Does anyone have a toddler with PDD?

amother

Mon, Apr 26 2010, 1:04 pm

My perfectly adorable, lovable toddler has been diagnosed with PDD and will have to start ABA therapy in a center. I'm having a very hard time dealing with this and can't stop crying. Has anyone else on this board gone through something like this? I applied for the subgroup here for special needs parents but I hadn't been approved yet.

I'm having a very hard time accepting that my very normal-looking, affectionate child has such a grim diagnosis and that my life is being turned upside down now with all the appts for therapy and playing phone tag with agencies. (Not to mention having to cancel my summer plans because he has to start therapy asap if I want my child to have a normal life/be mainstreamed at some point....)

Chana Miriam S

Mon, Apr 26 2010, 1:55 pm

seems to me you might want to talk to those of us who are through the toddler years. mine was diagnosed 11 years ago with PDD _NOS. he is now 14. go into the special needs autism spectrum forum to read my posts about him. he is awesome.

he too was a perfect looking baby and toddler and seemed fairly on target for most developmental milestones, but we KNEW there was something atypical going on..

now, we are getting ready for high school which is next year. whatever his challenges, he also has many blessings because of his pdd.

I am happy to talk with you about how different things are now than then. your kid might not be exactly like mine, but I do know that he is not going to be the same person when he is 14 as when he is 4.

mine is aiming for engineering school. I NEVER could have predicted that when I was looking at his perfect little blond haired blue eyed face and thinking that his wiring was defective.

his wiring is different. it brings challenges, but also goodness.

bandcm

Mon, Apr 26 2010, 5:44 pm

I saw this post and thought I had written it.
My two and a half year old daughter has just been diagnosed with PDD.
The difference between you and me, OP, is that where I live, there are no agencies, there are no ABA centers, and there are no support groups. The child psychologist who diagnosed her had no suggestions other than speech therapy.
IYH we are going abroad next month for a month, to a civilized country, and there we will take her to a center to get a second opinion and advice. I read a lot about the NGNC diet, and am beginning it with her - although it will be very hard, as there is no kosher food around here, and no specialized non-gluten flour to be had. It will be hard.
Chanamiriam, how did you stimulate your son? Also, my daughter babbles quite a bit, when playing on her own. Is that a good sign, or bad? (We are so on our own here - there is nobody to ask.)
Thank you for any suggestions or help anyone experienced can give.

amother

Mon, Apr 26 2010, 5:56 pm

If you can get stuff shipped to you, I highly recommend reading "More Than Words" (http://www.specialneeds.com/books.asp?id=10849). It is essentially a collection of techniques and tips to help autistic-spectrum kids communicate in a no-pressure way. If I could find my copy I'd ship it to you. It was very helpful when I strongly suspected (speech therapist agreed) that my 2-year old was on the spectrum. B"H he isn't in the end, but it was a challenging road while we were on it. The book was written for parents who didn't have immediate access to therapy, so it's a sort of "parent therapy."

Also maybe look into the Son-Rise program. I've heard good things about it. http://www.autismtreatmentcenter.org/

amother

Mon, Apr 26 2010, 6:55 pm

My daughter was diagnosed at the age of 2.5. She was talking very little then but we got her into a wonderful modified ABA program. Now she is five and is doing wonderfully. She is still quite rigid in her thinking, but she is completely verbal and has an amazing volume of info stuffed into her little brain. I guess you can call her a genius with no social skills. Her difficulties lie in perspectives. It is sooooo difficult for her to understand that other ppl think and know things. But these are all things her amazingly dedicated thereapists are working on so we hope that by the time she hits her teenage years, her disablility will hardly be noticeable.

Chana Miriam S

Mon, Apr 26 2010, 8:04 pm

we also did more than words. it was run for us as a programme from our children's hospital but the great thing about it was that you could do it yourself and that some of the tips were instantly usable. also, they have different skews for where your child is at developmentally, so different instructions for verbal, partially verbal and non verbal.

how we stimulated our son was first in jewish nursery school, our local main stream orthodox school, and later, when we moved to a place where we could not find a jewish school that would take him, he went to a class in the public system that was for kids on the spectrum, which was from about8:30 to 3:30 every day.

we signed him up for local day camps and activities just like other kids, and sometimes we could even get volunteers to help out. to this day, we have a friend who we met ten years ago when we sent a fax to the brandeis hillel asking for a volunteer to work with him, no knowledge of autism necessary, just to play with him and read with him etc, because I had a baby and was concerned that he was not getting enough 'him time.' now she is a mother with a baby and it is so nice 'cause I got to help HER through breastfeeding and going back to work with a baby!

feel free to pm me if you want to speak more personally.

Personally, my developmental pediatrician pointed out that in fact, there is no real need for a second opinion because the treatment involved for kids on the spectrum, is very much related to their real time needs, and in fact, most of the things we do for a kid on the spectrum are no worse for a typically developing kid either. in fact, in our orientation, which was open to educators, teachers were encouraged to use techniques for autism spectrum disorder with all kids in their class rooms (like calendaring 'first-then' and making sure they used eye contact and repeated directions etc.)

while our daughter is developmentally typical, there are all sorts of things we do with both of them that are a direct result of our son having had pdd. I don't know that I could name them any more, but I do know that they are in our lives every day.

amother

Mon, Apr 26 2010, 8:21 pm

Ive been watching my kid all afternoon and am seriously doubting the diagnosis. He is acting like a child with sensory issues who needs therapy; to me he doesnt seem to be PDD. I don't know. How can you make a diagnosis like that based on asking a bunch of questions off a sheet from the mother, and that an overtired toddler didnt want to make eye contact with a stranger?

