Adults with Disabilities and the Beam in Society’s Eye

I was reading a post written by Ellen over at To The Max. Ellen is an excellent writer.  She is also a very loving Mom to two kids, Sabrina, and Max, who has cerebral palsy.  Max  has a smile that will make your day and an unsurpassed devotion to the color purple.

Ellen writes  about her experience of watching a young woman with Down syndrome who holds a job cleaning tables at Whole Foods.  Ellen is very honest in her post as she describes an unexpected moment of  self questioning where she wonders if wiping the tables at Whole Foods is a job her son, Max might have some day.

Ellen writes:

“This was not my plan for my child. Not that I had a specific plan, but it vaguely included brilliance, a top-notch college and a high-powered job. It did not include cleaning tables, mopping floors, pushing the mail cart around an office or other jobs I have seen people with disabilities doing.”

Maybe it is because I have 5 older kids.  3 that are in college. The oldest just passed her Praxis and is applying for a position as an Intern for Alpine School District.  After which she will  be hired as a teacher. Another dreams of fighting fires.  He’s majoring in Fire Science, and will need to get his EMT.  The third is  praying to be accepted into the nursing program of her dreams.

All of my kids are above average in the smarts department, with one who has tested off the charts.

Smart, yes.

But brilliant?   Well,  Reed and I don’t  qualify for that status either.  So I guess my kids could blame it on their gene pool, but I don’t feel sorrow that they aren’t brilliantly solving the problems of the universe.

I put much more value on their making the world a better place each in their own unique way.

So, while Ellen feels  grief  while watching this young woman, my reaction comes in the form of a big ‘ol

Whoa.

See, I have never once felt a moment of grief over the ‘could have beens’ with Parkrer’s extra chromosome.

Each time I look at Parker I see a little kid who is being who he was meant to be….perfectly.

That’s not to say that the feelings of other parents of children with special needs are wrong.

Because there is no wrong or right here.  Just each person’s personal experience.

Ellen is very bravely sharing her feelings openly and honestly.

(Did I ever tell you about my dear friend, who when hearing that her brand new son had Down syndrome, remembers her first thought being how never again could her family have another family portrait taken. A few years later, in a Christmas card she sent to me, this friend shared that if there was a cure for Down syndrome, she would pour it down the sink.)

Anyhow, back to my point here.

Ellen writes that seven years after Max’s birth, she still mourns the loss of the child she expected, even though she adores the child that Max is.

She says that this is something that she believes that only a parent of a child with disabilities understands. And yet, even though I hold a membership card to the disabilities club, I. still. don’t. get. it.

When someone expresses grief over the loss of a loved one, that I can relate to.  I’ve experienced it.

But I’ve never experienced grief over Parker’s living, over whatever happened to cause those chromosomes to stick together.

Now just so you don’t think I live in denial, or a place where unicorns and rainbows reside, when I see typical 5 years olds, my heart does indeed sometimes skip a beat.

I find myself remembering that typical 5 year olds really are much taller than Parker. Most 5 year olds don’t breathe out of a hole in their neck or eat via  a hole that goes directly into their stomachs. And they talk.  Most typical 5 year olds talk.

But I have never felt grief over who he might have been if not for that extra chromosome.

When I see a disabled adult  bagging groceries at the grocery store, or cleaning tables at the Rainbow Cafe up at Primary Childrens hospital, I whisper a little, “YES!”

Then I go up and  introduce myself and Parker. I search out the line the man with Down syndrome is bagging at.  Even though that line is always the longest because everybody adores Dean, that’s the line I park my cart in.  I thank the disabled man as he washes down the table we are about to sit at.

Then I write letters to PCMC and Albertson’s corporate offices thanking them for hiring such excellent employees.

I see both the disabled adult and the companies that hire them as forging the path for those that will come later.

I feel pride.  It brings me great courage.  I get excited at the thought of Parker being able to have these experiences.

Where Ellen felt unnerved, and described seeing an adult with disabilities as being a shock to the system, I feel only joy.

And while I use Ellen’s post as an example, there are many other parents who feel this same way.

And remember, I’m not judging here.  I’m not condemning anyone’s feelings.   Seeing how deeply this topic affects other parents has really made me think.

I’d like to know if there are others out there who feel the way I do.

