As Tyler gets older, I marvel at how I can have a full on conversation with him. He's not even two yet, but somehow we can talk about the things he likes in a book, his favourite numbers and letters, what he did in his diaper and how he is feeling.
I have been solo with Alanna this week since her mom is away with Tyler, so there's been lots of good daddy-daughter time. Despite all this time with her, I miss her. She's been withdrawn lately and very hard to engage. It has felt like it used to two years ago when she was there but it was like I wasn't in the room.
I can interact with her, but there is a lot of prompting going on and it seems so forced. This isn't always true - usually she is more engaging and it is easier, but not lately.
We went to the pool today because Alanna usually loves swimming and it's great exercise. We both had meltdowns... her at the pool, and me in the parking lot after the pool. She wouldn't give up her blanket and I think was just too anxious today to venture in (this is highly unusual). So we sat and watched the kids swimming for about fifteen minutes, then left. She was frustrated, I was frustrated. Going to the pool is a hassle and I felt like it was a waste of $10 and driving there and back.
While I was cradling Alanna I watched all the other kids and thoughts crept into my head.
I wish Alanna could be like that.
I wish she could be normal just for this afternoon.
I wish she could talk to me.
I wish she didn't get anxious.
I wish I had my daughter back.
Some parents have this whole "autism is a gift" thing going. I am just not there. I choose to fight autism because I do not think that the world is suddenly going to wake up and bend over backwards for people with disabilities like Estee Klar. Instead, I want to equip Alanna to be as independent as possible while still being herself... indeed, the job and goal of any parent.
Today, for a few moments, I stopped looking at my daughter as a person I loved and instead looked at her as a disabled person. When I realized in horror what I was thinking, the guilt kept on coming. Because if a girl's daddy can't recognize her as a person with strengths and talents, worthy of love and with something to contribute, then how will the world treat her? It was only a few minutes, but those are thoughts that should never enter my head.
I wish I could stop wishing she didn't have autism.
I wish I was I better parent.
I wish so many things.
Hello,
ReplyDeleteI have only recently found your site (in the past few months). I feel like we are living identical lives at the moment. Our son is non-verbal like your daughter. We can only take it one day at a time. Thank you for your posts and wealth of information to a parent of a son with a recent diagnosis of ASD.
Be gentle with yourself. I think it's normal to want life to be easy for our children. Wishing that she could have an easier time sharing the simple joy of a dip in the pool doesn't make you a bad dad. You're just a normal human being doing the best that you can for your daughter. Hang in there.
ReplyDeleteMaybe autism can be a gift for the parent in some ways - but that does not mean you dont fight it. Autism is a gift and a curse for me. It makes KHaleds life very hard and he is so frustrated and disappointed in his inabilities most of the time...sometimes I see him give up and not even try - and thats really hard to watch.
ReplyDeleteBut autism has done things to me that would not have happened EVER (I know myself) and I am very grateful for those changes.
Forgive yourself and take some time you know - give up for a day or something :) I do it. Its refreshing, then you start again you know.
I am an autism teacher in Virginia and the raw emotional honesty here is heartwrenching. I can only imagine that what you were willing to say is what many of my parents feel on a day to day basis, as I spend enough time in my families homes to know it's very difficult. I only have one child, a typically developing 2 year old, and while she can be a "challenge" at times, I know it's nothing compared to your experience. Hang in there! I admire you and am wishing you all the best! Michelle in VA
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