Friday, February 19, 2010

Will Their Lives Turn Out OK?

Remember those Magic 8 balls? You'd ask a question, shake it up and wait for a cryptic answer to appear in its watery window... "No Way" or "Try Again" or "Maybe so". When it comes to my children with Down syndrome, I long for the answer to the niggling question... Will their lives turn out OK?

I'm sure I'm not alone.

When it comes to the well-being of my beautiful boys -- almost-5-year-old identical twins who were blessed with an extra 21st chromosome (for those who haven't heard me yell this amazing blessing from atop the highest mountain) -- it's my nature to gather as much information as I can to make the most informed decisions I can. I read blogs, research papers, news articles, magazines, books and more. I talk with every parent of a child with Down syndrome (or any other special need) and every "expert" that I encounter to gather their experience and knowledge and then twist it, turn it and apply it to our situation as possible. I reach out and connect with those seeking the elusive answer to the question, "Will their lives turn out OK?" to see what their answer looks like. And I look to those who have gone before me for insight and experience. Then I make my choices, settle my mind and blog about it so that others who come after might benefit from my experience.... to help them find their own answers.

But, this all encompassing question, "Will their lives turn out OK? has so many facets to it:

Will they be able to keep up in school? Graduate from High School? Go to college? Will they find true friends? Work in a rewarding job? Drive a car? Live independently?... And the list goes on. I even find myself occasionally wondering and hoping that 2 beautiful and deserving girls fall deeply and madly in love with my 2 beautiful and deserving boys someday. These are components of what I think lead to a "good" life. But I have to remind myself that these are my measures... not theirs. And these may or may not be components of their lives based on their choices. And, though I still secretly want all these things for them, when I'm thinking logically instead of emotionally, I believe their lives will turn out OK with or without these things.

Let's look at each of these individually and logically:

Will they be able to Keep up in School: I know many people -- with and without special needs -- who did miserably in school and/or took longer to get through it than the prescribed 13 years... and went on to lead very fulfilling lives (by their own AND society's measures). They chose a career path where they had particular knowledge, passion and talent and made it work for them. I've also seen many a child with special needs perform well academically and graduate with honors.

Will they Graduate from HS: I know countless folks -- with and without special needs -- who did not graduate from high school (and some who returned much later to receive GED diplomas which are, for all intents and purposes, the same thing as graduating from HS). These people hold fulfilling jobs and are able to support themselves and their families. As I said above, for any of us, following your passion and talents often leads to successful career outcomes... regardless of your education or your special needs.

Will they Go to College: Despite what many people think, college is still optional. There are lots of jobs and careers out there that do not require a college degree and still provide an individual with a rich and fulfilling life. I know tons of successful people -- with and without special needs -- who did well without a single college credit. And a bunch with advanced degrees who can't hold a job and/or who are miserable in life. For the record, I hear more and more each day of people with special needs who have acquired advanced degrees and are putting them to good use! With or without college, it'll be OK!

Will they find True Friends: For me, the definition of a true friend is a person in my life who accepts me for who I am, who loves me and who offers help in times of need. Sometimes it's family. Sometimes not. My boys already have true friends... people who love and accept them just as they are and who have already proven themselves to be supportive. Like the law of physics that says an object in motion will stay in motion, I believe their ability to have and be a true friend will always be there. It is human nature to care for others. We are, after all, pack animals and tend to gravitate to like-minded souls.

Will they have a Rewarding Career: Rewarding is a relative term, isn't it? So many, myself included, have settled for careers that are "good enough" because they are marginally enjoyable while allowing us to pay the bills and still give us the freedom to pursue happiness in other areas of our lives. Perhaps my 20-year career in marketing technology is not my calling or my passion, but it's certainly been more than OK and rewarding in its own rite. I know enough people -- with and without special needs -- that are in rewarding, good enough careers. I know as many -- with and without special needs -- that have chosen to pursue their ideal and most rewarding careers. It works both ways! So, my children will choose for themselves according to their ability, their opportunity, their passion and their drive.... just like the rest of us.