Or maybe some that feel the way that Ellen does sometimes and then the way I do at other times.

And then I’d like to remind everyone, that there are many, many people who right this very second, would be thrilled to be offered a job cleaning tables, bagging groceries, and sweeping the floor.

Maybe it is time for all of society to remove a beam from our collective eyes.

It’s time  our corporation of humanity recognizes the value of any type of honest work, regardless of who is doing it.  This world would be a pretty boring place if we were all rocket scientists, or brain surgeons.

Imagine if we all refused to buy into the social and intellectual caste system that permeates our culture, how much better life would be for everyone.

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. Nicki (aka Andrew's Mom) says:

    When we got the news that Andrew had DS I didn’t bat an eye. I wanted a fourth child & I got a fourth child. The fact that he had a little something extra didn’t phase me at all…it actualy intrigued me. It excited me. I had 3 typical kids already and now, with Andrew, I get to do something a bit different. Off the beaten path. I liked that idea. My Dr. was fabulous and told me the story of his adult cousin who has DS. This man lives independantly in his own apartment and takes public transportation to/from work every day to his job as janitor at one of our state’s major hospitals. At first I was devestated. Was that all my son’s life was to be? A janitor? Cleaning up other people’s messes? Having others look on him with pity because that’s the only job he can get? I wallowed in pity……for about 5 seconds. Then I realized that I HAVE friends that are school and hospital janitors. I think no less of them because they clean up after people. They are wonderful people for WHO THEY ARE, not because of the job they hold. My son is, and will be, a wonderful person. Period. A job, any job, is not going to define him.

  2. Tamara says:

    I feel the same way. I never went through that whole stages of grieving thing when Shawen was born. I have a hard time truly empathizing with parents of a newborn who are going through it. After reading all the birth stories out there, I sometimes wonder what’s wrong with me! But, then I just move on. lol. I have learned to not comment when someone is expressing those feelings on a board or something because I just can’t get it right! I agree – not criticizing the feelings – just didn’t experience them …

  3. There was, early on, a part of me that grieved for the pregnancy I expected, for the daughter I thought I was having (we’d been told multiple times that Alex was a girl via ultrasound), and for the *experience* of having a take-home baby who met milestones on time and did all those normal things.

    I don’t handle the unexpected that well, and our experience with Alex certainly didn’t match anything in “What to Expect When You’re Expecting”

    That being said, we’ve argued with one of our nurses, who once said that she hopes Alex grows up to be a professional football player, because they make a lot of money. I said that making a lot of money wasn’t the goal – finding a life that makes him happy and fulfilled is the goal, whatever that life may be.

    She’s baffled by this perspective.

  4. Hey, Tammy. Thank you for this post. It’s so well said and respectful of the gamut of emotions that parents of kids with special needs go through, because obviously there is a huge range. Even within the same person; in the post I wrote I bounced between “It is awesome that woman has a job she loves” to “Is that what’s in store for Max?” And, of course, I am grateful that places like Whole Foods hire people with disabilities. But, yes, I still struggle with what happened to my child. The feelings have dwindled over the years, though at times they rise to the surface…as you can tell. I think the bottom line here is that we are all moms who love our children boundlessly and who are their best champions! Oh, and BTW, I do not consider myself brilliant, either. Sometimes, you wish things for your child that you yourself do not have. :) I agree, though, that I would like for Max to grow up and make this world a better place. Yet in many ways, he already has.

  5. I really think it comes in waves. There was a time when Brady was a baby when I really felt like bagging groceries or cleaning tables would not be for him, but now, now that I know WHO Brady is – I think they would be great jobs for him (heck – for my other teenagers too!) I don’t want to say I was a down syndrome superstar snob – but – I was, in a way. I wanted to believe that Brady was going to be able to do more, be more, than the generation of adults with DS before him. I think I needed to believe that, at the time.

