PDD NOS Help

We live with autism but my son is much more severe. I've found the most help on yahoo groups and local parent support services. If he has PDD-NOS you should have an IEP at school. I highly recommend you get an advocate to help you with the school situation too. Especially for a very high functioning child it is more difficult to get proper support from the school. There are many, many therapies you can do to help with his issues as well.

PDD NOS covers such a wide range of issues that it can be difficult to find the right mix of "magic" that works for your child. Of course, you will have the best results - you are his mom and no one knows him better than you do.

If he doesn't already have an IEP, discuss setting one up with the school. The IEP should target helping the school communicate with him in such a way that he can truly understand. For my kiddo, directions must be told to him separately (she tells the class first and then my son). The teacher must cup her hand under his chin (physical contact usually brings in his focus better) and tilt his head up to look at her (he doesn't make good eye contact but it still works) and tell him the directions of what he is to do. Also, she asks him to repeat it back so we know that he "heard" her. He also learns well by watching so the teacher may demonstrate what she wants done rather than tell him. Finally, he does receive pull out services simply to allow him to work in a smaller group (he is easily distracted).

In addition to the above, my son also sees the school psychologist 1-2 times a week where he works on social skills, he receives OT (not at school - I take him) 1 time a week for 1 hour, and he goes to a Play Therapist 3 times a month - also to work on social skills and also to talk about "feelings" and what they mean.

There are no right answers or easy fixes - especially with the school. All you can go is be the best advocate you can be for your son :)

Good luck!

Who did his evaluation? I am very confused, the parent is usually the first one to notice and knows all about the autistic issues. This is very odd. Did the school make this diagnosis? If so, it is highly questionable to me. I work as an educational advocate, and generally, my job is to help parents get their kids what they need because schools won't do it.

Here are the questions I would have for you:

Why was he evaluated, who did it, who suggested it, and is his diagnosis based on the observations of one teacher, or more?

Do you have a current WISC or Woodcock Johnsnon Cognitive? If you do not have one of the other of these, I would do two things, I would first, call a neuropsycholgist and pay for a full evaluation and get a Woodcock Cognitive (they will know what this is, and probably use it) and two, I would write to the school distirct and ask for one, and revisit the evaluation they did, disagree with it, and request an independent evaluation, at the schools expense.

I can help you sort through these things. If you are holding an evaluation with these tests in it, go to www.wrightslaw.com and read "Understanding tests and measurements for Parents and Advocates" This will help you understand some of what the data means.

What you are describing might be something entierly different than PDD-NOS, and if they are only offering speech, I am highly suspicous of a school diagnostic finding autism. Can you send me more information so I can help you? Unless you are just the type of person who is in total denial (which I just don't get from you) then this is very questionable.

If you want me to help, let me know,
M.

My son is 8 and has Aspergers. Have you gone through either the 504 or IEP process with school? That will help tremendously with you and the teacher comparing notes about what is going on at home vs. at school. It does seem like two completely different kids sometimes :-)!

Following directions in class might be hard for him simply because there are so many distractions around. When you say let's do story writing it's you speaking directly to him and providing direct and immediate instruction and feedback. In school it's not like that. My son's 504 specifically states that after giving instruction to the whole class she has to verify that he has gotten the instructions. She can just do that visually (look to see if he got out his book as directed) or sometimes she actually has to go over and look at what he's writing to make sure he's doing it correctly.

Good luck,
K.

Boy, it's really tough to exactly know the answer to this -- it could be so many things. My first thought was: is his body "regulated" and "modulated" when he's not at home? Maybe the non-home surroundings are so visually and audibly overstimulating that he cannot perform the same way he does at home. If he is having some sort of sensory issue, an OT (with a Sensory background) could really help him learn how to regulate himself.

Or...he also could be having auditory processing issues that don't "appear" at home where things are calmer and expected.

I would call your Pediatric Specialist (the one who diagnosed your son) and ask her/him this question. Ask for your son to be evaluated by an OT. S/he should really be the one giving you the answers about your son. As you know, no child with PDD-NOS is the same...so a professional should really be answering this.

Best of luck to you and him.

I am just concerned if your son has this diagnosis do you have an iep in place? Has anyone at the school suggested getting one? If not, you should request one in writing (you have to ask for it in writing). You should do it yesterday. It takes awhile with the way the red tape wheel goes so slowly. I think they have 45 days or so to have a meeting. I would ask for a speedy meeting so everything will be set up for next year. This way your son will get help to be successsfull in school, instead of falling behind. Most services are done in the classroom, and he shouldn't be pulled out of the room for it. My son has behavioral issues. His behavior at school is different than at home. He is very sensory oriented, and the all the noise, kids, things to see, do, are a major distraction. At home he has other issues, and not the same problems. I think it has to do with routine and structure at home that they are used to more than at school.

WOW My 7 year old daughter has it and is the COMPLETE opposite of your son. I wonder why you didn't get an Asperger's diagnosis. If you haven't already join a local Autism support group.

