knows Trump is an abuser as we have dealt with them. Mike and I have raised the boys to respect woman and to treat them right, so we were proud that they knew Trump's behavior was wrong. What concerned us was that Trump supporters didn't.
When the boys got up this morning, we told them. Donald didn't believe us and K&K were upset. Karl cried, he said, "all my wishes and prayers were wasted." My heart broke as I asked him what he meant. He said "every 11:11 he wished Trump would lose and he prayed to God that he would lose." He asked to stay home, then Kyle asked to stay home also, we said they could. We turned on the cartoon Skylanders for a couple of episodes to let them relax for a bit. Then we asked them what their fears were. Kyle didn't really have any fears but did not like that Trump won. Karl worried about the wall, Trump being mean but he mostly feared what will happen to therapies for children. See Karl understands how much his Early Intervention helped him, he understands how important therapy is and he fears that since Trump mocks people with Special Needs that he will not want to help them like Hillary wanted to help. At age 10 Karl is so wise, he has the ability to see the bigger picture even when he doesn't understand it all, he takes after me like that. This ability can be a blessing and a curse, it gives us the ability to see both sides of situations but it also shows us how things can go horribly wrong, luckily it also gives us time to prepare. Knowing that Karl was feeling the same feelings I had been feeling, I explained to the boys that everything would be OK. I explained that I had the same fears as Karl, that the support for children with Autism would be decreased and that Autism acceptance may get harder but not to worry. I explained to them that our shop opened just in time to help families, I reminded them that all the toys we sell are Sensory, Therapy and Social based and that we can teach parents how to help their children like we helped our boys. We also talked about how as a family we have overcome many obstacles and that we will continue to do so.
Then we turned our talk to respecting Mr. Trump. We talked about the fact that while we like President Obama, there are many that did not approve of him and bashed him every chance they could. Mike and I explained to the boys that there will not be any Trump bashing in our house and that we will respect Mr. Trump as our President even if we do not agree with him or his actions. We explained that no matter what we would protect the boys, that I may have to become a more vocal Autism Activist and that together we can do anything. We talked about how we can do our part to make America great again by being good to others.
Now for my message to America - No President can make America great again!!!!!! Only Americans can make America great!!!!
Ways to do that are:
Stop bashing others!
Stop putting other down!
Stop judging!
Stop assuming!
Let people have their own opinion!
Be supportive!
Be Caring!
Be understanding!
Accept Difference!
Shop Local!
Look for the positive!
Get off your computer more!
Be friends in real life, not just online!
Stop complaining and start living!
I could go on and on but I think you get the idea;)
Embrace Autism
Sunday, March 27, 2016
More than a Gift Shop
My shop
sign says Karleen’s Ideas ‘Gift Shop’ but Karleen’s Ideas is so much more than
a gift shop. I have combined my love for
children & my love for creating to help Special Needs families and to make
unique gifts for everyone.
My
parents told me that even when I was sick in the hospital I always wanted to
play & help the other children in the hospital, I am happy to say that I
never outgrew wanting to help others. Now 43 years later God has blessed me
with 4 amazing children even though Doctors thought that would be impossible.
My daughter is typical, well as typical as any child can be, LOL and our 3 sons
have Autism. From the moment Dr. Singer said that Donald should be tested for
Autism, I have been eager to learn the best ways to help him and then his
brothers. About 8 years ago Donald’s OT asked me if I could try to make a
weighted blanket at reasonable prices as she knew I could sew. I looked at some
examples of weighted blankets and did a lot of research before I designed my
weighted blankets. Over the years I have tweaked my technique but one thing
that has not changed is that they are made with love. While there are many
companies that are making millions selling weighted blankets, I am not making
those millions as I am not making them to get rich, I am making them to help
children. Shortly after I started making weighted blankets, I created pressure
tubes, weighted lap pads, weighted shawls, sensory bags, sensory blankets and
fidget strips. I will not have a large number of items in stock as most items
are custom made for the child/adult that needs them. I believe it is more
important to make a weighted blanket to what a person likes and what their
interests are instead of them just getting what is in stock. I work with parents to create the perfect
weighted blanket or sensory item for each child.
Years
later to help bring awareness to Autism and other diseases, I started to make
awareness bracelets. I found making jewelry relaxing so I started to created
theme jewelry, then I found myself just looking for unique beads to make other
styles of jewelry, lots of jewelry so much jewelry I opened Karleen’s Ideas at
our house on December 11, 2011. Wanting to fill the porch with more items, I
started creating items with the fabric scraps from the weighted blankets. I
started making fabric gift bags, hats, neck warmers, Christmas Stockings, etc….
