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PDD-NOS

Oct 07, 2011 - 8 comments

Pervasive Developmental Delay-Not Otherwise Specified. That is what Phin has been diagnosed with. My sweet boy is on the autism spectrum. He did such a great job at the evaluation. The testers were impressed with the way he has created a means of communication without verbal language and rudimentary pointing skills.

His current support has been amped up from 1 hour a week with his developmental educator to about 12 hours a week with not only his DE but two other support people. We have had 2 days of meetings to decide the next steps and figure things out.

I am not surprised and I am also heartbroken. I am sad and angry. I am confused and terrified. I am relieved to have an answer but how I wish it were something else, I do not know what else but just something. Even as I type that I know how lucky I am to have him and there could be so much worse that it could have been. I have not let myself cry yet as I am not quite sure I could stop.  

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294043 tn?1354207946
by Helen72, Oct 07, 2011
Kelly, dear, I wish I could give you a hug.  How is your dh taking it?
I am glad Phin is getting help, I understand that early intervention is the key in such cases.  
I hope you can tell us a little more about Phin's evaluation, what were they looking for?  Phin's motor skills seem so advanced I can't believe this is happening to you.

Many hugs to you and your little boys.

1169162 tn?1331232353
by nola0805, Oct 07, 2011
I am so sorry to hear this - I know how heartbreaking it can be.  Please keep in mind that with early intervention, the sky is really the limit.  I have seen so many little ones look so different after a year or two of good intervention.  I am a child psychologist and work with children with autism at a major University Medical Center.  If you have any questions feel free to PM me - I can be a good resource.

I highly recommend the website Autism Speaks - there is tons of information - look under Family Services and then Tool Kits - there is a wonderful tool kit called 100 days - it outlines what families should do in the first 100 days after receiving a diagnosis.  

Hang in there and remember - he is the same little boy that you brought into the evaluation before you received the diagnosis.  There is a lot of help out there and Phin will show you the way.

392430 tn?1382904781
by kele1129, Oct 08, 2011
Helen- Chris is doing well. It is hard to ignore that something is wrong with how Phin processes things. Now we are finding out that a lot of the things we thought were typical kid things are not. The running while looking behind him or out of the corners of his eye. The repetitive behaviors that will go on far longer than age appropriate. Obviously his late start of speech and then loss of that speech. The tantrums and anger and frustration are all symptoms as well.

The evaluation started with a few in home observations, a huge packet to fill out that basically outlined Phin's entire history of everything, and then a 4 hour long observation at the Children's Development Clinic with about 5 different people. He was so good and really showed his strengths-eye contact, attention at tasks, fine and gross motor skills. And also showcased some of the criteria for his diagnosis-looking out of the corners of his eyes, no vocalization, inability to respond to name, repetitive behaviors, and even a tantrum (not fun)

It has been a long process all summer long so to finally have an answer and the shot to really help him is a wonderful thing.

Nola- Thank you. I have been checking that site out in small bites. Too much info is bad for my softy mom heart. And yes Phin will always be my little boy no matter what. ^_^

294043 tn?1354207946
by Helen72, Oct 08, 2011
Thank you for sharing!  I hope Phin catches up in the communication department soon.  

By the way, if Anna had to spend 4 hours with 5 people she did not know, she would throw a fit those people would not soon forget.  I think her pedi is afraid of her :)

Stay strong and kiss my favorite curly-top for me.

392430 tn?1382904781
by kele1129, Oct 10, 2011
He is picking up signs really well, but now he is also inventing his own signs and gets really mad when we don't understand him. All through out this I have been managing to keep up with school and have decided to add my third major back...so yep I will be a full time student with three majors while doing 20 hours a week of intensive therapy with Phin and I can't forget about Zac...

I need a nap.

439903 tn?1380137882
by Asking4aMiracle, Oct 10, 2011
Oh wow, Kele I am so sorry.

294043 tn?1354207946
by Helen72, Oct 10, 2011
That is a huge workload!  Will Zac be going to daycare?  How can you manage?  I hope you do not burn out.
Hugs!

392430 tn?1382904781
by kele1129, Oct 10, 2011
Zac is not in daycare but with the therapy being in-home, it is not so much of an issue. We do have a sitter than comes and takes Zac out for walks or to the park so I can focus more on Phin. Then there are days she comes so I can go to class or just so I can get out by myself and either do classwork or simply take a breather. Tuesdays are my internship days and the boys and I are gone all day. They come with me while I intern at an in-home daycare. It is pretty nuts around here!

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