[deleted account] ( 2 moms have responded )

Hi to all...my name is Amber and I am new to the group. I am a mom to four children. My youngest is Sulley and he has epilepsy and was diagnosed in the fall of 07 with OCD. There is no one in my family that has ever had this condition and it has been a real struggle trying to understand exactly how a child his age could have this and also how to cope with it. He is being treated for his epilepsy with Lyrica which has also benefited the OCD. It has by no means cured him of the OCD but has made it a little more manageable.

The concern that I am having is with him starting kindergarden in the fall in a public school. I am very protective, as most moms are, over him. It is becoming very worrysome as we get closer and closer to his start. My concerns are kids making fun of him, the melt downs and how the staff of the school will accomdate, and mostly just the overall treatment of him. I know that some schools are not very sympathetic or tollerant of different needs and just thought I would ask others of the experiences that they might have had.


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[deleted account]

Wow...thank you Melanie. This has been a struggle and I am trying to be as proactive as I can. You have been very informative and I appreciate your openess to talk about your experiences. I do realize with each individual they will have their own struggles to their path in life. I have learned this with my older three. When Sulley was first diagnosed with OCD we really thought that he was autistic. We went through many tests and the OCD diagnosis took quite sometime to get. He has been in a private preschool and we have had our problems with his wanting to play alone. He would always parallel play ...wanting to be by other kids just not wanting them to touch anything of his. His epilepsy meds are helping control his OCD outbursts...but we are still very routine with our schedules. He is beginning to play with other kids which has been great! I am hoping that we can have a relationship with the school that will be to his benefit and less of a struggle. Thanks again for your reply!

Melanie - posted on 01/09/2009




My twelve year old has always had a lot of needs and issues. We always knew there was the ADHD stuff going on (but really, in comparison to the other stuff, it's minor). It is suspected he has Sensory Integration Disorder. And he is on the borderline for Tourettes. The biggest issues are caused by his OCD. Between the SID and the OCD, it was questioned for awhile if he had Aspergers. That's still being debated back and forth, except he has some social skills that one doctor argues is learned behavior, while another insists it takes him out of the range for Aspergers.

I understand your concerns for school. I actually find the teachers to be more sympathetic to the OCD than the tourettes. They don't always get that Joshua cannot help the verbal ticks. The emotional upsets over his not being able completing something perfectly is easier for a teacher to deal with. Constant popping and clicking of the tongue, is annoying. The teachers often think he should be able to stop it...but he can't. He'll control it for about five minutes, tops, then start all over again, completely unaware that he's clicking and popped again.

I have found because Joshua is VERY bright, and his grades don't suffer from his disability, that the school ignored him for way too long. It took awhile to get them to understand that it was more than just whether or not he was getting good grades but whether or not he was being a disruption to the rest of the class. The doctor said he wasnt even performing to his best ability...teh ocd was impeding...and he said, if not for his intelligence, he'd have been in bad trouble years ago with his grades, it's that debilitating at times. It took me from kindergarten to sixth grade to fight with the school. I found some teachers could handle him well, and those were good years. Other teachers couldnt handle him at all...and those were years we got through as best we could, with a lot of tears and outbursts. Because of his grades, I couldnt get an IEP. I did fight for a chapter 15 finally last year, which isn't the best, but it does at least put in his records that he has these needs. (I live in PA...I dont know whether this is across the board or just individual by state).

If I were you, I'd approach the school soon, if you are going to put him in public school. get the paperwork started now, because it might take awhile. I wish I had done just that when he was little, because it has taken me awhile to be heard. Also, find out if you can request specific teachers. I didnt know I could do this until last year when he was in fifth grade! At the end of the school year, I sat down with the elementary school principal and told him Josh's story (he knew Josh VERY well...it's hard not to know Josh...he's a character...everywhere my son goes, he draws attention to himself, good and/or bad, really quickly.). I told the principal that fifth grade was probably the best year we had, because he had a teacher that understood his needs. So, we asked if he could recommend someone who had the patience and ingenuity to deal with Joshua in sixth grade. The put together a good team of teachers for him with his subjects. He's doing really well. And instead of trying to squelch him, they call me and say "This is what Joshua's doing now...what can we do to help him overcome this? Or is there a better strategy I should be using?"

Lastly, we try to put his particular brand of OCD in a more positive light for both Joshua's sake (his self-esteem sometimes takes a beating) and the teachers. He pays attention to details. He's meticulous (his projects and assignments are always the best). His room is always tidy. He's a phenomenal drummer for his age, playing music that most high school kids can't play. I have always made sure that the teachers know these good things about Joshua, to take their focus off the trials, and re-adjust their perspective. I also walk them through the things we do at home that work for us as a family. Sometimes the teacher is receptive, sometimes not.

As far as acceptance goes, we've yet to have a problem. Joshua is funny. He doesnt know he's funny, or what he does that is funny. In fact, for years, he didnt get humor at all! But it makes him charming and endearing to people, so they tend to overlook the issues. He also doesnt care what other kids think...he's rather socially oblivious to that sort of thing. So, if he was teased, he probably didnt react, and others found out quick he wasn't a good target. He accomplishes a lot that other kids his age couldnt because of his drive, determination, and methodical 'conquering' of tasks that they tend to look up to him. The world is black and white to Josh, and he doesnt care if others share his opinion. Then his exuberance and enthusiasm for life make other kids want to follow whatever it is he's doing (when he was about five, he had all the neighborhood kids pulling my weeds in his 'garden' because he declared work was more fun than play). It's hard to pick on a kid like that. We'll see as he enters the insecure teen years if it changes, but we haven't had any problems with him being picked on. I wish I could answer that question for you, but I think that it is an individual thing, based on the child's personality and how they present themselves more than anything.

It's not easy. I have to stay on top of him, and the school. This has probably been the best year yet. Good luck.

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