New: DS w/PDD-NOS - ??s and Intro

iVillage Member
Registered: 02-17-2002
New: DS w/PDD-NOS - ??s and Intro
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Fri, 09-15-2006 - 3:41pm

Hi there. I am soooooo glad to have found this board. My 3.5yo DS was diagnosed with PDD-NOS this week and I have so many questions, emotions, fears, etc. I'll start with my questions, as I'm afraid my intro may get long and nobody will read far enough to get to the questions.

- how old was your child when diagnosed?
- for older kids - how is their progress? Are they mainstreamed?
- Is anyone using fish oil supplements? Are they helping with behavior and/or attention span at all?
- Are you seeing a behavioral specialist? Is that helping?
- what are the biggest behavior problems you've had and what has been the most effective way to deal with it?
- does your child have any sensory issues? Any experience with toe-walking?
- What kinds of things should we expect? Anything that the literature doesn't mention?
- Do you have any suggestions for websites, books, etc. for more info about it?
- How have other people (friends, other kids) reacted?

Sorry - I know it's a lot of questions. Now for some background.

We started having some concerns about DS when he was about 7 months old. He had crossed eyes so we took him to an opthalmologist. She noticed that his optic nerves were pale and ordered an MRI to rule out brain tumors, etc. The MRI showed severly enlarged ventricles in his brain. Since then he's been seeing a neurologist and neurosurgeon a few times a year and has had multiple CT scans, which continue to show his vents to be stable or possibly decreasing in size. At 18 months we joined Parents and Teachers. Right from the start the parent educator told me to get him evaluated by our county toddler services. I resisted because all of his specialists told me not to worry and that he only showed minor delays and seemed to be catching up. At 2.5 I finally called toddler services. They evaulated him and said he qualified for OT and ST but only barely. He did that until 3 and then we transitioned him to the school district. They felt like he warranted going 3 mornings a week and required summer school. At his 3 year check with our ped., I asked her about the possibility of autism and she said it was a possibility but it was confusing because he had some of the characteristics but not some other key ones. At our year-end meeting with his preschool teachers, they voiced concerns about him having a PDD. So our ped referred us a developmental ped., who we just finally got in to see this week.

He said on the CARS test that he was i the upper end of non-autistic range. On the DSM-IV test, he approached 1-2 criteria in each category and meets 1 criteria in 2 categories. So he said he's not autistic but has PDD-NOS. He said he's seen a lot of kids with enlarged ventricles show autistic characteristics. He said we're fortunate because he's very bright and we've gotten early intervention and we live in one of the best school districts in our area with an awesome preschool program. He said he has immature social interactions, weak theory of mind, poor play skills, excessive inattention, some sensory aversions, poor eye contact.

In lay terms, what we've seen is that he love adults - he climbs on them, hugs all over them, loves to play with hair, will talk your ears off. He has no stranger fear at all. But he doesn't play with other kids or relate to them. He just hangs back and watches other kids. He's obsessed with cars. He is constantly carrying one around and likes to spin the wheels. He can identify every make and model of car. He likes to line them up. He has issues with pronouns (says you when he says me, etc.), refers to himself in the third person a lot. His teachers and doctors say his vocabulary is huge but he often says things without knowing what he's saying. He repeats things and doesn't necessarily understand them. He has a very short attention span. He has some behavior issues - throws tantrums if we don't let him do what he wants when he wants. Likes to throw things just for fun and doesn't understand or seem to care if he breaks something or hurts someone. Lately he's become obsessed with doors and drawers being shut.

It's all a lot to process. We have a lot of concerns about his future and what we can do to help him succeed as much as possible. So I'd love to hear any insights, tips, experiences that anyone would like to share with me!!

Trisha

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iVillage Member
Registered: 03-20-2007
Tue, 03-20-2007 - 10:09am

My child is almost 7 and is nearing the end of 1st grade. Every person who is diagnosed with this disorder is a little different from the next, yet very similar. I have researched and fold help for my own feelings as well as found things to help my child. I too wondered if I should home school my child but one thing you have to be honest with yourself as well as your child is if you were to do that you would be depriving him of the skills he needs to learn. I am not able to provide him with the skills he needs to interact with other children, does my child get picked on.... Yes, unfortunately he does but the teachers are there to help him by not letting other children do this as well as how to assist my child in more appropriate behaviors to stop the behaviors of other children.

These children are simply misunderstood; the world as it is does not make sense to them. There has been a new study out that has proven that children with Autism have a DNA link that is mutated during development. That is a huge step in the discovery process of ASD! Often time’s people think these disorders are merely something they lack from home "discipline". This is just NOT TRUE, do not allow the world to point the finger at you! You are there to help and protect but isolating your children will not protect but in tern will harm them because they are not facing the world in which they must survive in.

