I have been an active member of online support communities for 12 years, including parenting support groups, so it seemed natural to look for similar support once my youngest son was diagnosed as being on the autism spectrum. I started out on a listserv for childhood apraxia of speech, and on support forums for sign language (I have to give kudos to SigningTime!) and then moved to lists for dietary support and support within Maine. I came here when Shannon and her husband created this site as a step toward moving the MaineAutism listserv over here.

One reason I wanted to network with other parents is to learn what has worked and what hasn’t – and for the “Maine” connection, to learn what services and experiences others have working with the state, what resources are out there, and what questions do I need to ask. It’s very clear to me that we as parents have to be our children’s biggest advocates, especially for little ones who feel and experience the world in a different way. I have been luckier than most, I think, in my dealings with the medical establishment and with therapists, but that puts me in a good position to support others.

It’s also been a rollercoaster of emotions and it is can be hard to talk to others about it if they don’t have a special needs child. Some people will give condolences or the “poor you” look, but I wouldn’t trade my son for the world – he is totally beautiful, charming, and wonderful. What I want is for life to be easier for him. Others will shrug it off as being no big deal, which bothers me as well because then they don’t listen to even little suggestions. I guess I am hard to please. On the sensory issues especially, I wish people would just take my word for the fact that his mind interprets light touch as pain, so please either don’t touch him or be reasonably firm . . . don’t nod at me and then run your hand lightly through his hair! That simple act of listening and respecting us would go a long way in improving our day-to-day life.

I see Tabaitha mentioned the article in the Portland paper that had quotes from three of us here on FoggyRock. I put myself down as being sort of middle of the road . . . we got to biomedical interventions rather backwards. Our speech therapist suggested Thane be tested for allergies, and that was enough to convince our general practitioner to run a ImmunoCAP (like RAST). Thane came back as a very allergic person, very high IgE levels, with the worst being wheat. We made diet changes first by removing wheat and gluten, and within a week his signing and speech vocabulary blossomed from 30 words to 60! He was more alert – much less “spaced out” – and his disposition changed from a cranky little man to a happy little boy with lots of smiles to share. I came online and found all this information about children with autism having digestive issues and that sparked my interest in reading more, keeping informed, and making decisions about what works for our family.

We are also lucky in the regard that Thane has responded so beautifully to dietary changes, some supplements, and therapy, that we once again haven’t felt like we have had to delve that deeply into biomedical treatment. I’m one of those people taking things as they come, celebrating how far we’ve gotten so far, reading what I can, and keeping the doors are open to trying different approaches.

A friend of mine said it would be so much easier if we had a little clone to use as a control, but since we don’t it is very nice seeing other people’s stories. One woman contacted me and said my son reminded her of her son at 4, but he is 8 now. I watched the videos of her child and it gave me so much hope – hope that we’re doing the right things and on the right path. Hope is wonderful!