Karl's Progress Report

    Today we received Karl's progress report & his first NWEA testing scores. I am so proud words escape me. Well maybe not completely, LOL  When I look at Karl's grades and scores, I cannot believe that there once was a time we didn't know if he would ever talk. We didn't know if he would be able to be mainstreamed or attend a regular school. Now he is in second grade, mainstreamed, sings in Chorus, has friends and is able to keep up and at times surpass his peers academically :)

   The school does not do grades at this level they use a learning results key.

Allied Arts

Work Habits  -   Many were Consistently and some were Often

Indicators - All 3's for meeting the standards

Literacy - Indicators - All 3's

Social Studies - Indicators - All 3's

Science - Indicators - All 3's

Everyday Math Key -  2 developing & 14 Secures

The Teacher note explains that Karl is transitioning very well into Second Grade :)

NWEA Testing - This is Karl's first time taking a test like this and he handle it like a pro!! 

Mathematics - Karl scored 190 - District Average was 188 - Normal Group Average was 178.
                       
Mathematics Goals Performance
 
Algebraic Thinking - High Average
Number & Operations - High Average
Measurement & Data - High
Geometry - High

Reading - Karl scored 174 - District Average was 181 - Normal Group Average was 176

Reading Goals Performance

Foundational Skills - Average
Language & Writing - Low Average
Literature & Informational - Average
Vocabulary Use & Functions - Low Average

I am so proud of him!!!!!!!!!  Some may wonder why I am posting his grades & test scores, I am posting them to help other parents. Parents new to Autism may feel that their child will not accomplish everything the parent had planned for their child to accomplish. Well the first rule of parenting - NOTHING goes according to the plans that have been set :) Many typical kids never accomplish what their parents had planned so there is no reason to fear Autism is a deciding factor, it is not. I would have been considered a typical child and I broke all the rules of being typical and still do, LOL.  Goals for children,  all children should be that they have good morals, they know the basics of life and that they work to be the best that they can be without unrealistic expectations. No one ever said parenting was an easy job but it is the most rewarding!!!

Things will be changing.....

It has been almost three weeks since my heart attack scare. I have been reevaluating many things in my life, one thing I have sadly realized through that scare is that there are many I thought were friends, are not. While Social Media is a great tool to connect with people & to network. It is also a way to see how people who are always to busy for you, have time for others which leaves a person feeling unwanted. I have dealt with this for a long time and tell myself to stop reading into things and it will be fine. Then you spend the day in the hospital, only one friend calls to check on you and only a handful of friends checks in on your via social media. While I know I was not able to call everyone when it happened, there were many posts about the scare both on my personal page & business page as posting was the easiest way to update. Even if put that scare aside, that time opened my eyes to see that some just never have time for me.

 In order to keep my heart healthy I have to make some changes to bring down my stress level. One thing I have realized is that I am always ready to help people that I think are my friends but then when I really need a night out or something, no one is around. I have written a couple of blogs about my struggles with friendships over the years and for a while I thought things had changed but in the past few weeks I have realized it hasn't but it needs too.

I am very understanding that people are busy and so am I but I try to make time for those I consider a friend, yet from many that is not the case for me. Which is really hard as it has been a really hard year. I think there is only one person that knows how hard it has been and she is my true friend. The stress of being a Married SINGLE mom is weighing on me, feeling my shop is not good enough because most locals won't shop here, issues with the kids, spending day after day by myself with the only adult interaction takes place online and the most recent was at Thanksgiving dinner everyone showed up to eat and then left, spent 90% of the day alone with the kids then my inlaws stated they would not be coming over for Christmas dinner because Mike's Aunt is coming up. I had previously said that she was invited to come too but she wants my FIL to cook for her. Now many would think we could all have dinner at their house, no we have only been invited for dinner there once since we moved. That was last Christmas when we expressed that we wanted to have dinner with Mike's sister.

I will be making many changes with the coming year, one thing is that I am going to become a little selfish by not spending time on others that never have time for me. This is going to be extremely hard for me as I have always been a people pleaser but I NEED to do it for my sanity. Only time will tell where this goes.....

