Friday, October 8, 2010

The Diagnosis: "Bad News"

I see this a lot, when someone talks or writes about getting the diagnosis PDD-NOS, its "bad news".  I think it is so sad they feel that way ... shows how far I have come in such a short time.  In May, on that day the therapist told my husband and I that Austin had PDD-NOS, I burst into tears and cried so hard I covered my face to prevent anyone from seeing me that distraught.  The therapist put her papers down and said "what can I do to make this easier for you?", "this is not a bad thing, we can fix it, we can fix this".  I couldn't speak ... just shake my head side to side ... devastated.  My husband tried to comfort me, there was none to be had.  In shock, I came home, found Austin, and held him as I sobbed and sobbed.  I felt so sorry for him, for his future ... for the unknown.  Why my little boy?  Why him?  How did this happen?  Austin giggled initially as I cried, it made him nervous to see me like this so I  tried very hard to stop.  I wiped away my tears and cuddled him ... my baby, still my baby, whom I adore and would give the beating heart from my chest if he needed it.  That will never, ever change.

For the next two weeks, I would just burst into tears spontaneously, especially if I was alone.  I was overwhelmed!  What now went through my head all the time was, "is my baby going to be okay?".  Well, he changes everyday.  Everyday something new comes from him.  His speech is getting better, his comprehension and his social skills.

I said I would give you hope, so here is a little story that I am sure will make you smile.  Austin and I went to leave the speech therapist's office the other day, there was a little girl waiting to come in the door, Austin initiated the conversation (which would have never happened even two months ago) and it went something like this:

Austin:  "Hi, what is your name?"
Girl:  "My name is Madeline."
Austin:  "My name is Austin ..."

The speech therapist and I were almost jumping for joy!  You'd think we were two tween girls who just won backstage passes to Justin Bieber or something!  Austin was still talking away to Madeline but I missed it because her Mother said, "your little boy is so polite!"  "Thank you", I replied to this obviously intelligent, well mannered and sensitive woman. ;)  My little boy, yes, he is: polite, sweet, adorable, funny, sensitive, cute as a button and, he is on the spectrum.  These are all things that make Austin what he is ... I am very blessed, very lucky to have been given such a treasure as he ... I promise that "bad news" feeling, will go away and one day you will wonder "why did I ever feel that way?".


The Maven said...

I'm so glad you wrote this post. While our children's diagnoses are very different, I, too, went through the spontaneous burst into tears, worried about their future heartbreak. But those dark times really do pass, as our kids start to show us exactly what they're made of.

I think you've given me something to blog about today. Thank you!

Mommie That Gets It said...

Thanks Maven! You are right!

Can't wait to read it! HUGS!

lumpkiss71 said...

Hey.. i think we have aloy in common.. people look at my son and say nothing is wrong with him and i say ur right, everything is right with him. It's US that don't get it.. he is 3 and has been diagnosed with PDD-NOS he is in preschool now 3 hours a day.. up from 2 hrs a day so he has made progress.. the only thing that disturbs me is when he has a good day.. everything i am used to expecting.. the breakdowns etc are not there and i feel lost..kinda opposite.. they are maybe 2 or 3 days a month like this.

Mommie That Gets It said...

Welcome lumpkiss71! :) First, let me give you a *HUG* because, well, as you know, there are days we need it. :)

Yes, there are people in my life who deny that anything is wrong with my son. It makes it harder doesn't it? Ignore them. You know your baby and you are doing the best for him. Stay strong honey!

The number of good days will increase, it was hard for me at first too. Lots and lots of bad days, then less and less and more good days. Don't get me wrong, there are still bad days. It is confusing when everything goes well. I get it. Don't feel lost, your son is developing, the only difference is at a different rate. I love the Temple Grandin movie when her Mother says she is "Different, not less". He is only 3. My son is 5. At 3, I felt exactly as you do now. He'll get there, you'll see. Good for you for getting him the help and support he needs. You are doing a wonderful job! :)

Max said...

