PDD - NOS, now what?

iVillage Member
Registered: 09-11-2004
PDD - NOS, now what?
13
Wed, 12-21-2005 - 6:16am

Not sure where we go from here... we will be waiting on the Neuro Psyche's written report for her favorite resources. Obviously we are waiting until after the holidays to contact anyone. We will first be increasing her speech therapy, and then go from there to look into ABA.

Any thoughts?

I updated our website with the information for family and friends... www.aliandpeanut.com Go to Peanut's Current Events, and Ali's Current Events.

Thanks in advance...


Our Webpage: www.aliandpeanut.com

Our local Down syndrome group:

Pages

iVillage Member
Registered: 10-09-2004
Wed, 12-21-2005 - 10:15pm
I remember seeing your website on another group before maybe the SID board? LOL, it is a small world after all!
I am kinda in the same boat... it's like PDD and now what do we do? I have recently applied with CARD (center for autism and related disabilities) to get assistance with the behavior therapy and potty training etc. I am not sure if you have that in your area, but that is a consideration.
I updated the current IEP/school board, teacher, therapists etc. However since we found out over a month ago, I haven't gotten much done yet. With the holidays everything is in turmoil so I thought I would also wait till after the beginning of the year. So good luck to you, lemme know what you find etc.
Shana
iVillage Member
Registered: 03-26-2003
Thu, 12-22-2005 - 2:26am
Thanks so much for posting your web page. I was both fascinated and deeply impressed to read about your great girls. My niece is Down's and has some form of autism as well. I have seen how challenging it can be to help her. You must be a very unusual person yourself. Take care.
Avatar for cathby
iVillage Member
Registered: 05-16-2003
Thu, 12-22-2005 - 3:35pm

Hi,

Welcome! I've seen your lovely girls before... Developmental Delays board? I am SO impressed by your website. You're a carseat nut, too! I used to be. I'm still a Britax Mommy, though!

My DS Jack is 4.5 and has a PDD-NOS dx. He's as sweet as the day is long. Doesn't talk much (usually just to tell you what he wants to eat or do). He does do an ABA program (approx. 30 hours a week) at school and at home (in addition to major speech and OT -- he has big sensory issues). He's doing really well these days. I used to be freaked out by the ABA idea... but it teaches him things that he doesn't pick up on his own from his environment. At the moment he knows quite a bit of what a typical 4.5 year old should know (getting him to share it is another story!)

I have a friend in town I've made through special ed who has a Downs son (a twin with a typical sister). I've learned a lot from her. You've got a lot "on your plate" as they say, but you are facing it with a great attitude. That will get you far!

Take care,
Cathy

iVillage Member
Registered: 03-26-2003
Thu, 12-22-2005 - 10:46pm

Sounds like you have it covered and already did your homework.

If I remember she is 2? Then she is still covered by EI. She should likely get home ABA or other educational type services for the main services. If not ABA, then PRT, floortime, etc, or a mix of those depending on how she learns and what is available. Then she should likely gets Speech and OT and possibly PT if she has any motor delays.

Check out this link, The book is available on amazon but last I checked you could practically read the whole book right online. It is the recomendations for young children with autism spectrum disorders from the national academy of sciences. It was the collaboration of a bunch of experts in the field of autism.

http://www.nap.edu/books/0309072697/html/

It was their recomendation that young children with ASD's get at least 20-25 hours per week of intervention. What that was didn't matter as much as getting good quality intervention where they were actively involved. It is also important to take into account a childs learning style and family dynamics as well as what is available.

Renee

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iVillage Member
Registered: 09-11-2004
Fri, 12-23-2005 - 4:49am

Shana - I think I've been on the SID board before, that has been quite an issue with my girls. Since Peanut is only 2 we don't have an IEP or anything yet. That is the next big hurdle, school will be quite a challenge.

SILD - The combination of Down syndrome and Autism one can definitely be a challenge. I am hoping that we don't end up in that situation with my daughter. Feel free to let me know if there is anything I can do to help your niece and her family.

