Diagnosed with PDD-NOS today.
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| Thu, 08-03-2006 - 11:51pm |
Hello, I`m new here.
My son is 26 months, and the doctors gave us a "non-official"
diagnosis of PDD-NOS today. Basically, all three specialists we have
seen agree on it but they decline to put it in writing until my son is 3.
I`m having a little bit of trouble accepting this. It`s not that I`m
in denial, but I don`t think it is really what is wrong. The only
blatant delay I can see is speech - he has none at this point. Other
than that, his behavior seems mostly comparable to other children of
his age. (Other than things that relate to speech - ie requiring language)
What exactly do they look at to diagnose PDD-NOS? I am concerned that
they aren`t looking at the whole picture.
Obviously *SOMETHING* is wrong, and I am fully aware of that, but I`m
having a lot of trouble seeing the "typical signs of Autism/PDD" that
the specialists apparently see. We were expecting a diagnosis of some
sort as my son has signifigant brain damage, but this isn`t what we
were expecting at all.
Thanks in advance -
Tamyu
(Crossposted to another group, not sure where I`ll fit in yet.)

Well it can be tough with small kids to really know what is typical and what isn't. The nice thing is that a PDD diagnosis may open up therapies that would be helpful regardless.
Welcome here though I am sorry you had to come. We are a nice group of gals and there is lots of info here as well.
Renee
Hi and welcome. Your son is so very young and when they are young, the symptoms can be much less obvious. The dx is made by observation of how a child responds and observes his environment and interacts with people, of which speech is only a small part, and only a very trained, truly understanding specialist is likely to catch a "borderline" spectrum child under 2 years of age and even way older! I have a 9 year old with PDD-NOS and still many people cannot tell he is on the spectrum. But if your son does have PDD-NOS and the doctors have caught it this young, in actuality you are very very lucky, although of course it will be hard to think so right now. Most kids are not caught til much later, even into teenaged years, and prescious time is wasted when they really do need the help from very young. My ds did not start having tantrums and other more spectrum behavior until he was older than your ds, and as he always had eye contact and liked other kids, he never once "looked" autistic.
We didn't get the dx until our ds was almost 7. We were told language delay, sensory integration dysfunction when he was 3, receptive language disorder and anxiety disorder at 5 and then later got the PDD-NOS. Which was a shock to us even then. Those other dx'es were not wrong, but a piece of the big picture.
BUT we had started many, many therapies when ds was 3, speech, OT, counselling, play therapy, special needs preschool -- not knowing the spectrum dx, and we got him much support and services. He has really benefited from this and grown constantly in abilities, emotional health and social skills. But honestly, I do now see the PDD-NOS, it just is in no way really manifesting in ways that the untrained eye could recognize as autism.
Language is one of the first noticeable symptoms. Our son had language and used it appropriately, but it was memorized phrases, the very same every time, and he got echolalic, repeating parts of sentences we said to him. He is very caught up on the language now, but still struggles with receptive language sometimes, you just can't always tell because he is so smart and fakes it...
Anyways, welcome. This is a great support place. Let us know how things are going. As Renee said, starting treatments will help him right away and you will learn the ins and outs of helping your ds grow and learn, ie. parenting! The dx isn't as important as the actual strengths and weaknesses of the child you are raising and what you can do to assist him. No 2 children on the spectrum are alike, as no children are in life.
The pain and fear when first finding out about any dx will fall to the wayside as you begin to understand him more and how to help. Stay in touch. We are here to help, if we can.
yours,
Sara
ilovemalcolm
Tamyu,
Welcome!
You fit in wherever you feel most comfortable.
visit my blog at www.onesickmother.com
Tamyu,
I know how you are feeling. Our son was diagnosed as PDD at 15 months by a developmental pediatrician. He makes eye contact, likes to play by himself and babbled sometimes but didn't have words. We were distraught but called early intervention to get him started on services, they actually questioned the diagnosis and only started him on speech therapy. At 18 months we had a consult with a neurologist and he made the same diagnosis, we called ealry intervention and asked for ABA therapy, at that time they confirmed that after working with him they could see some autistic characeteristics, very slight. Based on everyone who works him there is a good chance he will be able to be mainstreamed by the time he goes to 1st grade. With us we noticed differences in him since he has a twin the was developing at a "normal" pace. He is very loving but generally doesn't mind playing by himself and now at 19 months still hasn't said any words.
