New Here and need help

[jennd23]

Hi all,
I've been browsing for a while but joined today. I need some suggestions on what to do with school stuff.

Back story: My son is 6 and was diagnosed last year with ADHD, Pervasive Developmental Disorder (PDD)-not otherwise specified, ODD, and depressive tendancies by a neuro-psychiatric.

He was in private language therapy and doing ok, still having a lot of behavioral problems at home but has only done speech therapy so far.

So, unfortunately my school district has really been slow to get this ARD process into motion and here we are at the end of the year with nothing to show for it.

At the ARD they said they would do a full autism evaluation, I just got the results of that and they do not think he's on the spectrum. I completely disagree (but that's besides the point), BUT they're saying he won't qualify for a program the have for Autism Spectrum Disorders (ASD) kids (where they do speech and social skills as a group) because of that. Now my understanding is that they can not NOT give him services based on a diagnosis, is this correct? So they can't say "he doesn't have Autism Spectrum Disorders (ASD); he can't go" Right?

Also, we've already had an individual evaluation done, but I'm willing to do another, provided it can be done over the summer and we can meet again prior to the next school year beginning. The biggest problem I have is that he is a complete MESS at home, angry, emotional, crying, meltdowns DAILY. Morning and evening. But at school they're not seeing any of this. She says she sees depression and anxiety but none of the other symptoms that I see at home, therefore its not an educational need to provide anything else. She does see social skills concerns but thinks that the teacher's accomodations are sufficient. I don't think they're completely sufficient but we've been truely blessed to have a teacher who is a parent to a child with Autism Spectrum Disorders (ASD) so she "gets" it.

I'm just at my wits end. I have private health insurance and it doesn't cover any Autism treatments. The places that offer ABA are $100+ an hour and they want to do 4 hrs a week....I don't have $400 extra bucks laying around, you know?

I have hired an advocate and meet with her next week to talk about the follow up meeting (where they'll review the results and tell me he's getting nothing) but I just really feel like I need some guidance. Is the advocate even worth my time? If he's not having behavioral or academic problems AT school, what good will the advocate do?

 

[HaoZi]

Yes, keep the advocate! They can keep the school from leading you into less services than he needs because they know the ins and outs of how it all works. Does he have an IEP? Has he been tested by a professional of your choosing for Autism Spectrum Disorders (ASD)?

 

[rlsnights]

What is an ARD? Not an acronym I am familiar with here in California.

The IEP placement is the array of services and supports called for in the IEP. It is not a place or a particular classroom or program. The child's needs are supposed to be established and then placement (services/supports) flows from that. Many places try to do it the other way around. If your child's needs would be best served by his participation in the autism program then the IEP team can choose to place him there as long as they justify their decision in the IEP document.

School districts love to tell parents that a child does or doesn't qualify for a program based on some "rules" of theirs. In fact, their rules are completely arbitrary and generally have no basis in IDEA legislation, regulation or precedent. Sometimes, rarely, there is something that has been legislated at the State level that may apply to a certain situation. Here in CA for example, school districts are not legally required to offer speech services unless a child is 1.5 standard devs below the norm on 2 or more standardized tests. As you probably know, many kids on the spectrum have been intensively coached at home and can get by on the standardized pragmatic language tests. But in the real world it is another matter. But here if the child doesn't do really badly on those tests they don't get speech services unless the family is able to persuade the IEP team to provide them anyway.

I'm unclear who you are referring to when you say "she" is seeing depression etc. Is that the teacher? Have you talked to his teacher and asked her advice? Let her know what's going on at home?

If he's experiencing anxiety and depression at school then the IEP should address that. If you think he needs to be in a standalone autism program - have you visited the one you think he should be in to see for yourself?

I don't see any medications listed - have you considered consulting a child psychiatrist to see if medication intervention might be appropriate? Not saying it is - just asking.

Are you able to provide a highly structured home setting? Is he getting homework and that is part of the problem so you could ask for no homework in the IEP.

Has he been evaluated by Occupational Therapist (OT) for sensory integration issues and gross/fine motor delays?

Getting an advocate is a very good idea.

Do you already have copies of all the assessment reports? If not, try to get copies ahead of time and review them carefully for accuracy.

 

[jennd23]

ARD = Admission, Review, and Dismissal Process - basically the entrance into, review of, and dismissal from special services process.

He does not have an IEP. He has a 504 that has things like "teacher must repeat directions to son" "teacher must have son repeat directions back to ensure understanding" etc. No services are in the 504.

The initial evaluation happened because he was having major behavior problems at school & home last year and we suspected ADHD. We had him tested at the neuropsychologist and got his official diagnosis then. We provided that to the district and then they had their autism evaluation team do an evaluation. I am planning to disagree with their findings and request an additional IEE.

The autism evaluator is the one who sees depression & anxiety. His teacher and I speak very frequently. She'll email me throughout the day if he's tired or having a hard time, but aside from the occasional tired and putting his head down, there isn't any real concern from her behaviorally. She has a lot of social concerns and language concerns moving forward. She says he is able to keep up now but he will likely fall behind as the work gets harder. I have not seen the program I'd like him in, but since the teacher's daughter is in it she and I have had a lot of discussions about it and agree that it'd be good for him.

