I have been spending the last few weeks writing letters. Letters to the state trying to appeal the school district’s decision to not assess TJ for an IEP. Letters to our insurance company trying to get them to cover TL’s occupational therapy. Letters upon letters upon letters. I am doing my best to get my boys what they need, but I still feel helpless.
I don’t feel like I can really help my boys. I tried, unsuccessfully, to teach them both to speak. They both needed therapists in order to accomplish that. I try to understand the head banging, spinning, and thrashing, but I need occupational therapists to explain why my boys are doing that. I try to teach TJ how to read social cues, but he just doesn’t get it. He needs more. They both do.
At times, I have 6 different professionals telling me what to do to help TL. That’s 6 noses in my business, in our family, in our home, telling me how to raise my son. And people think the “suggestions” from in-laws are intrusive!
Sometimes, autism just paralyzes me. I second guess my mothering skills. I throw my hands up in disgust. What can I do to help my boys?
I can fight. I can be their voice. I can be their advocate. I can…write letters. And I can make phone calls and I can research special education law (not an easy task, but I’m up for it).
But is that all I am for my boys? Am I just the mommy warrior? Sometimes I feel that way. Then, Saturday night, I get an email from the supervisor on TL’s therapist team. She wrote:
You have been so incredibly supportive and patient throughout the months and the sometimes not so smooth transitions and glitches on our part! It is so nice for the therapists to be able to work with a mom who is so dedicated and kind. Until I'm a parent, I don't think I'll be able to fully appreciate the toll [TL’s] therapy, OT and preschool schedule must take on your family, but it is clear to see you somehow manage it all as [TL] is always happy, serene and ready to go!! It is always wonderful to see this!
I do that? I make it is easy for them? For him?
I may not be able to take a hands-on role with my children’s development—that may have to remain in the hands of the professionals—but I help to keep all this running. I help make sure the boys get their downtime, their mommy time, their daddy time, their brother time, their social time, their church time, and their therapy time.
I couldn’t do that without God. In the words of Apostle Paul: “I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength.” Philippians 4: 12-13.
