About 3 years ago when we first heard the words "autism" in relation to our son, I started on this weirdly slow grieving process. In those years I've somehow gotten stuck on the 4th stage- sadness and depression- and can't seem to move beyond it.
Every time I speak to my child and receive a blank stare, every time I have to repeat myself 6 or 7 times, every time I see him reach out to another child only to be ignored or turned away… I beg God to take this away. I beg Him. Multiple times a day. He is only four years old but the difficulties he faces and the struggles I anticipate in the future are so great they take my breath away. I am so incredibly fearful of the future. I know that I cannot protect any of my children from rejection or hurt- in other words, the world!-and that some of those experiences are necessary for development. But I fear that my sweet, loving child will be subject to so much more than he deserves. That he will be overlooked b/c he doesn't grasp an idea quite as quickly, that his quirks and tendencies that we find so special will be a joke to others.
In my short experience, this is by far the most difficult part of parenting. Letting them loose into a scary, judgmental world.
There was a day a few weeks ago when I was reading my Bible and asking God for the millionth time "why?". I'd started to pray that He would use Eli's autism to bring glory to Himself, instead of taking it away. I felt like a liar when I prayed it. I said the words b/c I felt like I needed to move on, but my heart wasn't in them. As I sat there it occurred to me that I've never had an issue in my life that forced me to go to God for a solution. Generally when difficulties arise, I'd say a quick prayer for guidance, and then go seek out a "practical" solution: I'd see a counselor, take medication, research the issue on the internet… but at this point in Eli's diagnosis we have done everything there is to do. We've made dietary changes, we've had testing, we've gotten the top-of-the-line medical care, we have 3 different therapists 3 times a week… At his last appointment in Baltimore the doctor said "just keep doing what you're doing". For a moment it felt good.
Until the next blank stare.
I guess that I've reached the point where I know that there is nothing I can do but have faith that God has a plan for this diagnosis and for my son's life. I know that he does, and I know that it is far greater than anything I could ever conceive. Writing that still feels discouraging-I'll be honest. Some days I'm 90% there, days like today it's more like 10%. I just have to keep telling myself what my head knows is true despite what my heart feels.
I found this blog a few weeks ago, authored by the mother of an autistic son. It has been a great source of encouragement to me-she is a much better writer than I am, has a much more mature faith, and so much of what she writes sounds like a page out of my life. Anyways, I read this today and wanted to pass it on: not just for anyone struggling with a disabled child, but for parents in general:
I am speaking for moms of autistic children everywhere...... please extend grace to us! Our children may do or say odd things, throw major tantrums at an age you might think is too old, have obsessions that control our lives, or respond to you in a strange way. A child you encounter in the grocery store may appear like any other kid, but you never know what is happening with that child or his family (I'm kinda getting on a soapbox here b/c this can go for anyone). Please offer grace. Instead of staring, offer a silent prayer for that mom or extend a helping hand. Don't grunt in condemnation, jerk your kids away, or (please, please, please definitely do not) offer advice!! I've had people tell me what to do, tell me in so many words that I was a bad mom, and, of course, stare at me or my child.
What a refreshing blessing it has been when people have loved my son for who he is, who have pursued a relationship with him even though he has made it hard, and who have spoken words of encouragement over me! On hard days, I still call to mind specific words people have said concerning Will. If you know someone walking this road, offer them grace in your interactions with them. Oh, and today might be a good day to offer them a word of encouragement.