WAY OT...anyone have experience with PDD?

[hannahsmomma]

My dd (6) is going through all kinds of testing and they think she has some type of PDD(Pervasive developmental disorder) All I can find is text book stuff on it and I am searching for some real life help. Would appreciate hearing from anyone who is dealing with this. TIA :goodvibes

[meeskamouska]

I would check out the DISabilities board....they can probably help ya....good luck with a proper diagnosis

[hannahsmomma]

Thanks for the suggestion, you would think after being here for almost 3 years I would know where to post things. I posted the same post on the disabilities board. I guess I am having a hard time grasping this as a diability.

[DianeDennis]

Hi!

When you get a chance visit wrongplanet.com

(whoops my mistake I'm sorry, it's wrongplanet.net [.net NOT .com]) -

It's a discussion forum dedicated to Asperger's Syndrome, PDD-NOS, Autism, etc.

Best of luck!
Diane Dennis

[hannahsmomma]

I tried the website, but it did not work. It brought me to one of those pages that just lists a bunch of websites.

[hannahsmomma]

ok I found it, it was wrongplanet.net thanks so much for the info

[DisneyMomx7]

One of my ds's has Asperger's syndrome. He is now almost 24. Its been somewhat of a struggle but he graduated from college last year. He is probably one of the nicest people you could ever meet. Good luck.

[hannahsmomma]

Thanks for the encouragement. One doctor actually suggested Aspergers, we really will not know anything until she can be fully evaluated. Were just trying to go to her eligibility meeting next week with something so we can help her at school, and of course we can't get her in with the therapist till the week after. I am glad to hear your son is doing so well.

[Mouse House Mama]

One of my best friend's son was originally diagnosed with PDD. He has since been diagnosed with Autism. He just turned 4. PDD falls under the umbrella of autism but does not neccesarily mean that your child will be completely autistic. It is a diagnosis used when a child has a certain percentage of delays in certain areas (speech, motor skills etc.) There are different levels and each child has different needs. It has been my experience in going through this with my friend that it takes a bit of time to diagnose Autism. I would look to see of you have a center by you that does independent testing that is not only done by your school or county. My girlfriend after over a year of intense therapy for her son had him re-evaluated at a highly respected center in our area that specializes in developmental delays and that is when they were able to diagnose her son as Autistic. I will try to find some websites for you and I will ask her exactly where to find the best information. If you have any questions please feel free to ask. I am by no means an authority but I have been able to learn quite alot with my girlfriend.

[billwendy]

Hi -

I am an occupational therapist at a children's hospital. in my experience (16 years) i would suggest seeing a special developmental pediatrician - they are so well versed in child development as a whole which is so beneficial. also, get your child evaluated by occupational and speech therapists who have experience with children with developmental delays. what are some of the things that make you feel that maybe she does have PDD? I agree with the person who said to get an independant evaluation besides the school district evaluation.

pixie dust, wendy:tinker:

[nicoleakr]

My dd (6) is going through all kinds of testing and they think she has some type of PDD(Pervasive developmental disorder) All I can find is text book stuff on it and I am searching for some real life help. Would appreciate hearing from anyone who is dealing with this. TIA :goodvibes

:grouphug: My daughter has PDD. It's a form of austim. The good news is that it is on the mildest tip of the spectrum( at least for my daughter)Although it can be difficult to deal with it's not the end of the world. One thing with my daughter is everything is extremly literal. She doesn't understand the ins and outs of language. She has a hard time socially but that is starting to get much better. Just keep in mind that you are her voice and you do have the final say. Good luck

[belle&beast]

Just wanted to send some pixie dust your way.pixiedust: I am a preschool speech pathologist and have previously worked in early intervention with infants and toddlers. I have tons if success stories I could tell you of children with all different forms of autism. I agree with the PP who said to find a developmental pediatrician, they are very beneficial to families dealing with developmental delays. I wish you the best and if you have any specific questions, feel free to send me a PM.:)

[camouseketeer]

That means she has a pervasive developmental disorder that is not otherwise specified.

I'll break that down.

PDD is an umbrella label for all autistic spectrum disorders. So if your child is being tested for PDD, someone believes your DD has behaviors/characteristics that are on the spectrum.

Austism is a PDD. It is a very clearly defined disorder, and to be autistic, you must have very specific behaviors/characteristics. My DD has some autistic behaviors, but not enough to label her as austistic.

Aspergers is a spectrum disorder and therefore a PDD. Aspergers kids also have special characteristics. My DD did not have Aspergers behaviors.

