OT: I really need help and advice RE: IEP for CP, PDD-NOS vs Aspergers, and delays

[triplefigs]

Met with the Developmental Ped today about DS (has been having anxiety attacks and showing more signs of ASD). The meds do seem to be helping for the Anxiety disorder, but she is upping the dose to see if it makes even more of a difference. May add another med to it in a few weeks to see if it helps the OCD type symptoms.

She and I had a long discussion about DS's "issues" and whether it is PDD-NOS or OCD. Well, she says she's now thinking it may be Aspergers, although he does not meet several of the criteria for Aspergers (The Neurologist and I both think it's PDD, but I suppose it is '6 of one, half dozen of the other'). I am just so overwhelmed at this point and wasn't expecting to hear the possibility of another diagnosis. We meet with the school system next Friday to start his IEP to transition into Kindergarten in the fall. I mentioned to the Dev ped that the IEP team had used the word "self-contained" and didn't know what that meant. When I found out it means they are considering putting him in a self-contained/ non-mainstream classroom I was very surprised. I am so upset and confused. DS does need structure, needs to know what is coming up next, has significant fine motor delays due to Cerebral Palsy, and receptive language delays. But he is a bright, sweet, funny, empathetic, and wonderful boy. He does very well in a mainstreamed 4 year old preschool class and is right with his peers academically. That's why I think he'd be better in a mainstream class.

I have never done and IEP and am not sure what to expect next week. I know they are having a ST, OT, PT, and Orthopedic Impairment Specialist there to evaluate him. Would they be thinking the self-contained class because of the fine motor and receptive language delays or because he asks "what's next" all the time (i.e. PDD or Aspergers)? Any advice?? Both the Dev Ped and I agree he needs to be in a mainstream classroom. Do I have the right as a parent to insist on this fact? This has just been such a rough time for him (and me). None of these symptoms were nearly as obvious before our trip to Disney in December. Disney seemed to flip a switch somewhere that has now brought new issues to light (not a bad thing, necessarily). Are your children with any of these issues in non-mainstream classes? If so, why?

I would greatly appreciate any advice and help. I just want to make sure I do everything I can to help my son.

Thank you.

 

[Talking Hands]

You as a parent have a right to insist on what you feel is the best enviroment for your child. Whether it be self-contained, partial mainstream, full mainstream or inclusion. Inclusion is the least restrictive enviroment. It is supposes to mean that all support needs are done within the classroom without pull-outs. No always practical. The school I am at right now has a range of options for ASD children including inclusion classes. In fact our teacher of the year for the county helped start inclusion classes. And the first group of inclusion students were all ASD children.
Go with your gut feeling. You know your child best and the teachers and staff can only be guides to help you decide the right way for your child.

 

[LMC]

I just completed the IEP for my DS10 and requested he be in a self contained room! He has autistic tendencies (pdd-nos), sensory, anxiety disorder, all that stuff and I knew he wouldn't survive in a mainstream (I have homeschooled the last 3 yrs and he was in a small private school prior to that). They would have loved to put him in mainstream but I insisted since I know his personality best I think I know which situation he will do best in. Well they are now leaving him in the self contained class the remainder of this year and all of next year! I am a very happy mom. If they had not I would have fought tooth and nail for an aide (and I think they know that).
You don't have to agree with them and you can ask for a school paid psychological review of your DS if they don't want to use the evaluations you have already had done privately. I don't see the harm in placing him in mainstream then moving him if he is not a productive student. Stress that he is in a mainstream K4 and get letters from his current teacher and the pre-school director about his school performance. If they remain staunch in thier pre-determined decision, get their reasoning in writing and take it to your sons developmental doctor(s) and discuss their concerns. The doctor(s) can then probably discount any reasoning they would have since they have already tested your DS and he has successfully been in a pre-school.
Good luck!!!!!

