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Saturday, April 01, 2006

Tearing Down Walls

Today (meaning Friday...I'm still awake, so the day hasn't changed over yet, at least not in my little world) I had a visit from a dear friend. This friend is a special sort, because she actually gets paid to come and talk to me! As our Autism Service Coordinator she works very closely with our family to help meet the needs of our children, which is why she came over. Today, I think she probably met some of my own needs a little more.

There's very few people in my life that I can successfully use (and I mean that in a good way) as a sounding board. Usually, I end up being the sounding board for others and when it comes to my problems...

*moment of respectful silence*

Yeah, that pretty much covers it.

So, having a friend like this who is not only knowledgeable about the issues I face on a daily basis, but is also well-connected is a real boon. She's also in a position to meet parents who do not necessarily handle their circumstances well, so when I say something off the cuff that doesn't sound right she's not fazed. She doesn't jump to conclusions. She lets me talk and work my way through it.

So, when I told her that I wasn't "okay" with mental retardation being applied to my boys, she took it for what it was worth and she let me talk it out. I appreciated that very much, because I hadn't yet gotten past my initial reaction and I needed something to loosen up the rocks in my head. See, I wasn't okay with me not being okay with a diagnosis of mental retardation (which my son hasn't yet received, but it is a possibility), because I didn't understand that aspect of myself. I didn't know why I wasn't okay with it. And I wasn't willing to delve too deeply into my own psyche yet. Not so much out of fear of what I'd find, but out of fear I'd misjudge myself.

This meeting, this conversation proved to be the catalyst for solving that mystery. I found that as I talked to my friend, it wasn't that I wasn't okay with mental retardation itself. It wasn't that somehow I'd think less of my son if he were to be found mentally retarded. It's that, in growing up, a wall had been built in mind. It is a wall that I know others have built up in their mind and that society has built up collectively.

This wall is not so much one of prejudice, but one of misunderstanding that leads to severely low expectations. I couldn't imagine my son being mentally retarded, I couldn't wrap my mind around that, because I falsely saw mental retardation as a closed and locked door on his potential. It wasn't that I wasn't okay with mental retardation; it was that I wasn't okay with this false sense of limitation that I assumed went along with mental retardation.

I'm a stubborn person, and this can often work much to my disadvantage. However, it's also an advantage when you have people telling you something that you are not willing to believe. When my son's (Willy's) doctor told us there really wasn't any hope for him to have a successful, productive life and we should just institutionalize him so we could get on with our own lives, I very stubbornly rejected this doctor's prognosis (with the full support of my husband) and we went on to prove him wrong.

This time it's somewhat different, however, because it wasn't the doctors who were putting arbitrary limits on my child. It was me. Almost. Except, I'd rejected the possibility of a certain diagnosis, because I was not willing to put such limits on my child. I'd even gone so far as to consider pushing for a diagnosis that might not be accurate, because I could deal with it better. After all, I know autism. I can handle autism. I couldn't handle even the possibility of mental retardation, but for the wrong reason.

In the end, it's not the possibility of mental retardation that I have to eliminate from my world view; it's the walls I have built up in my brain that limits the potential of those who are mentally retarded that must be eliminated. Walls can be torn down. They can be moved, much like a mountain, and reformed into something beautiful...like stairs that reach to the height of my sons' dreams.


At 4/01/2006 1:53 AM, Blogger Stephanie said...

I think I had a point in there somewhere...


I'm considering just deleting this post and trying again, however I will reluctantly abstain. If it's incoherent drivel, just let me know and I'll try again. Because, I do have a point somewhere...

At 4/01/2006 2:34 PM, Blogger Lisa Renee said...

I don't think you were incoherent, and sometimes blogging for your own sake is helpful.

I can understand why you would given the situation feel more comfortable with a diagnosis of autism. You know autism. I also understand clearly the desire to not have any limits placed on what your child can succeed to.

What you are doing is natural and it's what you need to do to be able to move forward.


At 4/01/2006 3:28 PM, Blogger Stephanie said...

I hope so. The downside of acceptance, of course, is that my county has virtually no services in place for non-autistic children. So, I'll have to change that.

At 4/01/2006 9:09 PM, Blogger historymike said...

Good spirit, Stephanie.

There is a book on a related subject that is a must read:

Expecting Adam: A True Story of Birth, Rebirth and Everyday Magic, by Martha Beck.


Buy it, borrow it, check it out from the library, or steal it if you must.

As a parent of special-needs children I have to say it reinforces much of what you just wrote, Stephanie.

At 4/01/2006 10:19 PM, Blogger Stephanie said...

Thank you, Mike. If it's a "must read," then I'd prefer to just buy it. My husband's going to look it up on E-bay.

Am I correct in my understanding from your last sentence that you also have a child with special needs?

At 4/01/2006 10:45 PM, Blogger historymike said...

Sheesh, more than one. We have one child with Asperger's syndrome, and one who is borderline MR/DD.

At 4/02/2006 1:30 AM, Blogger Stephanie said...

I didn't realize, or if I did I didn't remember. I guess I'm so used to other parents of children with special needs thinking/saying I'm not consumed enough with the matter to really consider that there are other parents out there who are really able to completely separate their home interests from other endeavors. After all, when I tell people that I do indeed still pursue my hopes to be a (well-published) fiction writer and my interest in politics it's like it's some kind of betrayal to my kids. "I certainly don't have time for that..." It doesn't help that I have absolutely no interest in participating in the ASA or CAN.

I'll have to keep in my mind that it's really possible to be a "me" that isn't always "a mother of children with special needs." Hmm. Something to seriously consider.

(It also gives me hope that maybe the six to eight children my husband and I originally "planned" isn't completely out of the picture.)

At 4/02/2006 4:05 PM, Blogger historymike said...

Yep - we have nine in the house right now. My kids with special needs are just part of the family, and everyone accepts them for who they are. I neglected to add that we have several diagnosed as ADHD, plus a couple with other mental health issues.

It is possible to juggle lots of different identities without shortchanging anyone. I am a father, husband, writer, editor, historian, grad student, and whatever else I want to add on.

Having kids who need a little more time and energy should never hold anyone back. My aunt had a child who was severely disabled, MR/DD, and who did not have a "future" as defined by our status-obsessed society.

My cousin lived to the age of 24, and despte having to care for him full-time (she had help during the day when needed), my aunt was able to get her BA, MA, and teach for many years.

We are only limited by our own imaginations, or when we allow the rest of the world to tell us what is "right" or what we "must do."

I am sure that my aunt got a lot of grief over the years by small-minded people who felt that she should have stayed home and played nursemaid for my cousin 24/7. Remember too: this began in the 1960s, when the world writ large was much less accepting of women entering the workforce.

Especially women who had given birth to a child that required extra time and attention.

At 4/02/2006 6:50 PM, Blogger Stephanie said...

I imagine, considering the time-period, your aunt was also probably pressured to institutionalize your cousin as well. A lot of that was going on then, too.

Thank you for the reminder, Mike. It's certainly encouraging to know that there are those who've succeeded at what I'm trying to do.

At 4/03/2006 4:42 PM, Blogger historymike said...

Yes - you know in your heart what is right for you and your family.

My wife and I have gotten much grief over the years from well-meaning friends and relatives about our decision to become foster and adoptive parents.

Thankfully we never listened!

At 4/04/2006 2:35 PM, Blogger Stephanie said...

Thank you for your encouragement, and if it helps...here's one friend who supports your decision and offers all the encouragement I can!


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