Now almost 4 ½ years later Karleen’s Ideas outgrew my porch so we have moved the
shop to a retail space in Kennebunkport. Over the past few weeks I have painted
walls, built cube organizers, arranged displays and setup all the merchandise.
I am so happy to have the shop out of the house as I can now carry more Sensory
Items & carry Therapy Toys to help more children and parents. As I said Karleen’s Ideas is more than a Gift Shop, at Karleen’s Ideas you will find many Shell Crafts, Jewelry, Christmas Stockings, Hats, Neck Warmers, Dream Catchers, Wind Chimes, Awareness Items, Sensory items and Therapy Toys. You will also find me ready to help you find or design the perfect gift for your loved one, help you find the perfect sensory item, help you create a sensory diet for your child or yourself and to help you understand your sensory based child. In the near future I will be having workshops to help parents. It was always a dream of mine to have my own store, Karleen’s Ideas is not only my dream come true, it is a future for my sons. Adults with Autism have a difficult time keeping a typical job so there will be times you will see the boys working at the shop so they can learn how to run a business. Working at the shop will also help them with social situations, they will learn to be independent, learn to work together and learn how to help others.
So when you need a special gift, a weighted blanket, sensory item or therapy toys, I hope you stop by Karleen’s Ideas.
Grand Opening is April 1st as it is the perfect way to start Autism Awareness Month.
Karleen's Ideas
24 Ocean Ave.
Kennebunkport
Sunday, June 7, 2015
Small Breakthrough
Karl struggles with understanding what the right choice is most of the time. Many times he makes the wrong decision because he is confused about what is right and what is wrong. While I do my best to teach him right from wrong, it is hard for him to understand as he sees his peers break the rules, at times peers have played tricks on him by telling him to do the wrong thing or because it a confusing situation. We have been working with him on this topic, trying social stories, explaining what he should do and recently I have been using movies to help.
When we watch a movie where a character makes a bad decision, I pause the movie and talk with Karl and Kyle. I ask them if the decision was good or bad. They usually understand it was a bad decision, so I ask why it was a bad decision. They give me examples and are usually spot on. So then I ask them what could be some consequences from that bad decision, they have fun trying to figure out what is going to happen n the movie. Then we watch the movie, pausing now and then to discuss their answers verses what happened and discuss what could happen in real life.
Last night I came home and he ran up to me, this was our conversation:
K - "Does Amazon cost money to watch a movie?
Me - "Yes, some movies cost money. Why?
K - "I was looking for a movie, I found one and clicked on it. I saw it would cost money and thought:
Mommy will be mad at me
I will get in trouble
I will get grounded
So I shut Amazon off and went on Netflix."
Me - "I AM SOOO PROUD OF YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I picked him up an held him so tight :)
Saturday, March 14, 2015
Fears and Helping Others
Karl has a fear of being picked up or carried, not having something under his feet is extremely upsetting to him. He use to scream at the top of his lungs if I picked him up so I have been working with him on this for 6 years. I would pick him up for a minute, he would scream at first but with time he found he was safe and did not scream so I would extend the time each time I held him. Now he will let me carry him for a few minutes so I do little things like twirl with him in my arms to make him laugh. We have come a long way in 6 years but he still gets nervous now and then.
Today at Walmart a gentleman was having a hard time reaching an item on the top shelf, he was about to step on the bottom shelf to reach it. I offered to help him but it was too far back for me to reach. I warned the gentleman not to stand on the shelves as he would fall. he suggested that I could pick up one of the boys for which I agreed. I figured Karl was the best choice as Donald is too heavy and Kyle's arm are too short.
We asked Karl, he got scared and went to hide, I stopped him, and explained to the gentleman that Karl had Autism. I then explained to Karl that by letting me pick him up we would be helping someone and that would be the right thing to do. He agreed and let me pick him up, although this time I had to left him higher then I have ever lifted him. He was shaking but didn't say a word, he just reached for the items, brought them forward and turned to hold my shoulders as I put him down. I had tears filling my eyes as I was so proud that he put his fears aside to help a stranger. The gentleman seemed confused why this meant so much to me and why I praised Karl so much. I explained Karl's fears to him, you could see on his face that he really appreciated what Karl did for him and repeatedly thank Karl. Karl turned with an 'aw shucks' attitude saying your welcome.