 

[triplefigs]

You as a parent have a right to insist on what you feel is the best enviroment for your child. Whether it be self-contained, partial mainstream, full mainstream or inclusion. Inclusion is the least restrictive enviroment. It is supposes to mean that all support needs are done within the classroom without pull-outs. No always practical. The school I am at right now has a range of options for ASD children including inclusion classes. In fact our teacher of the year for the county helped start inclusion classes. And the first group of inclusion students were all ASD children.
Go with your gut feeling. You know your child best and the teachers and staff can only be guides to help you decide the right way for your child.

Thanks so much for responding. I was hoping as a parent what I believed to be best would be considered and not just what the school system thinks. BTW, what is the difference in partial and full mainstream? I anticipate DS in a regular class, being pulled out for therapy, etc, and possibly having an aide in the room to help him with his fine motor delays. Would that be partial mainstream or full?

I am just overwhelmed at this point. A month ago he was considered OCD and CP. A month later they're thinking Anxiety Disorder, PDD-NOS or Aspergers. Quite a difference. I've not had time to let any of it sink in or process yet.

Thanks again.

 

[triplefigs]

I just completed the IEP for my DS10 and requested he be in a self contained room! He has autistic tendencies (pdd-nos), sensory, anxiety disorder, all that stuff and I knew he wouldn't survive in a mainstream (I have homeschooled the last 3 yrs and he was in a small private school prior to that). They would have loved to put him in mainstream but I insisted since I know his personality best I think I know which situation he will do best in. Well they are now leaving him in the self contained class the remainder of this year and all of next year! I am a very happy mom. If they had not I would have fought tooth and nail for an aide (and I think they know that).
You don't have to agree with them and you can ask for a school paid psychological review of your DS if they don't want to use the evaluations you have already had done privately. I don't see the harm in placing him in mainstream then moving him if he is not a productive student. Stress that he is in a mainstream K4 and get letters from his current teacher and the pre-school director about his school performance. If they remain staunch in thier pre-determined decision, get their reasoning in writing and take it to your sons developmental doctor(s) and discuss their concerns. The doctor(s) can then probably discount any reasoning they would have since they have already tested your DS and he has successfully been in a pre-school.
Good luck!!!!!

Your son sounds so much like mine. Can you tell me more about a self-contained classroom? Maybe it's not what I'm thinking and might be something to consider for DS. My other concern is since he's a triplet, would my other 2 be doing things he would not get to participate in if he were in a self-contained classroom? They will be in separate classes, but if he were "excluded" from activities, that would pose a serious problem for us at home.

Thanks.

 

[Talking Hands]

Thanks so much for responding. I was hoping as a parent what I believed to be best would be considered and not just what the school system thinks. BTW, what is the difference in partial and full mainstream? I anticipate DS in a regular class, being pulled out for therapy, etc, and possibly having an aide in the room to help him with his fine motor delays. Would that be partial mainstream or full?

I am just overwhelmed at this point. A month ago he was considered OCD and CP. A month later they're thinking Anxiety Disorder, PDD-NOS or Aspergers. Quite a difference. I've not had time to let any of it sink in or process yet.

Thanks again.

Partial mainstream is that the child is mainstreamed for certain subjects and not for all subjects. This is quite common with deaf students who attend math class with hearing kids as well as PE, art and music but do language arts, science and social studies in a self contained classroom with a teacher of the deaf.
What you are looking for is full mainstream with pull outs for therapies and a one on one aide to help him with small motor skills and help him keep focused and on task.

 

[triplefigs]

Partial mainstream is that the child is mainstreamed for certain subjects and not for all subjects. This is quite common with deaf students who attend math class with hearing kids as well as PE, art and music but do language arts, science and social studies in a self contained classroom with a teacher of the deaf.
What you are looking for is full mainstream with pull outs for therapies and a one on one aide to help him with small motor skills and help him keep focused and on task.

Thank you so much for the further explanation. I appreciate the help!

 

[tw1nsmom]

Yes, you have a considerable say in the decisions about your son's education. Under federal law (IDEA), you are to be considered a full and equal partner in the CSE (committee on special education)team.

