A PDD-NOS question...

[BrerMom]

My just turned two-year-old son has been in speech therapy for about six weeks. He can say a few words clearly and has made wonderful strides in the last month - he's even starting to babble a little. He has qualified for Early-On intervention, also. The speech pathologist has recommended that I advise his pediatrician that she strongly suspects he is (has?) PDD-NOS.

I've read everything I can find about PDD, but I can't find the advantage of disagnosing a child at this age. Most of the kids I read about, unless they were autistic, were much older.

Might he qualify for special ed if the pediatrician agrees with the speech pathologist or would I be able to do the same interventions regardless?

Any good resources would be appreciated and thank you for your help.

 

[teri]

Diagnosing these syndromes takes months and years... just a suspicion of a delay should be enough to qualify for services. Some of us never get clear diagnoses, or we get multiple diagnoses - I call it Alphabet Soup Syndrome. And to top it off, the diagnoses will have different meanings, terminology and implications with people from different dsciplines. It can get interesting.

The publications from the Zero to Three: National Center For Infants, Toddlers and Families are pretty good. Diagnostic Classification 0-3 is a great reference. PDD-NOS is such a wastebasket diagnosis... you need to get a full team evaluation before you go putting labels on your kid, and even then...

Anything written by Stanley Greenspan is worth reading. The Child With Special Needs : Encouraging Intellectual and Emotional Growth -- Stanley Greenspan MD, et al is a great one. I would recommend that as a start.

 

[BrerMom]

Thanks, Teri, I had hoped you would answer.

I'm reading the descriptions and he has some symptoms, but not all, of course. I'm really hesitant because I'm afraid he's going to be labeled as PDD-NOS, everybody breathes a sigh of relief that we know what's wrong, and a secondary condition will go undiagnosed. And it's frustrating because many of the symptoms seem normal for a toddler to me - for example, "doesn't play with others his age." It's true he doesn't, but that could be just another name for parallel play at the toddler age.

Thanks for the reading material references...If I research this as much as our WDW trip, I'll be an expert!

 

[s&k'smom]

Welcome to the Disabilities Board. Your post really caught my eye. My 4 1/2 year old son has the PDD diagnosis and he was given this diagnosis at 2. Here in Massachusetts the resources for these kids is growing and professionals and school systems are recognizing the need for intensive services. My son started in early intervention but I knew there was more to him than just a cognitive delay. I took him to a neurologist, then had him examined by a psychologist. Who both gave him the same diagnosis. Please don't be afraid of a label. Just say he is given a PDD diagnosis, with intensive, one to one services this may not be a label he keeps. Once the kids reach 3 here they transition into the public school system. This is where your real fight can begin. You must make sure he is given the best education possible. My son is in a full day program with 10 hours a week in-home and it has really saved his life. Though the PDD diagnosis is something he still warrants he has made unbelievable progress and my hopes for his future are much brighter. Jump on the internet there are hundreds of sights for you to research. Lots of theories out their to. Follow your instinct. Please keep us posted. I know it is a scary time for you, believe me I know, but you'll be ok. Just take it one day at a time. Please post back if you have any questions or want any info from here in Mass. PS check the special education laws in your state. That a whole other story!

 

[teri]

I have to say, Massachusetts is waaaaaaay ahead of most other states... I was really spoiled by the proactive services in Massachusetts through EI and the school system. It isn't like that in the rest of the country, believe me! The label thing is just a justification for services as far as I am concerned. But I know what you are worried about.. you want to make sure that this isn't labeled on thing, and then other possible treatments that will help are not offered. Verbal skills and communication disorders are only a part of it. Just hang in there, keep reading. If you can get a full multidisciplinary evaluation done at a University-based child development center that specializes in special needs, you will be better off than if you go local in most places. Sensory Integration, Auditory Processing, Speech and Language therapies, therapeutic play... there is a whole world of help out there.

It is easy to get pulled into fads and quack therapies that sound extremely convincing, like Holding Therapy, Dolphin Assistive Therapy, some of the dietary or hormonal 'cures'. Gotta be careful where you put your time and money in the hopes of a cure.

 

[SueM in MN]

It sounds like he is already in the appropriate program for him since you say he is in Early-On intervention. It's called various names in various places, but it is basically early intervention/education for children birth to age 3. Once they turn 3 years old, then they come under the Early Childhood Education (ECE) umbrella of your local school district. ECE covers your child until they reach the age that children normally enter school. At that time, if he still needs services, he would fit under other programs (including special education).
Many children make enough progress in the birth to 3 and ECE programs that they don't need special education, or at least need less support, when they do get to Kindergarten.

 

[BrerMom]

Sue, it's interesting to me that, yes, he qualified for early-on intervention, but they shut down during the summer except for the weekly play-group. So I won't really know how they plan to help him until September.

