The one where she talks about autism a lot.

The last few weeks have been kinda crazy at our little house.

L and W started swimming lessons at a therapy pool and it is really going great.  At least the lesson part!  They are enjoying themselves and progressing each week and they love their instructors.

The hardest part for me, as with all things related to being a twin mom, is the logistics of getting everyone from point A to point B in one piece.  And this endeavor includes getting out of a parking ramp, crossing a courtyard (while one leans away and lets me hold up the brunt of his body weight and the other tries to walk ahead without holding my hand),  getting one twin ready to swim, keeping the other one under control while he waits for his lesson, and then getting them both dressed and back to the car.

So far I haven’t done it on my own and judging by their behavior the past two weeks, I am not encouraged that I will be able to do it by myself.  Last week the session ended with L making a break for it and running around the pool as fast as he could when I was getting W out of the pool.  I went after him, another mom ran the opposite way around the pool(Thank You other mom!) and the instructor tried to get through the pool in case he fell in.

Talk about a heart attack.  He is quick and he likes to bolt.  Safety is a huge concern when it comes to him and I never feel like I can handle him on my own- let alone with his brother in tow.  But, there aren’t many options, so this week I will be on my own.  I’d be lying if I told you it was going to be OK- thinking about it makes me want to throw up.

I’ve started sitting in on the boys sessions each Monday and Tuesday.  The boys don’t seem to mind so far, so as long as they have good sessions, I will continue to do it, it’s good for communication with their various therapists.  One of the things that was brought up a few weeks ago was that we might want to try a gluten-free diet for L.  I have been putting this off for years, I just am not convinced it’s going to make a difference.  Eventually they will want us to go casein-free as well, which seems ridiculous considering 75% of their diet is dairy at this point.

So, we bit the bullet and went gluten-free.  The boys are still spending down their lunch accounts at school so they aren’t 100% GF yet, but they will be starting next Tuesday.  So far, it’s been OK.

It looks really easy from the onset- meats, fruits, veggies, dairy are all fair game.  It’s once you get into cooking and baking that you start to realize it’s trickier.  We ate mostly from-scratch meals to begin with and snacks were granola bars, cheese sticks, and occasionally crackers.  Boxed mac and cheese and Zatarains Jambalaya rice and cereal were they three big processed foods we ate on a regular basis.  They loved Corn Chex for breakfast, so we thought we were good there because they are gluten-free.  Now that they don’t have the option of choosing Life cereal, they want nothing to do with Corn Chex.  Of course.  They also don’t want cheese sticks or fruit for snacks.  Yogurt ends up on my dining rooms drapes, smoothies are too difficult to drink, anything too crunchy (veggies or nuts) doesn’t get past the lips.

They want carbs.

I am having trouble figuring out how to keep them happy for breakfast, lunch and snacks- they aren’t eating dinner at all, but that wasn’t really happening before we went gluten-free.  I am struggling.  Seriously.  At the end of this trial period, there had better be a marked change because my kids are going to be losing weight like crazy if they keep up like this!

This is what makes me the most insane when dealing with treatment for autism- it’s all a total crapshoot.  For every person who says a gluten-free/ casein-free diet changed their ASD kids life, there is one parent who it didn’t make any difference at all.  Nothing is easy- there is no magic pill to help with behaviors.  Oh how I WISH there was an option for a magic pill and it was my choice as to how I was going to deal with this!  It’s all nice and good to skip the pharmaceutical route when you have the OPTION to do so.  It’s completely different when your life is an uphill battle of therapies that may or may not work and you have nothing to fall back on but more therapies that may or may not work.

Sometimes, I wonder what difference any of it makes.  My boys have made progress over the past two years, but I still cannot imagine them mainstreamed at any point of their lives.  I don’t see them ever living on their own.  I don’t see them having romantic relationships or families or jobs.  And yes, I get it, they are only 4.  But, I just don’t see it.  They aren’t going to be those kids who test out of their diagnosis.  I know that.  And I am OK with that.  I don’t feel a need to fix them.  I don’t feel a need to figure out why they are like they are.

Wow.  I think I will stop there before I write a novel- there is plenty more in the Autism Files.

 

 


  • I admire your willingness to get your kid (S) to the pool! yikes! I would seriously get them in swim diapers and suits at home, throw jogging pants over the top to reduce some of the stress. I wish I could help you.
    I also can’t believe you actually went GF. What prompted this exactly? You are making it sound as F’ing hard as I believe it would be for me too. You know there are supposably enzmymes that are supposed to block the GFCF stuff and they aren’t that expensive. We tried them a few years back, but they mostly made the boy uninterested in apple sauce.
    I think I got it through Houston (enzymes).
    I like your real views of your children. Does your husband see it the same? I think I feel the same about my boy and that is why I can’t decide how important my frets are over his education. Before I worried about his ability to progress and now I worry if they can even work with him. wow, this shit has gotten hard. And he’s not even 6.

    • MNMomBlog

      Apparently my husband had to carry them both out of there after today’s lesson. That is not something I could physically do, so lets hope it was a one-time thing. I have thought about getting them ready at home, but they are not even close to being potty trained so a swim diaper isn’t an option until we are close to getting into the water. I did switch from our beach bag to a backpack, that at least leaves both arms free for wrangling!

      I might check out those enzymes- if there is an easy (read: LAZY) way to do this, it might be worth it. Then again it might turn into the great melatonin debacle- how to get it into them?

      We are pretty much on the same page with the boys. We got there pretty quickly and we’ve been there ever since. It is beyond helpful to know that I’m not in this alone, I really can’t imagine how I would do it- I am not that strong of a person.

      I was just thinking that it’s only been 2 years since our diagnosis. It seems like longer. I don’t know if it’s all the different school sessions that makes it feel longer or what, but I feel like we have been after this forever. Maybe in 2 years I will feel more hopeful for their future. Not that I’m not hopeful- they will be ok, it’s just not what you expect when you have a kid. But, you know all of that.

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