Find your diamond
Find your jewelry
shape
carat
color
clarity

PDD-NOS diagnosis for 4 year old

innerkitten

innerkitten

Ideal_Rock
Joined
Aug 1, 2003
Messages
5,623
So my daughter got a diagnosis of PDD-NOS :-/
It's all so weird. She's in some ways very average but she has a hard time socializing with her peers ( always has ). She's fine with adults and loves older kids and has great language skills and expresses herself well. But she gets really hyper crazy at school and can't focus and chases the other kids around etc. The first person that evaluated her said she was just " high needs" or something like that. I can't remember the term. Then the second person said possible ADHD but wanted to re evaluate her a year later and at the second evaluation came up with PDD-NOS, her problem area being social.
Of course when I looked it up online it seems kids with this diagnosis are all really different so it's a strange diagnosis to have. Very individual for each person.
Has anyone else been through this?
 
What is PDD-NOS?
 
I would like to know what it is too, Innerkitten.. I haven't heard of this before, but don't know what it stands for. Please fill us in, it sounds familair by what you describe. I would love to know more from you. When you have a free moment...
 
Pervasive Developmental Disorder - Not Otherwise Specified

Try not to worry yourself with the label. Just focus on your daughter and her needs. Available services with be greatly varied depending on how your schools are set up.

I teach children with Autism in NY but I have worked with children all over the spectrum. If you have any questions just give me shout and I'll see if I can be of any help.
 
It's Pervasive Developmental Disorder - Not Otherwise Specified. It is under the Autism spectrum. My two daughters have been diagnosed with that. One is almost 27 and the other is 25. My younger daughter got an Associates degree and the older daughter has one year of college.

My kids were diagnosed as toddlers. The older one couldn't speak until she was 4 yrs old and we taught her to speak with sign language. Once she learned to speak, a lot of the bad behaviors went away. They are wonderful young women now. They do have some glitches, but who doesn't?

My suggestion is to get your daughter all the services she is entitled to through the school system. Get involved in a parent support group. They will tell you information about services your child is entitled to and how to go about getting them. We live in Texas now and the special education system stinks. When we lived in New Jersey, the benefits were much, much better. You are you child's best advocate. These children are special and will bring you joy in ways you couldn't even imagine!
 
Innerkitten- as a special education teacher, I ditto the others in saying "don't focus on the label itself". Focus on whatever needs your daughter has and address them as they come up. I have worked with plenty of children who fall all over the spectrum, and they can do just fine, and even really excel... Does your daughter's school have an autism program, or any kind of support for students with this type of issue?
 
Sorry for not explaining it. Yes it's a kind of a weird diagnosis because it means your child doesn't fall into any specific catagory ( not otherwise specified) If you read about specific cases it seems every child is affected differently. My daughter is mild and it really displays itself in social situations with her peers, especially school.
She talked about the same time as other children ( maybe even a little early), and walked at 16 months, potty trained at 3, so not too late. But she has never been able to make any friends and she was always weird with strangers as a baby. The only way she'll play with other children is if it's tag or hide and seek or something very active. It has to be a very physical game that doesn't require discussing things with the other child or children. Her therapist suggested play dates which we've done with some success. But she can't handle more than one kid at a time and she'll only start to play with them after seeing them a few times. With me, her father and and other relatives she's comfortable and plays games uses her imagination well. I feel really bad for her. It's hard.

She's about to be evaluated by her school to see what services they might have for her.
 
BTW I was so focused on typing away more I forgot to say thanks for replying to my post :) and for sharing your opinions and experiences.

I don't know what school she'll be going to next year yet.
 
I agree with Asscherhalolover...try not to sweat the diagnosis...just use it to get your daughter the servicves she needs and ignore the "label". The really good news is that you obviously kept on top of this to have a diagnosis so early. With the proper intervention, she *should* be able to thrive within her peer group in time ( my background is in counseling and I have some experience with PPD and other spectrum disorders)

Did the doctor give you a list of resources to use (i.e. OT or something similar)? Learning some good techniques that you can use at home, and that the teachers can use at school will go a long way in helping your daughter. We worked with a ST for our son and some of the simplest things (that I hadn't thought to try) were key in helping him make huge strides in communication. Fast forward a couple of years and he's on par or ahead of his peers in most categories.

