Monday, February 8, 2010

Undiagnosed PDD-NOS

Hi, my name is Brooke and I'm a new contributor to Thru the Tulips. I learned about this blog through early intervention and another mom I met there, Erin, who is also a contributor.

I have a three-year-old (well, he will be next week!!!) named Tanner who is a sprightly little boy with undiagnosed PDD-NOS.


We first thought that something might be "wrong" with him when we went to his 18-month checkup. You know how you're asked all the milestone questions? Well, at that time, Tanner "should" have had about 10 words in his vocabulary and he didn't have any. He was a bit late in reaching most of his physical milestones as well, and we (and our pediatrician) attributed it to Tanner having been born with a club foot. When we told the doc that Tanner wasn't talking yet, he wanted us to watch him and we'd bring it up at the 2-year checkup.

Six months passed and we scheduled another checkup. At this visit, Tanner should have had 20 words, and he only had about five. Our pediatrician asked us a few more questions and referred us to early intervention for speech therapy services and also encouraged us to look into getting Tanner evaluated for autism. We started early intervention a month after Tanner's second birthday.


We only saw little progress in the following months. We were able to teach Tanner a little bit of sign language so we could start communicating with him, but we were frustrated with his seemingly lack of progress. Finally, this last October, Tanner's vocabulary just exploded. He started saying words and slowly stopped using the signs that he now has words for. He has a lot of new words and is starting to speak three-word sentences. He still uses a lot of gibberish, but we're in the stage where at least Mom and Dad can understand him most of the time.

At around that same time, we scheduled a meeting with a developmental pediatrician to start the process of having him evaluated for autism. After our visit, the pediatrician felt that Tanner was exhibiting behaviors closer to Pervasive Developmental Disorder rather than actual autism. She noted some of Tanner's quirks, like lining up his toys rather than playing with them the way they're supposed to be played with.


Tanner is also very particular about the order and placement of things. My husband wrote a good example of this on our personal blog.

We saw a psychologist in November and after the initial visit, she had the same impression as the developmental pediatrician - that Tanner probably has PDD (most likely PDD-NOS) rather than autism. Unfortunately, she wasn't covered by our insurance, so we didn't meet with her for the two succeeding visits she wanted before making a diagnosis.

It's been a long, hard road raising a little boy with these developmental challenges, and I'm sure they're nothing compared to what some of you are faced with. Our game plan for now is to wait until next month to have him evaluated by the Northern Utah Autism Program. Tanner was able to qualify for preschool services through early intervention, and we're hopeful that he'll continue making progress with his speech with their help.

For now, we just take one day at a time and do our best to teach him what he needs to know. I struggle at times, worrying what people think of him, our family and friends. I worry about him growing up and what his life will be like. If kids will pick on him or if he will be left out because he's "different." I want him to experience everything possible. I don't want him to be at any disadvantage. It's a constant adjustment, realizing that I have an atypical child. But, I'm glad that he's mine. He makes me laugh everyday and I look forward to what's to come. Knowing that he struggles with different things makes me happier when he makes little strides in his progress. If he were "normal," I might not acknowledge his accomplishments as much as I do now. He forces me to see things that I otherwise may not see. And I'm glad for that.

15 comments:

Melissa said...

Welcome to the blog Brooke!!! I am so excited to get to know you and Tanner and get your input on things as well.

My son Trevor, who is almost 8 now, went to the Northern Utah Autism Program (NUAP) for a year. It was an amazing program and I think it made all the difference in helping him get to where he is today. Hang in there girl!!!

Jessica said...

Hi Brooke, Im Jessica, and I got chills reading your post. My son is 2 and 3 months and has 0 words. He knows about 5 signs and communicates sadly through head banging. So you gave me great hope that one day in the near future Jonah might start talking.
I havethe exact same feelings about my lil man going to school. DDI said it might be in Jonahs best intrest to attend special Ed thru the Murray school district. i have many resorvations just cause here in Murray the "special" kiddos are mainstreemed into the "normal" class. I will melt down like a 3 year old if I hear one rude comment made to my son. Because of this I have put alot of thought into putting him into a small co-op of sorts, or not putting him in anything and home schooling him. This being said...In the UTAH FAMILIES mag, they are running a story on children with special needs and how to take controll of the class room scene. Its worth reading!
Glad you are walking with us through these beautiful tulips ;)

Happy in Holland said...

