should a teenager attend the IEP with parents?

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Actually I can agree with all of you, I understand the "mom" point of view and the one from others.
If you can find something to think about I can tell you my story. It's not a "you should act or think like me", it's simply a "take it into consideration".

---Italy situation---
First of all we live in Italy, we don't have exactly IEP, we have (now, not when I was young), here the school works like that:

3-5: Children garden, basically play and some educative games. At around 4.5-5.5 years old usually they start giving some "hints" of school (letters, numbers and the like).
5-10: elementary school
10-14: "average" school
14-19: superior school (specific: classic, tecnician, scientific, language and so on)
19-23/24: university

Actually between 3 to 14 you can ask for a "support teacher", someone trained with disabilities that take care of the child during normal lessons or keep him/her out of the class helping him/her with some activities.
14-19 support teacher are presents only in some school, absolubtly not in the one you must finish to access university (unless you are phisically disable).
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----ME---
I've Aspenger, I've a lot of Aspenger trait expecially mentally and for social skills. If you look at an aspie quiz like test you could think of someone who as basically all Aspie trait but has also a lot of NT abilities (at least on the low average). I also talked very early. I didn't know my diagnosis when I was young. But I had a lot of doubts. I started at the age of 6 (after Rain Man movie, 1988) asking my mum on a regular basis "Am I autistic?" and she usually answered me: "No, you are only too much intelligent". Every time I went back on the topic like "Mum if I am so much intelligent why I still screw up letters when I write?", "Because you don't apply enough, because you can't understand things that you don't like" (now I know is a "typical" Aspenger thing..). She always refused to have a diagnosis about me and I think it's also due to society and fear.
Society because autistic = stupid, strange or at least "savant" (at least when I was young).
Society because the only times when someone tried to give me a diagnosis at school was for ADHD ("why don't you give him something (drugs)?) Or they thinked that my problem was due to my parents divorce (and I told psyc that they were completly dumb because what matter to me if they fell apart?). Also teachers/professors always focused on "how amazing is your child mind" and never said her about tantrum/space out and things like that.
Fear because she have probably feared that they could "stigmatize" me or simply tell her to drug me, also you must understand that she was divorcied and could have feared how a "diagnosis" could have impacted on that.

--MY DAUGHTER--
I've tryied to have a diagnosis for my daughter. Actually (my wife more than me, for me many things are "normal") pointed out that our child is not completly normal, as I "was used by my family" to say, said: "I think she is intelligent", but she replied "yes, but it doesn't behave like other children". So I said "apart from the language she behave exactly like me, told my mum, everybody say that she is exactly like me". So she said "are you normal", "no I'm not, but I have a beautifull life (like your older son)" then she told me something I never thinked about and that I want to stress:

"when you told me about your childhood/adolescence I still can't get how you cope with it, how you was able to build yourself up, are you sure you aren't only really luky? Are you sure that if something went in a slightly different way you could have done it?". Then she said "Do you remember that little guy of our friends? You told that he is very like you, he has "AS"". Actually I didn't know what AS/HFA is. Now I know. Now many things are in their right place and after some hard vent from both of us we come up with a common strategy for our daughter.

A disclaimer: my mother never said I was Aspe or Autistic and she refused that when we told that probably our daughter is. But actually "looking at manuals" she always did the "right" things from "special education" point of view for both me and my child (she aways explain everything, she never force me into something, she helped me a lot with some homework, etc..).

--What can I say--
I don't know if your child is mature enough to understand a diagnosis. He could be grow up with particular social ideas and he could be scared by a "diagnosis". I don't know if IEP is "common" in USA, in Italy having something like IEP = dumb = bullied, unable to find a good work, etc..
I have a "strange guy" at work, he is probably on the spectrum, he started working with us with a "protected category" contract. I work with him everyday, he is very intelligent and works very well but for people he is "the protected category guy".

---So what?---
I think that knowing the diagnosis can scare him (or not, you should tell) but if you are going for IEP he MUST come.
I've started from elementary school (6 years old) to advocate for myself, I was not on IEP or the like, I simply advocate my need with every specific professor/teacher (the same at university). I was so able to advocate for "special needs" that my school-mate used me to advocate for them when I was at "scientific school" (13-18, I went to school 1 year early than others), also the ones who bullied me. I can't cope with artificial light, there were also other 2-3 students with that problem, I simply asked for sunlight. I had a lot of concentration problem without a PC, I asked If I could use it for homework instead of paper and so on. I simply used "logic" with my teachers/professors (ok sometimes also intimidation...) making them undestand that I had a need but It was not cheating (I still remember that one day when I was 16 an italian teacher give back our essay, I saw a 7. I asked her why. She answered that the essay was brillant but I made some miss-wrote error. After 1 hour discussion I had a 9 on my essay with the promise that I work on my problem).

