Today was really hard and sometimes it's even harder to explain how I feel to friends and family. I spend a lot of time reading blogs of other moms in the same situation as me and tonight I read this posting from http://realityofautism.blogspot.com/. I sit here and cry because I totally understand how this mom feels and she's been doing this for over 5 years now. It scares me, but at least I know that I'm not the only one feeling this way. I want to post it on my site because it basically sums up my struggle right now.
Thursday, May 14, 2009
I've been on this autism mom journey for at least 5 years now. My son is 7, but we started his treatments at age 2. I can hardly remember life before autism -- now it consumes me. I'm on a constant quest to read the latest treatments, causes and cures. The push to "fix" him of autism always burns within me. It's not over yet, but I'm starting to wonder what it would be like to have another passion. Yet, I can't go there until my son is in a better spot.I never thought I'd tire of this fight to find him the "right" cure or therapy. I spend at least one hour, sometimes up to three hours, a day reading about biomedical interventions that might work or the latest research on autism. I subscribe to four list-srvs of various autism parent groups. I get constant e-mails from other parents of what they are trying and whether or not it's working. Most of the time, I find this journey to be so beautiful -- reaching and connecting with my son. What more could a mom want to achieve? But, lately, I just feel less within me to give to autism. I still have energy to be his mom, but I wish I could just be that -- his mom. Instead, I have to put on the hats of behaviorist, medical expert, insurance fighter, educational advocate, vitamin dispenser, speech therapist and autism researcher. At times, I wonder if he even gets enough nurturing from his mother. By the time I fill all the other roles required of an autism mom, I don't much feel like just being in the moment with him. I wonder what I used to be passionate about before my autism journey began, what it felt like to not have this on my mind 24/7. I sometimes miss my old self. I'm so grateful when people do want to know how my son is doing, yet miss how people used to talk to me about politics or sports or something light. Now its, "how is his speech?" "Are the b-12 shots working?" "Do you do the gluten-free diet?"Don't get me wrong, this journey has had more gains than losses. I have learned to love more deeply, appreciate life more fully. I just never thought I'd reach burn out level -- and it makes me feel so guilty. How could I burn out of healing my own son?