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 :)  

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.

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 :)

                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 :)




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

Congradulation!! You're....

Grounded!!!

Lately I have been running out of time & patience with the boys - I am spending a lot more time at school, play demands for Donald, business is increasing, Mike is on the road more lately, the house is a mess & Karl and Kyle are getting too old for time out so they have been acting up more. Last week I saw a new form of punishment that is more effective than time outs and will help me with cleaning the house. The photo shows Karl's list that we are working with right now. I am tweaking the projects as they try them, for example it says dinner but for Karl & Kyle that will be changing to breakfast & lunch. The amount of points vary to their age, Kyle 150, Karl 200 and Donald 500.

This week they have been thinking that the points adding up was no big deal so they all have a LOT of points. Now that it is Saturday and they cannot watch TV, use computers or play with toys they see the error of their ways. Since we are about to get a third storm in a week I know they really want to get off groundation so they can have fun during their snow days. So I made them a deal, they all work together to clean both bathrooms top to bottom and they will get off groundation  this time.

I was very clear to them that this is a one time offer as they are still learning the new system. Although I think as we amend the sheets, I will be adding working together projects on each sheet. Working together has been a very hard task for the boys as they each want to be in charge, each thinks they know more than the others and usually they all end up fighting.  Although for the past hour they have been upstairs working together to clean my bathroom and they are not fighting :)

Really hoping this new system works, only time will tell :)

Karleen's Ideas

         Last week was the 3rd Anniversary of the opening of Karleen's Ideas. It was bittersweet  - Sweet because my online sales are up 25% - Bitter because not one local person has walked into my shop in two months. I have tried some many techniques to show locals that Karleen's Ideas is like every other business except for the fact that instead of the shop being at a Shopping Mall it is at my house. I have handed out coupons at parades, create a shop local groups for all local businesses to network, do craft fairs, etc.....I even begged local newspapers to write a story about Karleen's Ideas & Home Occupation, The Village did a great story for me but sadly other papers refused or said they would but didn't. Many have said that I should just close the shop and only do online sales while others have said that I should get a retail spot downtown Kennebunk. My dream is o open a shop that will look like Santa's Workshop as I love to create one of kind gifts that make people smile but sadly for three years I have been in a vicious cycle, locals do not like to shop at home businesses so I cannot buildup the funds to rent a retail space downtown.

Insanity: doing the same thing over and over again and expecting different results.

                                                                      - Albert Einstein

This Spring the vicious cycle will come to an end, I will either find a retail space in another town as Kennebunk retail space is not affordable or I will close Karleen's Ideas shop and only do online sales unless this blog sparks locals to just stop by Karleen's Ideas to see all the beautiful items I have created. I am writing this blog to let locals understand what Karleen's Ideas is all about.

I started Karleen's Ideas a long time ago while we were still in RI, I started it with making Weighted Blankets for children with Autism & SPD. I wanted to help Autism families afford the sensory items their children desperately needed. Over the years I have been adding creations so when we found out that I could do home occupation, I jumped at the opportunity to work from. I thought that since Kennebunk is so big on supporting local businesses and farms it was a great way for me to have a shop and be home for my boys. Well hundreds of cars pass my house weekly yet only about 25 locals have stopped into my shop in three years, if I were to subtract friends then that number drops to 10. Many have said, "It doesn't look like there is a business" (Not allowed under Home Occupation guidelines)- I agree from the outside it does not look like a business, that is because I am not allowed to look like a business. But when you walk into my shop, it looks like a very cute small business with many, many unique creations at every price level. Everyone that has been Brave enough to come in the door loves my shop.

Karleen's Ideas has Jewelry, Shell Art, Christmas Stockings, Sewn Items, Sensory Items, Team Items, etc.....I also do a lot of custom orders so together we create the perfect gift.

At first Karleen's Ideas was so I  could work from home then my dream became that one day I would open a shop downtown for my boys to take over. Having three boys with Autism I worry about how they will be able to support themselves if they cannot or do not get a college degree. Karl & Donald have shown great interest is taking over our shop. Donald loves to sell, if you have seen us at a craft fair then you know he is quite the charmer. Karl loves to create, he takes after me in every way :)  Kyle shows some interest but he is still young so that could change.

If you are one of the many that have said, I always wanted to stop by but for one reason or another did not, now is the time as this may be the last year Karleen's Ideas is open.

 I will never give up trying to open a shop in a retail space but I cannot continue to hope locals will come into my shop at the house.

