We finally have answers!
Most of you know by now, the struggles we have had with Blake. Blake is the light of our life. He is the first one to put a smile on my face every morning. He is constantly making us laugh and he is the sweetest boy with the biggest heart. He has also completely challenged me and frustrated me to a point I didn't even know existed. I have spent many hours and some tears trying to figure out why his behavior or certain tasks were so off.
I have always known something was different. Brian, not so much. I have vowed over and over to get answers, to find ways to help him and to somehow help him learn to overcome his challenges. I just didn't know what they were.
The beginning: back in February
After yet another trying day/moment with Blake, I was at a complete loss for what to do, how to handle this boy...I called our pediatrician and requested an appointment; for me. I needed a one-on-one chat with the Dr. I needed him to HEAR me. I was well prepared with a post-it full of concerns from that week alone and at the end of the appointment, I left with a referral for an Occupation Therapy Eval from Children's Hospital. This excited me. It was my first glimpse of validation, my first opportunity to ACT and not just "wait and see".
We went. It was GREAT! It was a VERY positive and really awesome experience. Watching Blake from behind the one way mirror interact with the therapist was fun! He cracked us up with some things he told her. He did a few things for her, we had not seen but the majority of his abilities were what we have witnessed at home. Perfect!
Once the eval was finished, Brian and I had a chance to talk with the therapist and hear what she had observed. She said she did feel he would benefit from some Occupation Therapy for some Gross motor and fine motor delays. She quickly mentioned the word "dyspraxia" which I didn't even remember at that point because...well it's a big word and I was listening for other things. We left with mixed emotions...we had some recommendations, some positive findings,but we also had no real idea what to do from there. Ok, Blake would benefit from OT. Well, first step; call insurance.
Insurance fail! OT is not covered unless it was the result of an accident. Dead.End.Road. Services are $350/session and they want to see him weekly...$1400/mo? Ok, sure! Sign me up - who needs a house anyway?!
So, I took a break from it all. I read the recommendations of what I could do at home to help him with fine motor and gross motor skills. That, I can do.
Then, last week (and I am SO SO SO thankful for this turn of events) we went to Blake's ordinary eye exam. Check the prescription, etc. Blake has made really good progress with our daily eye patching at home and although it initially increased his visual abilities, the progress has stopped and his eyes aren't getting any stronger. Time for a bit more. Visual therapy.
$$$ - but we will get back to that!
That night, for some reason (not coincidence) I decided to review the Occupation Evaluation paperwork. I am still not sure why? It hadn't been mentioned since February but I guess hearing the words "therapy" made me think more about it...As I was re-reading the report I saw a sentence I had missed before:
"Blake has been diagnosed with Dyspraxia".
1st stop, Google. It was good. Now, I am still learning about what Dsypraxia is, but here is what I do know:
- Dyspraxia is a developmental disorder that affects motor skills and social areas of development.
- It isn't all that uncommon
Not much I know...I will learn. This is new ;)
Wanna hear the funny thing? As I have been researching and reading about the symptoms of Dyspraxia; I have found myself smiling...these symptoms are worded so perfectly and for so long, I have been trying to explain WHAT was "wrong".
here ya go:
- Easily distressed
- Difficult to console, even since birth
- Frequent temper tantrums
- gross motor and fine motor delays
- difficulty in social situations
- thrives in adult company
Half relieved, half scared - that sums it up.
But, no time for either of those things because the next day was already starting...I KNEW a "NO" from insurance was just not ok! We have a diagnosis now...we NEED services! So, I called and after explaining that he had been diagnosed - BAM - they cover 30 visits a year! Don't even get me started on the fact that it depends on how you word it...that's for another blog.
Time for our Visual Therapist eval. 2 hours of intense vision testing! My poor lil guy's eyes were SO tired after all those tests...we went toy shopping! Somethings just aren't negotiable!
The end result of the Visual Therapist won't be known until this week when Brian and I go in for a consultation. Afterwards, we will know the plan - which I am learning is key for me. I am a planner.
Wanna hear our GREAT news?! A total God thing...the waitlist for services at the Children's Hospital therapy center is 3-5 months...when I called last week after reading the diagnosis they had an opening starting this week and she offered it to us since our eval was 4 months ago (within the 3-5 month window)!
NO MORE WAITING!
We get to start OT next week! Words can NOT describe how excited I am for Blake! I keep saying we are just giving Blake more tools to help him learn the world. More ways to learn and do and overcome his obstacles. Fact" we all have them, some more than others. Although there is no cure for Dyspraxia, learning HOW to handle his struggles is his cure. He is already SO amazing, so incredibly smart and funny - I can't wait to see what he can do with more tools in his belt!
There are some symptoms of Dsypraxia that don't match up to Blake...signs of ADHD, trouble with feeding, etc. That is NOT at all, Blake. So, as we start to dive into OT more will be revealed. More plans will be made. More progress will be made as we customize a plan that is just right for him.
More to come as we start this journey...I can't wait!
until then, THREE things I know for sure...
1. WE GOT THIS!
#2 - We will be having FUN along the way!
#3 - You will go FAR, my son.
I am glad you went with your gut. I think moms have an extra sense sometimes when it comes to their children.
ReplyDeleteWe had a similar situation with one of our kids. After much deliberation, I decided to have her evaluated and sure enough, my gut was right. She qualified for free speech therapy until she turned 3. She also qualified for free preschool services but we chose to wait on that. I have seen so much progress with her that I feel it was the right decision. But it felt SO GOOD to get an actual diagnosis so I knew I wasn't just imagining things or worrying over nothing.