About 6 weeks ago we heard the term ASD (autism spectrum disorder) used in relation to our Mareto. Then it was a strong suspicion by a highly trained speech therapist. Today it was a diagnosis. A confirmation from a doctor who specializes in children with autism.
The last 6 weeks have been hard. A lot of changes have entered into our daily lives. Mareto is in therapy regularly and his little world is being rocked. This is a hard season – the initial part where everything in his system gets turned upside down so we can learn how he works and how to make life better for him. This is the part where everything is a battle and he doesn’t understand why.
Right now my days are spent in ways I never imagined. I sit on the floor in Barnes&Nobles in front of a bookshelf labeled “Special Needs Children” with a pile of 20 different books laying next to me. Books about autism, developmental delays, and sensory integration disorders. I’m trying to learn this new medical language that now suddenly applies to my son. I stay up until 1am reading about how I can best help him grow at home. I reorganize our living space and start labeling plastic bins ”sensory toys” and “motor development toys.” I swing him in the rocker for 10 minutes before every meal and pray that he’ll swallow his oatmeal. That whole “if they get hungry enough they’ll eat” opinion? Yea, doesn’t apply to children with autism. They won’t until you fix the main issue which for Mareto is his sensory system. Today’s appointment showed that he has lost some weight… not a lot, but he’s dropped nearly 20% on the growth chart for weight. We roll a medicine ball over his body and give him “squishes” before bed… praying it will calm him enough to give him the rest he needs. “They’ll sleep if they’re tired enough…” again, doesn’t apply to children with autism. If we don’t make it all okay in his little body – make him feel comfortable, safe, and secure – it doesn’t matter how long he’s been awake… he will not sleep.
So we read books, pray like crazy, ask lots of questions, and try new things… anything that will help. I try not to worry about how this will look 10 years down the road. I try my hardest to focus on the good no matter how rough our day has been. I am learning that it’s okay to give myself a break. I realize all of a sudden this means that I’m not a terrible mom… that no amount of discipline will change his quirky behaviors (in fact it could make it much worse). So maybe I’m doing an okay job after all. I’m realizing it’s okay if we need to leave church early or stay home from events. I take a nap a little more often… even if it means I have to sleep curled up in the crib next to my sweet boy so he feels secure enough to nap.
And I cry. A lot. These days my emotions are just ready to spill over at any given moment. It’s a lot for my heart to take in. I miss my daughter and that alone is enough to make a mama raw. But now I ache for my boy too. I wish things weren’t so hard for him. I wish the world made sense to him and that he didn’t get so overwhelmed, confused, and frustrated. I wish I could magically make it so that everyone in the world was educated about autism… so that we would never get judgmental glances and so that others wouldn’t automatically assume the worst of him. I can’t change these things though – but I can fight my hardest to get him the help he needs. I can work everyday at home to learn how he operates. And while crying doesn’t change anything … it sure does make me feel better sometimes.
At the end of the day he is still just Mareto… my sweet boy. The same sweet boy who stole my heart the moment I saw his picture for the first time. The same little boy who made us a family the moment I scooped him into my arms in Ethiopia. The same sweet boy who does things that make me laugh in delight and who hugs me tight every day. He is still my boy – my wonderful, sweet, smart, delightful little boy. I can’t wait to see what God is going to do in his life — because he is amazing. And at the end of the day… that’s all that really matters.
(therapy in the “cuddle swing”)
(throwing balls against the wall)
(mama got to get in on the therapy this time!)
(ball pit therapy – waking up his sensory system)
(feeding therapy — lots of tears for this)
(newly organized toy area: motor development toys, sensory toys, music toys, cars, balls, pretend play toys)
(only being allowed to have one bin of toys open at a time makes for a much happier boy and more productive play time!)