I don't think I'll tell my daughter her spectrum-label too early, and I don't think I'll ask for IEP-like solution unless she'll really need it (for istance if she still not talk at 4-5 years age, I can't do differently). But yes. I'll say to her what's up, also at 3-4-5 years old or the like. I think that also a 2 years old child should know what's going on and how to cope with it cosciounsly. I still remember the fear I had as a child (far younger than yours). I actually known that I wasn't "normal" but not knowing what I had, I had fear to became crazy, became a serial killer or things like that. I NEVER TOLD to my mother or father those fear, never told about bulling, never told about my PERSONAL advocation with teachers. So DON'T ASSUME that "If he ask me, I'll tell him", he could not ask at all and live in fear. As for my daughter I'll give her the support she need, yes, at home or from specialist, but outside school as I can, other children are grown up with the "fear of different" and "racism like" propension. It's not good to let them know, also a "difficult" one must learn how the real word is, overprotecting is not good unless strictly needed.

---So what I think about the question---
I think you should choce the best time to tell him the true. Expecially because I can see both the "fear of the deasease" problem, both the opposite (he could think that because he is on the spectrum he can behave in a not-NT way and nobody could tell him different, a strategy that in the "long term" doesn't give him anything good).
I think you MUST give him partial tips. For istance if he is sensible to light (ASK him) you can ask for that to accomodate, if he has dyslexia you can ask for special support at school (if HE WANT) or simply help him with extra-training. What I want to tell is that you don't need to give him a label but you can simply say to him that there are people that think in the same way of him but the great majority think differently so sometimes people can misunderstand him, that usual people have some problem but he can have others and help him finding out what's strange and work TOGETHER the better way to accomodate it (in the short term) and make him able to cope with it (in the long term"), you have the fortune to have another and with a good life boy with Aspenger, use it. If your young child ask you if he is "autistic" or if he have "something", tell him "yes", you are not ordinary, you are on the spectrum (I think autistic could be scarry for a child, at least in italy), also your brother is, and he is happy, no? So don't worry.
So if you are going for IEP revision, prepare with him a list of thing that can improve his life and let him go talk with their, you can not mention Autism or Aspenger or whatever, you can simply give a list of particular problem to solve. But he must come.

Nightsun, thank you so much for your very well-thought-out and kind post. I have read it carefully, and completely agree with what you have said.

I have found out that I don't have to take my son to this IEP, but I will have to take him to the IEP that is transitional to high school (ages 14-18) that will be scheduled for the spring. I know that we will have told my son by then.

I just want to spend some time talking everything out with my husband before we talk with my son. I agree, the label of "autism" might be scary to him, and especially since he's recognized other children with autism. But how does one tell a child about their being on the spectrum without saying the word "autism"? And frankly, how does one begin this conversation, especially if the child hasn't brought the subject up in some way themselves? And, you know, part of me wants to ask him the question -- "Do you ever feel different from your friends?" If he says no, then why tell him anything about his diagnosis?

But, I do think that we will be telling him soon.

your son is very lucky to have parents like you and your husband.

and thanks Nightsun for sharing your story. I experience a lot of worry over being crazy or getting worse as well. when I was a teen I was sure I would die before the age of 25. it's good to understand AS and know that I have good qualities and am not crazy

While you're not candidates for Worst Parent of the Year, I very vehemently disagree with your reasoning. I mean, I've been mostly happy with life; I've had good jobs, except for this last one. I have multiple college degrees, healthy relationships, etc. I was no better or worse for knowing; my parents went though an elaborate effort to hide a diagnosis from me, and I still had plenty of issues from that diagnosis despite not knowing about it. When you experience depression, suicidal thoughts, and you have issues with social skills (even if others perceive them to be minor), it's still good to know why.

I don't like the idea that ignorance is bliss. That's a very dangerous way to live life.

This is such an inflammatory topic on so many levels. I'm a mom of five, three of my boys are dx on the spectrum, my eldest being the most severely impaired, while being the least 'aware' necessarily of his impairment. We parent with the open and honest attitude about everything. However, that doesn't necessarily mean that we go in for labels. I remember once three or four years ago when we were out in Boston seeing another gastro specialists that my eldest saw a poster on the wall about Autism and he said to me "Mom, I'm Autistic?" As though it were a revalation to him. I said yes, AC you are. That was it. It never made a difference to him before, and hasn't seemed to make a difference to him since. Although, when I recently asked him if he'd like it if I found him an online community of other kids on the spectrum he was very enthusiastic about the idea. I think that he might think it means they have the same 'obsessions' as he does. I'm not sure that he gets that having Autism doesn't mean that everyone who has Autism is homogenous. Still, looking for a community for him is how I found this place. We'll see what he thinks.

