Does your IEP Help or Hinder your Child?

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My middle child, DS#2 was recently officially diagnosed with Autism Spectrum. My oldest child, DS#1, was informally diagnosed with Asperger's when he was six and I suspected the same issues with my second son right away. He was in Early On for speech because he wasn't talking as much as he was supposed to but he met all of his milestones other than that on time or early and has above average IQ and was reading at three.

Now DS#2 has a fresh diagnosis and just started Kindergarten. I hesitated to get him a diagnosis but this summer at home we REALLY struggled. He has acquaintances just like my other son, wants to play with kids but lacks a good friend despite a few attempts by me (while trying to overcome my own AS and anxiety and reaching out to a couple Moms of kids the same age) to change that. The one child he seems to really like has parents who are constantly working and so he doesn't get play dates despite my bringing it up two or three times now.

At his evaluation they suggested I ask about getting him an IEP, mainly for safety reasons because he does "elope", has been known to jump off of things that are too high, and seems to lack that necessary fear of danger in some situations like when crossing the road despite working on it repeatedly. He behaves so well at school most of the time like my oldest, that they would never know probably that he had Autism Spectrum/Asperger's unless they were trained or have experience with high functioning kids. He flies under the radar normally not because he doesn't have areas that need to be strengthened but because instead of saying he's sad, scared, mad, etc., he gets frustrated and screams or refuses to do anything and hides. Teachers interpret this as misbehavior or oppositional instead of understanding he is usually overwhelmed or misunderstood something which is the case most of the time. My oldest used to just cry or hide which leant him more empathy from people, but my youngest son screams angrily and hides which garners less empathy and more comments of "that kid needs some punishment" which just exacerbates the problem instead of addressing it.

Basically it boils down to this: I am scared of him getting labeled or being treated differently. Not good differently, negative differently. I'm afraid that he will either be allowed to do whatever he wants and learn to take advantage of that (or the opposite extreme), he will be "written off" on areas of weakness instead of trying to work on them and utilizing his strengths to their utmost potential, that he will feel hurt, different or outcast if they choose to work with him individually in a classroom setting (there have been a few kids in the past that have academic trouble that another teacher will work with inside the classroom with the others and the children and parents clearly "single out" these kids in a negative way sadly), that he won't be challenged academically or thrive academically if they focus more on sensory (the OT suggested a 25% fine motor to a 75% gross motor), but most of all that he won't be happy and learn the things he needs to be happy in the future. I guess I just have a million and one worries for him and I know I need to stop stressing but because I have family that have said to not worry about his weaknesses and to not get a diagnosis because I'm being silly and he's just a typical kid, I second guess myself that I did the right thing getting the diagnosis and now if I should pursue an IEP in the first place.

What has been your experience with getting an IEP at school? Did you find it helped or hindered your child more?

What wee the recommendations for school from the person diagnosing him?

My ASD/ADHD son has an IEP (5 years running), and my pure ADHD son has a 504 plan (new this year). There is also something called a Behavioral Intervention Plan. I do not know which one(s) would be appropriate for your case.

What I can share is that the IEP and 504 plans have been a godsend. I have had wonderful success with the IEP process in getting my son the help he needs. He actually had the IEP long before the official ASD diagnosis, to cover his problems with reading comprehension, inference and expressive language. Now that he was diagnosed this summer, we will be updating the IEP for the additional things the psychologist recommended that the speech therapist can do with him. There may be a 504 put in place to protect him in the event of meltdowns at school. My other son's 504 plan is in place specifically to protect him from getting punished for something he can't really control (inattention), and puts in place specific things that the teacher will do with him to help him be able to concentrate better. Because if he can't concentrate he can't learn.

Basically for my kids, the IEP is addressing specific learning disabilities, and the 504 plan is for accommodations for activities of daily living, of which learning is one. I don't know specifically what the BIP plan does, but I imagine that it provides non-punishment accommodations for managing disruptive behaviors. Someone will correct me if I am wrong.

Also, I write this with the caveat that I have been fortunate to work with teachers, specialists and administrators who take the IEP/504/BIP process seriously, and work well with parents in giving the kids what they need to be successful. So there has been no negativity from have these plans in place. In fact, the 504 plan is in place for my youngest son specifically so he would NOT be labeled as a problem kid.

It varies so much from school to school that I would see out other parents in your area whose kids have autism on the mild end and ask what their experience has been with the IEP process in your district.

My son eloped and hid and had meltdowns where he would throw things. The district we were in just put in token efforts, so even having an IEP did nothing to help with the elopement, etc. It does limit the number of days a kid can be suspended for misbehaving to 10, however. He needed to be out of general ed and in a smaller setting, so after we moved to a better district, the IEP process actually worked for him and the new district is paying for his school.