EDITED I misread this post this morning. I think that your description doesn't sound like PDD-NOS, Autism is an communication and social disorder. Higher functioning kids can talk and look at you, just the level you are describing sounds more like really high functioning Aspergers or maybe just a speech delay.

Hi - this is overwhelming. I understand - my son was diagnosed with autism a few months back. Most of his challenges come in social, school-type situations. Although he is younger than your son, he has more trouble in a school setting at home.

I'm a former elementary teacher so I can tell you that the school environment is tremendously different than home. There are added stresses, TONS of stimulus (even in the calmest of classrooms) and a lot of high expectations.

My advice would be to work on getting him an IEP as soon as you can. I'm not sure if you can with the PDD-NOS diagnosis (might depend on your district or state) but once he has an Individualized plan- with goals tailored to his needs- the school, the general ed. teacher and the spec. ed teachers will all work with your son to work toward those goals, even if they are all 'social' goals related to conversation and following directions.

Get the school team (teacher, principal, counselor, school psychologist, spec. ed teachers) on board with you and meet with them often - talk to them about what you see at home and they can talk to you about what they see at school. You can all work together to help him succeed.

HI A.~ You have a tough job! I have a daughter who is 6 and has autism. She started the school year off in a main stream class room, but quickly I changed it to a very small class size. Do you have an IEP? This is an individualized education program. It gives you the ability to change what you need to in order for him to receive the best educucation. Perhaps you might be able to change some things for him, so that he can understand. Maybe he could have extra help from the teacher. Maybe he needs some visuals to learn, theses are great helps for any child! If you know what works for him at home and what worked for him in school the yr prior, try and incorporate that into his routine at school. Is there any advocacy groups that you know of to help you in his ed? There are supports in many places. Sometimes it takes a 3rd neutral person, who works with our kids and knows them, to get them the help they need. For me, I have a oerson from direction services and she is sooooooooooo helpful in knowing what things I need to ask for during my IEP meetings. My daughter is high functioning and is amazing at school, but when she transitioned to K it was tough. They had her mainstreamed and she was hitting kids and pulling hair. I know your son does not do that, however, my point is, now that we have taylored her schooling to fit her needs, she is once again successful! I you need anything, feel free to email me.. Best of luck to you.. You are a great mom!

Who diagnosed him with PDD-NOS? It sounds to me like a receptive language delay and possibly an auditory processing disorder. (I'm not an expert, but the mother of a speech delayed three year old. My son is also very different at preschool than at home.) I would get a second opinion! Also, check out this website: http://www.naturallatetalkers.com/

There are many parents of late-talking children, many of whom have autistic "traits" but are not autistic or PDD. I have found it helpful.

I agree with the previous posts. It is a grand idea to start off getting an IEP going. Another great resource is the local PDX Aspergers network. They meet in West Linn once a month.

Speaking as a former primary teacher I can tell you why he is "so different at home? Why can I say "Lucas it's time to do your story writing, and he will do it, but at school he will just write random word's. Why is following direction at school different?"

It is because there are so many kids and so much distraction going on in the classroom. The teacher and the kids cannot help but distract him. At home is quiet and peace for him to complete his work accurately.

I think you need to discuss the possibility of placing your son in the front row of the classroom so that he can see the teacher and not the other kids--at least that was one of the tricks that I did to lessen the distraction for a child like your son. And see if she has any other suggestions.

You should appreciate the teacher's firm hold of your son at dismissal. She cares enough about him to understand that he is distractable and she doesn't want him to dash out into traffic the moment he sees you. Some teachers would not care as much and then discipline him after the fact.

Just a thought, but have you had his hearing checked? A friend of mine had a daughter with similar issues (was fine at home, but wasn't doing well at school and didn't respond to questions, etc. - no speech delay, though). At the age of eight, one teacher took the time to study Bella and really pay attention. She asked my friend to get her hearing checked a lo and behold, Bella was slightly deaf in both ears and her parents had no idea as she talked normally and was fine at home. When she got her hearing aids for the first time she asked her mother "is that what rain falling usually sounds like?" She hadn't really been able to hear it before. She is fine now and doing so well in school... I'm no expert, but it doesn't sound like PDD-NOS to me if he's fine at home.

A.,

Who gave him the diagnosis of PDD-NOS? If it was your pediatrician and you want to get a second opinion you can always go up to CDRC/Doernbecher's. They have what is called Autism Clinic with a psychologist, developmental pediatrician, speech therapist and an occupational therapist. They will do a comprehensive evaluation to look at cognition, speech, fine motor, sensory and then do autism specific testing. This is by far the best way to answer the question because the autism specific test is very good at picking up on if a child does/does not have autism or PDD, NOS because it is looking at the child in specific situations rather than just a pediatrician asking you questions. If you have questions about it let me know. I work at CDRC as an occupational therapist and would be happy to answer questions.