I would highly recommend seeing a neurologist, our son is going for a BEAM study (type of EEG) in sept to make sure that the speech delay is not due to seizures (we have an older son with a seizure disorder). It is always best to exhaust all avenues. However get the diagnosis in writing and see what services your district offers. The earlier you get therpay the more of a difference it will make. Ben started right after 15 months and we have noticed a diffence in his non-verbal communication already.
Martha
Thank you everyone...
I`ll try to elaborate a bit more now that I`m feeling a little bit better.
I was informed that my son`s DQ was 78 for gross motor skills, 61 for cognitive skills, and 31 for social skills (speech). But I don`t know where these numbers are coming from. I have yet to see a doctor really evaluate my son - sure, they sat him down and wanted him to stack blocks (While obviously hiding a big bucket of cooler toys behind their back), and had him put shape puzzles together (no problem there), then asked ME a ton of questions.
This applies to the three different "specialists" we have seen.
As he has an actual physical problem to begin with, we have been receiving services (if you can call them that) since my son was 9 months old - both as a high risk child at the hospital of his birth, and at a disability center. The first official evaluation we had when my son was 18 months, with our follow up at the regular hospital. The doctor was experienced - our hospital has a very in depth follow up program in place for high risk kids. She rated him on track for everything but expressive speech. Two weeks later, no change in my son at all, and he was evaluated as having a DQ of below 65 in all areas. Of course, no one TOLD me at the time. They just wanted him to come back for follow up in 3 months. He was evaluated again less than 3 months later at both places, different doctors this time. Basically the same deal - everything but speech pretty much on track at the hospital, but DQ in the 60s at the center. (Note - I am going by my son`s adjusted age. He is 22 months adjusted now, but the center insists on evaluating him according to his actual age of 26 months... Apparently they stop using adjusted ages after 2 actual.) That evaluation was about 2 months ago.
All anyone says to me is that his speech is behind, and we should be looking into ST for him. Great! I can finally get the ST I know he needs lined up. So we get that set, and I take him in 3 weeks ago. We go through the base evaluation - no specialist, just talking to me. The doctor confirms the speech delay. We schedule another evaluation with the speech therapist a week later. I go in last week, and she does the pretty pathetic evaluation. Of course my son isn`t going to sit still in the chair stacking little grey blocks when she has a HUGE basket of toys right there next to her. She gave him a little box of cars to play with - they were lined up perfectly in the box. He played with them, and then when we cleaned up he put them back in, the same way they were at first. He doesn`t line things up at home, but he does try to put things back into their containers in the "right" way. Of course, she marked it as a huge red flag... My telling her that he REALLY doesn`t do that at home was marked as "blatant denial".
After that little bit, she goes on to ask me ONLY about myself and my past, while totally ignoring my son. It`s hard not to answer the questions, even when they`re private... I didn`t have a perfect mother, she gave me to my grandparents to raise. But I had a wonderful and happy childhood with them.
Anyway, the evalution ends and she tells me that they`ll look at it and decide how much ST he`ll be receiving. We make another appointment - yesterday`s.
Instead of any ST talk, we`re greeted by a team of specialists. The speech therapist, a cerebral palsy specialist, and a growth specialist. (Why, I have no clue.)
They don`t even look at my son, but instead ask me a crapload of questions about MY past, and MY feelings, and MY relationship with my husband (which is great, by the way), etc. Then they glance at my son, rolling cars down a little ramp and catching them at the bottom. "He doesn`t seem to be talking yet." Umm, yeah, you just figured that out? And then they go on, pulling out the past evaluations, from way back BEFORE I even knew they were doing any sort of evaluation, and point out that he doesn`t show an improving trend. They tell me he has always had a DQ of 60 or so, and that being as it hasn`t changed over the year they`ve been seeing him, they doubt it ever will. They also tell me that it isn`t just a speech problem, so ST alone won`t help anything. He`ll need intensive therapy, but to get that he`ll need a real diagnosis. And only a developmental specialist can give that to him. Of course, the only one in our area is backed up until January - so no therapy, no services, NOTHING until we see this incredibly busy doctor next year. Of course, all the specialists jumped to offer their unofficial feelings that is is PDD-NOS. They just magically know, even without having seen my son before. They give me a letter to take to our regular doctor and follow up team, supposedly telling them that they are offering a tentative diagnosis...
