When my son was born, he was in a really poor condition after being starved of oxygen. Diagnosed with HIE grade 3 (hypoxic ischemic encephalopathy), he spent 14 days on NICU. I remember, everyday I would sit at the side of his incubator and hum 'You are my sunshine, my only sunshine, you make me happy, when sky's are grey... (Here comes the part that meant the most...)
'Please don't take my sunshine away.'
We were told during our NICU stay that Aj would more than likely develop cerebral palsy as he grew older if he survived coming off his life support machine. We learnt to deal with that, we were prepared.
We had a couple of months to get our heads round things before we saw any real 'effects' of the cerebral palsy, like muscle spasms and cramps etc... So none of it came as a real shock. But when Aj reached around 18 months old he changed.
He wasn't the happy, smiley baby he used to be. He wasn't sociable anymore. He stopped smiling.
He lost the ability to wave. He actively avoided eye contact. He wouldn't play. He lost his words (I miss his beautiful voice so much).
Where had my baby gone? My sunshine was fading away.. Why? What was happening?
It took a couple of months before we first overheard the term 'ASD'.
Long stressful days full of upset and confusion. Why couldn't anybody give me answers? It took until Aj was 36 months to get an official diagnosis, a whole year of unknown and constant googling (I should really stop googling...). A report from the appointment listed - Severe autistic spectrum disorder with complex sensory needs and global development delay. Add all that to the four limbed spastic cerebral palsy and GERD and he can become a bit of a handful!
That was a kick in the gut - severe autism.
Being told he would only become more complex as he grows, he's going to get bigger...Stronger. The thought of possibly not being able to handle him one day terrifies the life out of me. Almost two months after the diagnosis I'm starting to come to terms with it and I'm slowly seeing my sunshine return, just in a different way.
His own unique way.
Some days are much harder than others, you see Aj doesn't sleep very much, add that to the constant stimming and need for supervision it can wear you down pretty quickly. Some days he can be so calm and relaxed, others he can be in meltdown mode all day, those are the hard days where you struggle to see his shine.
Although, I think Aj losing skills like waving and talking has taught me to appreciate the little things much, much more than I already did. Everything was always a big deal because of his rough start in life but now things are different, a lot different. We've gone from being able to shout "HIYA" and saying his own name to one or two second eye contact and a hand gesture to communicate with each other.
But we'll get there.
Aj is slowly regaining some social skills, I can even sometimes grab a quick cuddle! Although he still doesn't like new people, crowded areas, loud noises or anything else that can over stimulate him...His shine is slowly coming back.
Every day I worry things will change again, I worry something's going to come along and take it all away again.
So every day we still sing, usually when he's asleep on my knee, I whisper to him 'You are my sunshine, my only sunshine..', 'Please don't take my sunshine away...'
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