"It's tough being left out, isn't it?"

Last night the boys and I watched the movie 'Problem Child' and we heard the line "It's tough being left out, isn't it? "  Karl answered "yes it is."  My heart broke hearing him say that and it has been on my mind ever since he said it as I know he is hurt. If you have read my blog in the past you know how hard I worked to get the town to allow Karl to attend Kennebunk recreation camp. I have not written about it in a while as I was waiting for a reply to a question but the town manager never answered me email. Quick recap.

Karl regressed last school year and it took a while to get him back on track, he did not qualify for extended school year so we asked that the camp have a smaller group with a 4:1 child to counselor ratio. At first we were told there were no funds to have extra counselors for which I offered to raise funds but I was told no. In the end I offered that Karl would only attend 3 days a week and would not go on field trips but I would pay the full week price. With three other families doing this than there would be no additional cost. I gave the town manager permission to see Karl's IEP to help him understand Karl's needs as he has NO experience with Autism.

In the end the town manager Barry Tibbetts stated

Based on the IEP report, discussions with staff and school personnel, it appears that your son needs 1 to 1 supervision. This is particularly the case in the context of a summer day camp, which is loud, busy and constantly changing with activities, getting in lines and groups, field trips, etc.   The Town cannot provide the required level of supervision within the financial and administrative constraints of the existing program. Currently the Recreation Department programming is based on a 1 to 13 ratio (1 counselor to 13 children).  

         Should you decide to independently arrange for a caregiver to attend camp with your son, that would be acceptable, provided that the person is over 18 years of age (exceptions have been made for 17 yr olds, but are rare - we expect a very high maturity level) passes a background check (we require all counselors to pass a background check).

I responded with

 "Could you please explain with more detail how you came to the conclusion that my son needs a 1:1 aid when I had requested a small group with a 4:1 child to counselor ratio. I am confused how you came to a decision of my child's needs when you are not experienced in Autism and Ryan Quinn told you that a small group would be fine for Karl."

 Mr Tibbetts never responded to my question. I had all intentions of taking the town to court because the town rec program states that reasonable accommodations will be made for those with a known disability but I did not want to spend the boys Summer vacation in court forcing a program to accept Karl. Then a friend found out that Toddle Inn would accept Karl into their Summer Camp program :)

Some may wonder why is it so important for Karl to be in a program. Camp was not needed for daycare purposes, Karl needs continuous social interaction to learn how to interact with his peers. All the time I was fighting for Karl to be allowed to attend camp, Karl did not know what I was doing. I never said anything as I did not want him to get his hopes up, just in case. Before we knew he could attend Toddle Inn we would drop Kyle off at his preschool camp and Karl would say, "I want to go to camp."  Tears would fill my eyes as I did not know what to tell him. Then one day I took the boys to the beach, we were exploring when the recreation bus pulled up. My heart sank. As all the kids got off the bus, some went to the water and other went to the playground. Karl stood on the playground steps, just looking at his friends walk by. No words were needed, Karl's facial expression told everyone that saw him "I want to join."  Karl said hi to his friends then I redirected him to the beach. I think it was a day or two later we found out Karl would be starting at Toddle Inn the following week.


People always ask me what the hardest of Autism is, my answer is always the same 'Society.'  Sad to say but we have gotten use to the boys not being invited to friend's birthday parties, struggling to make friends and fitting in on sports team. But is always hurts to watch your child try so hard but get ignored by other children. A couple of weeks ago, Karl saw a couple of classmates boogie boarding and tried to join them. He was boarding next to them but that just ignored him, never even said hi. I redirected Karl to another fun activity but he was hurt.

Mike and I work very hard to prepare the boys to be self sufficient so they can live independently. At some point the town, community and society needs to step up and include them. If the boys continue to be excluded by rec camp, sports teammates, kids, parents and society then how will they learn to function in society??


I really hope that with my fight to get Karl including in camp that the school department and town will realize that we as a community cannot continue to allow kids like Karl to keep falling through the cracks. Parents cannot keep getting told that their child is too high functioning for Summer Services and too low functioning for camp. Something needs to be created to help these kids or accommodations need to be made so they can be included in Rec camp.

Karl has been at Toddle Inn for two weeks and he loves it!!!



Mr Tibbetts, The title of this blog is "It's tough being left out, isn't it?"  I want you to know Karl says "Yes it is"   

Being Judged

    Many ASD parents can tell you that we are judged by many in Society. Today I dealt with that at the beach by a Mother and her tween/teen kids.

    Friends that have been places with me know that when the boys are breaking a rule I count. If they are fairly close, I count 1-3, if they are further away I count 5-1 so they know to come back to me.  On the 4th of July a friend introduced me to her friend and her friend had met me before in the park. She told me that she was impressed that all I have to do is count and the boys come to me without me yelling for them by name. It was nice to hear someone that I do not really know understand what I do.

  Having three boys with Autism can be hard as they can tune out the world when they want so calling them by name out in public doesn't always work. Most of the time they would say they didn't realize I was talking to them and in a playground this could be true when other kids have the same name. So when they are close to me, I will say their name, give a warning and count to three. If I reach three they get a time out or other punishment. Then I created the rule that if I say the number 5, all of them are to come back to me without question. If they are not to me by the time I say 1, they get a time out or other punishment. 5-1 system has been working really well as it has been giving them a little more freedom. If we are in a store, they are able to look in another aisle (close) and when I want them to check in, I count. I also have a color system in place, we start at green and each time they break a rule the color change. Green, yellow, orange to red, once we hit red, we go home.

  Now that the boys are older we have been going to the beach a lot this Summer and it can be hard at times as there is only one of me and 3 of them. We have developed a small routine of exploring, swimming, snack, playing in the sand and swimming again before we leave. Some days we go twice a day, a couple of hours in the morning then a couple at night. This works well since I open the shop 12-6 most days.

  Today the boys were testing me to the extreme, they had their warnings but kept pushing me. We were on code orange when Karl and Kyle walked on the rocks barefoot. I started to count, a Mother and kids near by turned to me and started laughing the situation because at first the boys didn't respond. The boys did end up coming back just after I said one so it was time to leave. Those kids seemed to think it was funny, as did their Mother. When I said it was time to leave because we hit code red, Kyle started to cry and Donald started to wine. I told the boys that if they continued we would not return tonight. Well they continued and were told we would not go back. At this point the Mother had caught my look and turned around. Donald at this point was having have very loud temper tantrum which lead him to losing the beach on Monday as well. Through all of this Karl was remaining very calm and giving his brother a look of "just stop" but they were determined to continue. Eventually I got them to the car while ignoring the tantrum from Donald and we left.

  It baffles me, why were the kids laughing??  Are parents really so relaxed that kids find it funny when they see a child getting in trouble?? What was up with the Mother laughing too?? While I know many parents judge other parents, hell I have myself on some topics. But here is the difference, I usually only think about it and the other parent would never know my thoughts. There are times, I may quietly talk with a friends but still the other parent would not know. It is called using discretion and I would never let my boys disrespect another parent like that.

  All in all, I stood my ground as I knew what I was doing was what is best for my boys. I also knew that they would remember what happened today and want to follow the rules and behave from now on. All kids will test parents now and then but it is our job to show the that we are the parents :)]