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

IEP & 504 Meeting

IEP & 504 Meetings

Any parent that has been to an IEP or 504 meeting understands the anxiety that takes place before and during these meetings. This week I had an IEP on Monday morning and a 504 on Tuesday. I did not have many nerves over the IEP as Karl’s school teachers, admins & I became a team last year. As for Donald’s (504) school, I was a wreck with nerves. Last year it seemed at every turn the school was oppositional to every idea I had to help Donald.

Karl’s – When I got there I explained that my defenses were up because of things I am dealing with at the middle school, that the 504 meeting was the next morning and that my emotions were high because Kyle is having a tough transition into kindergarten. But that I knew this meeting would be fairly easy and it was. Karl’s meeting was pretty routine, getting the same services but we have pushed up some of the goals. We added that a plan for Karl’s seizures this year as he has been having more of them. He has already had 3 seizures in class that we know about. It is a basic plan as we do not know what is happening but it meant a lot to me that they offered to put it in. I know a lot of the time people hear me talk about issues & road blocks but I want to take the time now to say that Karl’s school has come a long way since Karl started there in Fall of 2011. Knowing that they respect my knowledge of Autism, that my ideas work and that I know Karl (& Kyle) better than anyone else eases my mind a lot. I know many school systems believe that only an Autism Specialist can help get a child back on track. That may be the case for many but there are a lot of parents like me that know our child very well, to the point that even the smallest twitch has a meaning and we know what that meaning is. So being able to observe like I did last year made a huge difference in how we went forward. I observed and quickly saw that we needed to get some of the basic tools like schedules brought back and it work we got Karl back on track. I think more schools should do this when the parents feel it is the right as we know our kids and can detect things faster than a stranger so it would save a lot of money for the district.

Karl has grown so much over the past couple of years, I look forward to working with his schools great team again this year.

Donald’s – Overall it went well J  The big issue was technology because Donald is addicted to computers. The 7^th grade class is getting IPads and I did not Donald to have one because of his addiction. He cannot have open internet access because he would be playing games non-stop. Other topics were handwriting, keyboarding and voice dictation. Donald’s printing is not legible, they had stopped teaching cursive even though he was good at it and he was no longer going to receive keyboarding. It was suggested that Donald use voice dictation for which I refused. I had requested an OT be at the meeting as I had been begging for OT for handwriting for 6 years and was hoping this would be the year we get it. I brought samples of how Donald prints and how he did with cursive. Printing is not acceptable for his age but his cursive was nice considering he hadn’t done it in a couple of years but it took a LONG time. I am happy to say that Donald will be receiving OT for cursive and will continue to get keyboarding sessions to help him type. Voice dictation will not be used.

Technology – I think this is a very important topic for ALL parents. Technology is being over used in schools and it is NOT always helping our kids. As I stated Donald is a computer addict so internet activity limits are a must. Plus when he researches topics he cannot pick one because there are too many websites. He will always look to another site for a better answer. As I explained to teachers and admins – “Giving an IPad with internet to a computer addict is like giving a drug addict an open bottle of Vicodin and saying don’t take one.” Our discussions about the IPad went back and forth ‘old school’ verses ‘technology.’  I do believe that technology is good when it is used as a tool but feel very strongly that it should not be a requirement. It was mentioned a few times about how accommodations are made using technology to help children. At one point I turned to the 504 administrator and said “just like some may need accommodations using technology, some may need accommodations using ‘old school’ ways to learn (I may have paraphrased my words a little as I was nervous an may not remember the exact words).

At this point during the meeting it occurred to me that many kids may actually learn better with ‘old school’ techniques and not technology. I know I have always said this with my boys as they always responded better to old style toys like wood blocks, manual items, drawing, color books, etc… When something new is invented there are always marketing plans to target families and this includes targeting kids with special needs. As parents we always want to try something new to help our kids, well except for me. I always roll my eyes when I hear that there is a new IPad, IPhone, etc, heck we do not even have an HDTV and do not need one until our old TV breaks. So I got to thinking how many more kids would benefit with ‘old school’ techniques and not use technology. With the speed of upgrades there is no need for IPads in the younger classes unless it is needed for an accommodation as I am sure IPads will be obsolete in a few years.

In the end, Donald will have an IPad but the teachers will have to put in the password before he can go online. OT for handwriting, keyboarding to strengthen his typing skills and we have to get teacher input on projects. Will the teachers find the websites for Donald or will the fights over projects be handle by the school school only and not at home. As I said the meeting overall was good and I feel that the middle school wants to work WITH me this year J