I'm a little confused though. You say that your son receives therapy in preschool, but this is your first experience with an IEP. Doesn't he have an IEP now? And didn't you go CPSE (committee on preschool special education)? Also, has the school district evaluated him at all, or have all the evaluations been private? If they haven't evaluated him, is it because you've had all evaluations done privately (psychological, OT, PT, Speech), and they are going to accept all the recommendations of the private evaluators?

From what you say there seems to be no reason for your son to be in anything but a fully inclusive/mainstreamed classroom. They must educate your son in the least restrictive environment for him (LRE). There are some key words you want to learn. Appropriate....never use the word best. Legally your son is entitled to an education that is appropriate for him, not one that is best (it's semantics, but they will jump on you for it). Needs...never use the term want. They don't care what you or he wants, only what he needs (again semantics). The legal term that covers this if FAPE (free and appropriate education). For that matter, know the word Free. If it is determined that your son needs something for his education they should never require (or even ask) that you pay for it.

You can also reject an IEP if you don't agree with it. You can do this via tabling the meeting until you can do research and arrange for your expert to come in and talk. You can also reject an IEP and ask for mediation and eventually arbitration if you feel strongly about certain issues. A parent can also reject all or any services offered by the CSE. For instance, at my most recent CSE meeting they offered summer services for DS. I declined them (he's had summer services since he was three and we really want a family summer this year), and instead had them write in that all members of his team will provide me with packets to work with DS at home. You can also bring anyone with you that you wish. They're supposed to have some knowledge of your son, but that covers a lot of territory...grandparents, neighbor, preschool teacher (that person should really be there for this meeting), friend, abviously spouse, advocate, independent evaluators (psychologists, neurologists....they will charge you for their time).

For some children the appropriate placement/LRE that will meet their needs will be in a self-contained classroom. However, they must accomodate your son in a "regular" class, in the same school that the other children in the neighborhood go, unless it is proven unequivocally that even with all supports possible, your son cannott succeed in that environment. Such supports can include, classroom aide, consultant teacher services (direct...working directly with the child in the mainstream class, and indirect...providing consultation time with the classroom teacher and taking time to make the necessary accomodations...whatever they tell you, there is no maximum number of minutes for consultant teacher services, only a minimum of two hours a week), physical accomodations, resource room (this can be done push-in, but is most often done on a pull-out basis with a group size of no more than 5, a minimum of 3 hours a week, and the child removed from the class into the resource room no more than 50% of their day). Of course, there's also speech, OT, PT, and counseling/social skills training.

Another thing to request is parent training. It's a right under IDEA. You can request that they invite you to participate in any training the district might happen to be having that has anything to do with your son's disability. They won't offer it (most likely), you have to request it.

If your son is placed in a self-contained classroom, he won't be experiencing the same things that his siblings are. I had that same issue. I would be happy to answer any questions you may have, on this thread, or through PM.

 

[triplefigs]

Wow. What a wealth of knowledge and info! Thank you so much. I am going to print out your response to take with me and review!

I'm a little confused though. You say that your son receives therapy in preschool, but this is your first experience with an IEP. Doesn't he have an IEP now? And didn't you go CPSE (committee on preschool special education)? Also, has the school district evaluated him at all, or have all the evaluations been private? If they haven't evaluated him, is it because you've had all evaluations done privately (psychological, OT, PT, Speech), and they are going to accept all the recommendations of the private evaluators?

No, this will be DS first IEP. He was in the State's early intervention program until age 3. After he was discharged we elected to put him in private church preschool and continue private therapy. That way he continued with the same therapists and did not switch. Next Friday he is going to be evaluated by a ST, OT, PT, and Orthopedic Impairment Specialist. Will this be the IEP meeting, or will that occur at a later date? His therapists said they will go to the IEP meeting, my mom said she'll go (she's a Title and Special Needs Educator). Our Developemental Ped has also agreed to write a detailed letter with her observations and reccomendations. They have spoken to his current preschool teachers, but I'm sure they'd write a letter as well (I actually teach preschool where he attends).

