HELP! Conflicting reports from therapists and IEP

[disneydreamin247]

DS4 has been in pre-k since September. Before that he was in Early Intervention. While he was in IE he was diagnosed PDD-NOS. After he was diagnosed, he seemed to get worse every day. He is very high functioning, but his behaviors and tantrums are about 85% of the problem. He is very verbal and his cognitive skills have greatly increased.

When he started school, all of the teachers and therapists kept telling me he's great in school and doesn't belong there. They said he is very well behaved, and doesn't have any sensory issues at all. They even went so far as to suggest that he fakes a disability to get his way! They want me to put him in a regular preschool with NT kids. The thing is, when DS is home he has not just issues with behavior and tantrums, but a lot of sensory issues. He recently started seeing a counselor outside of school and she has noticed it also. Then they send me home his IEP and it totally contradicts everything they tell me! All of their recommendations are for a special ed teacher. The reports and goals are all indicative of him NOT being NT. I realize that he heas greatly improved since he started school, and I would like to move him to an integrated class where he could have role models instead of BEING the role model. However, to me it just seems crazy that after reading his IEP they want to move him to a universal pre-k with all NT kids and a teacher who doesn't know how to handle DS' issues.


Also, this new counselor also diagnosed him with anxiety disorder. Between that and his immature social skills I really feel that he belongs in special ed for the time being.

 

[alizesmom]

If I understand you correctly, you are being told positive things but the written IEP reflects the need to continue in the present classroom. What is written is what counts. As to being told how well he's doing, it makes me think of my son's teacher who was telling me things like he was walking in a gait trainer when he didn't even have head control. I don't know if they are just natually unrealistic or if they think they are doing us a favor by saying good things. I hope you get it straightened out. Hugs and prayers. Karen

 

[disneydreamin247]

Thanks! It's hard enough to deal with a child's disability without having to convince other people he really has one. The thing about this school is I have seen them do it before. My DSis is severely disabled. She is 12 yrs old with the mentality of an 18 month old. She is non verbal and has a garden variety if disabilities and disorders. Well, her teachers wrote on her progress report that she could do MATH and was able to take the straw from a juice box, open it, and put it in the juice box. I don't understand what their reasons are for doing this at all.

 

[ecki]

Y'know, if the school feels he is ready for a UPK class, it might not hurt to try it. If it doesn't work out, then you document it and request he be moved. Placements are never set in stone, they can always be changed.

My older DD is PDD-NOS with Anxiety Disorder. She also used to have crazy sensory issues. She went to a regular private Montessori school for PreK and Kindy with OT and Play Therapy provided by the school district. At first she was having 20 - 30 meltdowns PER DAY, some lasting an hour straight. But her teacher was up to the challenge and even though she was not a special ed teacher, she accepted everyone's suggestions on how to deal with her.

When she was first diagnosed, the school district wanted to take her out of the Montessori school and put her in an integrated PreK class. Well, I told them no, since she hates change and that would be a BIG change. So she stayed and we got it down to 2 or 3 meltdowns per day. We took her out of the Montessori school this year (because she would no longer have that wonderful teacher -- and the school raised their tuition!) and is in regular 1st grade in public school and now we're down to 2 or 3 meltdowns a week.

Anyway, I guess my point is that things WILL get better! Good luck with whatever you choose.

 

[bookwormde]

Your child is getting to the age where much more is expected of him “socially”, it is not at all uncommon for a spectrum child to function well at home and have problems at school or the other way around where they expend tremendous energy at school to “keep it together” and when they get home they let all that anxiety out where if is “safe”.

You are an equal partner is the development of your child’s IEP. The school should not be telling you what should be done, the whole team should be working cooperatively to get your sons needs. You do have to educate yourself about “spectrum” issues. If you have not already read Tony Attwood, The complete guide to Aspergers C2007 (available on Amazon) then you should. This is the age where anxiety begins to become a big issue and the typical Aspergers manifestations begin to really show. These include soothing (de-stressing) behavior such as repetitive movements or self-absorbed theatrical like manifestations. He may also start to have very specialized and sometimes somewhat unusual interests.