Welcome to the blog Brooke! I enjoyed reading your post--it brings back lots of memories and old and current feelings. My little guy is almost six now, and he is doing so well, thanks to services he received since he was 3 years old. I have faith your little guy will get the services he needs to make a difference in his life too! I look forward to getting to know you!

Katherine said...

Welcome Brooke! I hope you find this outlet as strengthening as I have found it.

Amen to the last part of your post. Sometimes I think that if I could just hole up away with my son and the people who love him I would never have to worry about other people and we could be happy. Having spent way too much time (esp during RSV season) hiding away, I know this is not true.

Sadly, people will not understand sometimes. It hurts when people do not appreciate how wonderful your child is or how hard you work with them.

When this happens, know that we are here for you. We will be here to cheer for the little accomplishments too. They are super important.

Good luck. I am glad to see you found this blog.

Preemie Miracle said...

Your son is beautiful. We are 4 and don't talk either!! We should all get our non talking kiddos in a room and see what they can do!

I can't wait for more post to come...

Welcome.... holland is nice... Sometimes

Luke and Erin said...

YAY! I am so glad you started here! I will love to keep up with you!!!
Good luck with it all! He is such a cutie!

Unknown said...

I am in a similar boat as you but the worry is killing me. The last 2 months have been the longest months in my life, I am constantly worrying about what is in store for our little ones. If you have luck getting over the worry, please do let me know

mickey191179 said...

Brooke, I went through the same things with my daughter. My daughter did not start talking until she was 3. She was diagnosed with PDD-NOS and on top of that Microcephaly with Global Delays. She has come a long way with Early Intervention. They think that now that she is 5, she does not have full autism or the PDD-NOS any more although she still has the Microcephaly. She is 5 and in a regular kindergarten class with Speech Therapy Services. She may need resource eventually for being so delayed early on. She is struggling with reading and writing. Hope this helps. Now they are thinking she may have OCD.

Ashley Smith said...

Brook, my name is Ashley and I found this blog because I was doing research to find more information about this for my son. My son, Harley, will be 3 in September and he has had it rough. On Harley's 1st birthday, we noticed that he wasn't doing the things that he should have been, like making noise or crawling. We didn't think anything of it at that time but then when we went into his 18 month check up his doctor said he should have had some words. My mother and I thought there was something wrong. I also have a 6 year old that had many problems (Cancer at 18 months and ADHD, PTSD, ODD, ADD and Adjustment Disorder) so we had reason to be concerned. So we thought about getting him tested for Autism. In August 2012 we saw a ENT Doctor because the though of him being tongue tied crossed our minds, at that appointment we had his hearing tested. It came back inconclusive and we were referred to Eastern Maine Medical Center for an ABR. When the results came back it showed that he has a moderate hearing loss in his left ear and a mild hearing loss in his right ear. We got Hearing Aids and an Early Intervention Service to come in the home and teach us all American Sign Language. He has had his hearing aids for 7 months now and he knows about 50 signs. His speech is getting there but the articulation isn't improving. He was released from Speech Therapy 3 months ago because she felt that he was talking at a normal rate.
Last week, we got information about his older sister (One that we have never met because of Harley's father not being there) and we were told that she has PDD-NOS. We seeked out another Speech Therapist that would take him on and she had mentioned this before. We are now looking at getting him evaluated at a Developmental Clinic in Bangor, Maine. We have noticed more and more things happening with Harley, his speech is depleting and he is using more and more baby talk. He can't have his hands dirty, he has to have a schedule and if it gets off track, his world melts away.
I'm hoping to find more information and get more help in making things easier for him.
This blog has helped me see so much already. Thank you everyone.

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