Seeing the World Differently

When Beth was born I remember searching for pictures and books that would show what our lives would be like when she got older. What do adults with Down Syndrome look like? How do they act? What are their families like?

With no internet back then, I basically had encyclopedias and outdated books from the library. The hospital gave us one that was in black and white and only had drawings, no photographs. I think it was from the 60's. To this day I remember the desire, the ache to know what life would be like when she was an adult. 

Today, I'm living in that future and it's not as big a deal as I first thought. If I had known someone who had a grown child with Ds and they told me that their child did this and that, I would have assumed Beth would do this and that too. But I'm older now and I realize that people with special needs are as different as everyone else. Just cause your child does something doesn't mean mine will and vise versa.

Our day to day life can be pretty boring. I keep teaching Beth, keep showing her how to do things. Things my other girls picked up naturally. Cell phones for instance. Beth turns her ringer off all. the. time. I got home home from work yesterday and went downstairs to say Hi. She immediately asked if I got her text. I told her I did and that I replied to her, did she get MY text? No. Then she started to dig in her purse to find her phone. Which means she sent me the text, then tossed her phone into her purse.

She called the house earlier today and I was out pulling weeds. By the time I got to the phone, she hung up so I called her back. It went straight to voice mail so I expect her ringer is off and she didn't hear it. So now I don't know if she was upset about something or just calling to tell me what she sang at karaoke or to ask what we're having for dinner tonight. I went back to pulling weeds and starting thinking about how I need to explain to her - again - about keeping her phone volume up and keeping it near her if she's texting or calling people.

Then I starting thinking about how I never had to explain that to Sharaya and Diana. They just knew. In fact, they explain things to ME, "Mom, we use vowels now when we text." Oh.

Beth still needs to be taught so many things that I figure she should just know. Like the phone thing. Or laundry. She pours the laundry soap in. POURS. I tried showing her the lid with the lines inside to help you measure... but those were hard for me to see, and I wondered if they were hard for her to see too. So I bought a small measuring cup and explained that she only needs a certain amount... problem solved. Now she uses the measuring cup every time.

What will life be like when your child grows up? Pretty basic. Some days will be down right boring. And it may look very different from ours. But I think, especially if your child lives with you into adulthood, that there will be times when the usual just won't work and you'll need to adjust. Adjust teaching methods. I think you'll always be teaching. And I think you'll see the world differently.

If I Could Go Back and Do It Again

Can't believe it's been almost a week since I've posted. It seems as we get older, our lives are getting busier. That's not how it's supposed to happen, is it?

There was an article that went around a few months ago, written by an adult with Down Syndrome and one of the things he talked about was sitting at the kitchen table and being left out of the conversation because everyone was speaking so fast. He said that he knew he was being left out. He wanted the rest of us to know it too. Unfortunately I can't remember his name (my memory, ugh) but that article had a deep impact on me. I think about it almost daily.

One thing I've started doing as a result of reading that article is talking slower around Beth. I don't slow down so much to seem obnoxious but  just  enough  for  her  to  be  able  to  process  the  words  before  I  move  on  to  the  next  thing.

I don't think others notice when I'm doing it. I try not to be one of those people who talk really loud and up close to someone who is hard of hearing, I  just  slow  my  speech  slightly  and  I  can  see  her  processing  the  words  as  I  say  them.  She  doesn't  ask  me  to  repeat  things  as  often  and  I  find  myself  wishing  everyone  spoke  to  her  this  way.

It's  been  quite  an  adjustment  but  it's  been  amazing  to  watch  the  change  in  her.  She's  more  willing  to  talk  and  is  definitely  more  willing  to  listen.

If  I  could  go  back  about  10  years,  I  would  have  started  talking  to  Beth  like  this  right  about  the  time  she  graduated  from  high  school.  As  a  kid,  Beth  was  active  and  silly  and  as  busy  as  my  other  kids.  But  as  an  adult,  she  has  become  slower,  quieter,  and  more  calm.  Not  sure  that's  what  happens  to  all  adults  who  have  Down  Syndrome,  but  that's  what  happened  to  her.  Unfortunately,  I  didn't  slow  down.  I  kept  thinking  fast,  and  talking  fast.  And  I  would  get  frustrated  when  she  didn't  keep  up.  But  I'm  trying  to  change.  I'm  trying  to  slow  down  a  little.  Trying  to  keep  her  included  in  the  conversation.

A Big Surprise

We walked in the door from our vacation, pulling our luggage behind us. Beth immediately took hers to her room.... and stopped dead in her tracks. Her sister Diana had switched rooms while we were gone!

It is something we have talked about doing for years. When her sisters move out, Beth would move downstairs and get her own 'apartment'. We have a daylight basement with a bedroom and large family room. The family room would become her livingroom and kitchenette. We knew it would be alot of work and have been in the planning stages for a very long time. Well, not any more!

In the 2 1/2 days we were gone, Diana took everything out of the rooms, painted BOTH rooms, drug furniture up and down the stairs and put both rooms back together. Wow! Beth was shocked. She reluctantly took her suitcase down the stairs and just sat on her bed. For a couple of nights she didn't even sleep. I woke up at 3 one morning to find her watching TV. At 5 AM, she was in the kitchen getting something to drink. It has been quite an adjustment for her. Her night light creates unfamiliar shadows on the wall. The furniture is not arranged exactly as it was. Change is difficult for Beth. It's been more than a week and I think she is finally beginning to adjust to her new room. She slept on the couch for a while, but has been in her bed the last few nights. The family room still has some extra furniture and there are boxes yet to be unpacked. We have been cleaning closets and sorting through drawers. Today Beth and I went though her large bin of crayons, markers and colored pencils. We checked every marker and threw away those that no longer worked. We put all the good crayons in a bag and Beth is going to donate them to All Aboard. (An organization that provides activities for adults with special needs.) She then sharpened all the colored pencils! There were a lot!