Yes I'm "One of Those Moms"

When Aaron was first diagnosed, we were devasted and in a state of shock and grief. One of the things we heard over an over again was "all that you can do is help him be the best he can be". Well what does that mean specifically? No one could really answer that one and the other answers seemed grossly inadequate and insufficient to me. I'm sure that the people who said this meant well but it sounds so cliche and many times code for "don't expect too much...do what you can to satisfy your own concience...don't be unrealistic...he will never be normal". So I set out to find out about the specifics of helping Aaron "be all that he can be". It was quite nauseating hearing this from the professionals all of the time. It was their way of telling you they didn't expect much but not coming out and saying it and not giving any specifics on anything. Mostly because they did not know and the current prognosis is so poor, I don't think anyone of them wanted to give it to us straight. I remember the doctor that gave me the diagnosis say that the information available on the internet would probably be terrifying to me. He dismissed it by saying that every child is different, but they all say that. Another, very highly respected and recommended doctor told me "not to try to make him normal" or I would just frustrate myself and him. So I'm not already frustrated not knowing what to do to help my child? I asked what we should do to help his cognitive development, he said not to worry about that now. Aaron was 3 months old but I knew immediately that we would have to be proactive and diligent about any help that Aaron would receive. I knew in my heart he was being written off because he had a chromosome deletion and I was being written off as a mother in denial. Yes, I am in denial that just because my son will probably not ever be "normal" that there is no hope that he can do and become more than traditional medicine has sentenced him with. In prior posts I talk about ABR, G-Therapy, HBOT, ABM, FHC, & Masgutova. It seems like a lot and it is. There is no magic pill or bullet to replace Aaron's chromosomes or "cure" him. But we do believe that he needs a lot more than PT/OT/Speech to routinely given to children with disabilities. Don't get me wrong, these services are invaluable to most children and we would have been totally lost without our early intervention program. But it seems that its expected that parents would just accept this cookie cutter approach to every child's needs and I just think we owe it to Aaron to investigate any and everything that may help him. Other therapies are dismissed as "alternative" but every form of medicine was "alternative" before accepted as the normal accepted practice. After many years of clinical trials, research, experiments, etc, they became the norm. None of these "alternative" therapies hurt or bring pain to Aaron, so we feel they're worth a try.