If your son is placed in a self-contained classroom, he won't be experiencing the same things that his siblings are. I had that same issue. I would be happy to answer any questions you may have, on this thread, or through PM.

That is exactly my concern with a self-contained classroom. He would be devestated if he were not doing the same activities. Actually, my other DS and DD would be terribly upset too!

Another thing to request is parent training. It's a right under IDEA. You can request that they invite you to participate in any training the district might happen to be having that has anything to do with your son's disability. They won't offer it (most likely), you have to request it.

Any other suggestions? I so appreciate eveyrone's advice and help. I just want to be aware of our rights and how to approach the IEP in the correct manner to fully accommodate his needs!

 

[tw1nsmom]

If they're saying that they will be evaluating him next friday, it really doesn't sound like a CSE meeting. They'll need time to compile their results and write their reports. They also will need to review the results with you. You also must be notified of the cse meeting in writing, at least five days prior to the meeting. In some circumstances they may try to hold a meeting with less notice, but they have to get your permission in writing.

I'll try to think of other information that might be helpful and post it over the weekend. I'll definitely be home and have more time. Both twins have high fevers and strep throat, and my throat is starting to really hurt. To top it off, DH leaves for the weekend on a business trip tommorrow (poor me).

Hang in there. Remember, this is a process that you'll be fine tuning for a long time. You can also request a cse meeting to change the IEP at any time (remember to put everything in writing and save correspondence...also start a journal documenting all conversations you have with the school about your son). Remember, your son is so far ahead of the game because he has an involved, proactive parent who is seeking out the information needed to become an effective advocate.

 

[triplefigs]

Thank you so much. I hope everyone feels better. Get some warm drinks, good DVDs, and snuggle in the bed with your kids. I had strep 2 weeks ago and it was so painful. I'm sending you get well vibes now!

 

[BeccaGrace]

Not too much to add but I wanted to give you ...it's hard when you are dealt an unexpected diagnosis on top of everything else you are already dealing with.

When we did Becca's preschool IEP this fall we did the meeting like you are describing and then individual screening sessions with the speech therapist, her child study team leader and the social worker made a home visit. They all made separate reports along with their test results, which we received before our final meeting. Then we met again as a group to discuss what they felt would be best for her IEP and they asked what we thought and if we felt any changes should be made.

Good luck with your meeting!

 

[tw1nsmom]

Here's a website that might be helpful to you. I did my parent special education advocate training through Parent to Parent of New York State. If you can't find a particular resource, call one of the centers (some can be better than others, but all are willing to help you find the information you need).Parent to Parent

Some other links that may be helpful:

http://www.aspergeratlanta.com/

http://www.wrightslaw.com/

Wrightlaw has a book called From Emotions to Advocacy. You can buy it at many bookstores or through Amazon.

http://www.aspergers.com/

Here is a site I use frequently as it pertains to my sons disability. Nonverbal Learning Disability and Aspergers have a lot of similarities. The information on this site might be helpful for you.http://www.nldline.com/

 

[Earstou]

Make a list of your concerns for your child so you remember to address everything you want addressed. Don't let the meeting end before everything on your list has been discussed!
Remember, if the IEP that the team writes isn't working, you can request to change it at any time (still need to call a meeting, but don't have to wait for the next review).
Also dress professionally (i.e.business attire). I learned this after one particularly intense meeting where all the suits from the district were asked to the meeting because they weren't happy with what I wanted. (My observation: the more conflict expected, the higher the number of business suits at the meeting .)
Good luck! As to the new diagnosis (dx), your ds is still the same, only the name of his condition has changed! Getting the right dx early will only help all of you deal with life !!!