Your child’s school’s confusion is typical for educators and clinician with a limited knowledge of the higher end or the spectrum.

What your child needs now is a significant amount of social skills/theory of mind curriculum work every week by someone who is trained in that area for children with social skills deficits. This should be at least 2 if not 4 hours per week if individual or small group (5 or less) and additional time trying to generalize the skills into the rest of his school time.

It sound like he is high functioning enough move into the regular education environment, but he will need a paraprofessional to “guide” him socially and with executive functions issues as the academic curriculum gets more complicated and to effectively generalize the social skills which he is learning in individual and small group settings. Make sure the paraprofessional has some training in Aspergers or is willing to get some “up front”. Having someone with him who does not “get it” can be very harmful and will cause greatly increase levels of anxiety and the associated manifestations and co morbidities.

The “behaviors” you are seeing are actually not classic behavior but manifestations of his spectrum issues caused by high levels of chronic anxiety. Appropriate educational and therapeutic supports can reduce this is a relatively short period of time.

It does not sound like any of your current clinicians are highly experience with Apergers so I would try to find one who has a significant portion of their practice dedicated to this and is doing at s 50 hours per year in continuing education from nationally known sources in this area. You should have him evaluated before he starts kindergarten so there will be no “excuses” for the school not providing the proper supports for your child to receive an appropriate education in keeping with the high level of his cognitive capabilities.

I know that this is a lot to take in but son is beginning a journey, which with the proper supports can be wonderful, and fulfilling as he “learns” about his abilities and faces the challenges of the things which are more challenging for him.

Even if he does not meet the formal DSM-iv Aspergers diagnosis in the future, he will still need the same basic supports, they are just harder to obtain

You can look at some of the other threads in this forum that I have posted on and you will get a lot of good information from all the different people who have posted.

If you have any more questions or concerns please ask here or feel free to PM me.

bookwormde

 

[disneydreamin247]

Thanks so much for the input guys! I have been thinking Aspergers. Particularly because of his social skills, or lack there of. Whenever he is around children, even his classmates that he is with every day, he is a loner. He doesn't want to be with them or talk to them. Aside from his older cousins ranging in ages from 6-17 he will only play with me. I just don't see how the teachers and therapists aren't seeing it, or at least tell ME that they don't see it because in his IEP they paint a totally different picture.

 

[starbox]

As a public school teacher and mother of a kid that receives services for gifted, SEC, assistive technology, occupational therapy AND has a medical IEP, I encourage you to be assertive and speak what you know about your child clearly and loudly - going to higher administration if you feel your voice is not being heard.

The reality is that many of the people in charge of IEPs are overworked with huge caseloads and simply don't know your child the way you do. They also may lack an awareness of the subtleties of your child's diagnosis and needs. You'll always be the best advocate.

As a mom - DS has dysgraphia and it took us six years of us insisting to get him correctly tested and diagnosed. It's taken another year to get tested and qualify for assistive technology. If we had simply listened to what we were being told was best for our child he'd be incorrectly serviced right now.

As a teacher I could share horror stories about IEP mistakes. I've seen stuff on IEPs that you simply would not believe.

Listen to what your gut is telling you, and don't let anybody shush you.

 

[BeckyScott]

Then they send me home his IEP and it totally contradicts everything they tell me!

BIG ALARM BELLS!!!

They sent home his IEP? Do you mean that you were at a meeting and discussed everything and later they sent home a finished copy, or do you mean his IEP just showed up in his backpack one day?

The stuff on his IEP shouldn't be a surprise to you. You should have been at the meeting when it was all decided. This is something many schools will try to pull, and it's totally illegal to do. You're supposed to be there during IEP meetings, you're a part of the team, and you get input on the IEP. If they haven't been doing that, then they've been wrong wrong wrong.