Will they learn to Drive a Car: Depending on where you live, driving can be highly over-rated and even sometimes considered extravagant. In NYC, people who own and drive a car are sometimes looked on as wasteful due to the unnecessary cost of maintenance and storage -- never mind the environmental considerations in such an over-populated area. The cities and suburbs are well-stocked with ample forms of public transportation and walking is becoming one of the most popular modes of transportation. One does not have to drive to get where they're going! That said, I've known and hear constantly of individuals -- with special needs -- who acquire their drivers' license, purchase a car and get around town on 4-wheels like the rest of us.

Will they be able to Live Independently: When I really consider it, living independently is an interesting term that hardly exists in reality. I don't live independently! I require the assistance of my husband who works while I stay home and take care of the kids. We share the cost and care of our lives. I did at one time live alone and "independently" pay my rent but I relied on my landlord to give me that shelter for a reasonable fee. And I, like most folks I know, specifically sought out others to share my life and responsibilities with. We live with friends or take roommates. We live in apartment buildings and co-ops to share the cost and maintenance of the land itself. We cohabitate or marry to share the responsiblities of home and children. From the regular Joe to the wealthiest guy... any one of us may hire babysitters, housekeepers, accountants, personal assistants and chefs to do for us what we need help with. Is it so different for my boys -- who might need assistance in certain areas to best conduct their lives? Is it any less acceptable for them to choose to live in close proximity with or garner the services of others who can assist them as needed? More and more people are choosing assisted living arrangements as they age too (anticipating the need for help). Interestingly.... during my career-ladder-climbing days, I lived by the notion that Donald Trump did not get rich because he knew everything. He got rich because he surrounded himself with people who knew and helped him to do the things he couldn't accomplish alone. Though he applied this principle to his career... it's no different for one's personal life! To the extent that they can and desire to do so, my boys will live to the level of independence they choose... just like I do.

Finally, Will They Have Rewarding Relationships: Gosh, I hope so. I can't imagine someone wouldn't fall madly in love with my boys... I certainly have! Though I hate to be practical on this one... in truth, most people -- with or without special needs -- have several sometimes rewarding and sometimes unrewarding relationships over the course of their lives. So I'll teach them what I can about finding someone special, falling in love and doing what it takes to maintain a rewarding relationship and hope for the best.

This, I think, is the hardest lesson for a mother to learn and accept: Regardless of what they achieve or don't achieve in my book, it's their life to live. Theirs to enjoy. To try, to fail and to succeed by their own standards. Not mine.

So, in the end, the Magic 8 ball does actually have the answer to that niggling question that lives in the shadowy parts of my mind and shows itself during my most doubtful moments... Will Their Lives Turn Out OK? And every now and then when it comes up, I shake up the proverbial magic ball in my head and get the same answer every time...

Yes, Absolutely!


  1. Reading your side bar... my most fav place to kiss, even at 10, is the special space between her nose and her eyes!
    As for the Magic 8 ball- I totally get it. Perfectly posted!

  2. Me too! THAT spot is as though it was formed perfectly to match my kiss! Heaven! Thanks for reading.

  3. Driving a car is essential in many areas of the country. Does it not make you sad that our children probably won't have that opportunity and independence. Remember getting your license... An amazing rite of passage that I mourn my child with DS won't have. I don't celebrate it like your post does.

    1. That may be true for some people and/or in some areas. OR, that could be a function of your definition of essential. I don't know... and, I defer under the assumption that you know your child best. I am still hopeful that mine, at a mere 9 years of age, might get there, whenever they get there, if they choose to get there. I hear with growing frequency, instances of young adults with Down syndrome gaining the privilege of driving. The idea that it is a "rite of passage" is, again, your predisposed notion. I didn't drive until my sophomore year in college. Just wasn't necessary where I went to college. My mother learned to drive after her 5 children flew the nest. My eldest sister learned well after graduating college AND I have an adult cousin who still does not drive. She lived most of her adult life in NYC where it is absolutely NOT necessary to drive. I guess "essential" is regional and or subjective. My motto is Believe... but remain flexible. Anything CAN happen!