Lately I’ve been thinking about the future. I know I shouldn’t do this too much. I’ve been told, and firmly believe, you should not concentrate on anything more than 3 years out with our kids. Anything more than that will just cause additional and perhaps needless worry. However, some things I have read and heard recently have gotten me thinking.
When Peanut was born my first thoughts were about how intellectually disabled she would be. I thought perhaps she would always be a “child” and never live on her own. We quickly learned this may not be the case. Many adults with Down syndrome get married, move out and even have jobs. I grabbed on to these promises and held tight. I was a little saddened because I had already decided it would be nice to have my “child” with me forever. Which of us don’t get a little sad when our children continually grow and mature? But, I was happy to know she had a bright future like her sisters.
In our day to day lives, I sometimes get so caught up on what is happening now, that I forget that my little girl is different. That she is (most likely) intellectually disabled, although she has never been given an IQ test. That although I learn so much from her and her innocent love and acceptance of others, she also has difficulty understanding certain concepts.
For instance, paper money can be a difficult concept for people with Down syndrome to understand. It all looks the same to them and a dollar bill seems to have the same value as a $20. This means my daughter has a greater chance of being taken advantage of as an adult. Although many people would help an intellectually disabled person, there are many more who would take advantage of this situation.
It is one more reminder to me that Peanut IS different from her sisters. Even though I hope she will one day live on her own, what does that really mean? Most likely she won’t be renting her own apartment without some level of assistance. If she goes to college, will she go to MU like her sisters (if my husband gets his way)? Probably not.
As I strive to give my daughter all the help I can get her so she can have the life SHE wants, I sometimes have to stop and take a reality check. I have to remember she will have challenges. One day she will not be the cute little girl that some may not even realize has Down syndrome and people may stop and stare or shy away from her. Will she notice, and if so, will she care?
The future is a mystery and at times, a little scary.
10 comments:
I was afraid of the age Rylie is now, school age, making friends etc. So far everything is going so well and I wish I never wasted so time worrying. So this is what I try to remind myself when I start thinking about the adult years.
It's hard though.
Beautiful post....
Having a mother like you your daughter will make it through each step...whatever they may be!
Have a great weekend....
So far, Carly makes friends no matter where she is. Kids love her. They all want to be around her. Help her, when she needs it...or let's them! I only pray this will continue throughout her life. I would love if Carly could be independent as and adult. However, I selfishly admit, I want her to live with me forever. I want to protect her from negativity that I know she will face from others someday. But then, I want her to be able to enjoy "her" life as she so chooses. For now, I will cherish every moment of her childhood. I don't look to far into the future either. I only look days and weeks ahead.
This is such a wonderful post!! You write so well!! Thank you for sharing your thoughts and fears.
It's something that's been on my mind A LOT lately. And why I so desperately want her to attend this private school. Because the private school also has ADULT programs -- and meaningful employment. I believe it's important to really think about what happens past 21. Geez, if you think getting services for your kid in EI or public school is tough, that's NOTHING compared to when they are 21. A sad reality. I think planning for that is a good thing, even if we don't know how independent our kids will be that far in the future.
@ Datri,
I don't disagree with you, however, if you consider how things were 20 years ago and how they are now, think of how much better it should (hopefully) be for our kids when they are adults. Sure there will still be difficulties, and we need to prepare our children now, but I hope they will have even more advantages then than they do now.
I can only imagine the difficulties in raising a child with special needs such as Downs. I can say though, as our Priest shared in his message today -- "If I have only but today..."
His message was that we are to enjoy today and not worry so much about tomorrow or next year (not to be irresponsible by any means) for what if we "Have only but today."
I found it dear to heart and I tapped my husband's shoulder to be sure he was 'really listening.' As this morning he was fretting himself about what he 'didn't' get done yesterday and what he needs to do today, tomorrow, and day on.
Life will continue to change things and we want to be prepared for our futures. But, if we weigh ourselves down with the worries of tomorrow we won't be able to fully love and enjoy today.
Does that help?
I certainly understand the reality check though. Just be sure to grab the happy with the worry...
Great post and thank you for sharing so openly. :-)
We have a few individual adults with Downs in our community and two of which are well known to be productive assets in our local business community; one working at a local grocer and another at Taco Bell.
They always put a smile on my face to see their determination and desire to achieve.
It's hard to not think of the future. But whatever she does, I bet she will be great at it!
Debbie,
This is my first visit to your site and I love the concept.
All your daughters are adorable. Regarding Peanut,it sounds like you are doing exactly what you need to do...you're loving and nurturing her. By doing this, you will give her the strength of character to deal with the challenges of life, whatever they be.
Post a Comment