~"You can't teach an old dogma new tricks"~ Dorothy Parker
We are a regular family...Like any family, we have good times and not so good..times when we are all together and times when the ups and downs of living our lives scatter us in a million different directions. But, even when separated, we are always connected. I adore this family of mine.
As a mother, I see and raise ALL of my children equally. They ALL have the same rules-the same expectations set upon them. "Do your best-and most importantly-be who you are." I have four kids. Each with their own very different and unique personalities-four wonderful kids..not three kids on the spectrum and one neuro-typical child..nor three "auties" and one "normie"..or any other "ie" ending cutesy kind of word.(what is it with that anyway?) Four kids-four human beings that we are doing our best to grow into adults. Labels aren't really necessary to us-unless of course we need services. Then they are of the utmost importance. Autism, other than as an explanation(to my kids) as to why things are sometimes more difficult or different doesn't really mean anything to my children. They are kids, they are part of a family and they are loved beyond words. This is what they know. Sometimes I wonder(when I look at the world) if I have made a mistake in guiding them to think this way.
A few weeks ago, I had an person tell me that I was the best advocate that they had ever met in all their years of working in special ed. I tried to dismiss this..in fact it made me really uncomfortable. Believe me, I am not "the best"..not even close. There are too many days when I know I could be doing more...could be doing better. Those days when I just want to hang out drinking coffee..(and I do) Or, when I just don't feel like making a call..or showing up at school. (so I don't) Days where I would rather read a book than discuss anything to do with autism (so I go to the library) No, I see myself as a regular parent. Doing the things(mostly) that a parent is SUPPOSED to do. I don't need a title-and I don't need (or want) praise. What I would like is for my kids to get all that they need without having to intervene. I do not think that this is too much to ask.
No, if anyone deserves accolades it is my kids. They are caught in a system-both in the real world and on line that is constantly trying to box them in. My children are more than their diagnosis. Some of them struggle more than the others. Not all of my kids may be able to live fully independent lives (as adults.) That does not make them less valuable (as people) then the kids who will be able to. Nor does it make me a failure as a parent-someone from whom they need to be "liberated" from. That is just the way it is.
One of my kids wants to be a teacher. Unfortunately, his lack of pragmatic language, and really, just the way he learns has caused him to be dismissed by many educators(there have been some wonderful ones-but not enough), administrators-and whole bunch of other professions ending in "ors". He simply doesn't fit into the system. So it is easier to just ignore him. To pass him on to yet another system-only to be ignored there as well. *sigh* And another one bites the dust...
Autism awareness month is almost upon us-and I sit here thinking about how unaware people really are. Soon my Facebook wall will be flooded with all sorts of "My autistic kids are great!" all my kids are great-so you're preaching to the choir ..Or the activist type of "I don't stim-but when I go out with my friends, we flap in public to bring attention to stimming!" Are you kidding me? That isn't activism-it's theater. My son owns his flappiness-thank you very much. It is his and it is real. I wish that people would stop co-opting his behaviors to try and make a point. How can I teach him that it is important that he "be who he is"-when there are people are pretending to be who they are not? I wish we would instead concentrate on what is really needed. Services, supports,education and inclusion for EVERYONE on the spectrum-regardless of where they are on that spectrum.
Autism isn't a month it is lifetime. It isn't one set way-it is many ways. It isn't a light bulb or a tee shirt. Autism is all different shapes and sizes and colors and religions. It is different abilities and disabilities. But the most important thing autism is...is people. All different kinds of people. We need to respect that-to acknowledge it-to accept it. I fear that nothing is going to change until we do.
So, now that April is almost upon us and we are inundated with all things "awareness".. I think that I will just continue doing what I have always done. That is, to raise my children to do their best-and more importantly-to be who they are. That is more than enough awareness for all of us..
I find it frightening to be told how wonderful an advocate I am. See if that's true then the rumour of only 25% of parents doing the major slog is true. Everyone else wants it done for them.
The day to day acceptance is easy. I have little trouble at the Ped's, bank, restaurants, grocery stores etc. It's days like today and the upcoming couple of weeks as we bang against the system once more where it falls apart. Ironically, with the very service providers that are suppose to be the most accepting.
Probably the most sensible and rational post I've read on this whole topic.
On acceptance, I'm still working towards it: acceptance took several years for my daughter and I expect it to take just as long for my son: some days I can, and other days I still mourn for the life I expected to have with him xx
I had someone tell me the same thing and I cringed. CRINGED. I do what is best for each of my kids every day. April always makes me want to hole up inside because, like you said, it's every day--not just a month.
@Farmwife-I wish that weren't true. But, at my school-it would appear that there are many parents not taking an active role in their kids IEP's etc...instead just relying on the school to do things. In one way-why shouldn't they trust the school to do right by their children-but on the other hand? I have found that lots of patents don't even know what their kids rights are...
@bluesky-Thanks..yes, I understand that. I still have days where I find that just accepting that I'm a parent (and all that really goes in to parenting) very very hard...
@Lizbeth-I cringe at all of it. We really don't look after ALL the people in the autism "community" (for lack of a better word.) It affects people in so many different ways-and I think that this is ignored. There are a number of autistic adults that I have spoken with-who want to work, who want to be able to do more things-but simply can not because the supports were never there-and still aren't.I think of all the possibility that has been taken from them. Is this what I should expect for my kids? As a "community" we could do so much better..as a "community" we really need to look at what acceptance of ALL people in it means-and act accordingly..
Bravo..... excellently put. I agree whole heartedly.
Awareness (in it's proper format) doesn't just need to be highlighted among the general public, it needs to be highlighted within educators too, especailly mainstream ones.
Loved it. Living it. Thanks for putting it into words.
Well said. It's important for all children to learn to be who they are, and it's something to teach to any child in this world full of examples of people trying to be someone they are not.
@jazzygal-thanks..and yes, I agree!
@Michelle-Thanks.lovely to know I am not alone. :)
@Stephanie-Thanks..yes, the world is full of pretenders-the whole world..which is why I try and teach my kids the importance of standing firm in who they are. The world can be a hard place for anyone..confidence and belief in ones self can go a long way towards helping..
Confidence and belief in oneself are very important, but perhaps more than that is the understanding that, yes, the world can be a hard place for anyone. So many people are led to feel that it's hard for them because there is something wrong with them, but that's not it. It's not our differences that make it hard. It's just hard--for everyone.
@Stephanie-YES! Sometimes I think that it is forgotten that we are all basically just human beings. Sometimes I think that we spend so much time discussing/celebrating/etc. differences/diversity..that we forget to look at commonality.
Commonality is a good word for it. We all have more similarities than differences, true; but we're not uniform.
The pressure to be the same (not just similar) catches so many people up. We're not the same. Life isn't one-size-fits-all. We're all different. But we're also all similar.
Balancing the two in these kinds of discussions can be difficult, but it's also important.
Loved this post- very well put! Love Ei
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