Monday, July 5, 2010

Autism Wins

This is how I felt today.  Autism beat me down.

As I posted earlier, Alanna has been having a ton of trouble sleeping.  This is having a big toll on the family in general, but particularly it is impacting her.  She is very "spacey" - it is difficult to get her attention, she is not responding to her name and her behaviours are worse.  I hate when she seems to regress.  I am hoping it's temporary because every step forward is won through her hard work, and going backwards is so very painful.  Lack of sleep is the only thing I can think of - unless the bits of gluten she got are causing the problem.

Today Tyler learned how to drink from a straw.  Spontaneously.  At 13 months. Part of me was proud of him, and part of me wanted to cry.  He took Alanna's straw cup, grabbed it, and drank lots of it as he walked around looking proud of himself.  Teaching Alanna how to do this has taken weeks of effort, and he is now more proficient at it then her in about two seconds.  It just makes my heart ache for her so much when something this simple is so difficult for her and so easy for everyone else.  Meanwhile, on a hot day (low thirties but almost forty with humidex, ugh), she was not drinking much from her straw cup in the hopes her sippy cup would reappear.  Learning is hard and transitioning is hard.  And my son did both so fast.

Moments like this make me feel like a failure as a Dad.  I can't fix it, I can't always make it better, and I try to stay positive and celebrate her successes but sometimes the difficulty is so acute I just lose it.

Autism, you win today.  Alanna, Daddy will try to do better tomorrow.  


  1. CHECK ALANNA FOR STREP THROAT. Yes, I'm serious. I learned when my daughter was six that a lot of the "regressions" were not "regressions" but were strep throat or sore throat. I wish someone had told me sooner - we thought she was cycling through these regressions out of nowhere, with no rhyme or reason.

    Throat pain and ear aches can wake a child and keep them from sleeping, and both pain and strep can send a child into regression. I've had a double ear infection for a week and a half, and with the sensation of hearing under water and the pain and fatigue, well, let me tell you, being "present" with my children is an incredible challenge - I've gotten a good experience of what my daughter may be going through when she's sick.

  2. Hey autistic wisdom. Don't feel defeated, its just the beginning my friend.

    You know we have had many such periods on our short journey too, and sometimes its growth spurts, sometimes the weather, sometimes it could be an allergy or infection like Penny says, sometimes behaviors are preverse ways for "normal" milestones to present themselves.

    For instance, our "self injury" ear hitting thing is now more about sound alteration and playing with sound which normal children do all the time but not in this strange preverse way. Our children often do things to serve the same developmental functions but do them in wierd ways.

    Anyway, who knows eh? I mean I don't know Alanna that well and I dont want to give you lectures about what to do for her.

    Find other parents in your area who have autistic kids and hang out with them. I have found this the best way to "rejuvinate" myself and get back in the game after being beat down.