My point in answering this post is that I had the same concerns about having AC at his IEP meetings. I wasn't sure how aware he was of all the work that was bieng put "extra" into his education that neurotypical kids didn't have or didn't need. I worried that his being there would emphasize for him how different he is. He's been very lucky. He was diagnosed at 2 and a half years old, though it might have been younger if circumstances had been different. He's been in the same school system since he was 3 years old and has had miraculously wonderful people working with him over the years, despite the severity of ignorance on the subject at the time of his diagnosis. Despite his differences, he's never suffered abuses from peers and rarely from anyone at all. Despite not having any close companions, he doesn't seem to pine for them. Overall, I've never known a happier or more well adjusted teen ager. He amazes and impresses me every day. I even envy him.

So, I worried ... would going to his IEP freak him out or make him feel different when he generally doesn't pay much heed to his differences. Still, he is a very smart person, and I also felt he had a lot to bring to his IEP meetings, his ability to communicate his own feelings and opinions has increased slowly but steadily as he's gotten older, and though his emotional maturity is certainly not to the same "age equivilance" as the kids he goes to school with, it's definitely not the three years behind that we've always noted in the past. It's more a difference than a lagging now. So, we decided to let him come.

He's a junior in high school now, and has been at every IEP meeting since the transition. I can tell you that he gets very bored with the process pretty quickly. He is only interested if they are talking about something that applies to his very particular goals for his future and the minutia doesn't interest him all that much. However, I think the experience is good for him, because eventually he is going to have to take a stab at advocating for himself. Though it may not be as soon as I would have hoped, from the looks of things today.

On the flip side of the situation, one of my younger boys who is not so severely impaired as AC was devastated by the differences between himself and his neurotypical peers. He had great bouts of depression over it, even at the early ages of 7 and 8. He's going to be 11 soon. He helped us make the decision to place him in a special school. Although, his diagnosis on the spectrum didn't come until he was 9. He was previously diagnosed with a huge variety of anxieties and ADHD. Either way he'd had a one-one aide in his school system from the time he hit elementary school, but by third grade it was clear that regular education was just torturing him, not because he wasn't brilliant and able to learn all the things that they were teaching him, but because his differences were causing him so much distress that he could focus on very little else. He is comforted to have a diagnoses that covers the strange things that he experiences, and is thrilled with his new school. (Though I don't bring him to IEP meetings yet, I hadn't really thought about it til now.) He tells us, "Everybody loves me here. They really get me. I fit in." Those are things that every kid needs, I think.

AC never felt left out, because the attention that he got from his peers was all the attention that he really wanted, needed, or could handle. Everyone was kind, and most made efforts to be as helpful to him as the adult aides working with him were. Z and R don't have it quite so easy. It's harder to spot their differences, so their differences are made a bigger deal out of, and they want more from their peers than AC ever did. So, their feelings are more easily hurt.

I think the thing to remember is that it's not about the label, it's about the needs of the child. If you have a child that is able to express (in whatever way) his or her own needs, you need to take that into account and empower the child to be as much of a guiding factor in the development of his IEP as he or she is capable of ... whether or not they go to meetings. As long as you never think you know more about what your kid needs than your kid does, you have a good starting point.

At least, we seem to have been going in the right direction here with those philosophies. AC is a second honors student in regular education classes at his high school. He's had his first crush on a girl and informed me that the problem with crushes is that they always break your heart (because the girl he like already had a boyfriend). Sensitive Z has lost more crushes than his brother has even imagined for his fan fictions. Moving away breaks many a young lad's heart, and unfortunately young girls often move away when their parents get new circumstances. But he too is doing much much much better at his new school. Both boys know that they can come to me and tell me what they need when they need it. That and a keen weather eye should hopefully prevent too much parental poop ups in the future. LOL

Hope this wasn't preachy ... never know how my tone is coming off on these internet things.

Hello:

Seems like this has gone off of tangent here. I told my kid when he was, goodness, about 7 I think. He listened, said, "Oh wow, that's why I always thought my brain was different." and went back to playing a computer game. Then I had a discussion with him about torretts syndrome and how the doctor thinks he might have it. His response: "Oh, that's why I keep spitting on the floor without meaning to." He thinks it is interesting, but that is about it.

With the IEP thing, I've never really thought about it. I've always just gone alone for it. When he gets a little older (as in more able to control himself) I think it would probably be a good idea for him to come. Like people are saying, middle school sometime, that seems like a good time. I have one coming up soon, but I don't think I will take him. If I took him now, I wouldn't be able to concentrate at all. He has a habit of finding something seriously interesting and he just starts talking right whoever is talking. He would probably switch back and forth between talking about something else and wandering off to look for things on the shelf to play with. If he was quiet, I doubt he would really even listen, but just sit and play with whatever he found. He is nine right now.