Friday, September 13, 2013

the journey to the diagnosis

This is long, but it is what I shared via facebook yesterday. I have more to process about everything, but here is basically the eval stuff and the diagnosis. If you just want to know the diagnosis scroll to the end. :)

History:
If I start counting  when Bugaboo began receiving services (physical therapy) our journey to today’s diagnosis has been about two years.  It has been “experts” telling me his delays were because he was (six weeks) premature. At about eighteen months old everyone finally started listening (a little) to my mama-gut that it was something else.  We have seen neurologists in town (insert frustration here). We were referred to genetics out of town.  They screened Bug for pretty much everything that way, and it all came back normal.  Last summer in addition to PT once a week in home, we added speech/language and PT once a week elsewhere in addition to starting to get OT and speech/language once a month in home.  Certain behaviors started at some point that left us bewildered or sad or frustrated.  We added OT once a week. Through discussion with people I actually consider experts, I got the advice to get referred to an autism and neurodevelopmental disorder center. I filled out endless paperwork.  They reviewed it and asked more questions and said, “We want to see him.”  

Today - how it worked
So today he went for a full evaluation - he had an ADOS screening (apparently “the gold standard” of autism screening), then a speech/language eval, and then a pediatrician who specializes in autism and neurodevelopmental disorders evaluated him.  They all had their opinions separately and met together and agreed on what they were seeing.

ADOS (done by an OT)
This was a really interesting portion to observe. I won’t bore you with details, but basically it was to see how Bug interacted during play (and other similar situations). At the end the OT gave me her brief opinion - there were things that Bug did really well and things that were mysterious.  Sometimes he has eye contact, sometimes he does not. During this he showed some true-to-form ways he gets “stuck” or fixated on things.  

Speech/Language Portion
The first part of this I was in another room for the parent feedback/REEL. After that I observed from another room watching him on the tv screen. Again, I felt like they got a pretty good picture of Bugaboo’s abilities and behaviors - although he did something he never has done for me - used a 3 word sentence “I want money.” (It was for a piggy bank he wanted.) It was awesome to see what he could understand because I don’t have the knowledge or tools to assess that at home.  Basically we know he’s behind with his expressive language (what he can say) - they put him right about 2 years.
However, the SPL person came in afterwards to talk to me, and I quote, she said, “Your son is smart. Smart.”  
It’s not that smartness is the goal for my children - my love is not contingent upon abilities or gifts. But after two years of hearing so much of what my son can’t do, after seeing him with his peers and how he lags behind in so many areas to the untrained eye - after seeing him do some higher level things at home and me not understanding if I am understanding it all - for some “expert” to tell me my son is smart made me want to cry.  Apparently, Bugaboo's receptive language is ABOVE his age level - he tested at 4 years old for his receptive language.  (I will have lots more thoughts on this at another time.)

Pediatrician
The doctor came in. She mentioned our 54 pages of medical history on Bug. She was very kind and asked questions that made me feel like she thought of me as an equal - as another expert on my son.  (Actually everyone at the Center today made me feel that way.) She examined him, especially his reflexes and muscles.  We discussed his prematurity, his meltdowns, his nights when it is hard to go to sleep, his drooling, his low tone, etc.  She gave me some things to follow up with with our ENT for his drooling.

Diagnosis
After the experts conferred, this is what they came back with:
On the ADOS Bug came out on the very mild side of the autism scale/spectrum. However, the speech language person (and the other two agreed) felt that with all of the interaction/social things they observed he was not on the spectrum.  Then with the big picture of these assessments, our medical history,the genetic tests that found nothing and all of the other information - they all felt they had a diagnosis.
Mild cerebral palsy.

They told me there were a lot of signs/symptoms/mysteries to agree with the thought that it could have been a spectrum disorder. But they think that a lot of those signs (and signs that are not spectrum signs) are also signs of the issues with the cerebral palsy.  They want to see him again in a year to follow up because sometimes things get “uncovered” as kids get older - so they want to see if the ASD signs increase or decrease, but they really think CP is the diagnosis. The doctor wants us to also come back in a year for neuropsych exam - so much so that if we need it they will save one of the five “free” spots for us next year if insurance doesn’t cover the exam. They think (like everyone else) he is mysterious, but they also kept talking about how sweet Bugaboo was.

We have a letter to hand to all of our local therapy/medical/educational places as we await the official bigger packet of the results.  We have to meet with our local neuro to get his opinion, but the doctor also told us to let her know if we need help for other resources. The social worker there later told me this doctor also works in the CP clinic - so even though it is a drive, if we can’t get the help we need in Springfield, we can make the drive.



Thoughts and Prayer Requests
Thank you for praying with us over the last couple of years. I can remember specific times when Bug was prayed for by people, when you stood in the gap for him, when you anointed him with oil, when you texted to tell me you were praying for him. I can remember conversations with you about his strengths, about my worries, about his needs, about how he must be so smart he doesn’t want to be bothered by talking to all of us boring people. Thank you for celebrating every fought for milestone with us, and for even celebrating with us that we have some answers.  We have no idea still what the road looks like, what the the future looks like, what all of this entails.  

Please pray for us as we process all of this over the days ahead. Pray for me as I deal with doctors offices and early childhood centers. Please pray for our local neurologist that he would be helpful instead of a hindrance.  Please pray for us to know how best to help Bugaboo with his expressive language and his motor skills and the things that are still a mystery to us (his fixation on things, his meltdowns).

I don’t believe God gives some of us kids with challenges because we can handle it. We can’t. I may have some things that will help me handle this diagnosis, but I also have some weaknesses that will make this diagnosis hard.  But I do believe God in His sovereignty gave us Bugaboo the same way that I believe God in His sovereignty gave us Bubby.  My friend reminded me of this today in a note she sent, that I was made to be Bug’s mom and God is going to be glorified through his life. And for that I am thankful. I serve a God who is good and big and compassionate. This diagnosis is not a surprise to Him, and He is with us and strengthens us by His Spirit and His Word and the support system we have near and far.




So if you made it through all of that, thank you. And if you didn’t and just wanted the diagnosis - mild cerebral palsy.  

Much love,

The Mac Family

8 comments:

  1. A diagnosis! Made me cry reading your words- how sweet they are and how much you love Bugaboo and how you trust God with his life. So glad you finally have some type of answer. Praying for you as you take these next steps!

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    1. Thanks, Meg! I have appreciated your prayers and encouragement on here over the months/years. You are a blessing.

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  2. Praising God that you have answers, as well as what sounds like a great team to help you on this journey. We're still on the journey to a diagnosis, so I'm imagining the emotions you have right now! Blessings!

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    1. It is a weird feeling, to be quite honest. Not as "dramatic" as I thought it would be to finally have something - maybe because we were thinking it was something different. I will keep praying for you on your journey.

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  3. I am SO glad to read this! Some answers at last! We will keep praying for mysteries to be solved and resolved!

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    1. Thank you, Courtney! I know you and Chris have prayed for him since back in our first Core Group days. I am thankful for your friendship.

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  4. Oh Amanda! I am relieved for you, sad for you, a bit anxious for you, but THANKFUL to see God's hand on that special little guy. He is precious. God's gift. Thank you for being an AMAZING example of reliance on the Lord's strength. God will be glorified by the testimonies of your lives. (He already is!) Praying for you, friend. Love and miss you!

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    1. THanks, Kristy! I miss you, too!
      We had a good week processing all of this until today - ugh. Definitely need more grace and strength and wisdom.
      Love you!

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Thanks for stopping by and sharing your thoughts with me.