 

[LMC]

My son actually has diminished mental capacity (is this PC enough for here?) and all the motor skill issues and is developmentally delayed 2-5 yrs depending on the area in question. I say that he is self contained but this is how it works. The entire special education pull out class goes to a mainstream science class together (with their aide), they then return to the self contained room for 2nd and 3rd periods (this is when the teacher and/or aide work one on one with him on math, grammar, writing skills), he then goes to a remedial reading class w/o his class mates (they are all pre k readers and he is on a 3rd grade level--he is attending a 6th grade level school). He then goes back with his self contained class for art and pe. So he is closely watched by the special ed teacher or aide except for reading and history since he is on a higher reading level than the other students in the self contained room. He still gets accomodations and his educational goals are 70% which means an A for him is 7 out of 10 answers correct then the point deductions start from there. He is the only one in the self contained room that is on the "diploma track". The other students will get certificates of attendance. I am staunch on him getting a diploma --if possible. If it turns out he can't be educated enough to pass the graduation exams then we can re-evaluate our goals for him. But I thought I'd shoot for the moon instead of settling on mediocre goals. My child is much older so an elementary setting would be much different. Our school system did not offer a pull out setting except for those who are "non-functional", I think that is what they called it. So I did other schooling options until now. If you want an extensive list of his issues that contribute to his learning problems, I'll be glad to post if it's not a problem to do so here. Some of your DS's and my DS's conditions may be similar.

Your son sounds so much like mine. Can you tell me more about a self-contained classroom? Maybe it's not what I'm thinking and might be something to consider for DS. My other concern is since he's a triplet, would my other 2 be doing things he would not get to participate in if he were in a self-contained classroom? They will be in separate classes, but if he were "excluded" from activities, that would pose a serious problem for us at home.

Thanks.

 

[minkydog]

Also dress professionally (i.e.business attire). I learned this after one particularly intense meeting where all the suits from the district were asked to the meeting because they weren't happy with what I wanted. (My observation: the more conflict expected, the higher the number of business suits at the meeting .)

sorry, I just had to laugh . I totally agree. Back in our early days with Christian it seemed every IEP meeting was practically World War III. Christian was very low functioning and the school felt it was "appropriate" to put him into a mainly custodial program rather than a more moderate one. It was a fight to the death every 6 months to get his needs met. They'd bring in their 11 or 12 "experts" to meet with us. We learned quickly that in order to compete DH needed to wear his black suit, white shirt and red power tie I came in wearing the diamonds, hair pulled back, dark lipstick. We looked like we meant business. We also stand anytime they do, to show that we are equals. I know it seems silly, but it's how you play the game.

BTW--we did not go for the most "appropriate" (in their opinion )setting. We insisted on a mild-moderate preschool in which he was required to participate. He learned to sit up and pay attention. He learned to walk finally. He was forced to "be there" instead of zoning out. Christian is now in a severe/profound class because he functions best there, but he is still required to do things that the other kids can't do, like go potty, clear his dishes, sit in circle time, learn his colors, look at whoever is speaking. We have great relationships with his teachers and therapists now and we are definitely a full member of the educational team.

 

[tw1nsmom]

BTW--we did not go for the most "appropriate" (in their opinion )setting. We insisted on a mild-moderate preschool in which he was required to participate. He learned to sit up and pay attention. He learned to walk finally. He was forced to "be there" instead of zoning out. Christian is now in a severe/profound class because he functions best there, but he is still required to do things that the other kids can't do, like go potty, clear his dishes, sit in circle time, learn his colors, look at whoever is speaking. We have great relationships with his teachers and therapists now and we are definitely a full member of the educational team.

Just to clarify, when I was talking about the word "appropriate" before, I did not mean that the OP should defer to the schools opinion as to what appropriate is. I just didn't want them to get on her if she used the word "best." We are of course, pushing for the best education for our children, we just can't tell them that, or they will use it as an excuse to dismiss our positions. I just wanted to make sure she had the right words to play the game.

BTW, I got a chuckle out of your description of what you wear to meetings. When I volunteer at the school I'm admittedly a little shlumpy. At meetings, I dress DH up, I put the diamond, pearls and heels on and I make sure we get there early enough that we are on the oposite end of the table from the CSE chair. That way we can better guide the direction of the meeting...and it's a power position.

