Hello. I'm new here...

iVillage Member
Registered: 03-15-2007
Hello. I'm new here...
11
Wed, 03-28-2007 - 3:35pm

Hello,

My name is Carmen and I am the mother of two children. My daughter, Jenna is 8 yrs old and my son, Trey is 3 1/2 yrs old. I am writing because Trey was recently diagnosed with PDD-NOS at the Child Study Center in Oklahoma City. I'm not sure where to begin, so I hope y'all can bear with me.

Anyway...since maybe around last year I started becoming a little concerned about Trey. Nothing major, just kinda bothering. He is extremely fixated on letters, numbers and puzzles but I just attributed it to all the Leap Frog crap we have around here. He can count to >100, can read 3-digit numbers, knows the alphabet forwards and backwards, and can read many two and three letter words. Now, those are great things but it also became apparent to me that he preferred to play alone with those things than with other kids and I started reading up about what might be wrong.

I brought it up to my doctor at his two year check up but he didn't see any cause for concern. At Trey's three year check up I brought it up again and he (reluctantly) agreed to send a referral for a developmental assessment at the Child Study Center that had a ridiculously long wait list for 3 year olds.

Long story short (too late), we have recently taken him to the Child Study Center this March for an intensive developmental evaluation and finally have a diagnosis of PDD-NOS. The panel of doctors confirmed that although Trey has very high intelligence and a large vocabulary, he is delayed in social skills and needs speech, occupational and behavioral therapy.

They said he is not classically autistic but believe he may be on the high end of the spectrum (maybe Asperger's) but it's too early to accurately diagnose because he is so young (3 1/2) and many of these verbal skills are still developing but they say his speech is very "contrived" and doesn't have a natural flow.

However, because Trey is intelligent, possesses many social skills and has great eye contact, he has an excellent prognosis that will help him to overcome any challenges he will face. As one of the doctor's said, let's get him the diagnosis so you can get therapies and then three years from now, you'll either be saying "those doctor's didn't know what they were talking about" or "boy, that therapy really worked"!

Anyway, we are beginning the process of getting these therapies for him, both through the school district and privately - but I'm having a lot of trouble finding additional places to get him speech and OT. I have found a lady that will come by to talk to me next week about behavior therapy I can do at home but I'm not sure what to ask, etc... I think I trust her because she came referred from a doctor that the family partner (at the Child Study Center) recommended.

I don't really know what I'm asking for, I guess just to introduce myself and join the community for support, ideas and resources. We are still numb but okay as we know that we are starting early and know that Trey has a lot of things going for him.

Thank you again, Carmen

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Avatar for betz67
iVillage Member
Registered: 03-26-2003
Wed, 03-28-2007 - 3:50pm

Welcome Carmen!

This is a wonderfully knowledgeable group of ladies who can answer you questions or point you in the right direction. We're all here needing support. It's a club nobody wants to join but we're willing to reach out and help if possible.

passing some chocolate chip cookies and your cyber drink of choice. good to have you!

Betsy

iVillage Member
Registered: 11-28-2006
Wed, 03-28-2007 - 4:48pm

Welcome Carmen! This is a great place, with some great people here that have so much knowledge your head spins lol. But in a good way.

Wow I'm so jealous that you got a great team of docs for your son. I only wish my last one for Chris had the same attitude about giving him a Dx lololol.

My names Lainie, were about to start the process for a 2nd opinion with Stanford next week for my almost 11 yr old. My 7 yr old will get checked out too, but his dx will probably be more of a Tourettes one as I see that stronger with him than the Autism... I guess well see.

Anyway, nice to meet you!

Lainie

iVillage Member
Registered: 12-22-2003
Wed, 03-28-2007 - 5:11pm

Welcome, welcome, welcome, Carmen!

How fabulous that you were able to have such a positive experience with the diagnostic team. It sounds like you've done everything right and you're getting interventions established nice and early. Good for you!

The numbness will start to subside...but I can't tell you when, as it's different for each of us. Our family has been navigating this ocean for 5+ years now, and there are days when I prefer numbness to reality, but darn it, that evil reality has to jump up and slap me in the face a few times!

You have found what I truly believe to be the most supportive, non-judgemental, amazing group of women in all of cyberspace.

