Pervasive Developmental Disorder (PDD)-not otherwise specified and school

[helpmehelphim]

I need more help understanding how todeal with my school (elementary). My son has and IEP that addresses behavior issues which I believe are brought on by anxiety. He has a diagnosis of anxiety and Pervasive Developmental Disorder (PDD)-not otherwise specified. He is bright, on the honor roll and in gifted studies. Unfortunately, it seems these qualities only make the situation worse because the principal and teachers seem to equate his intelligence with "willful behavior". He talks out of turn, he talks to himself loudly, he laughs inappropriately, and he has trouble sitting still. This is especially observeable after lunch. In his IEP we have addressed the lunchroom as a trigger (Sensory issues...Sensory Integration Disorder (SID)) with the bright lights, social stresses, talking, smells, etc. We agreed that he would eat and then be allowed to do something positive like reading to kinders, helping in the office, etc. However, because he does not go up to them and ask to go do this, they don't make it happen. They say "he needs to take responsibility and tell us what he needs". Since when? The high anxiety also makes that difficult as he doesn't go up and talk to adults much (unless they are family) or even some children. The school psychologist says that the district doesn't recognize Pervasive Developmental Disorder (PDD)-not otherwise specified and even though that could be fought perhaps, we are moving to a different state this summer and there's only 3 weeks left of school. Yesterday, the principal was upset/disappointed with his whole class over behavior and was "talking" with them. He spoke out of turn or to another child (he's not suppose to do that...I understand that) and he says that the principal turned to his teacher and said "I don't care what excuses his mother brings in, he's doing this on purpose". He could hear her. Did he really hear her correctly and understand? I would investigate that if I hadn't had this same situation happen before. His teacher does not believe he has any disorder and has said as much. My issues are:

1. I expect the principal to speak with me about her opinions, not cause further embarassment to my child.
2. We have an IEP which isn't addressed by the school so when these things happen after lunch (and they consistently do if they happen at all). He hasn't been allowed to leave the classroom because when he's asked (they don't implement a card system which would take away the embarassment and perhaps a bit of the anxiety) he has been told "not now" and put behind a partition in the classroom.
3. The gifted studies (head of Special Education) instructor changed her approach with him based on our IEP meetings and has seen positive changes.
4. The classroom teacher hasn't changed things and sees no change.

My son was hospitalized last October. Afterwards, we got the neuropsychologist evaluation and I started calling IEP meetings. My son's psychiatrist has agreed to write something today after a discussion I had with her regarding this incident that I could take to the principal to again try and bring about some understanding of the anxiety and behavior issues.

I apologize for sounding emotional. It's just that any type of discrimination really affects my spirit and I'm left feeling nauseous. Then when I mix in that it's my son....

Any advice or help is appreciated. School is out in 3 weeks...

Thanks!

 

[Lizz]

Hi....

I'm so very sorry that you are dealing with this. Your school personnel are out of line and in my opinion, unprofessional

First of all, your sd cannot decide which disorder is will "recognize". That's like say "we don't recognize diabetes." Pervasive Developmental Disorder (PDD)-not otherwise specified or otherwise is a recognized, psychological disorder and you have a disagnosis for a qualified professional. End of story. Your child was found eligible for sped services and has an IEP. The school district is obligated to implement and maintain the IEP. Teachers cannot decide NOT to follow the IEP, it is an enforceable plan and you have legal recourse if they don't.

I would request that a meeting be held to review the IEP and point out to them what is NOT be implemented and request that they put in writing, a plan to do so. Putting it in writing may include changing the behavior plan, offering extra services, etc. These are changes to the IEP and must be handled with adendum added to the IEP of certain parts of it being re-written. I would let them know that there unprofessional behavior (speaking about you in ear shot of your child, not allowing him to leave the classroom, etc will not be tolerated and should they happen again you will persue administrative action within the SD. They clearly do not understand anxiety disorders and are inflicting harm on your child due to their own ignorance or incompetence. That needs to stop immediately.