Thank you so much for creating this blog. I am finding this at the perfect time! I have just recently been told, after 1 1/2 years of early intervention and therapy appointments, that my almost 3 year old son is being diagnosed as pdd-nos. At first I was ok, knowing that along this long battle we have been embarking there would eventuially be a diagnoses. But most recently I have been feeling very overwhelmed and alone. My husband and most people who don't spend a majority of their time with Ethan don't really see or accept his issues. I am constantly told by my husband that I just need to be more strict with him, yell more, spank him, but my husband (who is bi-polar) doesn't understand that the Tantrums aren't from Ethan not getting his way but from his lack of sensory input or overstimulation of sensory input that causes him to break down. I try to explain that yelling at him isn't making it better it is worse.
Anyways, after over 200 therapy appointments so far, my son is now starting to talk more and more, which helps with some of the fits. But public places still have to be the hardest. I try not to care about the dirty looks or whispering of disapproval, but its hard. People look at us mothers of children with pdd, as bad parents. When is this going to end. I want to scream myself! My son has issues with food and sleep as well. His worse fits come at bedtime. He starts repetitve chanting and screaming for hours when the thought of bedtime arrives. We have a strict routine, but even the therapists are out of ideas for Ethan.
It is really nice to be able to see that other mom's face similar challenges with our unique and quirky children. I too feel very blessed to have this adorably sweet and loving child who loves with his whole heart and lets it shine through his smile. Even if 2million little lined up trains are blocking it ;) He doesn't know he is different, and I wish I could keep it that way.

Mommie That Gets It said...

Welcome Max! *HUG* for you! You're welcome. Thank you for coming to read it. I am happy it is here for you, now, when you need it.

I totally understand how you feel. I can promise you, it will pass. Cry, if you have to, it helps to release the emotion. You are not alone, I am here for you.

Ethan is only 3. You are right. Ethan cannot help it. I try to talk to Austin about things before we do them, like going shopping or to a movie, so he knows what to expect. Now, it is much easier at 5 than 3. I would not take Austin too many places at 3, the stimulation was too much and he could not explain yet why he would get so upset.

Does Ethan liked to be cuddled? Austin will fall asleep in 2 minutes if I just take him to my room, or even his, snuggle him up with his blanket and cuddle him. Rub his back or his hair, and he's out! He takes a lot of comfort in cuddling. It calms him. He has sleep and food issues too. He's a picky eater. I just keep trying. It gets easier. I will do a post on this subject.

I find a bath used to really settle Austin before bedtime. Read him a book, cuddle him, see if that helps.

People are always going to stare or judge. Ignore them, that's what I do. They have no idea.

They are all wonderful children! :) Too bad people don't take the time to see it, but we do, we are who counts. You are doing a great thing for Ethan! You will see how he will develop. He will surprise you, give it time. By the way, my son thinks everybody else is different, not him! ;)

Sherry said...

Excellent web site! I want to ask a question, and please don't take any offense to my ignorance! I have a son diagnosed with autism, and I've always been curious as to what PDD-NOS is? Which end of the spectrum is it on? Best wishes for you and your family!

Mommie That Gets It said...

Welcome Sherry! *HUG* for you! Thanks! I am so glad you like it.

Not at all ... I had to go to the doctor to get a better explanation myself! PDD-NOS is "Pervasive Developmental Disorder-Not Otherwise Specified". The simplest way to explain it is a child is on the autism spectrum but not in any of the categories of autism that exist. My doctor explained it to me as, they are not autistic but have some autistic behaviours. He said they put children under this "umbrella" because they just "don't know". The therapist that diagnosed Austin said that he is high functioning. Hope that helped. :)

Thank you and best wishes to you and your family too! Hope to see you back here again! Take care! :)

Grapes in the Washer said...

No feeling in the world like that of a beautiful moment given by your child. It makes me want to sing @ the top of my lungs! :) You are doing a terrifc job!

Mommie That Gets It said...

Welcome Grapes in the Washer (GREAT NAME!)! *HUG*! I agree! Thanks so much! :)