February 18, 2008,
B.B. asks from Coatesville, PA on March 25, 2007
Autism/PDD-NOS, Testing & Ieps
I have a four year old who will be five in June. She has always been a puzzle to me and we have been trying to figure her out since she was born. I'll give a little background.
Everything was okay until my daughter was about two weeks old and the screaming began. No one could touch her without her screaming except for me to nurse her. This went on for a couple of months and the ped thought it was colic. The only way to clam her was to put her in the tub. Some days I give her 2-3 baths just so I could have a few mintues of peace.
Finally, I went in crying and begging for some help because it was a 24 hour "colic" my baby seemed to have. They did a milk scan and found she had reflux and severe gas so they medicated her which made no difference. By six months old she was seeing a GI, allergist and ENT. Although she was being taken care of physically, she was still screaming the majority of the day and no one but me could touch her. At her one year visit, the screaming had reduced to about 75 percent of our day, I was still the only one who could touch her but she was starting to talk which was giving me some hope.
By 18 months, she stopped talking and became obsessed with letters and puzzles. The aversion to touch continue so by 18 months she was completely dressing herself which she learned on her own. She also discovered tights and insisted on wearing them every night to bed. They really had a calming effect on her.
At two she was still not talking but the screaming was getting better. Any kind of touch still seemed painful to her. By two and a half we had her evaluated by the local MH/MR agency in connection with Early Intervention. We clearly understood that she had a lot of the markers for autism and were ready to accept the diagnosis except...she loved playing with other children. Although she couldn't talk, she found ways to communicate with her peers and actually made friends. So, we have been baffled.
She received speech, OT and a teacher in the home until she turned three. Then the IU took over and everything fell apart.
She has attended preschool for the past two years. She interacts well with her teachers and peers but is constantly on the move in the classroom and tends to revert to her "made-up language" whenever she gets nervous. She is also a toe-walker at times. Academically she is fine and is even reading on a K-1 level. Her teacher says she would be bored in a pre-k class but may have a hard time in K because of some of her behavoirs.
We had a transition meeting with the IU and local school district for kindergarten. The people at the IU claimed that had been providing services at school for the past 18 months but the previous preschool stated they were never there and they didn't know that I had switched preschools this year until the week before the meeting in February. They have been charging the state for services for the entire time. Oops! We don't want to make a big deal because we didn't realize they were charging the state all along. We just want to make sure everything is in place by the time she starts kindergarten. She has been on a waiting list for a Developmental Pediatric Clinic for about a year now.
So, the IU is scrambling now to make things right. She had her OT screening last week. The Speech and Psychological Screenings are next week. Since we have their attention, I figure I should make sure everything is covered. Are there any specific tests or screenings I should ask for? Also, once the testing is done, is there anything that we should ask for to be written in the IEP that would be helpful for her daily functioning in a K classroom.
Thanks for reading. I welcome all suggestions.
1 mom found this helpful
So What Happened?™
Thank you all for responding. My daughter had her psychological eval today and things went well. The meeting is in a couple weeks for the IEP.
J.B. answers from Allentown on April 02, 2007
WOW! I am an autistic support teacher for IU20. We have a wonderful program, but I do not know much about your IU. I have been working with children with autism for 14 years and teaching for 9. I am also a BSC (I read someone mentioning that). Provider 50 can be an asset once you find the right people. They can also help you in dealings like this with the education system. It seems now-a-days all I seem to do is fight for the parents (as a teacher and a BSC). As a BSC I comb through IEP's and make notes for the parents. My IEP's are filled with detail and data to back up everything I do. I expect the same for all of my clients. Most school districts do not like dealing with me. I advocate for the parent! I happen to teach K, 1, and 2. When everything is written up if you want to contact me about what it states please feel free to! If I can help in anyway let me know. FYI- April 22nd is Autism Awareness Day at the Philly Zoo! It will be my 5th year going and it is a great day filled with fun and a lot of information.
1 mom found this helpful
N.R. answers from Pittsburgh on March 26, 2007
Wow you have almost a carbon copy of my son who is also PDD. He will be 4 in July. We are still in a special ed school and IEP is due in June for us.
I always pull our IEP for the past year and compare what goals were being met. IF something wasn't up to par, I'd question it at our mid team reports.
Then I would look at where I would like to push him to the next level. Our problem is my son's speech and social interactions that are age appropriate. I had a rough day with his echoing today and I really feel lonely cause he talks at me and not with me. His ahead in the studies delayed in life skills.
