So there was some news I received on February 23rd. It seems like this news shouldn’t be a surprise, but it is. My baby boy, my one and only child, my reason, was diagnosed with Autism. It was only about two months ago that as I sat and watched a documentary on Autistic children, I felt a smidge of disconnect from this reality. I’m not sure if I’m in a surreal place, in shock, or in denial, but the reality that your child has a debilitating disease that greatly delays his capacity to fully learn and function like a normal little boy, it is still quite unbelievable.
Autism is medically recognized as a disease, not just some phase I assumed would pass. I equate this diagnosis with knowing that my mother was dying while she was ill. However the day she died hit me like a train. The anticipation of tragedy is not the same as tragedy happening. Over the last 4 years of Caleb’s life I have gone through seasons of saying he was speech delayed, to then calling him a special needs child, to now officially saying the word Autistic, well it is much more than a little challenging.
After a few years, many rounds of evaluations, and several wait lists, having gone through all that effort I now feel like I’m back at square one. I must figure out how to juggle it all. There’s taking care of Caleb’s daily needs, which is equal to caring for 3 children. Then there’s my job, and my general responsibilities. Now I will somehow need to incorporate the additional therapies that Caleb will need to get him to basic functioning.
My support system compiles of professionals, a few friends, no relatives. I have more balls in the air than I can juggle. If you look up the word overwhelmed I’m pretty convinced you will see a picture of my face. Every day is challenging. There’s no way to even attempt to explain how complicated our lives are. Simple tasks are complicated when a child in a 5 year old body functions around 18 months old. This is our reality. However, there are some glimmers of hope that I’m coming into. I am making plans and taking steps.
To see that glimmer I had to go back to my foundation. Even when I don’t really feel this, I truly believe that all things are working for my good. I believe that we, Caleb will, and I will, have a testimony through all this. A glorious one.
The next step I had to take was to applaud myself. Time out for playing down my efforts, which is my nature. I had to give myself a few rounds of applause for getting us to this place. Through this process we have traveled in the dead of winter on buses to take steps for Caleb’s care. There were those days when pennies were being pinched, and illness and physical pain was being pushed through, and heartache was being overlooked to get my son what he needed. I only saw his future as my focus. The effort that maintaining Caleb’s needs as my primary focus is something I can’t adequately explain. I can only say that chronic fatigue has become a new normal. And finding creative ways to sneak in moments of self care has become mandatory. I can take a 3 minute nap in the middle of any task without hesitation.
I am grateful however. Everything is not glum. I cant afford to not notice the good. I am grateful that I have a joyful little boy. Some Autistic children are not cheerful, but Caleb is. I’m grateful that although his father never even inquires about him, let alone supports him, we have had had many doors open for us.
I’m also grateful that I had the courage to walk away from relatives who taunted us and compared Caleb’s abilities to other children in the family. To turn from relatives who claimed that Caleb didn’t have special needs at all, that I was somehow making these claims to gather sympathy. I’m not sure if there are words ever spoken than cut deeper than those. Other than maybe the relatives who blamed me for the disability altogether. It having to do with my lack of parenting. There is so much heartbreak, so much rejection, so much that I have had to go through while still taking care of Caleb.
On the days I didn’t want to get out of bed, I did it with the mantra, “I’ve gotta do it for Caleb.” I’m a good mommie, and I know it. I have been determined since Caleb’s conception to make each and every choice according to what best benefited him.
I am grateful in my faith in God. I don’t know how people function through life without the Lord, I really don’t. I can pinpoint a few times I would have lost my mind if He wouldn’t have kept it. Jesus is much more a credit than an American Express Card, I can never leave home without Him. I’m grateful that He continually gives me strategies on how to care for Caleb in his present state, while standing on healing for his future. I know that God is going to honor that special dedication for my special baby. It’s been an honor being Caleb’s mommie. He may have special needs, but I also need him especially.