Cathy - I don't think I've been on the developmental delays board, but it's possible. :) We've been on the Autism board, Epilepsy board, and the carseat board. That I remember anyway. :) I am very freaked out by the ABA idea... I was looking forward to homeschooling my kids and not having to worry about the teasing, ect that I went through. That really has been the hardest part, is knowing I can't do that now. Thanks for the compliment. :)

Renee - I did call our local EI provider today. My other daughter has Down syndrome so we've already dealt with them. We actually quit using them over a year ago even though my daughter wasn't even 2 yet.. they were pretty worthless to be honest. They didn't do anything with her that I wasn't already doing from books, or other parents. Even they admitted that. I went private for speech and saw great progress. We went private for PT for a while as well but decided it wasn't needed. Both of my girls see a private ST once a week, but we will be increasing that to 2 times a week for each seperately, and then one time a week they will have a session together. I plan to see if the EI provider has anything more to offer for Autism than they did for Down syndrome, but I'm not holding my breath. I am researching every option, including a school that the Neuro Psyche suggested. I'm just hoping that we can find something that helps, but that doesn't require her to be gone 40hrs a week. Hoping we can do most of it at home...

I guess we'll see.

DH's family is NOT handling this well. I think they pretty much wrote my older daughter off because of the extra chromosome. (Totally ignoring the fact that she is not delayed except in speech.) I swear they just don't get it... I have a beautiful, smart, happy, talented little girl and they can't get past an extra chromosome! I think they were only sticking around because we had one child they considered "perfect". Now that their bubble has been popped about her, we have not heard from them since. Not answering the phone anymore, or replying to emails. So, I cancelled Christmas. My poor little girl is sick anyway, and I'm not going to drag her out to see people who don't care enough to get past Autism.

I mean really, it could be inoperable cancer or something just as serious. When my MIL called to find out the results she asked if the day had gone well and I told her it had. I could just hear how excited she was, convinced I was going to tell her that she was right. When I told her "It's just Autism." She quickly realized that our opinions of a good day were vastly different. I was worried about this being a brain tumor and she was worried about what her friends would think...

I feel much better knowing we won't have to see them for Christmas, will make my holidays much nicer... I took all their presents up to the Grandparents today so I don't have to worry about them anymore.

Some people just don't get it.

www.aliandpeanut.com

www.upwithdowns.org


Our Webpage: www.aliandpeanut.com

Our local Down syndrome group:

iVillage Member
Registered: 02-24-2004
Fri, 12-23-2005 - 11:59am

I'm chiming in a bit late here...but wanted to welcome you to the board! I loved your site!! You have beautiful girls! I also remember seeing you on another board..but can't remember which one! LOL

I think you're doing a great job, you really seem to be on top of everything. I have 2 boys, my youngest, Nathan is HFA. Family can be very difficult. My inlaws don't talk much about Nathan. They pretty much act like he's got no delays. I'm glad that they don't gasp at everything he does or says, but it would be nice if they took the time to get to know him and understand him. It's almost like they don't know how to react. Like they feel they should treat him differently...but don't know how, so they stay away. No one in the family has any neurological delays, etc...so they're really not familiar with any of it.

My mom is another story. She continually asks how Nathan is doing. And when she sees him, she spends alot of time shaking her head in pity. Yes, it can be challenging, but he's just like any other little boy who loves to laugh and play.

Anyway, I hope that your family has a nice Christmas. I know my kids LOVE staying home on the holidays....they prefer it that way!! And again, welcome to the board....hope to hear more about your little girls!

michelle

iVillage Member
Registered: 03-26-2003
Fri, 12-23-2005 - 1:07pm

You know, you are a really incredible mom. Your girls are lucky. I am sorry about the problems you are having with extended family.

You can do most of it at home. Depending on funding you have a couple options. Either you can get a few books, read and figure out what will work for you and implement it or you can hire a behavior specialist to help you set up a program. Then the specialist can come in like 1 time a week or more to consult with you and help make any changes to the program.

I would first start with a thorough evaluation to figure out where her delays are exactly as well as her learning style if that is an option, and go from there. There are many groups and there are lots of parents that have run thier own programs and even trained and hired thier own therapists to work in thier home. I am sure there must be online groups for that.

If you would like some book recomendations I can dig some up for you. What kind of approach are you thinking? There is one great book you should get that reviews all the different kinds of ASD treatments. Lots of them you can use with both girls.

I bet alot of what you are already doing with Ali will work for Peanut too. And, from what I have seen, most Down's children are very social. This will be great to help Peanut with those areas of need and working together with them on social skills.

