Recently, I saw a tweet from a woman with no kids of her own, much less a special-needs child, who said;
“There is no excuse for bad parenting. You say, ‘There isn’t a book for that’, but there are like literally thousands. Just read and do what the book says.”
Her tweet had thousands of likes and affirming comments. Let me tell you- it took every ounce of strength in my bones to not reply with anger and snark. Instead, I blocked her without comment and prayed for her. No book, I repeat, no book, can prepare you for the labyrinth of paths, feelings of powerlessness, and debilitating sadness that sets in when you don’t feel like you’re enough as a special needs parent. Seeped in feelings of helplessness, it’s so tempting to despair, to throw in the towel, and say, “We’ve tried everything!”
Today we got one of those send-you-to-your-knees calls from Luke’s school.
“Luke is a different child since he’s been back at school. I was calling to discuss his home life. He is very unhappy.”
There’s a sentence that no one wants to hear as a parent, much less an autism parent. It meant that all the ABA therapy, psychiatrist visits, cognitive therapy, countless conversations, and never-ending days in survival mode were not working.
I felt those feelings and wept like a baby. But God never abandons us. We got in touch with Luke’s school counselor, who told us she has a plan. Another road.
There is always another route. God sees your patience and hard work. He sends people to this Earth who have a heart for your plight and the resources to help you. We must be open to networking with others to see the possibilities.
“’ Why do you stand here idle all day?’
They answered, ‘Because no one has hired us.’
He said to them,
‘You too go into my vineyard.’”
I must confess I never understood this gospel until today. It did sound unfair that those who labored all day made the same amount as those who worked only an hour. But if that’s all we see from this passage, we are missing the point. Jesus is telling us to hope. No matter how late you are in a plan, or on the path you “should have been on all along”, He fills our hearts with the same Grace. He provides the same amount of love to us. This passage is a message that is particularly relevant for autism parents.
I cannot tell you how many times we have woken up to a new plan for our son, and like newlyweds the morning after their wedding, gotten up with hope so fierce, it was almost tangible. Then two months later, our hopes were dashed as our son was worse off than he was before. The cycle must start again, hopelessness rears it’s ugly head, and it’s tempting to feel like “We’ve done it all! What more can we do?”
Our son was with a helpful and kind psychiatrist, but she didn’t specialize in autism. She was recommended to us by his pediatrician. It was she who diagnosed him with high-functioning autism. But unfortunately, she also prescribed him too much of the wrong medicine, and when it got to be too much, he started thinking suicidal thoughts last summer. Two weeks into his mental hospital stay, she called to inform us that she could no longer have Luke as her patient. We had no psychiatrist, no therapist, a new medicine from the hospital, and no direction whatsoever.
It seemed like we started the doctor/therapist hunt during the busiest time for their profession, probably in the universe's history- July of 2020. Calls upon calls. Messages left. No returned calls. Google searches. Insurance searches. Nothing was fruitful.
School was held online for three quarters of the 2020-21 year, so we couldn’t really reach out to his teachers/helpers efficiently. By the time they had in-person school at the start of spring 2021, we had almost no connection with the helpers at his school and we were getting his prescription filled by his pediatrician who understood the circumstances of our therapy/psychiatrist problem.
Skip ahead to today- we have Luke in cognitive therapy, wholly weaned off his medicine, and he is “a different kid” at school (not in the good way). He is also dealing with preteen hormones, which is a whole other factor. Calling my husband today after that phone call from school was gut-wrenching. We talked to the school counselor, who told us a) We are excellent parents b) I know therapists and psychiatrists who specialize in autism c) I will schedule an appointment for you with them d) You are not alone. I can help. We are in this together.
Networking and putting yourself out there are so important as a special needs parent. Google is not enough. Having conversations and reaching out to people is the best way to get a new plan directly addressing you and your child’s needs. Having a community of helpers is essential.
This month, we are finally, after a two-year search, going to our first appointment with a therapist who specializes in autism and a psychiatrist who specializes in autism. It’s a new plan, and there is new hope.
The main message I want you to get from this story is this: every person God brings into your life is a vessel for Him. So, therefore, we must be open to networking and meeting new helpers. It isn’t very comfortable! I was horrified on the phone this morning, knowing I was, yet again, not enough. But we are not supposed to be enough! We are “one body in Christ.” A community!
An open heart, networking with helpers who illuminate new paths, and taking those new routes are ways that God renews our hope. No matter how late you are to the party, He invites you with open arms. He will reward your patience. Let Him help you through others. You’ll be glad that you did!
A native of Cajun South Louisiana, Rachel is a wife & stay-at-home autism mom with 4 kiddos living in Allen, TX. You can find her on Instagram: @rayrayfuss