I would not go gently on them. Anxiety disorders can become more complicated and.....you really don't need to do that. What was written into the IEP seems failry simple to implement and quite frankly---they don't have to like it, they just need to do it.

So, request an IEP meeting and do it in writing. Don't let them tell you you don't need one, because you can request one at any time for any reason and they must comply.

Good Luck
Lizz

 

[SRL]

I agree with Lizz--you MUST tackle them head on and if it were me it would be no more Mrs. Nice Guy. Since they have opted to toally ignore the diagnosis of Pervasive Developmental Disorder (PDD) you can make a request for a private reevaluation at district expense. This will be very costly to them--make sure that you make this request in writing and send a copy to the director of special education. In fact, if you haven't already done so it would be a good time to bring in the director of special education since they 1) aren't recognizing the official diagnosis and 2) aren't putting goals into place to address his issues. "After extensive testing, my son has been formally diagnosed by a neuropsychologist with Pervasive Developmental Disorder (PDD)-not otherwise specified and Anxiety Disorder. Staff members on my son's team contest this diagnosis and are not willing to incorporate goals and accomodations into my son's IEP to meet his needs..." I've also known parents who have had incredibly rapid results with one telephone call to the district superintendent. Sometimes you get school staff members who are major control freaks whose actions are their own and who aren't acting in line with the philosophy of the district. If school staff members are ignoring medical/mental health diagnosis's assigned by qualified professionals then it would be in the best interest of all children at the school to make sure higher ups know about it.

I've mentioned before that my district has done a lot of staff training on Autism so just to give you an idea of the differences. My son also has anxiety issues and had a hard time approaching adults. Yes, ultimately we wanted him to take the responsibility to let staff members know when he needed relief but they helped him get there. When he was at his worse, the teacher asked him and we also made up laminated cards with options so he could just hand one to her instead of having to speak. Goals were written into his IEP in the speech/social area along the way to address various social anxiety issues: asking the teacher a question, entering a group of students, walking side by side with another person instead of ahead of them, etc. When he was struggling seriously with anxiety we sat together as a team and generated a bunch of ideas to help him through immediate tough spots--a lot of good ideas came out of those sessions and I wound up using some of their ideas and the psycholoigst took some of my ideas to use with students with similar issues in other schools. Do some prep work before your meeting and list out your son's problem areas at school and then start gathering up ideas for ways for the school to address those head on. It's time to make the school step up to their responsibility.

 

[helpmehelphim]

Thank you both so much! I really appreciate your time and advice with this complicated stuff. I think I am finally becoming more of the advocate and frontal lobe my kid needs now. I've truly had it with professionals who continue to insist that teaching to the middle is the only way to go. I'm finally "getting it" how important it is to model not only proper and respectful communication but also how important my child is to him. I called his psychiatrist and we discussed this whole matter for so long by telephone. She really feels that our positive discipline changes and CPS have made a world of difference with our son and that one can see it at school by how well he is doing in gifted studies with that instructor who has put positive modifications into place as well. She has also made it possible for him to take small breaks and to stand when he wants (as he gets uncomfortable staying seated for long periods). They worked these things out together with his input and she hasn't seen talking for a long time. So, she's writing a letter to the principal, school psychologist and district head of Special Education stating as much and stating that she is concerned that their inability to follow his IEP is causing increased depression and directly affecting his health which has to be the biggest concern to all. She is also offering to assist the district in advising them on positive discipline techniques that benefit all children not just with issues of anxiety, austism, etc. I spoke with the school psychologist who was in agreement with me. Our school gets out the 3rd week of May and they have 10 days from the date of request for the IEP meeting. That would leave only about a week of school. We are moving and they won't be back in that school (they are 5th graders and go to middle school next year too). I am hopeful that the letter helps. After my hour long talk with the teacher that night, things were much better yesterday in the classroom for my son. I will continue to be involved on a daily basis if necessary to make sure we are all on the same page. If it weren't the end of the year, and we weren't moving, I'd do it full force. I'd invite his psychiatrist too and she said she'd rearrange her schedule to come. She says that she's constantly speaking with SWers about their kids in foster care and trying to get them to understand the effects of addressing the positives with kids and how that can change things a lot of times for the better. Thanks again for your help. I carry this with me and will use if needed (hopefully I won't need it). Hugs you guys!