Sunday, March 8, 2015
Embrace Autism don't fight Autism!!
Over the next few weeks everyone’s social media will be flooded with ‘light it up blue’ posts, but you will not see those posts on my pages as I will never support Autism $peaks. April 2 is World Autism Awareness Day but A$ has hijacked that day as ‘light it up blue’ so everyone tends to wear blue to show support for Autism. Bright blue is NOT the awareness color for Autism, it is the awareness color for A$. The awareness colors for Autism are red, navy blue, yellow & aqua.
Many think that because A$ brings awareness to Autism that it is OK to support them, that because they do research it is OK to support them and that because they are the largest Autism organization that they are the best organization to support. Being the largest organization does not make them the best organization to support, it just means that they have great fundraising skills with 22% of the funds raised going right to fundraising costs with only 4% of funds raised going to family services. Please remember that most of their money goes to research not helping families (some of their research upsets me so much I cannot write about it), As for Autism Speaks mission & research many really need to do their research to make sure they want to support Autism Speaks.
A$ Mission: From their website –
"At Autism Speaks, our goal is to change the future for all who struggle with an autism spectrum disorder.
We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families, and society: and we work to bring hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.
Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle."
From their mission statement – “We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism.”
Two words in that sentence disturb me the most – prevention and cure – If I had found out during my pregnancy that Donald would have Asperger’s I would still have him as I still had Karl. Donald started the dx process while I was pregnant with Karl so I knew there was good chance Karl had Autism. I knew I was right when Karl was 6 weeks old as he was ‘too good’ and doctors started seeing signs of Autism at 12 months. Now I had two children in the dx process and thinking about trying for another, we had no worries about having another child with Autism, no thoughts about preventing Autism because at this time we had already embraced Autism. Next thing we knew, we were expecting Kyle, Kyle was 6 weeks old when Dr. Y dx’d Donald and Karl. She then looked at Kyle and said “we are watching you now” and we started laughing. Kyle was diagnosed with HFA just before his third Birthday. As for cure – my sons are not sick, they do not need to be cured!!!
“Autism Speaks aims to bring the autism community together…..”
I have never seen a time when A$ aims to bring the Autism community together, especially since they do not listen to what adults with Autism have to say. They seem to go out of their way to ignore what people with Autism have to say. If they truly wanted to bring the Autism community together they would listen to those that have Autism!!
What they say during speeches has a
different story from their mission. Saying things like:
"Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house. That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes? Climb the furniture? Raid the refrigerator? Sometimes – the silence is worse.
These families are not living.
They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely - 24/7."
While I agree Autism parents wake to children bounding through the house but so do MANY typical parents. All children have times when they wake before their parents, get into things and create chaos. Does it take Autism children longer to learn to not create chaos, yes it takes longer but it can be done. Before anyone states that I do not understand how hard it can be, rest assured I do understand. We had to have locks on all our windows & doors for Karl as he was an escape Artist. But through the years he learned to come into my room upon waking and now he plays quietly in his room as he likes to let me sleep in now & then. As for Autism parents barely sleeping – most typical parents barely sleep, so what is the difference? Sorry but the only well rested parents I have ever seen are one that have nannies. As for stripping his clothes off, Karl did that too, there was a 4 month time period that I redressed Karl 30 times a day until he learned that he had to keep his clothes on. Raid the refrigerator – every child raids the refrigerator. Silence – EVERY parent in the world dreads silence as we all know are children are getting into something they shouldn’t. Now before you get mad at me for my comments, please realize I am not making light of the issues as they are real issues, I am simply pointing out that ALL parents deal with these issues and that sometimes a child with Autism has typical child behavior, it is not always because of Autism. Too many Autism parents forget that their child has a typical side too.
The part of that speech that really bothers me is - “These families are not living.
They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely - 24/7.”
Where is the ‘hope’ they speak of in their mission in that statement? Sorry but if an Autism family is only existing and not living, well that is their choice, it is not Autism’s fault. I will say that events and such can be hard to do when you have a child with Autism but it is not impossible. I have 3 sons with Autism and I can take them shopping, to the movies, town events, etc.......It takes a LOT of planning, trial & error and even some meltdowns for them to learn how to cope in new environments but they did it because I pushed them to do so. If you do not try and sometimes try many times then you will never succeed.