    Now I see things in a different light – and I will be thrilled if Brady can find a job – paid or volunteer – that gives him fulfillment and brings him joy. I want his life to be filled with acceptance, love, joy, and feeling successful. I don’t know exactly where that path will take him – or us, as we tag along – but I know it will be a grand adventure, and that whatever he ends up doing (from being his own individual movie critic, to working for us or someone else) will be the right thing for him :)

  6. I just read that on Love that max. I love her perspective. In the last 3 years a lot has changed for me. Including how I view other people. I just wrote about how I still feel guilty 4 years later but that I still love my child. I feel a lot like Ellen and love her outlook. Though I think again it is different for everyone who has a kid with a disability it was nice to hear that you feel different. I mourn the kid I thought I would have but rejoice in the one I do have. I wonder what life will hold for him but fight for what he needs now. I hope some day that they will find ways to help babies like Tyler. He doesn’t have an extra chormosome so I don’t know if that makes the difference but his birth experience made him this way.

    Maybe that is why I feel guilt.

    Thanks for the great post!

  7. The thing that makes our children different from Ellen’s child is that the outcome could have been different with her child. No matter what I would have done during my pregnancy or delivery it wouldn’t have changed the outcome. It makes it easier for us to accept the diagnosis and celebrate it. We don’t have so many of the ‘what ifs’ that Ellen may have.

    I definitely grieved the baby that I thought I was getting when Morgan was born for about 24 hours and then didn’t grieve anymore. I am one of those moms though that would change the Ds. If they found a pill that would make her function at a higher ability and take away her negative behaviors…I’d be first in line for it. Does that make me not love Morgan as much as you love Parker? I don’t know. Maybe I just don’t love the Down syndrome as much as you do. It give Morgan so many challenges and she spends a lot of time being unhappy and grouchy. I’d love to see her free from so many challenges. That’s all.

    • “I am one of those moms though that would change the Ds. If they found a pill that would make her function at a higher ability and take away her negative behaviors…I’d be first in line for it. Does that make me not love Morgan as much as you love Parker?”

      Heather! Of course it doesn’t! Not one whit. You are perfectly fine in your feelings toward the Down syndrome. There is no right or wrong here. Just different perspectives.

      Remember, that I would be the first in line for a cure for Pulmonary Hypertension. And perhaps that’s why I don’t grieve over the chromosome. I’m too busy praying for help with the pulmonary hypertension. The extra chromosome isn’t going to kill Parker. However I can’t say that about the PH.

      There are those who would say that my faith is weak and not understand how I struggle with the whole ‘let go and let God’ idea.

      But struggle I do.

  8. Tammy, I just adore you.

    You know, I will be completely honest. When we were setting up to adopt, we put in for a “healthy” child. What we got turned out to be the farthest thing from “healthy!” We grieved. Not for ourselves as much as for Jack. Because we knew how hard his battle would be.

    I have a hard time reading Ellen’s stuff (Sorry, Ellen, you seem really cool and all….) because while she goes through some “stuff”—she doesn’t quite “get it”. I wish I could use some more quotations. (sorry Tammy)

    Anyway, that said, I adore you and all that you do to raise such an incredibly awesome family. We’re going to fight this battle uphill both ways together for the next however many years, right? xoxoxo

  9. Its not often that I read something, and then ponder it the rest of the day, and if I do, I rarely comment back to the person who wrote it. But today, both of those happened. At the same time, and at the same place. With your post…I dont have a leg to stand on when it comes to DS. The only way I can relate to what your saying is with my nephew (Who I have custody of) who has autism, and a few other issues along with it. A nephew who “Appears” to be his actual age, but is behind in so many ways. Im on the fence with this topic, I read both your post, and the post you refer to and agree, 100% with both of you. I wouldnt change anything about him, but in another sense, I wish sometimes, that things could be different, easier, if you will, on him. Of course, I flip back and forth so often. He has changed my perspective on life, given a whole new outlook and changed things in so many different ways, besides, he IS perfect (to me atleast) the way he is. But then I have to wonder why things cant be easier, what his future holds, and why he cant live what people refer to as a “Normal” life. Its a difficult line to walk, atleast for me, holding the perspective that this is who he is, and I love him for it, without wanting to change things too much. I can get upset with the person who says that their live is so much better because they can look at someone with disabilities and think “Atleast I dont have that problem” but I also can stand and argue with someone who says they are happy for disabilities and the perspectives they give – even though I agree. Thanks for sharing, you have a really neat perspective (and son as well :)

  10. I have two children with congenital heart defects. The oldest one suffered a brain injury somewhere along the way — many possibilities since she was soooo sick from her heart condition. I believed for many years that she was born brain-healthy and that she would have been typical except for her heart. And I mourned that injury and the many many losses I saw — breathing and swallowing disorders, cerebral palsy, seizures, etc. I watched the other kids her age and bounced from “happy for them” to “sad for us.” I tried to imagine what Ellie would have been like without her CP.

