Tuesday, March 1, 2011

I just want easy

Over the last couple weeks, there have been some almost imperceptible changes in Danny, changes which now that they are adding up, are beginning to drive me nuts.

Lately, there are certain aversions that Danny has developed seemingly out of the blue, which have been throwing a major monkey wrench into our days. Certain foods, like chicken nuggets, which he previously practically lived on, he is now eschewing. I know that can be normal for most kids, but his diet is so limited as it is, I am at a loss as to what to replace them with.

On top of that, he has become even more choosy about his wardrobe. Shirts that he used to love, like his Lego or Bakugan shirts are now on his list of fashion don'ts. This limits him to about 2 or 3 shirts that he's willing to wear. Not only that, but as soon as he is able, he changes into pajamas. At the weekend, it's nearly impossible to get him to wear clothes.

Now, I know these changes hardly make for crises, but I already felt at my limit; now, I feel like we are revisiting battles that I had thought we had won. Or ones for which we had at least negotiated adequate treaties.

The worst challenge of all, though, is that about two weeks ago, Danny started having accidents again, and I have no idea what to do about them. I don't know if it is his diet or a sensory issue or what. Just when he had been having huge success in that area, it all falls apart.

I know I am whining and that other parents have it much, much tougher than me. I know there are people out there who have chronically ill or dying children, or children who need constant care. I know my problems aren't enormous when put into the proper perspective, but try telling me that after a bad morning like today.

The zipper on Danny's coat broke, so he ended up in tears. Even though he has two other winter coats that friends have given us, he refused to wear them. Yet, the prospect of wearing a coat with a broken zipper was distressing, even though the coat also has a set of snaps. What was I supposed to do?

Bear with me if I sound whiny, but just once I would like one area of Danny's life to go smoothly with no help from me. I just want one part of his life to be easy. I don't think I am being totally unreasonable here. Eating, dressing, going to the bathroom are all areas most 7 year olds can navigate successfully with hardly a second thought from their parents, right?

Add to this the fact that Danny's grades have dropped a little bit and we are doing extra work with him, and I just want to scream. There is no part of Danny's life that is not something of a struggle. He needs extra help and coaching with schoolwork, and he gets frustrated pretty easily with that. Danny doesn't always want to go to school or church and fights us on it. Socially, he is still way behind and needs lots of extra support. We have to do his therapy at home with very little support from a therapist.

All of this falls on my shoulders, and to be honest, I'm just sick of it. I love Danny to death, but sometimes I want to just shake him and make him be more flexible in things like his clothing options. Other times, like when he has an accident and has no idea why he didn't feel the need to poop, I just want to gather him up in my arms and make it all better.

And lately, most days, I just want to yell at God. Why can't He, in all His omnipotence, just throw us a bone? Why can't there be one part of Danny' s life that I can relax about?

As I typed this, I realized there is one part of Danny's life that has always been easy for us: his sleeping. I know that is pretty unusual for autism, so I suppose I should be grateful, and I am, believe me.

So, perhaps I should just end this rant and remind myself how grateful I am that my son gets 11-12 hours of sleep every night, which means I too get full nights of sleep regularly. If that's not something I should be thanking God for, I don't know what is.

Darn it, and I was all revved up to keep ranting, but somehow the thought of Danny's fantastic sleep schedule has diffused it all.


Sarah said...

If it is any comfort, this too will cycle out. The best piece of advice I can give you, Patty, is to understand that Danny as well as your entire family, will live in cycles. The good part of cycles is once you define them, you can better prepare for them when they come around. It may take awhile, but you will.

As for the clothes and food---I suggest making a "choice board" for Danny. Let's start with shirts. Pick 2 shirts he likes, 1 shirt he doesn't. He then needs to "choose" which one he wants. Next day introduce 1 shirt he likes, 2 he doesn't---he will of course pick the one he likes. Next day, 3 new shirts....what he needs to understand is that he still has a "choice"---may not be the one he exactly wants, but it is a choice. As for PJs on the weekend---set a timer. He has to wear "clothes for 15 minutes. Once the 15 minutes is up, PJs it is. The idea is to keep increasing the time allotted for "real clothes" versus PJs.

As for food---I use the "first then" approach. First take 2 bites of "x" item followed up by "then you can have [blank] which is always candy or cookies. But the idea is still instilled that they have to do "x" first then "y".

Alysia said...