“And if you know autism, you know we are looking at a monumental health crisis. And, we have no national plan.”
Autism is not a monumental health crisis as Autism in not a disease.
“In the next ten years, 500-thousand Americans with autism will be growing up and out of the system which means they will no longer qualify for the services they rely on every day.
And, what about their parents? How much can we ask them to handle? How long will it be before the exhaustion makes them ill? How long before they break?
And, if they do – who cares for these children?”
Again – Where is the ‘hope’ in that statement?? Parents should not be counting on services to take care of their children until doctors and specialists are 100% sure the child will never be independent as the child approaches adulthood. As parents we are our child’s first teacher, we are their therapist when the EI therapist leaves the house, we are their OT in between appointments so it is up to us to teach our children to be independent adults. Granted some may not be able to but most can when their parents teach them. My sons are 6, 8 & 13 and never once have I thought about them having to be on SSI or that they will have to live in a group home. Every minute of every day is about teaching them to be independent adults, granted it is not easy but no one ever said parenting was easy. I do realize that they may have trouble working in a typical environment which is why we have a backup plan. My shop Karleen’s Ideas will be there for them if they need it. Donald is a great salesman and photographer, Karl is the Artist and we can tell Kyle has great business sense to run the business part of the shop.
The above excerpts are from one
speech but many of their other speeches are negative and make Autism seem like
the worst thing that can happen to a child, Autism is not the worst thing that
can happen. My oldest has cried many
times because of the way A$ talks about those with Autism. As you will see in
the chart below 21% of the funds they raise goes towards spreading negative
Autism Awareness. In my opinion Autism
Speaks biggest problem is that they are fighting Autism which is a fight they
are not going to win. They focus their time on finding a cure which in and of
itself is fighting Autism when they should be focusing their time on ways to
help children cope in Society. Parents that spend their time screaming from the
rooftops that there needs to be a cure are the parents that should be using
that time to work one on one with their child. Sorry if it sounds harsh but
instead of spending hours upon hours on social media insisting researchers have
to find a cure, spend that time helping your child achieve his/her next goal.
All too often I hear, you have no idea
how hard it is as your children are high functioning. The first correction I
make is that only two are high functioning, Karl is moderate functioning. The
second correction is that sometimes high functioning can be just as hard as low
functioning. Why? Because many children
and adults that are high functioning feel they know it all and/or have no
desire to learn better, faster or easier ways to accomplish things. Whereas many lower functioning children want to
learn, they want to understand and want to communicate. Having the desire to
learn gives a parent a blank canvas to work with and there are no limits as to
what a child can or cannot do. The worst thing I hear an Autism parent say is
‘my child cannot do that because he has Autism.’ That one statement will be the
very reason why your child will not do that task as you have predetermined what
your child can/cannot do. When A$ gives a speech, their speech is filled with
talk of what a child with Autism cannot do and what Autism parents cannot do so
they are basically telling everyone that there is no hope and your dreams for
your child are gone.
I am here to say your dreams are not gone!!! When a child is born some parents have dreams that their child is going to be a lawyer, a doctor, the President, etc……. I have never understood why parents to that, it creates so much unneeded pressure, not only on the parents but on the child, pressure that even most typical children cannot handle. My dreams for my children have always been that they are able to find their path, their happiness and are respectful & caring to others. Maybe this is why I did not cry when all my sons got their Autism dx and why I did not mourn the future I had dreamed for them. Because their canvas is still blank and my dreams for them are still possible. My Donald says he knows his path and it is theater :)
I am here to say your dreams are not gone!!! When a child is born some parents have dreams that their child is going to be a lawyer, a doctor, the President, etc……. I have never understood why parents to that, it creates so much unneeded pressure, not only on the parents but on the child, pressure that even most typical children cannot handle. My dreams for my children have always been that they are able to find their path, their happiness and are respectful & caring to others. Maybe this is why I did not cry when all my sons got their Autism dx and why I did not mourn the future I had dreamed for them. Because their canvas is still blank and my dreams for them are still possible. My Donald says he knows his path and it is theater :)
So
instead of screaming from the rooftops that we need a cure for Autism, I have
Embraced Autism and I work with my boys every minute of everyday to build upon
their strengths. Is Autism easy? Hell No!!!! But it is not the hardest thing in
life either. The hardest part is dealing with Society and the negative attitude
people have towards Autism. Sadly many
