Posts tagged ‘frustration’
There are two things I know I am: a control freak and smart. I’m lots of other things too, but for this post’s purposes, those are the two most important. On a day like today, I feel challenged in both those areas. It’s the kind of day we all have as parents of autistic kids, but knowing they will happen does not make them any easier to handle.
There are days where all the planets align and I feel I know exactly what I’m doing and handle what comes with the grace and calm of a saint. But those days are stretched further apart than I’d like them to be, and the rest of the time I’m left feeling as though I’m flying by the seat of my pants or losing it altogether.
Most of the time I’m in the “flying by the seat of my pants” stage, which isn’t particularly good, but it’s also not particularly bad. It’s the “losing it altogether” days that are the worst, of course. These are the ones where I have no idea how to help C deal with what life has put in front of him, and I feel like I’m throwing darts blindfolded. All of my training and education does not in one single way help me on days like these. I pull every trick out of my hat and still I fail.
This is where the control issue comes in. I know I can’t control any of this, I know I can’t fix it, and I know there is little I can do to sort through the particular issues that cropped up today. Yet I trudge along, doing what I can, while feeling frustrated that it’s simply not enough. Not nearly enough. All this while knowing that no one could do it any better than I do.
Somehow knowing that doesn’t help either. The only thing I can do is put this day to bed knowing that the sun will come up tomorrow, and tomorrow I will try and try again.
I’ve seen autism do many things to many families, and more specifically, to many mothers. I’ve been struck by two types of mothers I’ve seen, and I can see how it can go either way.
First, the Mom who has such a grasp on her own kids and how they function. She recognizes the difference between autism behavior and kid behavior. She has the delightful ability to advocate for her children without being confrontational, and I envy her that skill. While killing the school staff with kindness, she manages to get what her kids need into their IEPs (Individual Education Plan) and probably makes the IEP team members think it was all their idea in the first place. She is calm, cool, collected, and I want to be around her in the hopes some of it will rub off.
The second Mom, (sadly, I’ve seen many more of these), breaks my heart. She is beaten down, either by difficulties with her child, frustrations with the school system or the inability to find any doctor who can help. Recently at a meeting for parents with special needs children, she spoke her piece, shaking with anger and rage, and stormed out of the room. I didn’t know whether to be relieved or to cry, and frankly, it made me feel horribly lucky and terribly sad for her at the same time.
I can see how it could go either way for many parents. We struggle so to help our children, to make sure they are getting what they need in life and school. Nothing is what we thought it would be, but we of course adore our children. We try to maintain a balance between the time we want to spend with them just playing with no agenda and the time we need to spend with them teaching them important life skills. We stay up late researching, sorting through medical bills, trying to read lab reports, and all the while trying to make sure we are taking care of everything else in our lives.
But I know which Mom I want to be.
Our son is very high functioning in terms of the autism spectrum. He is able to communicate (although his comments/topics/comprehension often range from the bizarre to incredibly insightful to just “off”), and he is very, very bright. When I feel down or frustrated with our situation, along comes the guilt because I know how much worse it could be. Again, under the category of things I used to say, falls something I’ve said to myself a million times – “It could be so much worse.”
Another mom I know, whose child has asperger’s syndrome, replied to a friend who made that statement, “Yes, but it could be so much better.” And she’s right. It could be so much better. I struggle with wishing this disease away and blessing it for making my child the intriguing, wonderful little person he is.