Project - Giggle

Giggles

I have always noticed that there is one thing that makes our children giggle on Christmas Morning, I am not talking about them opening their presents. It is when they are waiting for Mike & I  to open the presents they made or carefully picked out for us. They stand there with such excitement trying so hard not to not tell us what it is. I love the look on their faces when we finally get the wrapping paper off and open the box. Their happiness is what Christmas is about :) Back when I was a single Mom, it meant so much to Karissa that she was able to have a gift for me. We were lucky that friends always helped with this:)

I know times are hard, so a couple of years ago I created some gifts that were under $5.00 so Southern Maine children could giggle Christmas Morning. I also stated that even if a child did not have any money they would leave with a small present for their parents. Only a few came in last year so I am starting to spread the word earlier this year. Also I am opening it up for customers to help. When you stop in to do your Christmas Shopping you can purchase a small item and put it in the 'Giggle' basket pictured. I am hoping that I will have to add more 'Giggle' baskets very soon.

Please let your friends know about Project 'Giggles'!!!

A New Journey

Today I attended my first MDDC meeting I had a great day and met a lot of great people. A little overwhelmed with information at the moment but I have time to process it and do a lot of research before the retreat in February.



Aside from this being a New Journey for me, it is completely off routine for the boys. Kyle even prepped his teacher yesterday that I would not be home and that Daddy was handling everything. Karl's big worry was that doing this 'new' thing would mean that I would not have time to make as he put it "your beautiful bracelets for everyone to buy, people need them."  Donald wanted to come with me  but told me to remember everything so I could tell him all about it when I got home.

Handling things with Daddy in charge.

Kyle was whiny today as I knew he would be because he has separation anxiety. He clung to me when I got home and we had to climb into bed and cuddle right away. He said he likes it better when I am home when he gets home. When I asked him if it was OK for me to go to more meetings, he looked at me with big eyes and said "WHY????"  I said "Because I want to help boys & girls like you and your brothers"  He said "With Autism??" I said "Yes and other disabilities"  He looked up at me again with big eyes and said, "Mommy I am proud of you."  I then asked if I can go to more meeting and he says "Of course, they need you."   I am so proud of him

When they picked me up, I gave each of them a hug. Karl had previous only mentioned about his worries of me having time to make bracelets but when I gave him a hug, he held on so tight. Then when we were cuddling he wouldn't let me go. I did not ask about it as I sensed he did not want talk, he just wanted to cuddle. I have a feeling he will be keeping me close to him for a bit and I don't mind as he has been getting VERY independent lately. So it feels good to know he still needs me :)

Donald said he really missed me which surprised me as he has been having normal tween attitude lately. Then he patiently waited until the boys went to bed and wanted to hear all about my day. I explained to him that I felt a little overwhelmed and would like to process the information tomorrow while I sew and we could talk about it tomorrow night when I have had time to rest and process. He said OK. He did tell me that the kids in CRT missed me this morning and that they are looking forward to hearing about the meeting.

Before going to bed, Donald return to my room and said, "Thank you Mom for all you are doing." 

I think this New Journey will be good for all of us and it seems that my boys truly understand the importance of my advocating for them, which all by itself is very impressive :)

I have to end with a big Kudos to Mike, the house is still standing, the boys were happy and they were fed. Maybe in all of this he will learn all I do in one day :)

Standing His Ground

As some of you know, the 7th grade class is going on a 4 day/3 night camping field trip next week. I have worried about this trip since last Spring when I first heard about it but was hopeful we would be able to put things in place to help Donald. After reading that kids were not allowed to have cell phones, my anxiety increased. I threw it out on FB to see what others thought and got mixed responses. Those with children on the Spectrum understood my fears more than those that do not have children on the Spectrum which is understandable. When you have a child that has a lot of friends it must be hard to understand that there are children that do not have friends. So it is easy for other Autism parents to understand my anxiety as they may have the same anxiety about their child. One thing we all agreed on was talking to Donald and find out his feelings. This made me nervous because Donald always wants things to work out so he will do it with hopes for a good outcome. But then I am picking up the pieces when it does not meet his expectations or hopes.