Karleen's Ideas is open - Monday, Wednesday, Thursday, Friday & Saturday from 12 to 5 (I take two short breaks on weekdays to bring & pickup Donald from MSK, The breaks are from 1:45 to 2 and from 3:50 to 4:05)

Sensory Diets

I am asked all the time - What is a Sensory Diet?? So I thought I should just write a blog to help everyone understand why many children with Autism, SPD, APD &  ADHD benefit from a Sensory Diet.

A Sensory Diet is made up of schedule activities to help a child regulate throughout the day. Many children need sensory breaks every few hours, especially during the school day as it is hard for them to sit still all day long. Sensory Items like weighted lap pads, fidget toys, balance cushions, gum, chew tubes, oral vibrators, velcro, bungee cords, etc.. Activities that can be done to help a child regulate include jumping jacks, pushups against the wall, carrying paper to the office, jog in place, etc...

What sensory items or sensory activities you use will vary for each child, and will depend on whether a child is a sensory seeker, sensory avoider or both. Sometimes it takes a lot of trial and errors to find what will work best for your child, here are some ideas to help narrow down what a child may need.

Child  that chews on clothing, pencils and/or other nonfood items - Many times when a child chews on nonfood items they are looking for oral input, try the following items -  gum, chew tubes and/or an oral vibrators.

If a child cannot sit still, they need a sensory break of an activity like jumping jacks, pushups against a wall or carrying heavy items to the office.

A child the fidgets with his shoes to the point of wearing them in a short period of time - A bungee cord around the bottom of their child will give them a way to fidget with their feet but not ruin their shoes.

A child that needs tactile input will benefit from having velcro under their desk and/or having a fidget strip.

Weighted lap pads work best when used twice a day to help a child regulate, I usually suggest 10am and 2 pm. Also when a child is struggling with a certain subject.

If your child does not have a sensory diet in place, contact his/her OT and ask the OT to help you step one up before School starts up again. Many times when a child has a good sensory diet in place they come home from school calm, whereas without a sensory diet they want to literally bounce off furniture and walls.

In a few weeks I will be speaking about Sensory Diets & the Sensory Items I make in York Maine, feel free to send me a FB messages through my page Red on Autism if you would like more information or  have any questions.

Dear Playground Dad

Dear Playground Dad,

   The one that thought it was OK to tell my son he was too old to be on the tire swing.  I understand you feel I handle things wrong the other day, you think I was too loud & that I was rude. Here is what you don’t know, I used a LOT of self-control to stop myself from being a lot louder and stopped myself from making you feel about 2” tall because you sir had no right to tell my son that he was too old for the tire swing. You are lucky that I did not know what you had done when I first approached you.

  When I approached you I had just checked on Donald and saw that he was having fun with the other kids, something he has done for the past two years. He always plays, help and looks out for the younger kids on the playground while his brothers play T-Ball and there has never been an issue. As I walked back to watch my younger sons play ball I heard you say to your friends something like – “See the kid in the red cap with the sweatshirt…..look he is just waiting to get back on that swing…..I am going to talk to him.”  So I followed you and told you if you had a problem you were to speak to me. 

  Yes my son asked your son to get off the swing because your sons cleats were dangerous while your son was standing as he could have stepped on another child’s hand with those cleats. Later I explained to my son that he was not in charge of what happens at the playground and next time to seek out an adult for advice. You may feel my son was wrong but I do not as my son’s only intention was to protect the other kids.  

 You said that my son was spinning the tire too fast, I tried to explain that many times the kids ask him to do that but you did not want to hear what I was saying so I called my son off the playground. Was I talking loud to my son, yes because I know my son, he will feel like he did something wrong so I spoke louder trying to get him to understand that I was on his side before he had a meltdown over being pulled off the playground.

  See there is something you do not know – Donald has Autism, so he processes information differently than typical kids. Other things you do not know – Donald is homeschooled because his teachers had no interest in learning about his Autism. That Donald would much rather be at his own Baseball practice but he has been bullied out of Sports in Kennebunk. He would rather be at a friend’s house but he does not have many friends because kids do not understand his quirks.

   So Donald tries to make the best of the boring T-Ball games by playing on the playground, helping the younger kids and looking out for them. Now YOU have taken one more thing away from him because YOU feel 12 years old is too old to be on a tire swing. Well Sir, I am 45 years old and I had been on that very same tire swing with the kids so you see 12 is not too old and you Sir are NOT in charge of what MY children are allowed to do.

Next time – DO NOT approach the child, ask all the parents around you to see who the child’s parents are then ASK the child’s parents to help you figure out what is going on before you act.