Thursday, January 10, 2008

When The Moon Comes Up, I Lay Awake And Wonder

As a parent, any parent, I think you spend a certain amount of your life second-guessing yourself. Am I doing the right thing? How/when will I know? And, if I am wrong, will I be able to *fix* it?

But when your child has special needs, particularly special and complex needs, that whole process becomes magnified 1000 times. So many decisions, so many choices. With each choice taking on, and often legitimately having, such a huge life of its own, being so important for your child and your family. Now and later.

So what do you do? Well, today, for many of us, it's research. Research, talk to other parents, talk with your spouse, agonize, lay awake at night, pray .... and then do. Fortunately, for some decisions, for some parents, the process is short-circuited, you take one look at your child and you just know what you have to do. No matter what anyone else tells you.

Which is often a very good thing. Particularly if it happens to be your doctor and well-meaning family members and friends telling you that your precious newborn will never 'amount to much' and to save your family, this little baby needs to be institutionalized. I know of many parents who were in that situation and simply said "No. I will take this child home and love them and raise them. And whatever will be will be."' And those are the parents who have reported back years later how glad they were that they didn't listen to that supposed 'wisdom'.

Now don't get me wrong. First of all, not all doctors use such harsh language. There are those who will covey the same message but in a much more compassionate and gentle way. Secondly, I wouldn't want anyone to take this post as a criticism of a parent who did place their child in a facility. We all do what we have to do. We make the best decisions we can at the time. And then hope and pray for the best. We pray that we did the right thing. And sometimes, I think placement is the *right* thing, both for the child and the family.

We are so lucky to have so many more options for our children now then there was in even my parents' generation. I have two older sisters that are severely mentally challenged. My mom kept them home for as long as she could. But finally with a husband in a wheelchair and another baby on the way, she realized she could only do what she could do. And I believe she did all that she could. She didn't have access to the services we do today. Think about that, many of us would consider today's services and supposed 'inclusion' to be woefully inadequate. Imagine having no options. We all pay our money and take our chances. Do our best, make a decision and pray that we were right.

I am lucky in that I never had to hear anyone put that kind of choice to me. My daughter was a perfectly typical infant until she was 13 months old. But when her problems started, she became fairly severely challenged. The amazing thing is, though, that she has certainly come a long way. No, she's never going to be 'nearmal' or "typical", whatever they may be, but she has made amazing progress and, at 14, she is definitely her own unique person.

And now it breaks my heart a bit when my mom tells me that she never thought the Blue Jay would have gotten to this point. And how bad she feels that she couldn't do for my sisters what my husband and I have done for our child. So I remind mom that she really had no choice, given her life circumstances at the time. That any intervention, let alone early intervention, was unheard of at the time. That even if she could have kept the girls at home, they wouldn't have been offered the specialized help and services that the Blue Jay has had. Our life has been far from easy but at least we were able to struggle and fight to get our child help. No amount of struggle could have gotten non-existent services for my sisters.

We're also very lucky that institutions are no longer quite the horror houses that they were. That there are bright, cheerful, caring facilities and schools for children and adults for whom there is no other option. That it's no longer as it is portrayed in this video.

I borrowed this video from Ashley's Mom at Pipecleaner Dreams. And she in turn borrowed it from Casdock at Mother of Shrek. In Least We Forget, Casdock talks about the closure of the old "asylum for idiots" in her town.

The first hospital of this kind in the UK was founded in 1247. Some people were sent there in their youth for 'crimes' such as being epileptic, an unmarried mother stealing to feed their families or becoming prostitutes to maintain their children after being deserted by their husbands. It became infamous for its harsh treatment of the insane. Visitors could come and observe the lunatics- entry to the freak shows were free on Tuesdays. Visitors could bring sticks and poke the inmates to enrage them.
Please go read it all. And be grateful for what we have today, even though in our hearts we know it's not nearly enough.


Casdok said...

Your right its not nearly enough. but i sincerely hope things are improving albeit very slowly.
My son is only 19 and has suffered abuse at school and in a respite home.
If i have seen abuse i have repoted it as i would hope other parents would do for my son.
Thank you for your post.

neardem said...

Very interesting piece written by somebody who 'knows'. So true that what you say about 'knowing' and 'feeling' what is right and how so many of us mothers have followed this way. We can only strive and pray for the best. As for your 14 year-old special needs child... you say she is a special unique person, your blue jay(lovely name)has come a long way ... well good for you and your husband, good for her!Some blessings are big and others smaller, small even, but blessings nevertheless. A Blue Jay, a bird, a free spirit. Lovely thought.

MMC said...

Casdock, no, thank you for your post.
And neardem, just thanks. For what you said and for being such a good friend for so long.

Punkys Dilemma said...

You had me in tears. You've made such an impact on parents with children of disabilities and the pain, agony and joy we have with our kids.
The horrors of abuse in the institutions of my generation is appalling. I thank God we have the options of so many services for our kids today.
Thank you for such a powerful post.

Candice said...

Wow! I'm sitting here in tears and grateful that is not the story for so many today. I am a foster parent, so I know that there are many disabled children who while they are not instatutionalized, they are definally living in prisons. Let us not forget about those children, just because they are in homes does not mean things are better. There is still a long way to go with how disabled people are treated in this country, but it is nice to know how far we have come. I loved it when the song said, "It seems we can't love what is too different, so we try to change it's shape instead". How true!! I have a deaf child that I'm adopting and there are all sorts of pressures to "change her shape".

What a great video, song & post! Thank you for sharing