There are services out there every parent of an ASD child should be aware of and look into:

PCA Services great help to the family as well as to the children!

Behaviorist, this is a great way to understand what you can do as well as any school to assist your child by changing your behaviors or a teacher’s behavior to get a child to understand their expectations better. They can stop the behaviors your child is doing such as self inflicted harm, noises, hiding under tables, etc. They understand why children do what they do so they can predict the behaviors to get them to stop. Do NOT be afraid of these services they DO help!!!

Psychiatrist- medication helps so much; often times these behaviors exist because of chemicals they are missing. Medication puts back chemicals these little bodies are not producing!

Therapists- OT can help with fine motor as well as gross motor skills; these skills are just those...skills that can be developed with more training!

SKILS training- coping and self help strategies

Community sports/clubs- assist in socializing!

Just thought perhaps I could help....

You and your child ARE NOT alone!

iVillage Member
Registered: 03-19-2007
Tue, 03-20-2007 - 3:55pm

Sara, thanks so much for taking the time to write your thoughts. We have just really started the process at school. He was mostly fine during the first semester, but for some reason has resorted to these horrifying self-harming fits whenever he gets frustrated or angry or disappointed. So the school psychologist saw him today, and we are waiting to hear her findings. I had him in OT and ST last spring and summer, but they didn't have room after school, so I just opted not to put him in. Big mistake, because now I have to have him reevaluated, which takes time. So, in the meantime, his teacher is absolutely wonderful with him, but there is only so much she can do. I just have to wait. But your comments were very helpful. I have to see how affected they feel he is, and then challenge them if I need to. Right now, I really doubt his ability to make it through first grade if things don't improve. I'd rather homeschool than put him in a special needs school if I can. I still don't know the extent of his disability. I thought he just had sensory issues, but the private psych diagnosed him with ppd-nos. I guess I should ask him which behaviors my son exhibits that make that his dx. I don't see him as being that affected except at school, but maybe I'm just used to him. I've heard that there are so many levels of ppd-nos, so maybe we're on the milder side. Do you know anything to shed light on this?

Thanks again for listening and replying. You made me feel like I had a friend who understands!

Heather
motheroffivekids

iVillage Member
Registered: 10-03-2004
Tue, 03-20-2007 - 5:23pm

Hi Heather,

And I am very glad if I can help. Malcolm is considered very mild PDD-NOS. He can seem very like other kids, carry on conversations (sometimes has weird moments, though), play games, crack jokes, fit in with groups of kids... until that moment when he can't. He is becoming very good at talking about his emotions and using coping strategies. But he wouldn't have been given the dx of pdd-nos unless the spectrum part of him causes him problems, which it definitely does. And when it will is unpredictable.

Home is a safe place, and we seldom have problems with him here. He gets the rules and abides by them, we know how to meet his sensory needs, he eats well, sleeps well, his many friends come here and this is a good place for him to socialize because we have control. I think, at home, almost noone would think anything unusual of him.

When he was younger (5, 6, 7), being in public was easier for him, expectations for younger kids by the general unwashed public aren't as stringent --- and now that he wants to be more independent and rely on us less, we see more problems, he gets confused, misses social cues. He is also learning more and more about how to handle himself in public and with other people. As our public school system is completely unable to handle children like him, we are not mainstreaming him, although I hope some day we will find a way for that to happen. We do have him with other kids often, and in groups, just not inpublic school.

I don't hold that a large classroom of kids is the best and only way for our kids to learn how to manage and socialize. In some cases, they learn how to make it through a day that way, but not much else. If we had been lucky enough to live somewhere else and landed good teachers, yes, maybe that would have worked for Malcolm, maybe not, we'll never know.

Go with your gut. If your kid is suffering and the school is not able to help, I would not leave him there to get in worse and worse shape... Perhaps he can come home for awhile while you and the school investigate more options, maybe experts need to be brought in, medication needs to be considered, OT for sensory needs to be worked with more in classroom, many options.

Many (((((HUGS))))),

Sara

iVillage Member
Registered: 03-19-2007
Mon, 03-26-2007 - 7:47am

Hey, Sara! Thanks again for all your thoughts. Peter is going through a really great phase right now. He is able to control himself better and use words instead of throw fits. I never know what causes him to be able to get better or to lapse back into his fit-throwing, but I'll take this good phase! He has an OT eval this week, then hopefully we'll be able to get him into OT for as long as possible.

Another question: Has Malcolm ever had insomnia? Peter has been waking in the middle of the night saying he can't sleep and then waking at 5 or so in the morning saying the same thing. I've had insomnia before, and it really seems like that's what it is, but how do I fix it in a 5 year old?

Thanks for listening! Talk to you soon.

Heather
motheroffivekids

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