Guest Post: Each Day by Beth

The Musings of a Mom with a child that is blessed, not lesser...

Each day, our family wakes up to go thru the motions of a normal morning. Get ready for school or work and go thru the day like any American family. Every morning I awake and stay in bed while my husband gets up first, so we don’t bump arms in the bathroom. Whilst laying there and saying a prayer for our day as a family. Somedays God listens and somedays he challenges us. I pray each morning for the days to come and for the future of my beautiful son.

Some days I worry that God isn’t listening. You see church isn’t always something that our son can handle. Then I ask will our son find God, or does he get in to heaven because God knows he cannot comprehend him love for him. School is a great challenge for him also… to many noises…too many distractions. He is bullied every day for being different and it is not his fault. If anything it is mine.

I struggle each day as a mom and feel the failures of the duty of raising a son who is often thought of a lesser person. Sometimes I wish for easy days and an easier life for him and us. Not always feeling good at being a mom as I cannot relate to the things he likes but try anyway. But, he still tells me I’m a great mom, on a good day. I know that I make mistakes, every day.

No one understands this life, because every child is different.

When I watch my son pace the floor because he says it says it helps him to calm down. I watch him stem (clenching of his arms near his head) while playing video games, because he wants to play and that is how the anxiety unleashes so he can get through the level. We watch his anxiety go through the roof because he is doing homework and can’t tell us what he did in class that day to complete the assignment. When we look at another failing test score because he can’t retain what he’s learned.  Or we watch another meltdown, sometimes small but mostly great.

We worry immensely about his future...

I smile when we watch him learn how to fold the socks a special way, just for dad. We smile when he wants to help us build something, and he loves a home project (most days), but can’t keep his room clean because the Lego’s are in a certain order. We feel blessed when he stands up at his first rock concert to see Fall Out Boy, and he’s singing and dancing to his favorite song. Then he decides he wants to go see Phantom of the Opera because he loves musicals and wants to take mommy on a date (BEST NIGHT EVER).

I am immensely sad when he isn’t invited to a birthday party for a friend, and wonder if his thought of someone being his friend is one-sided.  When some of our closest friends don’t invite our family over because they are worried about how our son will act, or if it is too hard. When our own family doesn’t ask us to come over for the same reasons, and they always use some other excuse. The children he plays the best with are children like him. They understand and like the same things.

We trust the thoughts of the endless doctors, therapists, counselors and educators. They see this all the time, right?  Wrong, because each and every child is different. He could have a year of balanced medications only to have them go crazy in his system and then we have to start over again. Then we watch his weight go up and down due to the changes, and watch him fall asleep way too early. The truth is, the doctors don’t know either. They’re only guessing and trying to control him for us, so that we all can make it through each day.

I have so many goals for my life and step forward each day to achieve them. Fear is an ugly four letter word; he sits on my chest with each day and hour. Fear for my son’s future and tomorrows. When he tells us how hard it is each day to be him, and that we don’t and won’t ever understand. Fear and heartbreak go hand and hand.

When my husband and I don’t know where to go next, we both cry and mourn for the loss of your son’s future.

What is next for us?
What is our son’s life going to be like?
Will it always be like this? 
Why my Son?

We both curse each day and wish the words Autism were never spoken.