Put it in writing that you want an IEP meeting, must be in writing, and hand-deliver it to the Sp Ed coordinator at the school. In the letter, say you want an IEP meeting in the next two weeks, because either a) you were not at his IEP meeting and according to IDEA you are legally entitled to be a part of the IEP team, or b) because you have concerns about the IEP goals. It doesn't even matter why you want one, you have the right to call an IEP meeting whenever you want one. If they call you and try to get out of it, which they probably will, stick to your guns and tell them you want one, period, end of story.

I hate to be the bearer of bad news, but generally speaking the schools will try to get out of as much as they can (I believe "screw you over" is the proper term) and it is important for you to establish early that you know your rights under IDEA.

If you do not already own the Wrightslaw book "From Emotion To Advocacy", get a copy, it will be very very useful to you.

You have a right to have input on his IEP, and you have a right to have things explained to you in a way that you understand.

 

[disneydreamin247]

You guys have been so much help! Seriously, as a single parent I don't have much support and no one to help me with this process. They did his IEP over the phone because they scheduled it for while I was at work, and didn't tell me until 4 days before it. I had gone through the same thing with Early Intervention. They denied me ABA services and increased hours until I threatened to take them to an impartial hearing. Then suddenly they could approve ABA and an additional 10 hours a week plus 3x30 OT.

I'm going to demand he stays in special ed, and they he be moved to an integrated class.

 

[tw1nsmom]

As others have said, you know your child better than anyone else. I'm a big proponent of integration and believe it benefits most students. Most, not all. If you feel your child needs a smaller special ed. class to succeed, fight for that.

I'm trying to get our district to see the need to implement a class that is team taught and integrated. When I was teaching (many moons ago) I subbed in a class (in a different district) that was team taught by a special ed and regular ed teacher. It had about 20 kids in it, of whom approximately 7 were identified. There were also two one-on-one aides and a shared aide in the class. It really worked beautifully.

When it comes to sending home a pre-written IEP (not exactly the case with the OP as she had participated in the meeting via phone), NY state schools usually get around this by calling it a Draft IEP. They're supposed to be completely open to changing what's in it when the real meeting occurs. In reality, getting them to change anything is like pulling teeth.

To the OP...in the future, I would really avoid participating via phone at the IEP meetings. You have to be allowed to participate, so the next time they schedule a meeting at a time that's inconvenient for you, request a new time. Also, they legally have to notify you, in writing, of a meeting 5 days in advance unless you waive those rights. The only reason for such short notice is if there was an emergency meeting called. Even then, you have a right to request a different time.

Here's a good resource for information: http://www.parenttoparentnys.org/index.html

 

[bookwormde]

It is amazing how “services” options suddenly appear when they know you are serious about the “process” option.

Just so you know they have to give you 10 days (I will have to go look it to be sure of the number of days)(yes I found it and it is 10 working days) notice of a meeting unless you waive that right (in writing). Also “non face to face” meetings are only acceptable if agreeable to all parties. If you cannot get out of work and a “phone” meeting is not what you want then they have to schedule it when you are available. I agree, “phone” meetings are a very bad idea unless you are only addressing a single simple item that has had a strong consensus previously.

Any IEP document that you (and the rest of the team) have not signed off on is a “draft” and is subject to revision if a member does not feel that it properly represents the “agreement” or consensus of the team.

I will second the recommendation of the Wrights law books. I had the opportunity to attend one of his seminars (on both IDEA and NCLB) His approach is both practical and effective. If you get to the situation where you are down to the nitty-grity of the regulations then additionally I would recommend his special education law, second edition.

He stresses to always try to work cooperatively but to not be afraid to insist on your child’s rights.

Just bringing his books and putting them on the table in front of you, even if you have not fully read them, generally they have an amazing effect if things are getting difficult from a regulations standpoint.

I am in the process of expanding the level (time allocation and other IEP details) of services for my son and have met the same resistance that I thought we had gotten past 18 months ago, so back to calling for IEP meetings and quoting regulations. I suspect I will be in “process” before it is done but in one way I am looking forward to representing my son in Federal District Court. I still hope it can be settled cooperatively within the team.

I will probably post on a new thread a redacted version of my letter to the IEP team in the next few days partially just to vent and also to help others who reach an apparent district impasse.

bookwormde