Wednesday, April 23, 2008

10 PM Ramblings

There are some days that I wonder if my children have been mis-diagnosed. So often, people are shocked when they find out that Austin and Reece have Autism/Asperger's. Sometimes they blend in very nicely. I wonder, sometimes, if they are just regular kids, albeit a little bit different. Maybe if I were a more effective parent? I was so glad at first to get the diagnosis, because it really seemed as if someone were saying, "Nope it's not your fault, there is something else going on."

I'm not sure what I'm trying to say. I'm in a rough place right now. There are enough times where I see the autism, or I think I'm seeing it. But even then I wonder if we were better parents, would it still be happening? If our kids were given to someone else, would they still have been diagnosed on the spectrum? If the kids had a mom who was more naturally 'dynamic' in her approach to life, would they be different?

I wonder if this is a common feeling when you have a child on the higher-functioning end of the spectrum. Some days and some situations go off without a hitch and I feel like I'm over-reacting. Some days, and the same situations, are a disaster. I haven't been telling people anymore about the autism because they look at me like I'm lying or making excuses. Maybe I am making excuses? Maybe we should stop making excuses and hold them to a higher standard? Are we over-indulgent?

I feel like I'm torn between worlds. And I don't know where I should be. Do we think of our children as children with autism, and make accommodations and focus on remediation? Or do we think of them as regular children, holding them to a standard, regardless of whether or not the 'issues' come into play?

I'm sorry if this doesn't make sense. It's a reflection of what I feel like inside. I feel lost. I feel totally alone. I feel like I don't fit in anywhere, not with homeschoolers, not with parents of children with autism, not with Christians, not with stay at home moms. I want to fit in. I'm trying to fit in, and it makes me feel even more out of place.

5 comments:

JamBerry said...

{{{{{Niffercoo}}}}}
You ARE a great mom.

The Glasers said...

Jen,

Bernard Rimland killed the "poor mothering" theory back in 1969 with his monumental book Infantile Autism. If your mothering skills were suspect, why is Riley NT? I think I have a naturally dynamic parenting style than you and Pamela is way more in the spectrum than Austin or Reece!

The way I see it is that we have to build bridges from their world to ours. They do not know how to do it on their own, and we will help them navigate our world more quickly when we build those bridges. If other people do not get it, they are the ones with the problem. I believe that "accommodate and remediate" is the best way to go because you will destroy any hopes of a relationship with them if you apply the stubborn-mule approach! And, isn't relationship with our kids, our spouses, and our Father in heaven what it is all about?

poohder said...

{{{{J}}}}}} Remember kids on the higher end of the spectrum ARE very good at blending in. But it doesn't make them comfortable and happy in their own skin. YOU are on the right track. IT IS NOT YOUR FAULT!
CHANGE IS HARD. The only battlefield that the enemy has is in our minds.He is powerless anywhere else. You are working on Relationships. Relationships are the hardest thing, but the most rewarding in the end.
Prayers today for strength for us all.

Evelyn said...

Wow, I don't know you from Adam, but I came across your blog through Jan's blog. I really stumbled upon it or maybe it was meant to be.

I too have a child that is in the Autism Spectrum, diagnosed with P.D.D. (Pervasive Developmental Disorder). You are not alone my friend, I also have felt every single word of your post, WOW!!

For the longest I questioned his diagnose, thinking maybe I was wrong, that his doctor was wrong.
Friends and even Family doubted as well, until certain behaviours showed up that is.

My son is currently in Kindergarden and is in a regular class, because he wasn't Autistic enough to be in a classroom with Autistic children,and yet he struggles with concentration, keeping up with the work at the other students pace, having difficulty in comprehension, staying on task, etc. Why? because he is Autistic, go figure! Of course he gets all kinds of therapies in and out of school, and has done pretty well within his struggles.

My point in telling you all of this, is don't beat yourself up over this. There are many of us out there, and it certainly isn't anything we were prepared for. It isn't your mothering, it isn't the lack of anything you could do or the excess that some of us do. These kids are simply like Chameleons and they blend in very well, what sets them apart is their inabilities to be completely comfortable and confident in their environment.

My belief is that "God didn't choose these kids to be our children, he chose US to be their MOMS!" He knew that we each had what these children needed in order to make it in this world. So be the MOMMY you were intended to be, be YOU.

Much success to you and I hope we can become great supporters of one another in this journey.

Laura said...

Hi,
I found your blog through youtube. Love LOVE the movies you made of Reece. I troll youtube for the very reason you cite in this post - feeling alone, confused, skeptical. All of those things.

I'm with you on ABA rejection, and not fully relating to parents of spectrumites, but also not fully relating to parents of typically developing children. It's a weird in between space.

Although I still hold skepticism about the diagnosis, I don't look inward. I mean, I have another typically developing child, and there's clearly something organically different. Meaning, it's him not me.

As for limit-setting and making excuses and whatnot, I dunno - that's a different issue. Temple Grandin is critical of modern parents of autistics for being too permissive. Her message is don't punish for stimming or sensory reactions, but do set limits. But that line between autistic behavior and unruliness is incredibly blurry. I wouldn't even know where to begin. My son is only two so I have some time to let that one ruminate.