I see that your are in PA. Have you thought about finding a Wrap Around provider for your child. Having a BSC and TSS would help you for forming a good team for your family. The doc who dx'ed your child could recommend some Wrap providers in your area.
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C.R. answers from Erie on March 26, 2007
I have a 14 yr old son that has high function Autism.And he has a person come into his school and sit with him to make sure that he stays in his sit and keeps him focused.That might be another option too.
E.V. answers from Philadelphia on March 26, 2007
Just make sure to get the report and read it carefully to make sure it is an accurate representation of your daughter's skills. Sometimes the one day that a person from the school district comes to observe/test happens to be an off day and they don't realy see what she can do. This is important since the school district uses the findings to choose a classroom with the right "fit". Once the district comes back with their recommendations, go visit the class(es) to see if you think they are right. If you feel your daughter is very bright as far as cognitive skills and they are only offering an emotional support class or something else you do not feel is right....you have the right to say no if you don't think she would do well in that setting. As one of the other responses mention....some children go into a regular kindergarten class with a "shadow" or one-on-one assistant to help them throughout the day. Think about whether your daughter may be able to handle the regular class with that type of support and push for it if it is. As far as supports like OT, PT, speech...there are different critereon for qualification than in early intervention. Whereas in EI they get services to help with skills to make them successful in life in general...the school district only provides those services necessary to be successful in the school environment. So, she may not qualify for services that she received in EI. As the parent you know your daughter best and need to make sure that you are comfortable with what the district offers you. You always have the option to refuse the plan/classroom offered if you feel in is REALLY inappropriate and go to due process.
L.A. answers from York on April 05, 2007
You obviously have a very bright little girl! She has realized that she has the ability to make the world around her a more comfortable place. Have you read the book 'The Out of Sync Child'? It is an excellent resource. I have a seven year old with autism and sensory dysfunction. We have had a relatively good experience with our IU here, but maintaining his program takes a lot of work. I'm not sure where in Pa you are, but Hershey has a great developmental pediatrician, and I have heard good things about Devereaux in Philly. I would look into trying to get a better diagnosis for your daughter so that her IEP and behavior plan can be better tailored to suit her needs. Good Luck!
M.J. answers from Philadelphia on February 18, 2008
About 3 months ago our son was diagnosed with PDD-NOS. I was very concerned that he didn't have the amount of words in his vocab at 20 mos, didn't respond to his name as well as displaying some other autistic traits. I used to work for and EI agency some years back and I had a few contacts and called Child Link here in Philly. They came out and evaluated him (team was from Ken Crest) and thought he needd to be evaluated further. We took hom to Dr. Thomas Casey in Bryn Mawr. He played with him and met with us for 2 days. I was very comfortable with the doctor. We then needed to get a BDA for our son and the therapist was great! My son sbsolutely Lubs his teacher! We are seeing big changes in him already. He is 2yrs now and in therapy for about a month. He gets SI 3x week/1hr. Let me know if I can passon any info.
R.G. answers from York on March 26, 2007
I can only begin to understand what your days must be like. Reading your post, what stuck out the most seemed to be the underlying idea of Sensory Overload or hypersensitivity in your 4 yr old daughter. I found this page when searching for information regarding that issue... <http://thiswayoflife.org/whatisitlike.html>
I wish you the best in finding what your daughter needs to get through her days, and that most of your days will be good ones.
Wife, Mother, Friend
R.J. answers from Allentown on March 26, 2007
Hi.. My name is beckie. I have a 6 year old who has the same thing as your daughter (Autism/PDD-NOS) My first question is where are you from? As for special testing they should do the testing. In your IEP reports should give all the specifactions of what she is capable of. Counting, Alphabet, color recognition, speech, etc....Everything that is done in the testing (well for us) was written in a seperate report that was passed along with the IEP report. There were also some things written in our IEP that had happened in the testing but not entirely.. Make sure that what ever happens you are comfortable and satisfied with it. Dont hesitate to ask the teachers or therapist or who ever does the testing. Is she going into a special K class or is she going into a regular class? If you would like you can email me.. It's nice to talk to someone who understands whats going on... ____@____.com... Please feel free... I hope everything goes well..... Beckie
Also when they do the testing if you feel there is anything they missed ask them about it. You should also consider making yourself a list of things and taking it with you when you go. I know when I would go to my IEP meetings with the teacher I would forget some of the things I wanted to ask. Now I carry a composition book with me so when I go I can make notes of good home activities and remember all the questions I had. Good luck with everything I hope to hear from you soon..