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Kristine:
I’m Kristine Nicholas, I‘m the mother of three children: Erica, who’s 22, Daniel, who’s 20, and Benjamin, who’s 7, and all three of them have special needs. Erica has, um, bipolar disorder, Daniel has bipolar disorder, hyperactivity and Asperger’s, and Benjamin has Asperger’s and anxiety disorder as well as a sensory integration disorder.
I started trying to get my children on IEPs when my older son Daniel, who’s 20 now, was in first grade. I knew that there was something going on with the two of them, my daughter in particular had a problem with math, my son was just all over the place, I, I knew that there was something going on but we didn’t have a name for it. At that time Asperger’s was not recognized, there was no such thing as Asperger’s at that time. My son was tested and they decided that he was a square peg in a round hole, is how they put it, but that didn’t make him eligible for services. They decided at that point that he could use speech services but that was it, so at that point I did some independent testing and he was diagnosed with ADD and he was put on medication.
I tried every couple of years to get my son on an IEP, my daughter at that point was doing a little bit better, my son was failing pretty much everything even though he was incredibly smart, he was progressing from grade to grade but he was not doing well.
Alyne Ellis, interviewer:
What happened that made you eventually get his needs recognized?
Kristine:
We moved from school system to school system, trying four different school systems over the course of ten years before finally, in Georgetown, they were able to say “you know, there’s definitely something going on here and it needs a little bit more thought.” They did an evaluation that included a neuro-psych-eval which had never been done in the past, although they had done full evaluations they never included a neuro-psych and at that point we were finally able to get him some services and get an IEP that was tailored to his needs.
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If I could do anything differently, what I would have done is, I would have probably contacted my health insurance and, um, explained in a non-educational way that there was something going on with my son, perhaps psychiatrically, perhaps, um, emotionally that I didn’t quite understand and what kind of testing could I then do for him to try to figure out if he has a diagnosis. They may have then said, you know, we can do a neuro-psych, that was something that I had heard of before but I had been told was not covered by insurances and was very expensive. In the meantime I did find out that, sure enough, some insurances do cover it! So I think if I had known to talk to my insurance company and asked them I might have been able to, to um, you know, get a, a name for Daniel’s troubles earlier than that.
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My son Daniel, who’s 20 now, um, has the diagnosis of, um, Asperger’s, ah, ADHD and also bipolar disorder and he absolutely refuses to acknowledge at this point that he has Asperger’s. He’ll accept the ADHD disorder and the bipolar disorder um, he’ll accept those but he will not accept the Asperger’s diagnosis. He sees that as being autistic and to him autistic is Rain Man and things that are just not, um, you know, just so, so atypical that it can’t possibly be him. And in fact he has a hard time even acknowledging that my younger son has Asperger’s as well, um, he’ll often ask me “Are you sure? Are you sure he has autism because I don’t think so, I think that you know, he has, um, you know, he’s just a little bit different,” or, you know, something like this, “how do you know it’s Asperger’s?” And I’ll have to explain to him: “Look at this, look at this, look at this, these are all signs, these are all symptoms, and these are all things that tell us there’s a problem and this problem is Asperger’s.
Alyne Ellis, interviewer:
So the media and the interpretation of disabilities is what bothers Daniel, right?
Kristine:
That, um, that and, um, I believe also the perception that his friends might have of what Asperger’s and what autism is. I, um, he gets very upset if I even mention it, um, you know, he’ll, he’ll do, you know, he’ll say almost anything to, um, to get out of that diagnosis. “Well maybe I was just being, um,” you know, “non-compliant because I wanted to”.
Alyne Ellis, interviewer:
So what do you plan to do about that in the long run?
Kristine:
He’s 20 years old so the long run, um, is, is an issue, it’s something that I’m not sure exactly how we’re gonna deal with it. Um, at this point, being 20 years old, it’s not like he’s a little child that I can say, OK, well this is what it is and this is what I’m going to do about it. Um, at this point I don’t have the legal authorities any more to be able to, um, help him with school, um, unless he wants the help from me, um…
Alyne Ellis, interviewer:
But at the same time he has to learn to explain his disability enough to compensate and get the help he needs.
Kristine:
Yes he does, and that’s, and that’s been a very difficult, um, thing for us to handle at this point. Um, he really is in denial right now and I’m not sure how we’re going to go about handling that because it’s something that, at some point it’s gonna come up. I’m hoping that maybe with maturity he’ll realize , you know, I mean, I think we all, as we get older, realize how much we don’t know, or, you know, how much we’re lacking , um, where our, um, where our shortcomings may be. And at this point, at 20 years old, you know, he’s on top of the world and he’s Superman and, um, you know, um, you know he has nothing wrong with him.
I believe that, as he gets a little older, a little bit more mature, he’s gonna say in himself that yes, there are some shortcomings and what do these shortcomings mean and where could these shortcomings be coming from? Um, you know, what does it mean to, to be a person who’s as disorganized as he is, um, to be a person that has trouble, um, you know, identifying with other people’s feelings and to be a person who has trouble even with eye contact and things like that. And I think that at some point it’s gonna click in him the way that it clicked in me when somebody first gave me the paper that said these are all symptoms of Asperger’s and um, you know, they could have written Daniel right across there instead of Asperger’s cause it was that, um…
Alyne Ellis, interviewer:
Well there’s nothing like the real world, a little peer pressure… (Kristine laughing in background)
Kristine:
Exactly. And I really do believe that at some point he’s gonna figure it out on his own. If he doesn’t, um, well I don’t know.
Alyne Ellis, interviewer:
Well, but you know, the thing that I’m hearing from you is, you’ve had to let it go.
Kristine:
Yes I have, I have had to let it go, he’s 20 years old now, um, he does still live at home and I know that at some point that’s gonna change as well. And I worry, I worry a lot about, um, where he’ll go next and what he’ll do next. But at the same time I have to, I have to put some trust in him that at 20 years old, um, while he’s not a typical 20-year-old, um, maybe I’ve instilled enough in him, um, maybe he’s gotten enough, um, in him to be able to manage on his own at this point and if not that we’ll always have a place for him, um, you know, we’ll always be there to, to help him if he needs the help and I guess I just have to trust in him that he’ll ask for help if he needs it or that he’ll at least let us see that there’s signs that he needs help and allow us to give him that help if he needs it.
Alyne Ellis, interviewer:
But you already just answered my question about taking care of yourself, you could be worrying yourself to a frazzle.
Kristine:
Um, I could be, um, I dunno, I have a lot of, um, I have a lot of supports, I have a lot of friends, I have, um, I have a great husband, I have an aunt who’s, um, very close to me and my father’s very close to me. I think that just having a support system, um, can give me a tremendous amount of help. Um, you know, I have good things to think about at night when I, before I go to sleep. Um, I guess I’m an optimist!
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