He is on a nice list of medications. Vyvanse, Guaficine, and Abilify. We're working the Guaficine out now and I am considering getting rid of all of them for summer and starting with a clean slate. I can't figure out which behaviors can be attributed to the medications and which are just "him" and I'd like a better understanding of that.

Home is somewhat structured. We have a schedule and follow that. He does get homework but its spelling words and daily reading. If he has to write the spelling words our evening is tougher but I've learned that he is more than happy to paint them so we've been doing that most nights which works well. He doesn't like the reading but will do it to earn a "homework token" for the day.

Based on what I see (unable to tie shoes, unable to button buttons (its getting hard to find elastic waisted pants in his size!), handwriting concerns, etc) I would agree that he does need an Occupational Therapist (OT) evaluation. Is that something the school should do? or something I need to persue outside?

I do have copies of one report and I don't agree with everything in it. I've highlighted and made notes accordingly.

I think I covered all the questions, hopefully! I will keep the advocate, I was just concerned that it wouldn't do much good if they're not seeing the problems at school (aside from anxiety and depression).

 

[rlsnights]

Anxiety and depression, if they appear to be interfering with his learning, should be sufficient to meet the requirements of IDEA. Don't know why the autism evaluator thinks that should be dismissed as a problem except that uninformed people seem to think that kids' depression and anxiety are OK to ignore if they're not obviously showing signs of severe distress. It is NOT normal for a 6 year old to be showing signs of depression and anxiety anywhere let alone at school and this should be a big red flag to the school that there is a need for behavioral/emotional supports at school.

Is he being seen by a child psychiatrist (psychiatrist) as opposed to an adult psychiatrist? If so, what position is the psychiatrist taking regarding a diagnosis and do you have that in writing? Will the psychiatrist make recommendations regarding school placement? Usually you have to write the letter for the psychiatrist (if you have the skill/knowledge to do so) so they can edit it and have their staff re-do it on letter head. They just don't have the time to do things like that.

Usually in our signatures we list the medications our kids are on - saves answering questions all the time since nearly all our kids are on medications.

Do you have any idea what changed at school that reduced the problem behaviors there? Was it the teacher or the medications or maturation or? That might help if you can

Did you ask for a behavioral assessment beyond the autism evaluation? This is something else that you could/should get or include if you get the district to agree to an IEE. And the observations should include home and recess at school. Depending on how closely supervised the kids are at recess he may be having problems that are below the radar. If you get the IEE I would just tell them you want assessments in every single area that can be assessed so that the team has a complete picture and has identified ALL areas of disability (the requirement under the law).

Will his teacher advocate for the special program placement? A lot of times teachers are afraid of losing their jobs or their work life made difficult if they take an opposing position with the SD. If she's not able to take a stand that way, does she know another teacher in a different district who might be a helpful support and be willing to talk to you and come to the meeting?

Did they do a new comprehensive speech assessment or has he had one within the last year? If not and you didn't have one done I strongly encourage you to get one done and/or ask them to do one and table the meeting until it has been done. If you get them to agree to an IEE then make it part of that. I assume he is getting speech services through your health insurance but he could also be getting speech through the school district and this may qualify him for an IEP all by itself. Hopefully it would show the typical speech/language processing problems associated with Pervasive Developmental Disorder (PDD) and would further support your position that he needs to be receiving services in the classroom that make the curriculum accessible to him - i.e. he needs the language supports in the autism program.

Unless the social skills problems are really blatant, in my experience, you will not get anywhere asking for support for these - in the absence of other deficits - unless you have a really progressive and well bankrolled school district. If so then I would think the best they would offer is to have him do a social skills group at the school once a week and they probably have a way to do that outside of the IEP process. If the social skill deficits were really obvious then it should have shown up in the reports.

The fine/gross motor skills should be assessed by an Occupational Therapist (OT) along with sensory issues. You can ask the pediatrician to refer for this or you can have the school do it. Again the deficits have to be pretty severe to get him help through the school. Examples - he can't walk in a straight line across 10-15 feet or can't walk heel to toe for at least 4-5 steps or falls down immediately when he stands on one foot. Can he hop in place, can he do a standing jump, can he write legibly even if very slowly?

My son had the deficits you mention well into 3rd grade and it was not sufficient to get school Occupational Therapist (OT) services because what's considered the range of "normal" for young children is very large. And the school's assessment is aimed solely at the question of whether it is interfering with his ability to benefit from FAPE.

Have you asked your pediatrician to test him for celiacs or allergies? If not this is another thing that might be influencing his behavior especially if he is not really eating when he's at school.

Have you been able to identify triggers at home? Are his problems mostly with transitions? If so then this is one reason he may be doing OK at school right now. One teacher, skilled at working with ASDers, almost no transitions except to/from school and maybe to/from recess, a highly structured predictable environment. The teacher may be consciously or unconsciously using a lot of the methods that work best with ASDers.