    Then our fourth child was born with heart defects too. And I became convinced that there’s some sort of genetic thing going on. He is developing typically, though. He has no brain injury, no seizures, no eating or breathing issues. We are so thankful for this, though I will never stop watching him like a hawk, especially since Ellie passed away 14 months ago and we don’t know if it was her heart or a seizure or what.

    I’m not sure where I’m going with this, except to say that I can relate to both ideas. I have accepted the conditions my son has, and I think that he will be a tough kid for all he has gone through. But at the same time I would have cured my daughter’s heart and her brain in a heartbeat.

    I hear people they wouldn’t change anything and I can’t relate to that. I wish I could be that way, but seeing all the things that my kids have had to go through just tears me up. And my daughter didn’t survive it either — I’m sure that’s a big part of it.

    Thanks for being so open about things, tammy. It’s refreshing to read “real” people talking about special needs. :)

  11. I have a lot of the same thoughts you do. I’m always so excited to see the bagger at the grocery store with down syndrome. And I will be so proud of my Jayden if that’s what he ends up doing as an adult. I love the down syndrome employee at Wal-Mart greeting people. I love the down syndrome girl working at Target stocking clothing. I think I was in shock when I found out Jayden had down syndrome. I don’t believe I ever “grieved” over what he wasn’t. Maybe I had a little bit of denial, but not grief. I saved the grieving for when he was in the PICU fighting for his life, having a machine breathing for him, having doctor after doctor tell us that he probably won’t make it. That is worth grieving over. It’s the complications with down syndrome that I grieve for. Like you said, wanting a cure for pulmonary hypertension. I want that too. And a cure for all the other things that our down syndrome babies have a higher chance of getting. I once had a man in my ward (and it’s ironic that he’s now our bishop) that was out of work and couldn’t find a job anywhere. He made the comment about not wanting to go and be a wal-mart greeter. I was so offended at the time! (Have since gotten over it.) But all I could think of, “I would be dang proud of my Jayden being a wal-mart greeter.”

  12. Emily says:

    This was a great post. When we found out that Justin had Down syndrome (6 months of age), I would be lying if I said I jumped for joy. I was scared to death. He was my first and only encounter with Down syndrome. I had NO IDEA what this meant for him and his future. I NEVER once worried about me…. I knew he was sent to our home for a reason, but fear took over. Luckily, only for ONE day! When we woke up the next day, something was different. It was better! Even though it’s hard to see other kids his age walk and talk… I wouldn’t take the Down syndrome away from him for anything. LOVE him and his extra chromosome!

  13. Chris says:

    I think one difference between some parents of children with disabilites is facing the very real possibility of our child dying. As you said, the DS itself won’t kill a child, but the related disorders may. There is something about actually facing that horrible moment- when death is an ever-so-real possibility that very day, that gives an amazing perspective. I remember being in limbo after Nana was born- having a hard time with the DS diagnoses and being almost relieved that she had a heart defect because maybe she would slip away and we could pretend it all never happened (ha). And then, the day of her OHS and the few weeks after when things were touch and go- all I knew was that I did NOT want this child, my baby, to die. That changed everything. The DS didn’t matter anywhere near as much and I was just so grateful that she made it. I know you know that feeling.

  14. Claire says:

    Dear Tammy,

    I liked your post. It made me think of the young people in “The Specials.” It’s about 5 people who share a house, they have jobs, go to college and go out to have fun. Oh, and they all have a learning disability too. Could this be Parker’s future?

    http://www.the-specials.com/

  15. Hi Parker’s Mum,

    I happen to think that wiping down tables and sorting mail correctly are pretty important jobs in the scheme of things.
    A clean table when I sit down to eat a takeaway means less chance of picking up the stomach virus or flu that the previous occupant might have helpfully sneezed all over it.
    And correctly sorted and delivered mail might just hold the connection between you and your bank, your next employer, your insurance company or even your doctor telling you to get back in touch in time to arrest a health worry.
    So I’m actually kind of glad when I see someone who cares about the job doing it diligently.