We will keep going to the private speech pathologist twice a week all summer and it looks like insurance is going to pay part of it for six months. Boy, did I have to jump through a lot of hoops to get that! She recommended that I start keeping my ears open for a pediatric neurologist that I would want when the time came. I suspect that she knows more than she's telling me and is giving me time to get used to everything. She gives me something new to think about once a week. Two months ago, I just thought he was a late bloomer in the speech department with some other unusual behaviors that he would out-grow when he could talk. Naivete at it's best.

In the fall, he will be evaluated again to see if he qualifies for speech therapy through early-on and another evaluation to see if he qualifies for special ed.

And Teri, you're right - I think there may be something else besides PDD and I don't want them to miss it. I had thought about the University idea. I thought it might be easier for him to learn sign-language first.

s&k'smom, I've been reading every internet site I can find. Am I correct that even though the label is different, the interventions for PDD-NOS and autism are basically the same?

I actually think I'm at an advantage for avoiding the fear factor because I'm a teacher. I've been on the teacher-end of IEP's for years. However, I don't have any experience with special ed kids younger than 14. I have to admit it's very different when it's your own kid, though. So many choices.....so many different opinions.

I guess the frustrating part is that he looks normal, he's sharp as a tack and can problem-solve faster than my other two could at this age, but his behavior and speech are so far behind. He crawled on the floor and made a barking noise for the first time last week. We have finally entered pretend play!

Thanks again for answering my questions - even the implied ones. I tried to do a search on PDD, but of course, most of the threads would have been on the old boards.

 

[s&k'smom]

I agree with Terri, I'm very lucky to live where I live. In our state if there is a delay of some kind you qualify for early intervention i.e. speech, gross motor, even environmental issues can play into it. Here too if you don't have insurance the Dept. of Public Health will pick up services until age 3. Then the jungle of public education comes into play. My sister is going through something similar in Oregon. Brermom one idea may be if insurance won't pay for something see if you can get some kind of public assistance. Sometimes waiting for a whole team to be put together can be very frustrating just ask my sister she's pulling her hair out.

Many of the interventions are the same. What my son is doing is called floor time and ABA (Applied Behavioral something I can't remember). Of course it depends on how the child responds. And yes again with Terri about watching what "therepies" someone may try to have you use. Funny my education regarding the autism spectrum never seems to end. One rule I have is that to follow your instinct. You know your child best and I find moms are usually right on the money. People told me oh he's slow, boys take longer to talk etc etc etc. But my gut told me something else. I was almost glad when he was diagnosed because I felt like I wasn't crazy anymore and I could get down to the business of helping my son.

You really seem to be on the right track, keep in touch with the board.

 

[SueM in MN]

Is the speech person giving you some things to work on at home? If not, ask for some.
One of my favorite techniques was called (I think) "guided play". Basically, you follow the child around and do what they do, but you put words to it for him/her. Sort of like follow the leader, with the child being the leader. If he picks up a book, you pcik up a book and say "we're reading books", then when he turns a page, you turn a page and say something like "we just turned the page". It kind of shocks the kids at first because they are not used to adults doing things like crawling on the floor and barking, but it works on a lot of skills besides language.
My youngest DDs favorite book was a sign language book. She would look at that for hours. And at 18 months, she already had communication book with pictures of familiar things she might want to ask for. We used actual pictures of things like her favorite foods from packages, ads and photographs. When she asked for something by pointing, I would supply a whole sentence of words for her and try to get her to repeat some of it.

 

[BrerMom]

Yes, we have homework, too. I like following him around naming things - and he's starting to pay attention. I'm supposed to read board books with him, but unless it's his idea, his attention span is really short. I consider it a good session if he'll look at a book with me for two minutes. He usually lasts 30 seconds.

We also play a game where he sits on my lap staring into my eyes. I say a sound or a word beginning with one of the letters of the week (we're up to four) and wait for him to try to imitate me. If he says anything at all, there is much rejoicing. Otherwise, I'm to repeat it once more and see if he'll try. We do 4 or 5 words/sounds per session. I know I have an advantage in this area, too, because he is so motivated to talk.

Yes, I was glad when the speech pathologist said he was apraxic. I finally had a name for WHY he couldn't talk. If I had a nickel for every person that's told me, "He's in speech therapy? But he's so little! My kids weren't talking at two and they did fine"......

It's funny that a lot of what I'm doing with him seems to me to be phonics. I brought out my older son's flash cards that have a picture and a word on them and we say "cow" while we look at the picture and word cow. Again, he can take about four at a time before he's had enough. I've also had him start blowing bubbles a lot since he can't say "o" and when he kisses, he doesn't pucker. Might help, can't hurt.

I knew I'd be able to get some guidance here and that has really helped keep things in perspective.

