Friday, December 30, 2011

worth the fight?

It seems there has been more tantrums, more screaming, more kicking. Its hard to know if its part of typical development as a 2 1/2 almost 3 year old, or if it is the autism. Either way, it sucks! He's generally a very happy dude so it makes the rough times such a stark and dark contrast. I know its nothing compared to what some other children and families dealing with ASD go through. Its harder having this my first child too I think. Nothing to compare to. I've been debating going back to the gluten free casein free diet to see if his behaviors improve again. I didn't think it was making a difference but now I wonder. Its just such a huge commitment of time, lifestyle change and money. We still attempt to eliminate dairy products, but we've been lax on that the past month and I'm also wondering if that is the problem. I reintroduced gluten first a few months ago and saw no difference, but then this past month has been harder and that is when we got relaxed with dairy. He doesn't have tons but he has enough and I've also seen a change in his bowel movements. They've gotten worse, back to the way they were before all of the diet work we did. Ugh! 

Then there's this whole thing about getting pregnant and having another baby. My heart longs for it, you know that. But then today when he was screaming his head off I thought, "What if the next one is just like this... Autistic". What if they scream more than Gav does. What if they have more gut problems and actually have intellectual developmental delays, instead of genius in them like Gav does. What am I fighting for? Another child with autism? Is the monthly challenges of infertility and multiple false starts really worth it?" Maybe the negative pregnancy test earlier this week was a blessing? Could it really be? Seriously, I don't know. I don't know how I'd do it. I know I've been armed with much more information and tools to help with behaviors since starting intervention with G, but you just don't know where on the spectrum the child will fall and what their needs will be. Its scary. Do I take the risk? I read in a newsletter again the new statistics that research is finding-- 19% chance that our second will have autism. The other side of that is 81%, but for some reason when spirits are down and I'm deep in the trenches of working through tantrums all I see is 19 PERCENT! 

Add to all of this the endless number of theories and treatment approaches to autism and its mother load of life challenges and its easy to get overwhelmed. Is this behavioral method really the best thing for G?  I'm sticking to my guns, praying that what I'm doing is actually going to help and not hurt him in the long run. It takes sooooooo much strength to listen to your child scream and to "ignore it" and go on happy as a clam trying to redirect their attention. All I want to do is scream back, to yell, "Shut up!" (and sometimes I do). Oh, and just in case you were wondering, it doesn't help! Duh! Redirection and extinction do help, sometimes it takes a while (probably 5 minutes on average, which seems like an E-T-E-R-N-I-T-Y) before G is back to himself, but I'd say 100% of the time if I do my part to redirect and I don't give up he comes around eventually and his happy little self returns. 

It's quiet now. He didn't want to part with his 18-wheeler for his nap, but he wouldn't go to sleep with it, he just kept talking and playing. I offered a trade, but he lost it. That one wasn't so bad. He must have succumbed to dreamland. Oh how I'm grateful he sleeps well, something most with autism don't do. 

So, I guess I have some more soul searching to do. Definitely some fasting and praying, trusting in the Lord's plan. There isn't much more I guess I can really do than to strengthen my faith and turn the rest over to Him-- Thy will be done. 

The screaming has returned. I spoke too soon. I'm off to comfort the weary.


  1. Your strength and dedication is amazing. Is there a local autism parent group you could join? I know every child is unique, but maybe you could compare notes.

  2. I don't know if it ever really goes away Stac. I just notice as they get older they use more fighting words. That's when I have to bite my tongue and not get upset. When I get upset, they get happy! But when I am more sad they get mad. Why is it so hard to do? Just keep at it sis. The next time won't be so bad if you stick with it. Love ya.

  3. i guess it's hard to say for sure, but that age was when brennan's tantrums were full blown so it might just be the age. we had an IKEA episode with him b/c it was time to leave and he didn't want to leave the train table. he was 2 1/2, so about a year ago this last fall. i literally carried him out of the store with him kicking and WAILING, with huge tears, screaming like he was dying, hard to hold him with both of my arms across his body tantrum. he was banned from IKEA at that point. we have not been back. in the last several months his tantrums are little to none. i frequently scream "shutup" at my kids IN MY HEAD:) and i find that growling outloud helps vent my frustration:) funny to watch my kids to the same thing when they get frustrated. lovely coping skill i've taught them, lol. love you!!!

  4. I often read your blog, but never comment. I do not want this to sound mean (although it probably will, but please don't take offense), but maybe you not getting pregnant is God's way of telling you that you shouldn't have any more kids. At least not yet. It sounds like Gavin needs your undivided attention and dedication and to be the best mother you can possibly be. Maybe you were only meant to have one child and to raise that child in a way that he can be a functioning adult to go on and do amazing things. Or maybe when he gets a little older and progresses a little, you could try having a kid. It's hard to think that the family life you grew up dreaming about does not come true. But sometimes it's better to listen and go with what the universe (or God) is trying to tell you. Take some pressure off of may help. Whatever you do, I wish you the best of luck. Raising a child with autism is not easy, but it's not the end of the world either. Continue doing what you're already doing: being a loving mom. Everything else will fall into place.