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derailed

All day, I’ve been blogging in my head about mothering a daughter. But as soon as I sat down at my computer, all those thoughts became derailed. I found myself going back through emails about Ethan, and researching resource sites. I’m tired this week, and it’s been a blah week anyways. It is in these moments that I find myself struggling the most with Ethan’s diagnosis.

Things are still pretty status quo for him. He has reached a relatively stable place, and stayed there for a few months. But he’s been in a routine for six months now. For him, stability is “normal” in that situation. We have 15 school days left, and then we will get completely out of this routine and into a new one. I will admit, I am anxious. Last  Summer was such a complete disaster with him. While I’m excited for non-rushed mornings, no homework battles, and a long-planned-for vacation, I dread what may come. Anticipation is usually, in my experience, worse than the event itself. But with Ethan, I’ve found my anxiety is usually warranted. So I’m anxious. I am fearful. I’m letting myself feel defeated even before we’ve begun.  In some moments, I find myself wishing we could fast-forward to the end of August where he’s back in school in a familiar classroom with a familiar teacher in a familiar routine. That way I won’t have to face it.

I was once again struck this morning that while we can take him to therapy and we can help him, this isn’t going to go away. He will learn how to manage better. He will mature. His “weaknesses” as a child may develop into strengths which have the potential to make him successful as an adult. But he will have to fight.  He will have to work hard. His path will never be easy. That is what breaks me. Some moments I look at him and completely fall apart. My beautiful child….most people can’t see what’s amazing about him because they cannot get past his social and emotional challenges.

We’ve had more new people come into our life in the past couple of months. Sometimes I find myself looking past their “looks” because I just don’t feel like explaining, or because Ethan is there and I know he will start to tantrum if he hears me talking about him and why he is the way he is. Other times, I just point-blank tell them he has an autism spectrum disorder. I have yet to find a happy medium. I’m not good at this. And when one woman apologized in a sympathetic way after I told her why he was refusing to respond to her attempts at conversation with him, I was completely stumped, and even more sad. I was happy with myself for just laying it out there, but her sympathy made me sad for Ethan.

He has had some really good days, really good moments in the past couple of weeks. When he’s having a good day, it’s hard to believe we ever have bad days. I see his smile, or hear him talking excitedly and I get so happy.  I watch him engage in a conversation, or witness that amazing belly laugh, and I want it to last forever. Our family  has moved in to this new “new normal”.  And yet I still have my days of wanting to bury my head in my pillow and cry my eyes out.

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