I really am struggling. I feel kind of bad, because I have recently become aware that there are quite a few local “autism moms” who read my blog and find it inspirational. I don’t feel like an inspiration right now, I feel useless. I feel like I’m doing it all wrong. I feel discouraged. I feel exhausted.
This is all about my fear for Nathan. My limitations when it comes to helping him. It’s about the fact that at age 3 and a half he is entering his third year of formal schooling. It’s the memory of that first teacher telling me that I wouldn’t recognize Nathan in 6 months, that his progress would astound me. Here I sit. Still waiting. I sat down and really read his IEP update from the extended school year last night. He is meeting only one of 6 goals- receptive language, per the speech pathologist (who ironically is the daughter in law of Jack’s kindergarten teacher- the teacher emailed me to tell me how cute her DIL thought Natey was). The biggest issue is consistency. Even if he does something fabulous, getting him to repeat it is impossible. I know this. There are days that the words just flow, and then nothing, sometimes for weeks. I know what it is. It’s the “noise” as I call it. He can’t focus; the need for stimulation is so intense, especially tactile and visual. He constantly wants us to squeeze him- his arms his legs- he will take your hand and place it there. If you do it “wrong” he moves your hand back, as in, try again buster. He waves things in front of his face at every opportunity. He figured out that our mail is kept on a washstand by the front entrance of the house and has taken to shredding it so that he can dangle the paper in front of his face. He has a “Woody” doll that has been getting a lot of attention- it’s because its arms and legs sway when he puts it in front of his face. He goes after toilet paper, paper towels, napkins, leaves, grass, anything that he can dangle in front of his face. If none of this is available (and God knows I try to keep it away from him) he now uses his fingers. Several people have said “oh look he learned to wave”. I want to smack them and say, “No moron, it’s stimming”. Once again- grace. I smile and nod. If that’s what they need to believe then so be it- I don’t have that luxury.
If we could calm the stimming he could make progress I just know it. That’s why I have tried the diets, the supplements. Why I haven’t given up, why I keep adding them. For the past two years. To be honest, today I feel like giving up. I gave him nothing this morning for the first time in years, and I know it won’t matter. We STILL don’t have the mitochondrial cocktail, as Nate’s doctor needs to call it in to the new compounding pharmacy and hasn’t yet done so. I spent 20 minutes on the phone with him again this morning- what was I doing? Reading him what is in the cocktail he wants Nate to have. Because he didn’t know/remember. I’m ready to throw my hands up and say never mind; ready to give in.
But something made me make the call to his doctor anyway. In the midst of all of the frustration and hopelessness, I found the motivation to call him again, and give him the list yet again. And I will give the supplements to Nate tonight; he missed one dose, big deal. I will keep on going. Even though I am ready to quit and spending more time watching Nate with sadness, feeling more grief, than ever before. My actions are another reminder to me of the strength of a mother’s love for her child- all of this work is just an expression of that love- and confirmation that love is indeed a verb.