I personally really like the look of PRT. It is kind of floortime mixed with ABA. I am an old ABA therapist but always used an eclectic and not controlling approach. I prefer a more "back door" approach to ABA. More shaping and positive reinforcement and less controlling approach. I think I would do well with PRT from what I have read but I have only heard about it. I haven't seen it in action. I use alot of PRT type stuff, ABA, cognitive behavior therapy, that sort of stuff at home.

Oh, the book, "Autism Spectrum Disorders: Interventions and Treatments for Children and Youth" by Richard Simpson. It may be expensive, I don't remember. But it reviews all current treatments for ASD's and is a great resource if you are trying to figure out which approach to take. After that you can get individual books on specific types of approaches.

Renee

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iVillage Member
Registered: 03-26-2003
Fri, 12-23-2005 - 1:32pm

Also,
if you want some ideas right off I wouldn't mind helping out. It has been years since I did it and I am not there to observe, but I can help some with how to set up some programs.

Email me at renee@asdrendrewolf.org if you like.

Renee

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iVillage Member
Registered: 03-26-2003
Fri, 12-23-2005 - 2:16pm

You are very kind. I checked your site. Ali looks nothing like my niece. It is hard to explain, but your dd has a spark in her eye, that my niece never had. Somehow, I am convinced that both your girls will be fine, thanks to you. If you have not read her already, I can highly recommend Temple Grandin's books. She has some really interesting insights on living with autism.

BTW, why did you get teased in school?

iVillage Member
Registered: 09-11-2004
Fri, 12-23-2005 - 3:48pm

Michelle - My family is WONDERFUL with both of my kids, I can not say enough about the way they have handled everything. My Mom worked with people with DS and other disabilities who had just been put in nursing homes at birth... so she had a VERY horrible perspective when my first daughter was born... but she has been amazing. My kids ADORE my parents! My in laws actually bought my older daughter toys for her second birthday that were meant for birth - 6 months. She was walking, talking, and using more sign language than they know... but because she has Down syndrome they bought her toys for a new born. They don't see my kids more than once a month so how would they know differently? In fact, I cancelled Christmas three days ago after telling them about Peanut's diagnosis, because the girls were sick. They have not returned phone calls or emails since we said the word "Autism."

Renee- I'm working on the books... my family has continually said they need to buy me a library, and at the rate I'm going that is going to be true. :) I like to have as many books on a subject as possible so that when I don't have online time I can still look things up quickly. I also do plan on having a behavioral therapist come in to help me as well. We actually have one that works with our ST, and our ST does lots of work with kids with ASD. She actually has a son with Autism. We did a full evaluation of her strengths and weaknesses, and it looks like her biggest delays are in speech. Everything revolving around speech, auditory processing, ect. Anything involving communicating she has a problem with. I did order that book, as well as several others. And I would love any ideas that you may have as well. My older daughter is DEFINITELY very social! She is so funny, and she has been so much of a help to my younger daughter. It strikes me as funny because everyone said that my older daughter needed a close sibling to help her, but it has been the other way around. If you have the time to give me ideas that is great, but I won't bother you if you are busy. Feel free to email me if you have time Chelsae@Upwithdowns.org

SILD - My Mom cut my hair when I was in 4th grade...totally CHOPPED it off. AND permed it! I looked like a chia pet! That's when I remember the teasing started and it escalated from there. I ended up with acne, I was a whopping 90lbs and 5'1 but was told I was fat... and I just didn't have the social skills which was what started it all. That is my biggest concern. I was not diagnosed with Asperger's until we started researching it for my daughter... if I had been diagnosed when I was younger I may not have had such a hard time in school. I really think the social skills were the biggest reason that I got teased. We are very lucky with my daughter who has Down syndrome.. she has always been very happy and very typical. Regardless of health issues she has developed as a typical child would except for her speech delay. She is the most amazing kid I know, so happy, so funny, so PERFECT. People who can't see that (like my in laws for example) are blind... she is the best kid I could have asked for. I'd take another one with Down syndrome in a heartbeat. :)

Thank you so much to everyone... I'm feeling much better about this whole situation. We've had a couple of pretty good days because she has been too sick to be a pain. :) But today that is wearing off and we are having tantrums, ect again. So, we are back to regular stuff. I'm just glad I had a couple of days to remember that this child CAN be sweet and loving and gentle.. we just have to figure out how to help her be that way all the time (without the 103 degree fever!)

Thanks again.

www.aliandpeanut.com

www.upwithdowns.org


Our Webpage: www.aliandpeanut.com

Our local Down syndrome group:

Pages