Letter we've given to people when he was younger

[Guest guest]

Here is what we've done over the years.

This one was from quite a few years ago.

We adjusted it whenever he needed it.

Robin

Hi.

I am putting this together so that we can let you know the “workings†of Ian, and possibly our family, a bit better.

Ian was diagnosed with Aspergers/ADHD and mild Tourettes Syndrome about 3 1/2 years ago.

Aspergers – also known as high functioning autism – is a neurodevelopmental disorder (sensory processing disorder) that makes it hard for him to always understand what is going on around him as well as understand social "correctness" and respond the "correct" way in social situations. He also may seem very immature and "wild" one moment and quite serious the next.

He may be SO into something that he won’t hear a single thing going on around him, or, on the flip-side, he may hear absolutely EVERYTHING that’s going on,,, from everyone talking, to the fridge running,,, and that can cause a lot confusion and problems concentrating for him. He often has a “dazed†look on his face or may appear to be looking “through†you…………this is a perfect example of him trying to “sort the stuff out†before responding. He hears you……he just needs time.

We and his teachers have found that asking him to look you in the eyes can help. One thing we KNOW is that the only thing consistant about Aspergers is its inconsistency.

As far as Tourettes Syndrome…..he has some of the “simple†characteristics, or “mild†characteristics. He, at times, wiggles and moves his shoulders around as if trying to itch something away without being able to use your hands to scratch. When he is having these moments, it is very hard for him to sit still. He also may repeat things he has just heard. This is called echolalia. He usually says the things quietly and they don't seem to be a disruption, but this does happen from time to time.

Sometimes he makes noises such as saying “hoo hoo†or different noises with his mouth. He also may call (or shout) something out. We don’t punish him for them, but at times ask him to please try to keep it quieter. Sometimes it works, sometimes it doesn’t. We have noticed that the noises seem to come more when he is NOT focused on, or doing, something.

People within the autism spectrumm, (a term used to define many disorder's such as ADHD, ADD, Obsessive-compulsiv e disorder (OCD), tourettes, autism, asperger's, Opositional defiant disorder (ODD)), often “do†things or collect “things†to make themselves feel “rightâ€. They often excel at things that require “specificsâ€. Ian has an incredible memory and is awesome at math. He is amazing at the computer as well as video games.

All kids have toys they like and may even collect things too. The difference is that, for Ian, it is almost like a compulsion. He wakes up for it, lives for the moment to do it and simply wants to DO these things all the time. These behaviors are called â€persaverative behaviors†and doctors say they are good to a degree because they are what the person “knows†and it helps them feel calm and safe.

It may not seem very wise to let him play his games so often and for him to be so “into†it, but this is how we are choosing to live and deal with this. We are constantly learning and reading about this and really appreciate your understanding.

We also have to watch him carefully. Not so much now physically, because he is getting older and getting more independent. But, we watch him more now because of the differences between he and the other kids. Most kids won't say things, but some do. Some kids can be very cruel and we have to be his advocate and demand that it doesn't continue. We have been told that because he WANTS friends and WANTS social interaction, that he may fall into the wrong crowd or simply ANY crowd that pays him attention. That being said, he may be used and not even know it. We also need to be around him to help teach him how to function better socially with other kids. This doesn't come naturally to him. He

will "get it" by repetition.

Physical play makes him wound up. If there is contact, he will either be very aggressive and not understand to “tone it down†or he may get very upset and even angry that he was bumped in to or that a ball was taken away from him – not understanding that that is what happens in certain games.

Before we had a diagnosis, we were embarrassed by his behavior or when things “happenedâ€. We were hard on Ian, expecting him to stop and getting angry because we just thought he was stubborn. And we were harder on our selves,,,, wondering what we were doing wrong and knowing we were being looked down upon and criticized for not having a child who would pay attention and listen and behave. We knew that we were losing friends because of the chaotic way our family seemed.

We now choose to look at it this way: Ian is an incredibly good, funny, loving, energetic, brilliant young guy who we are blessed to have been given. We are a family that has all the time and love in the world to be with him and help him when needed. So, we feel honored and try to remind ourselves of this every chance we get.

Ian knows about these issues he deals with. He knows he takes medicine and why.

So again, we are writing this up so that it may help you understand a bit more when dealing with us and/or Ian. He truly is a great kid.

Please feel free to ask us any questions or call us any time.

Thank you for taking the time to read this.

and Robin

9**-****

jrisjs (DOT) com

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