My experience has been that you can't ask for an IEP, you choose whether to tell them he has this diagnosis. They decide whether it has any educational impact. You get to ask sympathetic interested and concerned questions in the event of difficulties. But if they do not see any impact they won't classify. But there has to be pressure by teachers that they want help to get a child classified in my experience. Maybe parents pushing can make that happen, I don't know.

In our case the IEP was a huge help. It is basically a contract saying, "we will do this for your child."

My son got services through the IEP, and accommodations, including my personal favorite for young ASD kids: what I called the "escape clause" (this allows your child to go to a designated safe and quiet spot whenever he feels he is getting overly stressed and is nearly a meltdown, without having to receive permission first).

Both of which allowed him to work to his full potential instead of feeling hindered and frustrated. And the escape clause was an important element to transferring responsibility to him for managing his own overload and stress, thus keeping the meltdowns in check. Not to mention, preventing him from losing it in class.

It is a document you sign, and you are always free to say, "I don't think my child needs that." One of my son's biggest problems was learning to write (he is disgraphic), and at one point voice to text software was suggested. I said no, as I did not want him to become dependent on software to that level. So, the offer never made it into the IEP. Instead, he was allowed scribing assistance (the best option for him) and/or use of a tape recorder (not really used) when long written assignments had to be undertaken.

IEPs can be VERY difficult to get, so having one in place before you feel a true need for it could prove fortuitous. If you don't take the offer, once things get difficult, it could take a full school year to get one.

But, as others have said, all of these things vary by school and district. So, test my points against what you know locally. Then decide.

PS - my son is a Senior in high school and has been off IEP for a while. We still have a 504 for the disgrahia, guaranteeing he can type instead of handwrite, but that is it.

The school is open about developing an IEP, but I do have to present the paperwork I have so far to them. He has only had a diagnoses and OT so far, not any ABA or speech that was suggested but that is because they schedule new patients in those areas of the network so far out we have to wait until October. He also has a sleep evaluation in October because he has difficulty sleeping but I think a lot of that is because of his nightmares and fears.

We are a small community and I don't know anyone in the school with Autism, high functioning or otherwise, but that is a great suggestion. I mostly just see the other parents in the hallways, at events, etc. and really don't have any families we know outside of school which doesn't help. I think I know the staff better than the parents at this point. There isn't any support really even in our entire county. There is one support group I emailed but never got a response from.

I'm hoping that an IEP won't force things upon him and it sounds to me from the comments that I have a choice in what does and doesn't get added to an IEP. Is that right?

He's already had a couple of "do-overs" already (not really a time out and not really the name they give it but basically the same concept, to make the child aware of what the right behavior should be so they can try and do better next time) and I noticed the negative tone in one staff member with both of my kids already this year (she always sounds like that though). That is the big one I need to address though. Both of my kids will basically either not hear you or get defensive if you address them with a negative tone. Positive or neutral tones will earn anyone respect and cooperation but I know a couple of teachers that always seem to have that negative tone (I think they are just like that) and they are the ones my oldest has had the most trouble with. I know this is hard at times because I face the same problem at home if it's been a bad day or I'm just tired, but I've learned it will take twice as long or be twice as difficult without adjusting my tone.

My son's IEP has been extremely beneficial. The fact that it is revamped annually helped tailor to his needs as he grew older was wonderful. He had support avoiding/handling meltdowns in school, lack of focus, and handling social problems in elementary school. He now gets help mostly with staying organized with schoolwork.

I wouldn't worry about children being labeled so much. Usually the child knows he's different, and so do the other kids--with or without the label. Avoiding the acknowledgement of differences may lead to more of a feeling that those differences are "wrong".

As a sidenote, I've noticed that some teachers "get" my son, and some just see him as an obstinate pain in their backsides. The label, and accompanying IEP has provided a buffer for him to be heard and treated fairly in the latter situations.

This is a really positive thread from my point of view in that it's got neurotypical and not completely typical and neuroatypical people sharing experiences and offering support and I don't see that kind of working together happen easily IRL. Even here in WrongPlanet discussions, I notice we segregate ourselves some and many threads are mostly people with ASD or primarily people who don't have ASD.

GO Parents Discussion!! World could use more mixing and working together!

My daughter's IEP is essential for her in a mainstream school.
She is not forced to undergo the same academic hurdles such as standardised national testing or other KPIs...
She likes school, because of her IEP.

I would try to get any errors corrected just in case they don't believe you they they are errors. It might be fine, but I would be too nervous not to try anyway, in case the errors would create problems.