Therefore we were left with a PDD-Not Otherwise Specified (NOS) diagnosis. She is "on the spectrum" but does not have autism. She was diagnosed by a state psychologist.

My DD's weaknesses are in social interactions. She does not read social cues very well. She has trouble initiating and maintaining conversations with peers. She has trouble with eye contact. She would rather play alone. To the untrained eye, however, she looks perfectly "normal." Most of my friends were shocked at the diagnosis, but when I explained it, they said, "oh yes, I've seen that with her."

My DD is very high functioning and will attend a normal kindergarten this year.
She has an IEP (individual education plan) at her preschool and goes to a social skills class 3 days a week. She has made great progress just in the past six months since her diagnosis.

I wish you and your DD luck in your journey. Diagnosis is a long process, but it's a beneficial one because once your find the problems, you can start addressing them!:grouphug:

[Kuffam]

Thanks for the suggestion, you would think after being here for almost 3 years I would know where to post things. I posted the same post on the disabilities board. I guess I am having a hard time grasping this as a diability.

Hey the important thing is you started to ask for help. DS has PDD and it is a hard lifestyle. He's very hyperactive and has speech delay's. I agree talk with your child's doctor about getting an independent evaluation. They'll also be able to steer you towards some helpful organization outside of the school district.

[Mouse House Mama]

That means she has a pervasive developmental disorder that is not otherwise specified.

I'll break that down.

PDD is an umbrella label for all autistic spectrum disorders. So if your child is being tested for PDD, someone believes your DD has behaviors/characteristics that are on the spectrum.

Austism is a PDD. It is a very clearly defined disorder, and to be autistic, you must have very specific behaviors/characteristics. My DD has some autistic behaviors, but not enough to label her as austistic.

Aspergers is a spectrum disorder and therefore a PDD. Aspergers kids also have special characteristics. My DD did not have Aspergers behaviors.

Therefore we were left with a PDD-Not Otherwise Specified (NOS) diagnosis. She is "on the spectrum" but does not have autism. She was diagnosed by a state psychologist.

My DD's weaknesses are in social interactions. She does not read social cues very well. She has trouble initiating and maintaining conversations with peers. She has trouble with eye contact. She would rather play alone. To the untrained eye, however, she looks perfectly "normal." Most of my friends were shocked at the diagnosis, but when I explained it, they said, "oh yes, I've seen that with her."

My DD is very high functioning and will attend a normal kindergarten this year.
She has an IEP (individual education plan) at her preschool and goes to a social skills class 3 days a week. She has made great progress just in the past six months since her diagnosis.

I wish you and your DD luck in your journey. Diagnosis is a long process, but it's a beneficial one because once your find the problems, you can start addressing them!:grouphug:

This is a great explanation. I couldn't have phrased it better. I am glad your DD is making great progress!!!princess:

[mom2taylorandemily]

Thanks for the encouragement. One doctor actually suggested Aspergers, we really will not know anything until she can be fully evaluated. Were just trying to go to her eligibility meeting next week with something so we can help her at school, and of course we can't get her in with the therapist till the week after. I am glad to hear your son is doing so well.

Have your Primary Pediatrician recommend a developmentalist / behaviorist at CHKD. My DD has epilepsy and is seen by Dr. Toor at CHKD, there is a developmentalist in their office, his name is Dr. Aiello. Try them, if you want PM me and I'll try to get you their phone #.

[hannahsmomma]

camouseketeer-
Hannah was actually given that same PDD NOS diagnosis, and has some of the same things as your dd. We just always thought she was extremly shy. Then when she did start to make friends we realized she just did not know how to communicate with them. Of course I have spent every waking hour researching this for the last month. So I know all the book stuff, I just wanted to hear the real life stuff, the "OK now what do we do" kind of stuff.

I want to thank everyone for the tips. We are looking into some developmental pediatricians. We are trying out different therapist as well. And we will be taking a much needed trip to DW in the spring!!!!!!!

mom2taylorandemily-
I saw online that doctor at CHKD and was thnking of calling the office. What a small world after all ;)

[MickeyHereWeCome!]

I didn't take the time to read all of your replies. My oldest (9) has Asperger's Syndrome and ADHD. Life has been full of challenges, but the rewards along the way have made everything worth while:-).

We began to notice differences when he was around 18 months. Everyone kept telling me I was just being a paranoid, first time mom, but having been a teacher, I just knew something was going on. When ds entered preschool at age 3, his teachers picked up on it, too. It was almost a relief to have someone else validate my concerns. We saw a developmental pediatrician, who gave him the PDD diagnosis. I was in your shoes. I remember feeling so overwhelmed, and confused. We used our local Child Find service (through the county), and had him qualified to enter a special education preschool. During that year, he was given the Asperger's diagnosis, at age 5. It was amazing how fast things started rolling as soon as we were given that diagnosis.

