Monday, August 19, 2013

The A Word

Thanks for your patience as I have processed things over the weekend.  We met with two doctors last Thursday to discuss their evaluation of Parker.  While it was not a surprise, it was still very hard to hear.

Autism

To be marginally more specific, Autistic Disorder is his official diagnosis.  I know, still kinda vague.  But, it's not Aspergers or PDD-NOS, I think, since we weren't given that specification.  I apologize for not being able to give more information, but I am still learning.  I have found there is a LOT to learn...

He was also diagnosed with hypotonia, or low muscle mass.  This is apparently common with Autism.  They was concern about his head growth (or lack there of) over the last year or so.  We were not expecting these last two diagnoses so that was surprising.  

So, what is next?  Therapy, lots of therapy.  We have a game plan and hierarchy of treatments.  Speech therapy is the foremost priority.  Currently Parker has no words.  We were told his language skills are mostly at a 6-9 month level.  We will be started speech therapy this week, which is very promising.  We also have occupational and physical therapy scheduled to start within a few weeks.  We have also scheduled a neurological consult and may need to have an MRI done to check on his brain growth.  The wait for that is 3 months...YIKES!  We will also be doing blood work and genetic profiling.  There are several weak genetic correlations that don't have visible indicators now due to his age.  Knowing these can help us understand the best way to treat him now and in the future.  Less important, but still on the list is an eye exam to get his base visual status.  We have no reason to believe he has sight issues, but it is standard practice to rule out any physical barriers to treatment.  Whew, it is tough to get a list of "recommendations" a page and a half long.

I am dealing with this as well as you could expect a mom to.  Thursday was tough.  I was a trooper during the meeting with the doctors, but broke down on the way home.  I had a work function that evening so I had to pull myself together again, but lost it by the time I was home again.  I pulled in to the garage and just wept.  For a good 10 minutes, I wept, uncontrollably.  When I finally walked in, I went straight to Parker's room.  I had just missed bedtime so he was still awake.  I went in and kissed and snuggled him.  And he ran around his crib and smiled and squealed.  And I cried.  This is a beautiful picture of this moment in our life.  It is tearing me up inside, but nothing is different for Parker.  He is the same happy, energetic, loving boy.   I expect there to be a few more fits of weeping, but my emotions are starting to level and reality of this new journey is setting in.  I am hopeful and optimistic, all while trying to remain realistic.  I have been wanting to reach out for support for a while, but didn't know (for sure) what I needed it for.  I have already spoken with a co-worker who has been on this journey for 12 years.  I have been reading this amazing blog for a few months.  Chrissy inspires me every day to never give up.  I can't give up on this beautiful boy.

If you chose to stay with me on this long road, thanks for your support.  This is one of those "I don't know what to say" situations and that is ok.  Just knowing you are here means the world.  

7 comments:

  1. Although it saddens me to read this, I know that Parker has 2 amazing parents that love him deeply- this will help tremendously. You're right- the diagnosis is a scary one- but the fact that you caught it early will help him a lot. The fact that he is such a happy kid means that you are doing it right. I hope you know how many people are here for you guys!

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    1. Thanks Annie. Your support means a lot. Can't wait to see you in a couple weeks.

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  2. I have been checking your blog regularly to wait for an update. Thank you for sharing this journey and all the emotions that come with it. You are a strong woman and I know that you & Jimmy can handle this despite what you may feel. Parker is such a beautiful boy and he is lucky to have you both. Wish I could drop in a give you a hug... sending you a virtual one! Love from all of us here in Atlanta.

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    1. Thanks Jules! I wish I could get that hug! I really wish we were closer sometimes (or all the time!)

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  3. It is never easy to hear something like this about your precious baby. I know it's so much to process, but you are an amazing mother. Never forget that! The information, the appointments, all of that will be overwhelming in the beginning, but you'll get in the swing of things. Parker has such a great support system in you and Jimmy. I'm so glad you have a support system in your family, and finding peace/hope from other blogs. Know that I will be here to support you through the entire journey, and hope I can help in any way you need :)
    *hugs*
    Remember that it is ok to grieve/cry. It's important to the process. Most importantly, remember that you can do this! Parker is going to do great, and that smile on his face will make every moment worth it.

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    1. Thanks for your kind words Courtney. I love the friendship we have formed. I have cried a LOT over the past 2 weeks. I am just trying to take one day at a time. I find new resources each day and that helps we to feel like I am digging at least a little.

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  4. Lesa, I had no idea! I'm sorry I haven't stayed in touch better, but I was catching up on your blog and read all about everything you guys have had going on the past couple months with Parker. You are SUCH A GOOD MOM and YOU ARE DOING A GREAT JOB! God has Parkers entire life in his hands and has GOT THIS! The diagnosis can be intimidating, but that doesn't define Parker and who HE IS, and most importantly who he is in Christ! We are here for you and will be praying and would love to know if we can help in any way. Please just ask! Love you girl, hang in there!

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