 

[SueM in MN]

BrerMom, I'm not sure what part of Michigan you live in, but I have some Michican resources for you:
One is called CAUSE . it is located in lansing and has a web site listed as: www.pathwaynet.com/cause
Another one is called Parents are Experts . it is located in Southfield and has a web site listed as: www.taalliance.org/ptis/mi-parents/
Both of those are state Parent Training and Resource Centers (part of Federal Law for each state to have one). if those links don't work or are not helpful for you, the first organization like that and the coordination for all the state organizations in the PACER Center in Minnesota.
PACER Center web site

Someone else (I think it was teri) had mentioned contacting a University affiliated program. For Michigan, there is one at Wayne State University in Detroit called the Developmental Disabilities institute. There isn't a web site, but there is an email address: aa2732@wayne.edu and a phone number (313) 577-2654.
Another place with some good resources is the Waisman Center at the University of Wisconsin - Madison (proud UW alumni). Here's a link to their resources page.

 

[BrerMom]

Thanks for the links! I'll definitely check those out.

I had a lot of fun at the library today. I picked up several books, including two by Stanley Greenspan. I also requested a few through inter-library loan.


And my baby looked at a picture of a sheep today and said, "Baa." It's enough to make this mom choke up.

 

[momejay]

Do whatever you have to to get your child the help ASAP. My daughter was 2 & had dx of language, speech, & behavioral delay (PDD), when she entered Early Intervention Program. She had speech therapy & a preschool class 3 times a week. This really helped when she entered preschool at 3. We ued PECS (picture exchange) at first. She started talking at 4 & hasn't shut up since. She's now entering "normal" 1st grade with an aide in the fall. (with speech & OT) It was very hard I didn't want to label her, but I'm glad I did. I did make mistakes... like putting her in an autistic kindergarten class because the child study team thought it was best. She repeated Kindergarten this year.
When my son wasn't talking by age 2 the EI Program had lost some of their funding. He had only speech therapy & behavioral therapy each 2 times a week in the home. He started preschool at 3. He is supposed to go to Kindergarten next year, but we are looking for an autistic school for him. Our school district has autistic classes but, we can't get his hyper activity, & behavioral problems under control.
I guess the best advice is to get your child help ASAP & follow your gut. Remember... that you know your child best, not some doctor or child study team member that forms an opinion in a 15 minute visit. The more they socialize with "normal" children the better! Good Luck!

 

[SueM in MN]

The "follow your gut instinct" is really important. When my DD was 3, she transitioned into the school setting.
During her non school hours, she was in a very good preschool where she was treated just like all the other kids, except she couldn't talk and when they walked somewhere, she crawled or had someone hold her up to walk. Her school OT and PT were great, but her teacher (the only Early Childhood teacher in the district) was very negative and ended up being harmful. She had no respect for the preschool teachers (who were actually more educated than she was - several were certified EC-6th grade and one was getting her special education certification) and our gut instinct told us to get her out of there. We moved to our present area and she changed to another school district. Harm had been done though that we are still dealing with.

 

[BrerMom]

And it's the making mistakes that is the struggle. I know we're going to make them, but I keep thinking that if I do enough research and talk to enough people, they'll be minimal.

If he doesn't qualify for a special preschool, he'll go to the same Montessori preschool his siblings went to. The teachers are really good. I actually got him to look at pictures today by putting them on a rug like they do there. Maybe it's a little less overwhelming to have a fixed area to look at.

I don't mind the labels at this stage if they will get him the help he needs, I just don't want to miss a diagnosis. We meet with his pediatrician in a month to discuss these issues and Early-On starts up again in September.

I'm so glad your daughter is talking well now. It makes it so much easier for them to explain what they're thinking and feeling and upset about and questioning and .......

 

[BrerMom]

Oh, Sue, that's so sad. What a wonderful preschool, though.

My gut says he's going to be fine, it's just going to take a lot of one-on-one on my part, quite a bit of intervention, and patience from everybody. DH isn't ready to see anything but the speech issues, but he's not in education, either.

My ace in the hole is the Montessori preschool. I've had two kids go through the program already and I know that it would be good for him. Individualized phonics is very similar to the homework I have with him now. The classroom has structured time, which is good for him to learn, but it also has a lot of time where he can pursue his own interests.

Now if I can just keeping juggling the family's needs, the church's needs, my students' needs, and my needs, along with his speech therapy, play therapy, and (September, 2002) preschool, we'll all live happily ever after. One day at a time....

 

[s&k'smom]

2nd the motion with momjay and SueM. Like I said follow your gut and you can never have enough services. Get as much education as possible. I find it interesting there are no summer services. Your system sounds like my sisters in Oregon. What a wonderful feeling you must have had when he said BAA for sheep. My son was 3 before he said mama and if he had asked me for a car after that he would have gotten it. I cried all day. And of course told everyone. You really seem to be on the right track, I have been following this board and responses to your questions for the last few days and have gotten alot from it. It's nice to know you are really never alone. If you reach out the help is there.

As for balancing everything sometimes I wonder how we get through the day but you always do and it's funny how much you are able to accomplish. Make sure you take care of yourself. A little respite once in a while will help you keep things balanced. It does for me. Even if I just go to the store on my own. Thanks for sharing with all of us.