Wednesday, July 13, 2011

The Road Bends

Hi friends!

Last week we brought Paige to see a developmental pediatrician (after months of waiting for the appointment). She was diagnosed with PDD-NOS (an autism spectrum disorder). Even though we were prepared, it still felt like a shock when the doctor said those words. You can only prepare so much until something becomes real. You know?
The doctor told us more about it. Pervasive Developmental Disorder is the overarching umbrella (soon to simply be called Autism Spectrum Disorder). Underneath it are a few different disorders including Autistic Disorder, Asperger syndrome, and Pervasive developmental disorder-not otherwise specified (what Paige has). It's a developmental disorder, but she doesn't fit in the autism category nor does she fit in the asperger category. So, she's in a short of "catch-all" category. Her delays were found to be in communication and social skills. Her academics/cognitive skills seem to be ahead, so that is helpful for her. The doctor recommended between 10 and 15 hours per week of floortime treatment with a behavioral specialist (who comes to our house) in addition to her 3 hours of Early Intervention treatments. sigh. It's a lot. I have to figure out how to fit it all in. It could be worse, but still isn't something you plan on, you know?
It's not what we pictured.
The social worker who coordinates Paige's "case" told me a story a mother of an autistic child shared with her. She said that finding out your child is autistic is a little like you were planning on a trip to Paris. You pack, you plot, you plan and you get your tickets. You fly across the globe in excitement. The plane lands and you find yourself in Amsterdam. It wasn't what you planned. It is a cool place, and ends up being a blast. But it just wasn't what you'd imagined your trip would be. But it ends up working out and you have a great time.
I'm so happy that Paige is going to be getting the extra help she needs to make the connections she needs to make. The doctor is confident that she will flourish with this additional therapy and that perhaps her disorder will be undetectable by the time she begins school. Here's hoping!
I'm just sad that our precious Little P has this challenge placed on her little shoulders. But she's so happy-go-lucky and loves having everyone come to play with her all the time. She certainly doesn't see it as a hassle; she doesn't know any different.
We've had family members asking for clarification on what Paige's main challenges are. She seems so typical to most. Among some other things, she has trouble "generalizing her skills." She HAS the skills she needs but has trouble using them in a quality and effective way in terms of communicating her needs and wishes. Her learning, her play skills, etc. are affected. I came up with a metaphor to further clarify. Imagine you have a piece of wood with a nail in it and someone shows you how to drive in the nail with a hammer. Now, imagine you ALSO have a rock and a mallet, but someone takes away the hammer. NOW how do you drive in the nail? Most people would automatically make the connection that you can use the rock or mallet to drive in the nail. But Little P would likely sit there and stare at the tools and not understand that she can ALSO use those to do her work. The house doesn't get built without the hammer. Until someone comes and SHOWS her that she can use the rock or mallet. Then she's all set. Would she make the connection eventually? Probably. But it would take a long time (thus causing delays). So, people will be coming to help teach her about making these connections through play. The hope is that soon she will be able to make these connections all by herself without extra help. They will also be helping her with her communication skills and general play skills (that pave the way for future learning).
In the meantime, I'm still wrapping my head around this whole thing and wondering what the future will bring. We will make lemonade out of lemons; that I can be certain of. The other thing I can be certain of? How much I love Little P to the moon and back. That she is the best thing to ever happen to us. And that none of this changes how wonderful, special and perfect she is. She's our little star and we're so lucky she's ours.
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14 comments :

Jenn Dyer said...

Megan,
I work in an Autism preschool program serving children all over the spectrum. It seems to me that, although it is a tough pill to swallow, you have all the tools you need to have a best-odds outcome! A positive and open-minded attitude, along with early intervention, will make all the difference in the world!! Good luck and keep me posted :)

Valery said...

Sending a virtual hug <3

Valery said...

Sending a virtual hug <3

Sapphire said...

This is actually GREAT news! The fact that you guys discovered this issue so early and are doing something about it immediately means that Paige has a chance to overcome this! So many parents are not proactive or because they don't want to face the situation they do nothing and then guess who suffers - the child. You are giving Pagie a chance to be everything she can be and MORE! All I can say is BRAVO to you and your hubby as parents! Pat yourselves on the back for facing your fears for fighting for little P. I'm SO PROUD of you guys and I only know you from the Internet!

You want to know why I feel this strongly about it? Well, I was one of those kids who didn't get help until 3rd grade!! 3rd grade! Do you know I still suffer from poor reading, spelling and math skills?? I'm now in my thrities and I will never master these skills now because I've learned things so differently with so many tricks and compensations that I've given up. Don't get me wrong I hold a good job and I've made my way in the world but not without a lot of HARD work and I really believe if I had gotten help earlier on things would be different for me. Things wouldn't have been so HARD for me. You can trust that when I have kids I will also be looking out for them the way you guys have looked out for Pagie. Keep on fighting fgor the BEST interest of Little P. Never STOP facing whatever it is she needs help with!

Heather a.k.a. Mummy said...

Megan, from what I have read about you following your blog, I can't imagine a mummy better placed than you to support Paige as she grows through this curve ball she's been dealt. Wishing you all the best on your journey. Your story has touched my heart.

Traci said...

Hey Megan. Huge hugs to you guys and your gorgeous little P. I'm so glad you were able to get help and I'm thinking loads about you guys as you tackle this new phase. Paige is so lucky to have you as her Mama to fight for her and help her find her way. You are both so beautiful and I'm so inspired by you.

Lor said...

Wow Megan. I guess this was quite a shock. But little Paige is so young that taking things now is actually great. You seem to be in very good hands and I send little P all my support, although she apparently doesn't need it since she has fun will the whole process.
And your attitude definitely helps!

unoeufisenough said...

Hi Megan, I have been reading yours and Little P.'s adventures for a long time without commenting ... I just wanted to wish you strength in processing this news. I thinkg that the fact that you give her the right tools and attention early on, is Great. You are a wonderful mum to your Girl !!

Beth said...

As everyone has said, it is wonderful that you are getting to the root of the issue at such a young age and giving her all the tools she needs to succeed. She is so adorable!

I wanted to mention a book that makes a link between diet and Autism. I just finished reading it myself and found it fascinating. It is called Breaking the Vicious Cycle by Elaine Gottschall. Many parents have had remarkable improvements when adopting this diet. Here is the website http://www.breakingtheviciouscycle.

Good luck!

Beth said...

As everyone has said, it is wonderful that you are giving her the tools she needs so early on. She is adorable.

I wanted to mention a book that I just read that makes a link between diet and Autism. It is called Breaking the Vicious Cycle by Elaine Gottschall. Many parents have seen great improvement with the dietary changes she suggests.(http://www.breakingtheviciouscycle)

Thinking of you!

Tam said...

I agree with other posters, there are challenges ahead but no Mama is better suited for the job than you. Little P is perfect in every way because of the love and attention you have given her. Your persistence, nurturing and hands-on care for P has helped to identify some areas that need improving and you've been open to provding the support she needs. Hugs to you Megan!

the sleepy time gal said...

I love this: "We will make lemonade out of lemons." You are an incredible mother for her. Be strong.

Anonymous said...

You are a brave woman! It seems to be that your little girl is growing wonderfully so do not let this disease spoil your happiness.... It is always possible that it is a wrong diagnosis, too.
Also, please read this:
http://www.ncbi.nlm.nih.gov/pubmed/19564647

Mary

Anonymous said...

I am new to your blog but not to PDD-NOS. If you have a chance read "welcome to the club" written by Diary of a Mom.
http://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/

Best to you and your family...

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