I Never Stop Grieving...

As you can see, I haven't written in almost a year. It seems that I come to this blog only when I need the therapy as a mom. For me, writing is my autism therapy. I've sat through hundreds of hours of therapy for Dylan. But, for myself, I usually turn to writing.

The thing about autism is the unknown that never really allows you to grieve. Where will Dylan end up? How will this all end? Nobody knows. At school every year, they ask me what I forsee for Dylan. Every year, I give them the same answer, "I don't think that far ahead for him, I just take each day." And they probably hate that answer. But, it's the truth, because how do I know how far his brain and abilities will reach?

And so with this unknown, there is never really one grieving time and then you are done. You never know when the grieving will hit. It comes up and hits like a storm, distracting from all the other events in life. I grieve what could have been. How we could be out playing football or basketball instead of sitting outside speech therapy. I grieve how we could have had the sounds of other boys running in and out of the house who are his friends. I grieve for having to watch Dylan experience such heightened anxiety over the tasks that come so easy for others. Right now, I grieve for the conversations that we could be having. I should be talking to my 9-year-old son about books, girls, bullies, changing bodies, sports. But, instead, we joke about having a giraffe in the house or how we won't have any cats till 2022.

I grieve that my journey as a mother has been so hugely altered by one word - autism. That every choice I've made and every decision has a mother has been attached to autism. I grieve for a more "normal" mothering life. I grieve for having the ability to truly enjoy the outcome of my children, instead of fearing for it. I grieve for not having had time to enjoy motherhood without tantrums, screaming, confusion, OCD behaviors, sensory struggles and more. I wonder why God made my mothering experience so different.

Along with grief comes awkwardness from others. At church on Sunday, Dylan got very very upset when I took away his iPad. He yelled and screamed during the Sacrament and was very disruptive. I finally convinced him to leave after what felt like forever. He couldn't let it go. We sat in the dark in a small room outside the chapel. I thought "why" a million times and then I decided to not let myself go down that path too far. The rest of the day, people at church kept giving me compliments about my dress, hair, shoes... anything but to talk about autism. In reality, they didn't know what to say. That's how it usually goes with grief. People are uncomfortable, so they talk about anything BUT what's really going on.

Being around so many who can't talk about the big grief elephant in the middle of the room is so isolating. I'd rather be in a room with a hundred autism moms. I'm so grateful for the autism moms who have blessed my life along this path. I know we are there to shoulder the grief, laugh at the grief and endure the grief together.

There are weeks like this one where I still get hit with the grief of autism, even almost 10 years into this journey. I still can sometimes wish it away, even after the amazing miracles and lessons and life-altering perspective it has given me. I still sometimes wish I could pull my son out of his trial, my trial, and we could be whole.

I don't write this as my own pity party, though it does help to vocalize. But, I do write it to allow other autism moms the ability to grieve. It's OK to not like autism some days. It's OK to cry, to stay in bed a little longer and to miss what could have been. It's OK to not always want to be an advocate, therapist, special diet chef, health insurance expert, speech practice teacher or any other hat you have taken on to help your child improve. It's OK to stop fighting for improvement and just have feelings for a few days. I know I've felt that if I stop to grieve, then I'm taking time away from my son's improvements. If we don't stop, there's nothing left to give.

As always, you get up again and usually can see the miracles in this journey. Last night, my son FINALLY said a prayer without any help. Dylan prayed, "Thank you for our family. Please help us not to get sick." He generated his own ideas. We all jumped up and down in happiness. Even his little sister jumped out of her seat and gave him a high-five. And I'm grateful for those moments that I can know the pain and the joy that comes so immensely at times from raising a child with special needs.