PPD-NOS is definitely a broad category, so don't let what you read upset you...it's still somewhat of a new field and it's always evolving. If I can answer any questions for you, please ask. :))
 
I think at the moment I need more resources. She does have a behavioral therapist we see sometimes. What's is ST?
 
alpha238 said:
It's Pervasive Developmental Disorder - Not Otherwise Specified. It is under the Autism spectrum. My two daughters have been diagnosed with that. One is almost 27 and the other is 25. My younger daughter got an Associates degree and the older daughter has one year of college.

My kids were diagnosed as toddlers. The older one couldn't speak until she was 4 yrs old and we taught her to speak with sign language. Once she learned to speak, a lot of the bad behaviors went away. They are wonderful young women now. They do have some glitches, but who doesn't?

My suggestion is to get your daughter all the services she is entitled to through the school system. Get involved in a parent support group. They will tell you information about services your child is entitled to and how to go about getting them. We live in Texas now and the special education system stinks. When we lived in New Jersey, the benefits were much, much better. You are you child's best advocate. These children are special and will bring you joy in ways you couldn't even imagine!
Click to expand...

As a teacher, I agree with this. I have taught children with assorted diagnoses. The contributions they make as they grow older are significant. Everyone is on their own schedule. Wishing you the best, and keep us posted.
 
Sorry about that....ST is a speech therapist. I think it's good that you see a behavioer therapist...hopefully, s/he can give you some suggestions that you can use at home and that you can share with her teachers at school.

Hang in there...I know it probably seems scary right now, but with early intervention, her prognosis is excellent!
 
I agree with the others, this is kind of a "grab bag" diagnosis for children who have autistic features, but don't meet the strict criteria for the classic diagnosis (one of the features is impaired language development, which your daughter does not seem to have). This is often because the children relatively high functioning and are only affected in a few areas, usually in social development.

I agree you want to get all the resources that the school can offer. If they have not set a date for testing, put a request in writing. By law, that puts the school on a timeline.

I have seen lots of children on the autistic spectrum, they are really a diverse group, and I think your feeling that your child does not fit what your are reading about is typical. I can tell you I have seen lots of children that sound like her, so she is not the only one.

Her therapies should be geared towards her specific delays. If her speech is completely normal (not just in vocabulary, but in the way she structures her sentences) she may not need speech therapy. She will need specific therapy to help with her social skills which the school may not offer. She may also need some behavioral therapy to deal with her attention issues.

The gold standard children with autistic traits is Applied Behavioral Analysis (ABA). This is an individualized therapy that deals with the child's specific problems. The school probably will not offer it, as it is labor intensive and therefore expensive, but it is worth looking into. I know of one legitimate lower cost program that uses web videos to evaluate the child and create a program that the parent can do with the child.

Otherwise, for some reason, I am remembering that you live in California, am I right? If so, I have some specific resources.

I hope this helps, and let me know if you have any questions.
 
I would say it is a diagnosis for kids who demonstrate features of "atypicality" (stand out among their peers, you see it more vividly if you observe them on the playground) but do not have enough traits to qualify for autism or Asperger's. The term "autistic spectrum" is very appropriate because it is a syndrome, a constellation of traits, but not an illness, and two kids on the spectrum can be dramatically different. If you think of "spectrum" as a continuos line where most severe cases of autism are on the left side, Asperger would be somewhere in the middle, and PDD NOS to the right (much less affected) side.

The good part is that she got this diagnosis early. Studies have shown that the earlier the intervention, the better the results, and that by intervening early you can actually change the outcome for these kids. I, too, would vouch for ABA, PT (they are sometimes clutsy), OT and speech evaluations. It is great that the school system is trying to help!

ABA helped my son who actually was not diagnosed at 3 and had full-blown traits of Asperger's at 4. There are some other things that helped, just my observation, but it seems that some PS-ers living in CA are willing to help with resources which is great.
 
Yes I'm in Northern California and I would love to hear about any resources ( or advice, although some of you already have) people here are willing to share.
 
innerkitten said:
Yes I'm in Northern California and I would love to hear about any resources ( or advice, although some of you already have) people here are willing to share.
Click to expand...

I would contact your local Regional Center. That is usually the program for early intervention (age 0-3) but with a diagnosis, you child may qualify for some of their services. At the very least, they are very connected in the community and can direct you to other resources.