What I've learned is that the PDD span is huge. You can be diagnosed with PDD for having a minor characteristic.

My son is somewhere in the middle of the spectrum. Although he is diagnosed with Asperger's, he is extremely high functioning. I think one of the most difficult things is that he doesn't look any different, and therefore, people tend to judge him (and me) on his behaviors that may not be appropriate.

Socially, he really doesn't understand many things. He's the oldest of my four kids, so we have our typical sibling problems, but they are always taken a step too far with ds. He loves having friends over, but can't just play with them. Everything turns into something physical (constant chasing or "attacking" games). He wants to have friends, but doesn't know how. He does very well in school. He has an assistant half time, and she has been absolutely wonderful. I just pray that he continues to qualify for one.

We certainly go through our ups and downs. There are weeks when I question why on earth I was chosen to parent this child. But then we'll find ourselves discovering something else extremely unique about ds, and it all comes together. He can be the sweetest child, but also the most frustrating.

I'd love to answer any specific questions that may come up. Just PM me.

[camouseketeer]

hannahsmomma-
I didn't see your response until now.

I'm glad you have a diagnosis.

In terms of "what do you do know?" you need to find agencies that will help your DD. Your school district should be the first place to start looking for help.

Is your DD in any social skills classes? My DD is in one run by a Special Ed teacher in her district and she is in two classes run by a private clinic. The fees for the private clinic are paid for by the state since she qualified for state help. Here in California, austistic kids or kids on the spectrum can qualify for assistance through a resource called ALTA. It's the same resource that helps children with mental retardation, CP, Downs, etc. You might look into that for your state.

My DD has specific goals in each of these social skills classes. Her goals are ones like:
Will maintain eye contact
Will engage in verbal turn taking at least 3 times
Will join others in a group activity

All of these goals are quantitative in the sense that DD needs to do these things, for example, at least 3 out of 5 times observed with 2 or less prompts. We have bench marks for these goals and we meet with the teachers every three month (or more) to discuss progress.

There are also many autism message boards. Just reading them can give you a sense of what other people are doing to find help for their children.

I wish you the best of luck for you and your DD!

[Taratink]

I am going through a similar situation, We are now trying to get help through the school. We just hired an advocate. Good luck!
Tara

[Denine]

My next door neighbor's son has PDD. He is 4 and receives tutoring at home about 20 hours a week.
She said it is like living with an 18 month old all the time.

They hope to help him improve with the tutoring. She sent him to pre-school last year, but she said there was no improvement. She sees it with the tutors.

[belle&beast]

I am going through a similar situation, We are now trying to get help through the school. We just hired an advocate. Good luck!
Tara

I think this is a great idea for all parents! :thumbsup2 I work in the schools and I love when we have the advocates present at the conferences because they really help everyone involved in the IEP process.

[Taratink]

Belle&beast
That is great to hear. I was afraid that bringing an advocate with us would make us look like we wanted a fight. The laws and rules are really overwhelming. I am stressed out to the max and I need an expert to help out.
Tara

[Mouse House Mama]

My next door neighbor's son has PDD. He is 4 and receives tutoring at home about 20 hours a week.
She said it is like living with an 18 month old all the time.

They hope to help him improve with the tutoring. She sent him to pre-school last year, but she said there was no improvement. She sees it with the tutors.


If she sent him to a regular pre-school then I would have to agree that tutoring (therapy) will of course show more improvement. At age 3 where I live the children are re-evaluated and then they decide if the child needs to go to a specialized school to receive their therapy or continue at home. My friend and her therapy team decided at that time that school was a better choice for her son. He has improved immensely and now also recieves therapy at home as well as a full day of school. If her son is 4 and she states it is like having an 18 month old she needs to get him re-evaluated and I would say by an outside agency so she can get him the help he needs. Sometimes you have to fight with the school district so they provide what the child needs when he/she is school age. They may just try to put the child in special ed but that teacher may not be trained in the type of therapy (or leaning system) that the particular child needs. They tend to lump all developmental delays together and that isn't always for the best. I hope it all works out for her. It can be very frustrating when you are trying to get the best for your child.princess:

[hannahsmomma]

I just wanted to send out an update to everyone who offered support. We had dd's eligibility meeting this morning and it went really well. We are blessed to be in a great school system that has a classroom just for kids with mild PDDs. So she will be with other kids who are like her and not with kids who are on the other end of the spectrum. We will also be rewriting her speech plan to include help with communication. Yeah!! I am starting to feel so much better about things...thanks again for everyone's help.