Looking forward to getting to know you and your family even better~

Amy

Meez 3D avatar avatars games

iVillage Member
Registered: 06-25-2003
Wed, 03-28-2007 - 8:27pm

Carmen,


Welcome! Please pull up a comfy chair and make yourself at home.

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 09-09-2005
Wed, 03-28-2007 - 10:30pm

Welcome,

I kwym about not knowing what to ask. But if it's OT and speech help you're looking for outside of school I'd call up your insurance co and see what (a) they cover, and (b) the therapists they will cover in your local area. It could be a start. I use the website of our ins co, it's a good place to begin.

The other option is to pick this behavior therapists's brain and see whom she recommends; trust me she WILL know good people. The only issue thre will be if your insurance will cover it. As it is we are starting both my boys back in OT (after a long hiatus due to a big move) and the new insurance won't cover it, so thankfully the OT office is giving us the medicaid rate. Still high but better than nothing.

If you haven't already check out The Out of Synch Child to help with OT explanations (sensory, fine and gross motor stuff).

My oldest ds (7 soon) had a fabulous vocabulary and made great eye contact at so many evals that I wish I had the great team you found...well done on your part!!! I do hope you stick around, we're a great group.

Dee

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iVillage Member
Registered: 03-29-2007
Thu, 03-29-2007 - 10:59pm
Hey Carmen,
you are starting early, as you said, and that is the best thing that you can do for Trey! Early intervention has proven to be effective, and sounds like things are going well so far. It is great that Trey is so intelligent, and able to communicate so well, definitely some great strengths for him and your family, as well. Good luck with things, I'm sure they will go great :)
I am a behavioural science technology student studying applied behavioural analyis, wanting to specialize in autism. I am young, but I am fresh in school and have very creative ideas, if you ever need any advice, I often lurk the forum, feel free to ask any questions, this is a really supportive forum. Take care!
Alexandria
iVillage Member
Registered: 02-01-2007
Fri, 03-30-2007 - 8:04am

Hi Carmen,

I am mostly a lurker here and don't have as much knowledge as the regular posters, but I wanted to add my 2 cents, if that is okay. It sounds like you are doing a wonderful job with your son, making sure that he has everything he needs in place and you are a terrific mom!

I just wanted to comment on what the one doctor said to you, reposted below:

>>>>>As one of the doctor's said, let's get him the diagnosis so you can get therapies and then three years from now, you'll either be saying "those doctor's didn't know what they were talking about" or "boy, that therapy really worked"!<<<<<<

I have to be honest, this statement sounds like the doctor does not actually believe that your son is on the spectrum, and that he will either basically "outgrow" it with some therapies, or he will normalize because he was never on the spectrum to begin with. And honestly, if the doctor feels that in a few years time your son will be a typical child, my guess is the PDD-NOS dx is not accurate and is just being given to help you get "extra" therapies, because as everyone knows, autism is life-long, it does not go away. Yes, a person with autism can improve, but the person with autism will always have autism and will always struggle in areas because of the autism.

What really worries me for you and your son is that there is a good possibility, that down the line when you realize your son is not on the spectrum and doesn't "need" all these therapies anymore, you are going to have a hard time convincing the professionals of this. Example: if your son normalizes by Kindergarten (and given his description, that sounds likely), you may have a hard time getting him in a regular Kindergarten class, because although YOU may know that is where he belongs, the PDD-NOS that is stamped all over his reports and IEP's is going to tell the professionals a different story, and you will have a hard time convincing them otherwise. Believe me, the professionals are well aware that autism does not "go away".

I guess what I am saying is that sometimes those "just-in-case" dx's, those dx's to get services, sometimes come back to bite you in the a55. Your child is entitled to receive ANY AND ALL necessary therapies, even WITHOUT a dx. A long time ago, I did what you did, my son received therapies he would have gotten ANYWAY, and it took me a couple of years, a TON of money and a lot of frustration to have my son unlabled.

iVillage Member
Registered: 03-15-2007
Fri, 03-30-2007 - 11:45am
Hi,
This concerns me because my Mother and Mother-in-law (whom I love) have this EXACT same concern and were really opposed to me allowing them to label at the school district. They both don't feel like there is anything "wrong" with Trey. They say that yes, they see my concerns - they just aren't that concerned about it. They both say, "he's only three and he's just kinda nerdy".
However, the school here says that it's their goal to mainstream kids with Trey's issues and say it behooves them to be around normally sociable kids because that enables them to better socialize.
I still hope and pray that he is not on the spectrum and that three years from now he'll be functioning fine but hope we don't have the problems with the school that you're saying we might.
Can you give me more info on your son, his issues and where he is now???
Thanks in advance,
Carmen
iVillage Member
Registered: 12-22-2003
Fri, 03-30-2007 - 12:39pm

I think a couple of things need to be explained here...