The MIND institute at UC Davis is a multidisciplinary center focusing on nurodevelopmental disorders, it is highly regarded nationally. Here is some information http://www.ucdmc.ucdavis.edu/mindinstitute/clinic/referralinfo.html. You need a referral from your pediatrician, if I was still living in Northern California, and had a child with a developmental issue, this would be the first place I would try to go to. This would be a great service for your child because they handle both children on the autistic spectrum and children with attention problems (BTW, most children I have seen with a diagnosis on the autism spectrum have attention problems, so you are not alone in that either).

Hopefully, you will be able to get services as you are in a very good area. But I have also started recommending this website, expecially since I am now practicing in the middle of no-where where early intervention and the school system do not provide adiquate services, and ABA therapy is non-existant. It is a video program. The developmental pediatrician I work with recommended this. There is a fee (less than $100), but most ABA therapy is in the thousands, so it is an option for those without good insurance or resources. Or I recommend it as a bridge while parents are waiting for ABA therapy. A very frustrating aspect of this is that it can take months to get a child in the right place. Since early intervention is key to successful treatment, I want to get the child started on something even it if is not ideal http://www.rethinkautism.com/.

Hope this helps get you started. I am interested to know how things go for you and your daughter. I have to repeat what the others said, the earlier the intervention, the better chance you have at a good outcome. Be careful when researching autism online, there is a lot of bad advise out there, and a lot of people looking to make money off this (sad but true).
 
An ABA has never been mentioned to me before and I'm curious about it. I live in San Francisco so davis is probably 5 hours from me? At least I think so. Right now her therapist is through CPMC, California Pacific Medical center. Thats also where she got her diagnosis. I'm not sure how much they have to offer. I'm going to mention it to her therapist when I see her tomorrow.
We have UCSF here ( thats where I get my allergy shots ) but I haven't heard about them having anything for children with my daughters diagnosis.
 
The most important reason for a diagnosis is to create support for treatment. If physical/occupational therapy will help your daughter then having a diagnosis is a really good start. Sometimes as the children get older it becomes important to rethink the dx.

My middle child seems mostly normal now, maybe looks ADD+ (definitely hyposensitive in a world that puts more emphasis on hypersensitivity), but we had him tested several times as a child and he just wasn't falling into a particular dx and thus was excluded from rx. If you have a dx - run with it and use it to get as much for your child as you can. Living without a proper dx (like my son) is really hard. The only thing I was able to get for him is speech therapy and with that the teacher thankfully used it to deal with his social skills. My son was tested by early intervention and scored two standard deviations (1%) in adaptive and one standard deviation (8% I think) in social and they refused to help him because they said he had too many skills. Ugh. It sucks to get a dx but from where I'm sitting it in some ways is a door opening to a lot of wonderful possibilities. The dx doesn't change your daughter - she is who she is with or without the dx, remember that. This doesn't change her!

PDD-NOS is super vague, but it is a start for treatment and that's important. It can be hard to accept... there's a wonderful poem out there that's like I was headed to earth but ended up on mars or something... let me see if I can find it and I'll post it.
 
Okay I was a little bit off... but here is the poem :)

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley
 
Cehrabehra said:
Okay I was a little bit off... but here is the poem :)

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley
Click to expand...

That's beautiful. Thanks for sharing.
 
innerkitten said:
An ABA has never been mentioned to me before and I'm curious about it. I live in San Francisco so davis is probably 5 hours from me? At least I think so. Right now her therapist is through CPMC, California Pacific Medical center. Thats also where she got her diagnosis. I'm not sure how much they have to offer. I'm going to mention it to her therapist when I see her tomorrow.
We have UCSF here ( thats where I get my allergy shots ) but I haven't heard about them having anything for children with my daughters diagnosis.
Click to expand...

UC Davis medical center is probably about 2.5 hours away from you. It is located in Sacramento. It might be worth going up there for an evaluation, but for the actual therapy, doing that in SF. UCSF has an autism clinic as well, I just don't know much about it.

Autism Speaks is a good parent resource, it looks like they have a free resource guide for high functioning kids (kids with mild autistic features) http://www.autismspeaks.org/community/family_services/100_day_kit.php. There is also a nice explanation of the different treatments including ABA therapy http://www.autismspeaks.org/treatment/index.php.
 
now that you have a dx, depending on your insurance you may be able to get a full time private ABA therapist who comes to your house. I have a friend who was doing this with her son and ended up getting trained to do it herself for others.
 
You must log in or register to reply here.
GET 3 FREE HCA RESULTS JOIN THE FORUM. ASK FOR HELP
Jewelry Blog
PriceScope-Concierge-Ad
Find prime cuts.
Top