The Talk - I asked Donald if he wanted to go and he said yes. Then I asked why, he said because everyone else is. I noticed his facial expression change almost like hearing himself saying "because everyone else is" made him realize that was not a reason to go. So then we talked about his concerns which were in perfect tune to my concerns which is most likely what I was sensing and why I had such strong feelings to protect him. While we were talking I could see his expression changing from stressed out to feeling relieved. I have always brought my children up knowing that they can talk to me about things and that we can have open conversations. But many children always find it hard to believe that they can talk to their parents so they don't. During this conversation Donald really found out that while there are many times I push him to work through his anxiety, I do know when not to push. He found that we can talk about the pros & cons of things and find a compromise or more important find that we feel the exact same way. In the weeks since our talk I have found that Donald & I's relationship has grown so much stronger. He no longer feels that I do not understand him, he gets that I 'get' him and that I have always wanted to work with him and help him. He understands that my pushing through things has always come from love. He is laughing more, more relaxed and I even get kisses on the cheek again. (This is huge when you have a tween)

Now to explain the title of this blog -This morning we were talking about next week and what he will do while he has no school. Out of the blue he brought up that he felt some pressure from a teacher to go on the field trip. He explained that the teacher told him "you should go, you will have a lot of fun."   I had asked that these comments not be made but it happened so I asked Donald what his response was. He said "I told him I am standing my ground and not going."  That must have been very hard for Donald as he is a people pleaser, I am very proud that he had the courage. I have not spoken with the teacher so it is possible that there was different wording and the teacher didn't mean to pressure Donald but to Donald it felt like pressure. For me it does not matter what the actual words were, what matters is that Donald is comfortable with being himself and  has the strength to stand his ground.

In many ways I can see that Donald benefited from the decision process of this field trip without needing to actually go on the field trip. It goes to show how our kids learn differently and what works for one, may not work for another. I think Donald found more confidence in himself with making the decision not to go than he would have gained by going :)   It is all about perspective!!!!!!!

Side Note - Donald made me cry last night. He said he had to interview me, when I asked why, he said "I am doing a report on someone that inspires me."   Tears of Pride followed :)

A Buddy

Today I started volunteering in Kyle's class :)  I was very nervous about working in Kyle's class as he has separation anxiety at times but I wanted to try. As I hoped he is very settled into a classroom routine and do not stay at my side:)   He was at my center for the first round, so independent, polite and showing me all he can do :) He did very well with transitioning to other stations. He looked like such a big boy, I was proud and heartbroken at the same time. My baby is growing up!!!!

Later in the morning they get to pick their task, writing, self reading & buddy reading. Those next on the list get to use either a computer or an Ipad :(   I could tell by Kyle's response that he does not like the writing part so I thought for sure he would pick self reading. I was happily surprised to hear him ask a friend to buddy read. That moment washed away many fears I have had and I can see all the benefits of early intervention. Donald & Karl were in the dx process when I was pregnant with Kyle, both got their dx when Kyle was 6 weeks old. At that appointment the Doctor said we were watching Kyle from birth and that he had to have EI at 12 months even if he was not delayed. Many thought this was wrong and that we were predetermining Kyle's future. I watch Kyle with experienced eyes and was careful not to predetermine his future. Little by little we saw signs of Donald & Karl in Kyle and around 12 months Kyle was in EI. It worked out perfectly that Karl completed EI as Kyle entered EI so Kyle had Karl's therapists. This saved us a great deal of time as he already knew them and liked them. After moving to Maine Kyle continued in EI and at age three he went to the best pre-school around Bear Hugs. Jen, Chrissy, Shirley, Lori and others worked so hard with Kyle and helped Kyle overcome so many obstacles.

Because of all the work we did early I watched a brave little boy ask a friend to be his buddy and that was the best thing in the world to witness. We were able to get Kyle to draw a picture for writing, he drew him & I at the parade Saturday and he gave me long funny hair :) SO PROUD!!!!!!!!!!