parents make Autism harder than it needs to be, sorry if this offends you but
it is true in many cases. Many parents think that because their child has
Autism they should go easier on their child and allow the child to have bad
behaviors because they feel that their child does not understand what they are
doing wrong. Parents need to always ask themselves ‘will that behavior be
allowed when he/she is 30?’ If the answer is no then the parents need to
correct said behavior. Disciplining a child with Autism is OK to do as they
need to learn that actions have consequences. Some parents do not push their
child out of their comfort zone because it may cause a meltdown or let their
child spend a LOT of time on IPads, gaming systems and computers because that
is the only thing their child wants to do. Lately I have been seeing a LOT of
posts and/or comments about 13 year olds being homebound, some not leaving
their bedroom for months at a time and that the children want to play video
games all day long. Parents asking how they can help their child because they
are lost as to what to do. I know this harsh but it NEEDS to be said “BE A
PARENT.” Parents have to stop letting
their child do what is comfortable all the time and start pushing their child
out of their comfort zone so their child can interact with others. Recently I
was talking to my son’s school principle, explaining how computers are Karl’s
worst enemy and how his teachers are realizing how bad they are for Karl. No
child with Autism should be on a computer, IPad or video games until that child
has learn how to cope in Society and how to interact with others. I get it, video games can be a great way for
our children to ignore what is around them and relax but that is not that is
happening to your child. Your child is learning how to avoid people, how to
hide from the world and how to have no reason to leave their bedroom. (Gaming
systems should never be in a child’s bedroom)
Autism & Asperger’s has been
around forever but only in the past 10 years have Doctors learn how to better
diagnose it, so we have many adults with Asperger’s that have not been diagnosed
or were diagnosed as adults. Most of those adults now have careers, families
and are very successful but many parents of Aspie children fear their child will
not be able to live on their own, sadly A$ encourages this fear. What is the difference between now and 30
years ago?? Computers, IPads & video games!!!
Yes computers can make life
easier but I have never heard anyone say that the easy way was the right way.
IPads – many say that the apps you can get on an IPad are a great way for child
with Autism to communicate but what many do not realize is that the same app
takes away a child’s incentive to learn to communicate for themselves because
the IPad does it all for him/her. I refused all electronics for Karl when he
was nonverbal, something in me screamed that ‘old school’ was the way to teach
Karl. We started with teaching Karl sign language so he would have basic
communication to ask for drinks, food, etc… Then we went onto to picture
exchange so he would have more choices. Every time he gave me a picture, I made
him try to make a sound. Once he got a word, he would not get the wanted items
until he said that word. It got to the point that he did not want to go three
rooms away to get a picture so he started to speak without pictures and we kept
building up his vocabulary from there. Yes an IPad would have made
communication easier but then it is possible that Karl would still be
nonverbal, a chance I was not taking.
Everyone has
choices in life, you can choose how you want to parent, some ways are right and
some ways are wrong. For me, I choose to try to always find the balance. While
I am very understanding to my boys Autism, I also expect them to have proper
behavior. While part of me wants to keep them in their comfort bubble, I know
doing so would be a big mistake as then they will not be able to live
independently so I am always pushing them out of their comfort zone with a
great deal of patience. So I decide all my choices by asking myself how my
choice will affect their future.
When it comes to deciding what Autism organization to support, I look at every factor of that organization to see if their mission & actions have the same morals that I have. I choose not to support A$ because they do not care about my sons feelings (or others with Autism) when they speak negatively about Autism. They do not utilize their funds so the majority of their funds go to helping families. They provoke fear instead of encouraging acceptance. They do not listen to people with Autism, my list can go on and on….
But the main reason I will not support A$ is
that I want my sons to know they are wanted, that they are not diseased, that they
have a bright future, that there are no limits as to what they can accomplish,
that I Embrace their Autism and that I love every part of them, quirks and all :)When it comes to deciding what Autism organization to support, I look at every factor of that organization to see if their mission & actions have the same morals that I have. I choose not to support A$ because they do not care about my sons feelings (or others with Autism) when they speak negatively about Autism. They do not utilize their funds so the majority of their funds go to helping families. They provoke fear instead of encouraging acceptance. They do not listen to people with Autism, my list can go on and on….
April 11 is Embracing The World of Autism Day. Please wear orange to show your support for Autism Acceptance.
Embracing The World of Autism Day facebook page - https://www.facebook.com/EmbracingTheWorldOfAutismDay
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