    My hope for my kids is that they achieve some kind of independence, even supported independence (both have autism) and live by their own means rather than on state benefit for their lives.
    And of course that they go on to develop A Cure for Cancer and Achieve World Peace.

    xx

  16. I think you said it right, “…there is no wrong or right here. Just each person’s personal experience.”
    I think I’m with you in that I don’t grieve over what my children “could” be without their extra chromosome. Although I have many many days where I think things would be a whole lot easier if they could just talk, or were potty trained, or could walk. But I don’t think those things take away from that extra chromosome. I don’t know them without it and I think that outweighs the other stuff.
    Thanks!

  17. What a great post. It’s so interesting to know how other moms feel. Antalya was my first pregnancy, and we found out about the Ds prenatally at the very end of the pregnancy. There was a short grieving time of feeling like I had lost the child I was carrying, but I soon realized what a relief it was to wipe away all expectations I had.
    When I was growing up, my mom had a lot of expectations for me. She wanted me to act a certain way, be a certain way, desire certain things – it drove me crazy. I never was, and probably never will be the daughter she expected me to be.
    I loved that the Ds diagnosis helped me readjust my thinking and welcome my daughter into this world without any expectations of what she would accomplish or who she would become. I knew she was special and that she would become the best person she could, and that was all I could ever want for her.
    And yes, whenever I see an adult with special needs doing a job I feel a great sense of pride thinking my daughter also, might one day have a job and earn a living.

  18. Weekend Cowgirl says:

    Wonderful post. I think any job that can be done and gives anyone satisfaction is honorable… my two good friends have Down’s Syndrome and are both 33. They are very proud of their jobs.

  19. What a great post, Tammy! Neither I nor my parents were sad when we found out about my brother’s DS. We didn’t grieve the loss of this “other child” we had dreamt of at all.

    God created Osiyyah the way he is, with his extra chromosome and who are we to not be thankful for it? Yes, some of the health problems associated with DS are not a blessing, but my little man, Osiyyah is a blessing.

    If there were a cure for DS, no I would not want to take it for him either. If there was a way we could take away the damaging effects of the extra chromosome, but still have my brother with all the joy that the extra chromosome can bring, that would be wonderful. But, I don’t see that happening at any time.

    So, we continue to be thankful for Osiyyah and hardly even blink an eye at his “diagnosis.” Being #10 of 11 kids, he just adds a new dynamic to an already crazy, interesting, unique household.

    Qadoshyah

  20. What an interesting post! I read Ellen’s post and then I read yours – two examples of great parents navigating their journey through special needs.

  21. I would dare say I’m somewhere in the middle on this topic.

    I think I went through a stage of mourning the child I expected, then “got over it.” I still do have those moments, like you, when I see another child my daughter’s age when my heart skips a beat, just a little.

    I just beam when I see people with special needs excelling at whatever they are doing, no matter what that is. Especially now that I’m a special needs mom — I know how hard they and their families have worked to get them to that place and it is just simply amazing.

  22. All I can say is my daughter (ASD) has told me a couple of times now that she wants to be a doctor when she grows up. I am pulled in two directions. My parents backed me in every possible way to achieve the things that I wanted to achieve. I have always wanted to honor them by doing the same for my kids. So I will never discourage her from this dream or any other. She’s just in KG, so there will probably be many changes in her dreams over the next dozen years or so. I think she honestly has the determination and perseverance to do anything she wants…it just might take her longer to get there. Then there’s the other piece that, as some other moms here have written, just wants her to be happy, productive, and as independent as possible, no matter what career path that puts her on. ASD is different from DS, I guess, in that there’s not necessarily a clear cut “diagnosis” from the start…in our case it was a very slow (and continuing) unfolding of discovering who this charming and challenging girl is. There was some begging of God to let it not be so along the way, but when the answer became “clearer” I discovered that the world hadn’t stopped spinning and that our daughter was just as loved before as after. There was actually some sense of relief that all of her challenges weren’t just a result of me being an inexperienced mom. Any grief I have is mainly over the lack of understanding by our culture, the challenges of finding the right services and therapies and not being able to afford them when we do, and the sense that no matter what we do there will be another challenge to meet tomorrow.

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