[Taratink]

You are soooo lucky. There is no place for PDD kids at our school. There is no good place to put my son. They really don't know how to deal with this condition. We live in the suburbs of Boston and we should be more advanced than this. It is so dissapointing. I am thrilled for you and wish you the best.;) :thumbsup2
Tara

[MEM]

Belle&beast
That is great to hear. I was afraid that bringing an advocate with us would make us look like we wanted a fight. The laws and rules are really overwhelming. I am stressed out to the max and I need an expert to help out.
Tara

An advocate is a great idea! Best money we ever spent. Some school systems, including ours, depend on you not knowing your rights. We were told "this is what your son is entitled to and it is not negotiable." We hired an advocate who pointed out to the director of special ed all of the laws he was breaking.

[belle&beast]

An advocate is a great idea! Best money we ever spent. Some school systems, including ours, depend on you not knowing your rights. We were told "this is what your son is entitled to and it is not negotiable." We hired an advocate who pointed out to the director of special ed all of the laws he was breaking.

An IEP meeting should be full of negotiations- it is a team developing what is best for the child. I'm glad you have an advocate. My experience with advocates is that they help both sides to see the other's point of view and everyone leaves the conference feeling like they have been heard. I think my school system must be unique because we really want the parents' input on the IEP and welcome ideas and suggestions. We truly view an IEP as a work in progress and use the conference to make sure all members of the team are in agreement.

[ILuvTinkerbell1974]

Hannahsmomma.....I just wanted to let you know that I think the school system in Chesapeake is terrific!! I'm glad that they are encouraging you and Hannah (and Ed) in getting her the help in school she needs. In fact, I just had a parent-teacher conference with my youngest daughters teacher tonight and we talked about getting her tested for a learning disability as well. It's great to know that the teachers here care so much about our children! I wish you all the best!!

(By the way, I know Ed as we do business together. I work for Advance Title next door to his office. He and I recently had a discussion about how funny it is that you guys and me and my daughters are going to Disney at the same time! Even though we are staying off-site, hopefully we will see you guys there!)

[maxtomsmom]

You are soooo lucky. There is no place for PDD kids at our school. There is no good place to put my son. They really don't know how to deal with this condition. We live in the suburbs of Boston and we should be more advanced than this. It is so dissapointing. I am thrilled for you and wish you the best.;) :thumbsup2
Tara

I'm sure you know this, but according to the IDEA law and public law 92 (I believe it's been a while since I have taken education law) your child is entitled to a free and appropriate education. If the district can not provide this for whatever reason, they must find an appropriate alternative. This is a federal not a state law and supersedes all state laws. You can fight for your child. If you find a school for your child and felt it was the best place for him, you can fight them on it. Many people do and most do win. I don't know if it will cost for a lawyer and if the school hasn't tried all they can. They need to prove that they have. I know all this as I am a special education teacher and have advocated for several people. Most people don't know their rights and usually educational lawyers could help in the process. One friend had a lawyer write to the district and that was all that was needed to put their severely ADD child who also happen to be gifted in a specialized school with other bright active kids. The district settled rather than go to court. It is always worth looking into. Good luck.

[maxtomsmom]

To the OP- Hang in there. It sounds like you're doing everything you can. :thumbsup2

[hannahsmomma]

We are really lucky here...the bad thing with PDD is that the kids are labeled special ed as other health impairment and in other school systems are put in a special ed class which include kids at the severe end of the spectrum. And there is not really a whole lot you can do about that, becasue the kids are technically being serviced. I hope in time that the rest of the country will catch up and start treating our children as individuals with individual needs.

[crjack]

You are soooo lucky. There is no place for PDD kids at our school. There is no good place to put my son. They really don't know how to deal with this condition. We live in the suburbs of Boston and we should be more advanced than this. It is so dissapointing. I am thrilled for you and wish you the best.;) :thumbsup2
Tara

That's too bad that your school doesnt currently offer a program. I live in a Boston suburb as well (so.shore) and our school does have one. My son made huge strides and amazing improvements in elementary school, especially in the early years.

To the OP, best of luck. My son is now 12 and there really wasn't as much known about PDD-NOS when he was young. The knowledge and treatment options are so much better now in my opinion. It's still work and you always need to be your childs advocate but with early intervention at a young age I think you will be surprised by the progress you will see.