Some days I feel guilty

First a few house keeping notes:

You all made my stats counter go through the roof this weekend.  I was feeling so good and loved that I didn’t even play the meet n greet game to boost my numbers.

I feel bad when I don’t update for ya’ll.  I have so much in my head that when I think about typing it I get overwhelmed and give up on the whole idea.  I write this blog for me to vent and keep a record of what’s going on.  But I also write for you.  I feel like some of you have a vested interest in my life and my family.  I KNOW some of you do, because I know you personally.  However, most of the people who read I only know you through your writings. 

Currently I have been feeling guilty over treatment plans for J.  Some of you are doing absolutely everything you can to reverse the effects of autism.  You have a plan, therapies, doctors, diets, supplements, support groups, amazing blogs, etc.  I feel as though I am falling short in that department. 

Sometimes I get clouded and see my child the same way these people do.  Things aren’t so bad.  We were turned down for help from the state because he is not in danger of being institutionalized (their criteria for helping kids over 3 who can go to school.)  His school psychologist didn’t know why she was testing him last week because he was in the gifted range and she forgot about his diagnosis.  His teachers tell me all the time how thrilled they are with him and that they are certain he will be in a mainstream class next year with “resource pull-outs.”

We are suppose to be getting an evaluation for OT but with the insurance snafu I am still dealing with the therapy clinic who will see him but wants our referral.  We faxed it, waited for a call, I will call them tomorrow to check.  so I guess that is a step in the right direction.

We don’t belong to any support groups unless you count reading all your blogs and asking questions on my own when I have them.  I am considering starting a special needs “meetup” group.  I already organize one for military moms, but I noticed on the “meetups waiting to happen” site that there were several people who wanted a moms group/play group for kids with special needs.  I think the only thing holding me back is that I don’t know what I can offer that the support groups in the area don’t.  I guess I’ll have to join one to find out. 

Thanks to everyone who answered me on the Gluten Free front.  Again we aren’t on any special diets.  the only reason I am even considering this diet is because I am 70% certain that both boys have some sort of food intolerance.  They will be 5 and 3 next month and neither of them have ever had consistently “formed bowels.”  It has happened on a rare occasion but for the most part they are loose bordering on diarreah ALL THE TIME.  And after talking to some moms in my book club they pointed towards food intolerance.  I am going to start with Wheat because it would break their hearts if I started with fruit.  If it is fruit we will just have to suffer the consequences because they aren’t giving that up.  I may try dairy too, but I want to do one at a time to get a better idea.

We just started supplements, cod liver oil, for J this week.  I am still holding out judgement on this one.

We are having some melt downs in the computer department.  still trying to find a good balance.  some of the melt downs are in response to me saying it is time to turn it off or its not time turn it on.  Still working on a predictable schedule that works for everyone.  Wednesdays and weekends are hard because I can’t say “wait till you get home from school.”  He is also having some serious meltdowns when it comes to frustration over a few games.  He has been playing a lot of nickjr games and several of them are very video game like where the characters go on quests.  Sometimes he has trouble manipulating them to accomplish their tasks or to go on the right route and he wants me to do it for him.  I will show him a couple of times but after that tell him “practice it yourself or pick a different game.”  This has caused massive amounts of weeping, the fact that I will not bail him out at the exact same point in the game every time.  The fact that he doesn’t get it right on the 1st try, neither did I and I point this out, but to no avail.  We go from happy to inconsolable in 10 seconds or less.  When it happened this weekend hubby had the nerve to ask, “what is wrong with him?”  He’s 4, he has autism, and he is frustrated.  At this point, so am I.

If you stuck with me this long, thanks for letting me ramble, told you I had a lot on my mind. 

Need some humor?  Go visit The Fretting Zoo  I’ve been laughing for a couple weeks now.  Its a dry humor, but it speaks to me.

5 comments on “Some days I feel guilty

  1. My mantra … Guilt is a USELESS emotion. You quite obviously love your child and are doing what he needs. Autism treatment is not necessarily a competitve sport. Take it a day at a time. As his mom, you have a distinct connection to his needs, whether you recognize that or not.

    All of our kids are different and require different levels/types of intervention. Don’t sweat it!

  2. I would like to speak to the issue of computer time and the issues that surround it. My elder son (15 years old, Asperger’s) is deeply attached to the computer. On a daily basis we would go through the tantrums and arguning over when he could use the computer and for how long etc. It is very hard and you know you will deal with the same issues everyday.

    A couple of years ago we installed a program called Kids watch, Time control. This is has been a fabulous solution for the computer “control” issues. You can set the control so that the child cannot “log in” to the computer until the time you dictate and you set the amount of computer time, internet time, shut down time. It has been amazing at reducing the difficult behaviors. It takes the personality out of the situation and now it is the “stupid computer shut me out” not Mom or Dad being “in control”. Try it out. There is a 15 day free trial period before you have to purchase.

  3. No Guilt!!! You will never be perfect and if you think ANYONE out there is perfect, whether in caring for their child or whatever, you are wrong! So don’t feel guilty! And now… don’t feel guilty for feeling guilty! It is normal – just try not to wallow in the guilt – a bubble bath is much better for wallowing 🙂 Take care and hang in there!

  4. “Some of you are doing absolutely everything you can to reverse the effects of autism. You have a plan, therapies, doctors, diets, supplements, support groups, amazing blogs, etc. I feel as though I am falling short in that department. ”

    I think you may be being too hard on yourself. You too are doing what is right for your kids right now. It is a process and there is no outline to follow. All the kids are so different. Your blog is wonderful and amazing! You share what you are struggling with and give ideas and support. I love it. You are certainly not falling short.

    I am proud of you!

    M is in no therapies or school or getting any services either. It is hard sometimes to realize that we have her in nothing but there are bonuses to that too. We used to have her in too many therapies and it seemed to be an over load. Too much with too little progress.

    Also, I know you understand the joys in autism and the positive parts. I don’t think of myself as needing to resverse things with M anymore. She is who she is and we do our best to help her.

    Hang in there and thanks for sharing.

  5. No special diets, no outside therapies, and both of my Aspie kids make steady progress. We’ve saved a ton of time and money by not trying out stuff that’s not been proven. I feel pretty good about our decision.

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