First of all, what you are referring to as "labels" are actually educational classifications. In many school districts, children have to have an educational classification to receive any services and/or assistance. HOWEVER, those classifications can be removed, should the educational team (parents are part of this team) determine that the child no longer needs related services. Having said that, most spectrum parents do not want their children to "lose" their classifications because once they've been removed, they're almost impossible to get reinstated should a need arise down-the-road.

While the obvious gut response of a parent is to NOT want their child labeled (I understand this, we felt the same way at first), they are not bad things that will hinder your child's future should it be determined that he/she no longer needs services. The schools cannot, legally, prevent a child- who no longer needs services- from being in a mainstream classroom. They are are required to provide the child with the least restrictive educational environment. That's why you'll see so many of posting about pulling the "LRE" card on the school.

When our 9 y/o Aspie was 4 he was originally Dx'd with PDD-NOS and the psych. told us not to bother with therapy and to come back in a year and he may "remove" the Dx. We made the GIGANTIC mistake of NOT informing the school, and therefore, prevented our son from getting services that could have been incredibly beneficial to him. Three years later his diagnosis was Aspergers Syndrome. Since then he's gotten great services and is to the point where most people have no clue that there's anything "different" about him.

Something else to remember, no school district wants to "keep" kids in special ed. environments if that child doesn't need services. Why? Because special ed. services are really expensive! School districts want as many kids as possible in mainstream classrooms, without supports. It's the cheapest means of educating!

With regards to what the doctor said about "those doctor's didn't know what they were talking about" or "boy, that therapy really worked"! he wasn't trying to place doubt on the diagnosis. He was providing hope! He wants you to understand that, with the correct interventions, your child may not need services forever. THIS IS A GOOD THING! It means the child's prognosis is good!

Yes, autism is lifelong and no it does not go away, but with proper treatment/interventions the symptoms can subside/go away/reduce. An educational classification of autism (or anything else for that matter) is not a lifelong label that will hinder every aspect of their future. I have to disagree with the statement that people "will always struggle with autism related issues". If this is true, then what hope is there for our children, and why do we even bother fighting for services???

There are many, many adults on the spectrum who do not "struggle". My husband is one of them. Yes, he's an Aspie...but he's also well educated, has a wonderful career with a limitless future, and he's an incredible father and husband. He often wishes that he'd been Dx when he was younger because had he gotten the supports he so desperately needed, he wouldn't have been forced to struggle so much in the early years of his life. Now that he better understands how is brain works, he's made incredible strides in the social areas that used to be his achilles heal.

Amy

Meez 3D avatar avatars games

iVillage Member
Registered: 10-03-2004
Fri, 03-30-2007 - 4:45pm

I have to agree with Amy here. I know there are stories about school districts who hinder changing a classification that is found to be not appropriate, but this is so not the norm (as per Amy's reasons and others) and the opposite is usually more the problem... ie. school districts refusing to see the problems and underserving the children. And there are serious ramifications when children who have dis-abilities or learning differences are underserved.

There are times we need to take school districts to court, spend lots of money fighting them, but there is NO predicting THAT situation until you end up in that scenario. (could be any second for us right now here in NYC, sigh) And at least, if that happens to you, here at iVillage the Special Education Plan board is excellent for advice and how to proceed. And there are good advocates and lawyers, if it comes to that.

Good luck with everything. A great idea when you are just starting to learn all this is to get in touch with some localmoms of kids who have gotten IEPs, services through your school district and find out the lay of the land, how has working with the schools been for them. PLus, the best moms to talk to in the world for information are moms who have gone before ...

This is rough terrain. You will learn so much about your child and as that is your first and only real priority, you will figure the rest out as you go based on his actual needs, strengths and areas of struggle. Which will make themselves known to you, and will change as your child grows, BTW. Like any kids.

Stay in touch, let us know how things are going. And ask questions, lots of BTDT moms here.

Sara
ilovemalcolm

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