I hope I'm not making the OP too nervous about this process. I just know how much easier it would have been if I had this info. in the beginning. Not all school relationships are adversarial. I know that even though we may disagree with the "appropriate" program for DS, they truly care for him and want to do what they think is best. The upper administration I could do without.

 

[4aspies]

You have already received pertinent and excellent advice on how to proceed. Let me just add that we have all been in your shoes, overwhelmed, not sure what to do next, etc. But based on the replies to your post, I hope you can see there is light at the end of the tunnel. I felt like a deer caught in the headlights at the beginning. Once you realize that there is a process to follow, and you have access to information on how best to proceed, it is a matter of beginning the journey a step at a time. And it is a journey!. We are seven years into it and some days are better than others. However, we have met some incredible people that have seen the potential of our guy and have been willing to work to get him included as much as possible. He has Asperger's and has responded best to structure and consistency. We have had the best success starting from a place we know he could handle and then adding experiences. We have had the least success having him jump in with both feet, meltdown, and then try to piece something back together. There are lots of well intentioned educators out there that have their hearts in the right place, but do not know how to deal with autistic kids. You very often will be the most knowledgeable person in the room, especially as it pertains to your child's needs. We have always considered it a victory when a teacher can see what a great kid he is, and not just the behaviors that make classroom participation difficult for him. He has also had a one on one tutor all these years that must have been sent to us from heaven. She is fantastic.
Good luck as you begin. You have lots of people in your corner.

 

[triplefigs]

Thank you, thank you, thank you all from the bottom of my heart for taking the time to help me prepare. As parents of these wonderful children, we are all so blessed. But we all know what an enormous amount of effort, patience, diligence, and toughness it takes to fight for the rights of our children. I am overwhelmed at this point, but I feel like I have a better idea of what to expect.

I believe the meeting next Friday is NOT the IEP, but a SST (?) meeting with the evaluation team. Should DH attend that one as well, or will it be ok it is just me? Should I try to find someone to babysit my other 2 (the school said I could bring them with me if I needed to). Should I wear the power outfit for the eval as well?

Any and all advice is so helpful to me. DS had a bad day at school today. He had surgery on Tuesday and yesterday he had 2 doctor's appointments that lasted from 9am until 6pm, so he is just wiped out. He really needed a day off today to "decompress". I talked with one of his teachers today at length about DS and what she has observed from him this year. She said the biggest challenges are the receptive language delay and severe fine motor problems. Would an aide in the classroom (vs self-contained) be appropriate for these issues? His teacher said his social skills are great and the other kids like him and play with him. She said the repetitive questions/need for structure is there, but is not bad and they effectively deal with it. On a side note, she confided in me that her DD is also a special needs child, has an IEP, and has been having a rough time lately. I feel like she really understands my DS and what I'm going through.

Thanks again for the support. It means a great deal to me.

Denise

 

[4aspies]

Some of the specific questions you have may best be answered after all the evals are in. I would suggest that you begin to keep a notebook or journal so that you do not forget all the things you want to ask/follow up on. We found it helpful to keep a daily log briefly describing the day, good and bad and reflections of the teachers/aides etc. Especially if they had an idea of what works, or does not work.
As far as the meeting, what has worked for us is to try to never attend alone. At least two family members are present. We have not brought the child to IEPs and monthly progress meetings, but have arranged for his care, so that we are not distracted. We take our own notes as well as collect the official minutes recorded. If there are tasks assigned prior to the next meeting, we make sure we know who is responsible to follow up and what the next step is. We hold people accountable for their promises and expect to see results if they have been promised. We try very hard to do this in a cooperative spirit and when we are charged with following up on something, we do.
We , as others here have so aptly stated, view ourselves as important, contributing members of the team. We have a healthy respect for the expertise that the school members bring to the table but we also know that the experience we have is just as valuable. The child needs input from all of us to make it work.