Supposedly. I opened it, secretly... It says that they suspect I may be neglecting my son, or am lacking parenting skills as I was a "neglected child". "Intervention may be required, as mother most likely lacks the skills to care for a delayed child." "Mother displays lack of concern or emotion when confronted with child`s delays." "Mother shows classic signs of denial when presented with atypical behavior patterns." Along with the actual real bits and pieces.
This did nothing but make me REALLY REALLY ANGRY. All they have done is basically look at my son`s lackluster desire to follow commands in a big playroom, take a look at his MRI, and then waste a bunch of time on analyzing MY past. What on earth does my own biological mother`s shortcomings have to do with my son? She didn`t raise me. Of course I was emotionless when they started throwing PDD and Autism at me - What am I supposed to do, jump for joy? Plus, my son weighed less than a pound when he was born - I`d be more shocked if he had nothing at all wrong with him. Denial... Nope. I was trying to point out things that concerned me, but instead they pulled up things that my son NEVER does at home as "atypical behaviors", or things that weren`t really strange at all! ie. standing on tip toes to try and reach the high shelf, putting the cars back in the box in a line the way he found them, pointing at the ceiling fan for a few seconds (never seen one before).
I know there is something not right about my son - he definitely has some delays. But I just don`t see the things they are seeing, and trust me, I`ve been searching for signs of PDD/ASD from the day he came home (We were told he was very high risk)
Sorry this has turned into a novel. Just needed to let it all out.
Wow, I'd be angry too about the stuff they are saying about you. My heart goes out to you, because I can imagine how that feels. When I read the part about how he put the cars back the way they were originally, I thought, "Good for him; a naturally tidy kid." What's the Red Flag about that?
I don't know what to say about the other stuff. I will say that it reminds me a little bit about an experience I had long ago, before I had kids. I volunteered for a study at the local school of psychology, and I remember that during an interview, I was asked some questions about my childhood. I was asked about spanking, and I told the interviewer that yes, I sometimes was spanked. My mom had a wooden yard stick, and I was spanked with that. If I was being particularly insolent, she'd sometimes slap my face. She coped the way she knew how, and I have no sense of having had a traumatic or abusive childhood. But, during the interview, the woman gasped in horror when I told her about the yard stick, and gave a sympathetic, sad, "Awwww!" It was very unprofessional, I thought. As I walked out of the building, I felt kind of violated. Like, now all these psychology students would be talking about the subject who was mercilessly beaten for the crime of being a child...when in fact my mother is a wise and kind woman who did the best she knew how.
When I read your post, I got the feeling that the people doing the "testing" of your son have their little checklist of "PDD" characteristics, and were looking to check off symptoms. Oh, look, he's standing on his toes! Check! Oh, there he goes, lining things up! Check! Of course, I don't know. I might be totally wrong.
The negative stuff about you and your family history seems pretty fishy. Sure, it's all part of the big picture, but they are there to help your son. I think it's important to talk about family history, to get an idea of whether autistic spectrum disorders might run in your family, but there shouldn't be any negativity and blame.
You're welcome to come here and ask questions as much as you want. Maybe your son will begin to show more PDD signs, or maybe not; but you'll be educating yourself.
Evelyn
(((Tamyu))) hugs.
Welcome,
I had my ds dx'ed in April this year and he came up PDD. He too had a speech problem. He just didn't talk so we in turn thought OK, speech delay. WE had early intervention come in to help (you should look into that btw, it really helps). The eval was so hard on us. Not only did Adam have a speech delay, he had congitive delays and motor skills too.
Needless to say I was floored. The real dx came later with PDD. Never in a 100 years would I dream it would be us. Like you, no knows he is on the spectrum execpt his speech is slighted. He has come along way in 4 months. He uses 2 to 3 words sentences consistantly and before it was one word and or grunts and crys of frustrations.
I truly feel for you.
Getting your child the help they deserve makes them have a better chance.
Early intervention saved us. I swear by it. Ask your pediatrican what programs your state has to offer.
Hang in there, we get our next eval in 2 weeks. Because of medical assistance once you are in the "loop", we have to get one every couple months to continue his therpy.
I think my ds is aspie.
PDD is a vague generic label. Your child is still your child. That bond and love is still there.
It takes time to get over the shock.
Many hugs from someone who knows how you feel
nora
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