Talking with Others

Last night I talked with a small group at a local church. One gentlemen has a 70 year old sister with Autism. Back in the day his Mother tried her best to believe there was more she could do but there was not support for parents back then and there came a time that she could not help and she had to put her daughter in an institution. I am sure that was the hardest decision in the world. But I can understand it as we can only do so much on our own and with only one source of help, parents didn't really have a choice.

 When I spoke about how many still having the "shh we don't talk about that" attitude towards Autism, he remembered it being like that when he was young. Donald & I explained how we are open about Autism with everyone and how it has made such a difference with other kids. I explained how much Karl speaking at his school last year he helped Karl find his voice. He said he can see that life is so much better when people talk about it and be open about it. They loved that Donald is so confident about who he is :)

We talked about how Sensory Items and weight help children/adults regulate and they all tried a small weighted blanket & the weighted shawl and liked it. They were surprised to feel an instant comfort from the weight. Which helps prove my theory that many typical people can benefit from weighted blankets too. We talked about how Sensory Diets help children with Autism, ADD, ADHD, SPD and APD in school and at home. I explained how using  different activities & tools throughout the day helps a child regulate and relax so they can learn more and that when the Sensory Diet is followed correctly a child can come home calm instead bouncing off the walls.

I spoke briefly about how I do not say "he cannot do that because he has Autism."  I would say things like "we are working on that," we haven't taught him that yet," or "that is his next goal." I explained that I have found with the boys having a "can do" attitude teaches them that they can do what they want as long as they work for it. The gentleman explained that he remembered how his Mother would not let his sister near a hot stove or let her do some things because of safety reasons which is understandable. Then with her living in an institution for a long time there was no access for his sister to have independence. Things changed when she went to live in a group home, during one of his visits to her at the group home, a worker asked him if he would like some tea, he said yes. Then the worker looked at his sister and asked her to make the tea. He was so proud to watch her be able to do it all on her own. Now with direction she can take care of herself and she was working until a few years ago when she retired. She loves to manipulate things with her fingers so I suggested he get her clay to play with :)

While 70 years ago parents and doctors did not understand Autism I am glad to see that his sister was able to move out of the institution and into a group home where her restrictions were lifted and she was allowed to show how smart she is and that she is able to be herself. All too often children/adults with Autism have their abilities are underestimated. I think that while yes we have to be realistic we have to also have the attitude  'the sky is the limit' for our kids. So maybe they only get to see the top of hill instead of the top of a mountain, the point is they did not give up before trying. Always have small goal that lead to a large goal as accomplishing those small goals will build up confidence for your child to keep trying new things :)

I hope I get the chance to do more these talks as last night was not only about how I can help others understand Autism, it was also about how I can learn from others which will help me help others in the future :)

Morning of Lessons

It has been a morning of lessons today and it is only 10:30.

Donald found out that I will no longer allow chores to be done half fast as the dishes were all greasy this morning so he stayed home this morning to redo all his chores.

Karl & Kyle made a very hard decision to save their chore money this week so next week they will have more to spend. This was VERY hard for Kyle as he REALLY wants a larger play mobile set, he almost cried but in the end held it together and made the right choice.

Kyle - Well we were suppose to have Ice Cream for dinner but that was ruined by Kyle having a full blown tantrum over which flavor they should get. Karl wanted one flavor and Kyle wanted another. They decided to do rock paper scissors, well Karl won and that pushed Kyle over the edge. While I understand that it was a hard blow for Kyle after making such a good decision at the Toy Store, I still could not condone his bad behavior. He was screaming and stumping and under no circumstances is that allowed.

I gave him a warning & started counting, he stopped. I then gave him the choice of putting his flavor back and he would get the choice next time or I would put all flavors back. He decided on his own option of screaming at me again. At this point there is no reasoning with him so he had to learn that his choice of screaming is unacceptable.

I put back all the ice cream and he continued to scream at me while we went to the register and screamed while we were at the register for a bit. Then by the time it was our turn, he calmed and asked. Mom can we try again tomorrow and I said yes but it will still be Karl's choice of flavor. At this point those around the store that had laughed or given me dirty looks realized I had made the right decision and that Kyle learned a lesson.