Well that's a lot of question marks. Sorry if you feel bombarded and don't feel you have to answer all of them. They're mostly to intended to help you focus on areas that might have been missed or as a backhanded way of offering advice.

Keep us posted.

Patricia

 

[jennd23]

No, I appreciate them! This is what I need help with! Sometimes I just feel "stuck" not knowing what to do next.

I completely agree that the depression & anxiety are not normal. I think a lot of what she's seeing as depression/anxiety is more sensory/emotion overload and she is not used to seeing that. The main problems were @ recess - he would suddenly walk off the playground, and go sit in the corner with his head down. Obviously I wasn't there, but I've seen him do this. When he's not getting is way, or when he's overwhelmed he'll (sometimes) withdrawl instead of lashing out. I know the neuropsychologist saw depressive tendancies as well but I'm not sure if the evaluator is really picking up on the differences of overloaded & depression.


Yes, he has a child psychiatrist that I LOVE. He is very thourough and each appointment has been over an hour so far. He spends a lot of time talking to my son and really wants as much info as possible. He completely agrees with the diagnosis although he suspects more Aspergers than Pervasive Developmental Disorder (PDD)-not otherwise specified. I think he would probably be willing to write/sign something but I haven't thought to ask.

Thanks for the heads up, I updated my signature with medications


His behavior got "better" when he started ADHD medications. It has gotten even better with his teacher this year. I loved both teachers so far but I think he's just getting more of what he needs this year because his teacher knows what to do.


Thanks for the suggestions on what evaluations to have! That's exactly what I need! I have already written them in my "school folder" for the meeting! Unfortunately I have been railroaded by the school and not educated enough in all of this to know better so at the time I assumed the autism evaluation would include all of those things. Silly me, I know now

I think the teacher is willing to push for it to a degree. She didn't come out and say she thinks he needs the program in our previous meetings but she was very honest about her concerns and the things that she thought would help him. I need to ask her what her opinion will be. The advocate is in our school district and sees a lot of kids for social skills group from the area, I think she will be aware of the program and able to help me push for it.


He had a comprehensive one done at the begining of the school year through a private company. The reason I want to push so hard for it at school is that my insurance does not cover it because its not "traditional" speech therapy. The school has a copy of that report. Similar to the bad assumptions on my part, I didn't ask specifically about the speech evaluation because I assumed it would be included in the autism evaluation. Shame on me.

Unless the social skills problems are really blatant, in my experience, you will not get anywhere asking for support for these - in the absence of other deficits - unless you have a really progressive and well bankrolled school district. If so then I would think the best they would offer is to have him do a social skills group at the school once a week and they probably have a way to do that outside of the IEP process. If the social skill deficits were really obvious then it should have shown up in the reports.

The social skills deficits are pretty obvious and several are called out in the evaluation report that I have. Unfortunately I can't think of any of the ones called out off the top of my head, but he really struggles in this area. I never would have thought the school would provide this until I found out about this autism program where they specifically work with these kids on speech, social skills, and content mastery. Its a pull out so, they're still mainstreamed most of the day.

Based on your examples for Occupational Therapist (OT), I'm sure he wouldn't qualify through the school. He CAN write legibly, although 90% of the time he does not.

We have an order for a full blood work up (which I have been procrastinating on because I know its going to be a huge meltdown...) and he had allergy testing done last year, it did not include foods though and I'd like to get him back to one for that.

Have you been able to identify triggers at home? Are his problems mostly with transitions? If so then this is one reason he may be doing OK at school right now. One teacher, skilled at working with ASDers, almost no transitions except to/from school and maybe to/from recess, a highly structured predictable environment. The teacher may be consciously or unconsciously using a lot of the methods that work best with ASDers.

My biggest problem at home is that I can NOT identify the triggers. I feel like a terrible parent for admitting that but you never know what will set him off. I would say a good 70% is not getting his way or getting in trouble. He struggles with transitions but I do as much as I can to prevent this. We have a visual schedule and I attached a timer to it, so "You have 30 minutes for X, then we're going to do X, I'm setting the timer now" the timer has a 1 min warning so then I can remind him, ok, here's your 1 min warning. A lot of it is when he is tired. Its very very frustrating because I really never know which child I'm going to pick up from school. Yesterday it was the happiest kid in town. He was fine all evening and then when we were reading a book, it said something about Darth Vader cutting off Luke's hand and he LOST it because that isn't how it happened. (it IS how it happened but obviously not how he remembered it). He was crying, hysterical, swatting at me, he was still mad at me when he went to bed. When I see it coming I can usually head it off, this morning was going down hill so quickly I threw in "you can earn double TV tokens if you can get dressed before 7:25" and he was fine, that doesn't always work but sometimes it does. When I don't see them coming they can get out of control. I'm trying to remember what happened the other morning but it ended in the car with him throwing his video game at me, followed by a shoe. So it can be anywhere from a little whiney/crying fit (that lasts for hours) to a full blown out of control thing. Basically this paragraph is probably no help but I'm leaving it anyway LOL.

Thanks again, I appreciate all the questions and the time you guys take to look at this