My super duper baby turned 5 this week. Her cousin had a birthday the week before, and my daughter received her lovely presents at that birthday party. I didn’t throw one. I am not sure I know how to any more. This is the age when tears start to come, and grieving begins, for me. When I was her age, I was already reading. While I can’t be sure she doesn’t read (she identifies letters, and sits for ages looking at her books very intently)- she is still nonverbal, and I’m still not a part of her world. I keep wondering where all the time went, all the time I was planning to do all her therapies and work with her. I have days where I want to sit down and work with her, but I know we don’t exactly have a food safe kitchen. Hours pass while I try very hard to make a dent. She comes for attention, and grabs my hair. I hear the advisor from my old LEND (Leadership Education in Neurodevelopmental Disabilities) program discussing how parents just aren’t proactive enough about their kids’ misbehavior when they’re little, so it escalates as they get older and it isn’t so cute any more.
The truth is, I want her to touch my hair. I have nothing else with which to connect with my daughter, and she has no way to connect with me. We used to use a communication board on the iPad- but she didn’t have 24 hour access to that. So we got an iPad that she could always access–and then she wanted nothing but the games. Eventually, she found that her communication app was a great place to stim on mommy’s prerecorded voice- and that was the end of functional iPad use. I worked so hard to give her early access to these things. I was a proactive mom, she was a precocious dup15q child and ahead of the game. Somewhere, though, life got in the way. The signs she knew are gone. I can tell she knows what they mean. She doesn’t use them.
The year she turned two, I thought I was being proactive, and got her an autism diagnosis. I called around and found an autism school in the state that practiced the Early Start Denver Model. They said that, by the time she got in, she’d be past three years old, and they wouldn’t have enough time to work with her before she turned 5 and the skills were inappropriate for her. I decided to work with her on my own.
The teachers have had the same struggle we have at home. They will do a skill one week in therapy, only to have it disappear for weeks and months.
I just don’t know what to do. “It didn’t generalize, is all. She hasn’t lost anything-” the specialist at Memphis tells us. Really? You mean to tell me she learns a method of communication that works at school, home, and grandparents home, with a variety of adults, and it’s not generalized?
I’ve failed. School gets her next year. Time will pass. She will become just another autistic kid with parents who failed to try. I wish I were good enough to homeschool her. I just want time with my loving child, the quiet one. She is 5. She has fewer skills than she had when she was 2. Some of me wonders if, the way she knows letters, but we work on pointing instead- if she doesn’t see the point anymore. She tried jumping through the hoops when she was little, and it was never enough, and it’s never what she’s interested in. School will love her, but they won’t have the individualized time to know her like I do. I wish they did! But I don’t know if school can ever engage, or challenge, her, because she’s so stubborn about the things that look like her mental age, and none of her functional skills approach the thing she’s always been interested in- music and books. But anyway, she’s five, she’s missed so many windows, and I don’t know if I’ll ever get them back