It's been about 36 hours since I found out that my sweet 18 month old has sensory problems. I call it a sensory disorder because they all sound one and the same to me. Problems. Disorder. Issues. Now, it is probably not as severe as the word "Disorder" makes everything sound but call it whatever you may, it still left an earth-shattering mark on my heart.
We have always known Riley was a quirky little guy but if you looked and myself and Stuart, you'd understand why. We are pretty quirky. Both of us have OCD tendencies and we are just weird about some things. Why wouldn't we have a weird kid? HAH.
At his 9 month check up, Dr. Jack (pediatrician) noticed something interesting. Riley's weight plateaued from his 6 month-9 month mark.
Most babies do encounter a plateau but it is usually later and it goes along with the milestone of walking. Riley was definitely NOT walking and he in fact, was drinking less milk...but we all thought it was coz he was full! He was eating rice milk and Stage 1 solids so of course it made sense that he would not want more milk.
This discovery led to many long and winding roads, of which I am too exhausted to recount. I guess the most significant road was getting in a program called BabyNet, getting rid of non-helpful people in his life, and through a referral, discovering that he has "sensory problems."
At first I wasn't scared. I was simply answering questions. All of them were YES.
Does he hate being changed?
Yes.
Does he stomp when he walks?
Yes.
Did he skip crawling?
No...but he crawled for about 2 weeks and then walked...
And the list goes on. All of these things which seem pretty normal and sometimes even regarded as intelligence ended being a perfect storm of sensory problems.
The reality of it all hit me when I dropped him off at school (after he was diagnosed) and was alone in my car, driving to work. The realization that my child's world has been so difficult for him, that his future even, may be difficult for him and that I had No clue...was heartbreaking.
I thanked the Lord for answers and I felt the Holy Spirit envelope my heart as I stifled my cries. I felt like I had been holding my breath for so long and I could finally let everything out. Every fear, feelings of anxiety about his future and feelings of inadequacy. How in the world am I supposed to handle a sensory disorder?
My day was a long blur. Each time I explained it to a new person, more revelations came. Why he has meltdowns when his arms cannot find his sleeves...why he hates it when I put lotion on his arms...why he doesn't cry when he bumps his head really hard on my knee or head or arm...
All I wanted to do was completely crumble into Stuart arms. But of course the Father wanted me to go to Him instead. As I continued to process everything in the comforts of my bed, I was thankful to be texting a dear friend. She has a way of encouraging me and reminding me of promises past. I was reminded of Riley's namesake. It means valiant and strong. And once again the promise that "he will fight" that the Lord whispered to me during my 8 week ultrasound, was renewed.
So as much as I am praying for Riley to "be bold and courageous" I am praying that for myself. I don't want to be overwhelmed by feeling sorry for him but I want to extend as much grace and mercy toward him as I can. Something that is SO hard for me to do towards others...so I'm definitely already seeing the Lord prune me.
So the journey of messy play begins.
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