Should I rather see a developmental pediatrician or a neurodevelopmental disabilities specialist?

I am due to meet the intake coordinator at our local ABA program to see if he fits the criteria for the school, is that enough for me to be a "second opinion", I.e. she knows enough to see if this is a typical child who needs ABA?

I am having trouble accepting it, my child does not seem disabled. So he has quirks, and doesn't really talk, but he is not off in his own world like a child on the spectrum. I'm really confused.

Chana Miriam S

Mon, Apr 26 2010, 8:59 pm

I totally hear you on questioning whether the dx is right, but the thing is yes, the doctor that told me not to worry about it also said that the pdd service would catch it if he was wrong, because that is what they do full time. now, I know that our doc is a world leader in autism and he knew exactly what he was seeing within the first 15 minutes. I KNOW what I am seeing in other kids, now that I have more experience. it is a rEAALLYYY big spectrum. REAAALLY BIG. There is room for lots of different people on it. Look at Temple Grandin, http://www.templegrandin.com/or Steven Shore. http://www.autismasperger.net/

with regard to your kid, not seeming like a kid with a disability, let me tell you how the last eleven years have gone with my boy.

-his disability happens to give him abilities that so called normal people do not have.
-he has been in a regular mainstream orthodox jewish day school since grade 5, and is currently in grade 8, graduating, likely very close to the top of the class, if not the top of his class.
-when he was 12, we sent him to israel for the summer. 9 weeks without parents. 3 in a summer camp, 3 with a friend living on their moshav and three with his father travelling around. he had an AMAZING time and I was much more worried about the camp's proximity to the syrian border, then how he was going to do there.
-he speaks hebrew and english fluently. reads and understands french (yeah, I know, its a communication disorder.)
- he is a handsome boy with a great sense of humour
-socially he is a dork, but he is a nice kid and most people get that.
-he loves heavy metal music
-we hope he will meet some more dorks to be friends with in high school
- he goes to camp every summer. this summer in his off time, I plan on having him work for me.
-he could move into an apartment and do personal hygiene, laundry, cooking, cleaning- including toilets, kitchen etc (except his room) and survive eating gourmet meals. yes, he has more life skills than most of the husbands on this board seem to have.
-he is a great big brother
-he is a good student, and I dont mean the fabulous grades he gets, I mean, he is a nice kid and does not intentionally misbehave. teachers appreciate him.
-he is such a savant that if he were inclined, a number of rabbis feel he could be an illui of his generation with regard to torah and jewish learning.
-he, however, wants to be a video game designer/software engineer.
-he regularly gets grades in the 90's
-his executive skills are poor, but he is capable of learning ways to cope, so he has. we try to be proactive about what he needs to know the first time he does something. after the first, he is usually ok, by himself. he learns.
- he is going to public high school, where they have good guidance services. I don't plan on rushing him through. I want him to be able to go to engineering school some day if he wants to.

he is a loving teenager who has a strong moral compass and a very big conscience. we are very lucky to have him and know we got off easier overall than some people withtheir normal kids.

learn everything you can and be proactive and advocate for what you think is right. knowledge is power. in boston we took on the school board about integration and they saw we were srious and knowledgeable and did what we asked and in even a better way that we even had expected. schools have worked with us all the way through.

Chana Miriam S

Mon, Apr 26 2010, 9:33 pm

no, it was very expensive, and I never pursued it. I don't know anyone who did the programme. I do not believe that this whole spectrum thing has a cure, either, but I do believe that the people can learn to work around their issues, if they are high functioning.

also, I want you to know that you will know you are accepting of the whole thing when you think about what you would do if you were offered the choice for a cure, or not.

I realized after a while that a cure would have changed who my kid was as a human being, and the gifts he has because of this disorder would also disappear in a so called cure.

today, I know I would give him the choice, but not until explaining the consequences of both situations. I am not sure what he would do. I can ask him though.

chana miriam, by the way...

amother

Mon, Apr 26 2010, 11:07 pm

Pina, my kid doesnt talk yet at all. but he does make grunting sounds a lot and play with his eyeballs, fingers, and ears, he also loves to lay on the floor or any surface. He doesnt obsess over any particular toys, although he loves technology, so he will make a beeline for any phone, camera, etc.

flowerpower, the diagnosis was made based on making no eye contact and acting as if the evaluator - who was a psychologist - wasnt there at all, and not answering to his name.

My husband is having a very hard time with the idea of staying home this summer, as he has been looking forward to this all winter, and my other children desperately need the outdoors as well. I will try to work something out with the ABA center so that we can push a month of services in now, and go away for a shortened vacation.

In addition, I am just having a hard time wrapping my mind around the idea of having my entire life scheduled around all of his therapy appts. I would have to go to the center daily and that would severely disrupt my daily schedule. But what can you do.

In any case Pina I will PM you. Thanks all for your support. I really wish the moderator of the special needs subforum woudl approve me already. I feel so alone.