 

[SRL]

If he's moving up to the middle school then his team should have been on the ball already in planning his transition to the new school. Representative staff members from both schools should be involved in creating a plan to help him make a smooth transition, including visits to the school, meeting his next year's teachers, etc. Moving into the middle school is often a MAJOR problem for children with anxiety because of the increased size, new environment and higher level of social demands. Have they not addressed this at all?

 

[helpmehelphim]

SRL- Thanks for this reply. We are moving out of state. My husband had to change jobs and we are moving to the Raleigh-Durham area in North Carolina. The kids are in school there a couple of weeks longer than my boys here so we're going out there to spend time working on what you are talking about. I have been in touch with people in that school district. I also have a friend whose sister is a middle school teacher in that system and she has been a great help. I'm very, very nervous about it all because of the change and his reactions to change. He absolutely hates the school he's at now (not a big surprise) and says he's excited about moving and going to a different school. He reads the websites of the different middle schools there and talks about how much better it will be having different teachers and changing classes....you know that I cringe inside. But, he's interested and upbeat. I know better than to trust that the move will be easy because he says he's excited today. 10-yr. old kids change their minds about likes and dislikes by the minute. If you have any advise for me about moving, please don't hesitate to write it down. I have gotten copies of all the records from the gifted program for both boys and his amended IEPs written after getting his diagnosis. You see we just got a diagnosis during this school year even though he's had these complexities from the get-go. It had always been pretty mild before but his inflexibility and frustration has really increased with age. I feel like I lost precious time looking for answers from doctors who really didn't have a clue (no one did) and made his suffering much worse. I really want to do all I can now to make sure that he gets what he needs. Any help is sincerely appreciated. Thanks so much!

 

[Martie]

I think you need to check NC law. Gifted ed is not Federal so that means that states may do or not do what they like.

The advice I always give parents with kids happily in gifted programs is DON'T MOVE.

Of course, that advice isn't always realistic as in your case.

I will join the chorus on what a difficult situation middle school can be for anxious kids--especially boys.

The suggestions you have been given are really helpful and I have nothing to add except the above note on gifted programs.

Martie

 

[helpmehelphim]

Thanks Martie. Yes, "don't move" is good advice, it just won't pay the bills in our case. You know it's a quandry because this district that we are in is terrible. There is a huge lawsuit right now in our country brought by the parents of an Autistic child who felt forced to file after the district declined to reimburse them for a communication device and really blundered several IEPs. Instead of settle, the district has spent over $2 million defending the suit which was just ruled against them again by the Court of Appeals. And get this, the board just voted to send it up to the U.S. Supreme. It's amazing really. So, not a very friendly district here. The gifted program is another area that is difficult because yes, he's always enjoyed it but it does cause anxiety for him big time when special projects are due. He loves the learning...but when the executive functioning skills are called for it becomes more difficult. So, I'm not sure it's something that would even be wise in addition to a new middle school and move. It usually takes a bit to get in anyway and so if he's pushing for it, I'm hopeful that if it's an option, there will be time to adjust before it becomes a reality. The new county actually has a few gifted schools not just programs. But at this point, who knows? I just want to do the best thing for him that will cause the least anxiety but still keep him interested. He has asked me to homeschool a couple of times but I've answered him honestly. It's something that I think would be incredibly difficult because his first reaction to many things with me is still "no". We problem solve using the CPS method and that has improved things a lot but he seems to accept the teacher's authority. There's no discussion there about work to be done or topics to be studied.

Honestly, I feel a bit overwhelmed with finding the right fit for him. He has a twin and although they've spoken of going to separate schools before, now that we are moving, they are talking about going to the same middle school again. That in itself could help with the anxiety. It's so different from elementary. Do you have any thoughts?