At first I thought that everything would be okay because I was going to get him into Early Intervention, DSPD, etc. etc. First of all, it was harder than I thought and I felt like I had to fight to get anywhere. I didn't get far with DSPD because Isaac is still too little.
I have since discovered that mainly it is up to me. As if I don't have enough stress and things to worry about! It is hard tracking how much you work with your child on his development when a day goes by and you realize you have done nothing-specifically, at least. Like today. I didn't work with him on his knees. I didn't do this and that. Then the guilt sets in.
(But, I know I need to look at the positive. For example, we worked on sitting up, playing games, and interacting with others. "Drop of Awesomeness" for ya.)
I can't help but feel that if he fails, I fail with him, if he succeeds, I succeed with him. I guess that goes for any child, but the weight feels so much greater in this situation.
The emotional stress of everything alone leaves me ragged some days. Not to mention that Early Head Start comes once a week for an hour and a half, Early Intervention comes once a month for forty five minutes, Physical Therapy comes once a month for forty five minutes, and they also have other playgroups and such which I never make it too.
I have gone to an infant massage class to help with Isaac's stiffness, though. It was good. I was surprised at how well Amelia did in the sibling day care at that time. Again, I am so proud of her.
Occupational Therapy may not be so far in the future as well. I don't know if I can handle all of it, but I know that I have to do everything I can for him. It's just have to. And so I guess I see my life changing. Once in a while a day goes by that I don't think about Fragile X. Once in a while...
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