Saturday, March 8, 2014

Isolated

When I think back to when Beth was born, I get the feeling of isolation. Not that we were isolated necessarily, but compared to today I remember it as a lonely, isolating time.

I've written about this before, how if you needed help with something you picked up the phone and called. If you were curious about your child's diagnosis, you went to the library and looked through the card catalog for the books about children with special needs. Or in our case, 'Mongoloid children.' Yes, it was called that even as recent as the 80's.

My 1992 Websters Dictionary says, "Down's Syndrome: mongolism, a type of congenital mental retardation." That's what we had to base our ideas of the future on.

Nowadays parents ask a question on Facebook, "My child is doing such and such, do your children do this? What experience have you had with this?" And in minutes there is a thread of comments a mile long. Encouragement, resources, referrals.

I sometimes feel a little sad that we didn't have those kinds of connections. I wonder how different Beth's life would be if we had.

I guess we're coming up on World Down Syndrome Day. I said that slowly, out loud to myself the other day. World Down Syndrome Day. World. The United Nations has declared it so.

The United Nations!

My first thought was, 'the United Nations know we exist??' This is so mind boggling to me. I think of when Beth was 3 and she was playing in the front yard with the neighbor kids. The United Nations was the last thing on my mind. Let alone the world. I was just living day by day, trying to navigate this world of special needs. What did I need to do tomorrow? Why did I need to do it and what impact would it have on my daughter?


But I guess some parents decided more people needed to know about our kids who have special needs. They've advocated and lobbied for support and acceptance and awareness. Something I could never do, but am so thankful that they did. And now we have World Down Syndrome Day. That's just remarkable. Such an accomplishment.

Well done parents. Well done.

7 comments:

Anna Theurer said...

Cindy, you are contributing to the movement too and helping so many of us new moms. . . by blogging! There is a huge shortage of blogs written by mothers with kids over the age of 4yo.

Libraries and card catalogs were not that long ago! It is amazing how much has changed.

I don't think I ever told you this interesting tidbit: my Aunt Peggy was the youngest of 5 kids. She was not diagnosed with Ds until she was 3 months old. With so many kids being diagnosed in utero or shortly after birth (like Ellie) it seems so shocking that grandparents didn't know for 3 months! They were pioneers in keeping her home with them.

I am rambling again. One of these days I will leave a real comment that makes sense and flows nicely. Until then, please keep blogging and I love the pic of Beth when she was a wee little kiddo!

Anna Theurer said...

btw, I did feel isolate too. For the first 18 months of Ellie's life, Facebook never crossed my mind. Neither did Baby Center which is how I got the FB friends. I thought for the 1st 18 months that Ellie was the only child in Austin with Ds! I did have Google (evil) and Amazon (great for buying books!), but I didn't have any friends who were experiencing what I was experiencing. Now, like you said, we have WORLD Ds Day!

Jenny said...

I agree with the comment above that you are contributing in such a great way just by sharing your life with Beth with all of us. And there is a huge shortage of blogs about older kids. So I for one and very glad you take the time to blog :)

I can't imagine what it was like to raise a child with Ds back in the 80's. There is so much available to us now that I am sure we take for granted daily. Such a great post Cindy, it's interesting to see how far things have come in just the past 20 years or so.

Stephanie said...
This comment has been removed by the author.
Stephanie said...

I agree with Anna and Jenny--you are contributing. Do you know how rare it is to hear from a parent of an adult with Ds? You tell us the good, the bad, and the ugly and we NEED to hear that. The issues that you share with us about Beth--living independently, working, your concerns about her safety--help us forge a path for our own children. Yes, we've got some great technology, but we probably have the exact same worries you had when Beth was 5 years old.

Never stop writing, Cindy!

Kimberly said...

I have to agree that you are definitely contributing. Thank you for continuing to blog and your honesty about what is going on and your feelings.

Stephanie said...

Hi! So glad I found your blog! YES! It does seem like our kids were born in a completely different time. My son, Josh, is 27 and I sometimes envy the parents today with social media.

I hope you'll stop by our new online community - for and by parents like us! We don't want anyone to feel isolated! http://roadwevesharedgzp.weebly.com/