Society needs to learn that just because a child is having a tantrum, it does not mean it is always because of bad parenting. Some of us will allow our children to scream as we do not believe in giving in to their tantrum. Giving a child what they want just to keep them quiet can be bad parenting as the parents are teaching the child to have tantrums to get what they want.



Karl was rewarded with a candy bar as he handle me putting the ice cream back very well :)

Donald emptied the dishwasher & filled it, did some laundry, took out recyclables & compost,  rewashed the greasy dishes and was cleaning the counters when I got home:)

Kyle has since calmed down and said he is sorry, he promises to behave today so he can have another chance tomorrow :)

A Magical Day

    Magical Day – I barely slept last night, I always have trouble sleeping in a hotel room, way too much light comes through the door. So I was awake around 6:30 but wanted to relax so I let the boys (even the big one) sleep in. All but Donald was up by 8:10 when I realized I should double check start time. At 8:19 someone answer with “9,” my thought was dame we won’t make it. I showered & dressed while Mike got the boys ready, we packed the car as fast as possible and checked out of the hotel. We arrived at Narragansett Town Beach at 9:19, found out that opening ceremony had not taken place yet. A perfect way to start our dayJ

Wanting to film the opening ceremony I stayed just outside the circle with Karl as the crowd was too large for him. Looking around at many families who “get it” is the most wonderful feeling. No worry what people will think if one of the boys have a full blown meltdown, knowing another Mom will not ask permission but just help if they fell you need help, as it should be in the world. A day were no one needs to explain Autism but share parenting stories knowing they understand Autism is there. It is a day for the kids, no IEP meeting, 504 meeting, no judging and best part of all is feeling connected to so many people who are actually strangers.

For me it was nice to finally meet Karen, Mitch & Kristin, three women I have known online for a few years but never met in person. Also great to see Doreen & Cindie again J Even though I have not talk with Mitch in a while and only found Karen again last month, it is like being with old friends again. I really hope we can all get together again J

Knowing Kyle was very nervous, we showed him how the surfers worked with kids and how they help kids surf. Surfers Healing was great by allowing the boys to surf at separate times even though they were scheduled together. Donald went first. He acted like an old pro – “I got this Mom.” He had two good rides in, when he up to me he tells me – “I was so scared for a minute Mom.”  I was like what’s wrong, you did great. He replies “ a fish flapped his tail at us.”  I just looked at him and laughed J   

Kyle was next but had a long wait as the surfer were having lunch. His anxiety was sky high and I could see him holding onto Mike for dear life. I went to help but saw a small smile so I stepped back and let Mike handle, those of you that know me, know that was hard to do…  Then a surfer comes up to Kyle telling him it is his turn and the tears started so I had to go help and of course remind him that his reward was two king size candy bars. Candy bars did not make a difference so I then offered Ice Cream for dinner, ask the surfer to promise he could stay on his belly so he smiled and went off. His surfer was amazing with him, he kept his promised to Kyle about staying close to us. I thought for sure that Kyle would only do one ride in but his surfer got him to go out for three rides and was able to get Kyle to stand on the board with him. Once Kyle knew it was over, he cried and just wanted Mommy. But once he got to me, it was all about taking that wet t-shirt off. LOL

Since many surfers had finished lunch, Karl was up right away. Karl who in the past never wanted off the board had very mixed feeling today. He was very scared but wanted to do it. He went out OK, they tried to come in on a couple but the wave was not good. Next thing we knew Karl had a great ride in and was all done.

The boys all got there metals as they finished and have not taken them off since. As we have made a few stops, they have explained what they did today with great pride J

I need to give a big shout out to Whole Foods for donating lunches and that they were Gluten Free lunches. Since we are staying at hotels we thought lunch was going to be snacks until we got back on the road. Thank you so much for your generosity.

To Surfers Healing – Thank you All!!!!!!!!!  Since we moved to Maine we were unable to attend 2011 & 2012 but we made it this year. Thank you all so much for all you do, my boys feel so incredibly special and they are very grateful to have such a Magical Day in RI J