It's not whining at all. I know exactly where you are coming from. I too would like just one thing to go easily without constant management. I feel like the only times when things do go smoothly is when I've completely hyper-managed the situation.

That being said, I do think things come in cycles like Sarah said. It could be weather related. Or some other stressor that he hasn't shared. I love the choice board idea because it gives him control, which it sounds like what he's missing (control over his coat, control over the bathroom stuff, etc.) I don't know but it could be worth a try?

Martianne said...

I feel for you as I was having similar, but unique to our own boy frustrations for much of the end of December until just recently. Now, knock on wood, we seem to be in an "easier" cycle. (Please, please, please! Let it stay...)

All I can offer is let it out and then let it go. Give it over. Have faith in yourself. count the blessings- even if only one 11-13 hour sleep one at the moment - and know that God made Danny just the way He wanted him even if it may be difficult to understand how to help Danny cope with the world as it is - with dressing, potty issues, etc.

One things that has really been helping me lately is asking, "What's right?" instead of "What's wrong?" Makes a world of difference, even if only in my mind. And, during the moments it does not, a cry, a rant or a hug do. So, consider yourself cyberhugged.

ShesAlwaysWrite said...

Can't tell you how many times I have felt exactly the same way - can't *something* be easy about Bear? Like, can it be not sleeping OR not potty training OR refusing to eat unless we feed him?! Does it have to be all of that on top of everything else?!
We should have a drink sometime : )

Heather said...

We find that when Eli has gone through a growth spurt or is in the middle of a growth spurt that things get worse. We take about 15 steps backward. The weather affects him too. I'm with all the others who said it goes in cycles. I can look back through my blog and see a pattern in when I was going crazy because I felt as though I was failing Eli as a mom. Hang in there sweetie...

Jenni said...

Gosh, Patti, I just want easy and my kids don't have autism or any sensory processing disorders. You're allowed feel frustrated and a little sorry for yourself. Parenting is tough; parenting a special needs kid is tougher. Just take a deep breath and tackle each issue one at a time. xo.

Trish said...

Hey, thanks for your comment at my blog earlier! I think everyone is allowed to rant sometimes, especially on their own blog. ;)

One of my friends calls it the "cyclical suck" because sometimes things are great and then they can just really suck and it can change in a week or a day or a minute. Here's to the upswing coming soon, I hope!

Lizbeth said...

Hi there--I followed you over from What We Need--everyone's entitled to a good rant and it can be hard, boy, can it be hard to raise our kids...anyway I'm so glad your little one sleeps. Sometimes that's the best medicine of all!

Diane said...

I completely relate to where you are coming from, and you are certainly entitled to vent. It's part of taking care of yourself, so that you are better able to take care of your family.

I go through so many phases where absolutely everything seems to be a hassle. Everything that's been said here about things cycling is true. Things will get better. Later, some things will get worse again. It keeps changing. After a while, some things may phase out altogether.

My oldest did finally stop chewing his clothing after we went through several periods of that being off and on. He stopped eating some foods that were part of his limited repertoire, and now he is the best of my three at embracing new things to eat. Night-time accidents popped up again out of the blue for a while, then finally disappeared altogether.

We also have some new things now that weren't issues when he was little. It keeps life interesting, and it helps to remember that it will get better, and all you have to manage is today. You're doing great, so cut yourself some slack.

Anonymous said...

Patty, I am so late reading this (I'm sorry!) but I wanted to a) tell you that I understand how you feel, and b) offer up a suggestion.

Charlotte is a picky eater too and she will burn out on a food after eating it ALL the darn time for months on end.

So a while back she decided she wasn't going to eat chicken anymore. I thought, Crap, what am I going to feed her now?!

And then I said, "That's fine if you don't want to eat chicken, but I need you to decide what you will eat instead." And we talked about the various options - protein sources - that she could have in place. Ultimately, she decided not to quit eating chicken.

You could give that a try with Danny if he's still being that picky. And even it might work with the shirts.

I think our kids are reaching an age where they can take some responsibility for themselves, you know. Take a wee bit of the burden off us moms.

Good luck, Patty!

Anonymous said...

i so so get this. =}

Beth's Blog said...

I just saw this post and the part about clothes made me giggle. My son, who is autistic, doesn't want to wear anything but his underwear around the house.This has been happening for almost two years. If I put clothes on him, he sneaks and takes them off. Now, when we leave, he is the first one to put clothes on. When company comes over, he runs and puts clothes on, but if its just family...it's just underwear.