Introduction from Maureen Wallace,  rookie mom of a child with Down syndrome

At least once a day since Robert “Ethan” Saylor died in January, I have thought about how my son, Charlie, could face a similar fate. Charlie has Down syndrome, just like Ethan.

Many other parents of children with Down syndrome have written eloquently, scorchingly and fervently since Ethan died (the International Alliance of Writers for Down syndrome provides a great round-up of blog posts, essays and articles). While some of us may disagree on the best way to move forward from the tragedy, we all agree an independent investigation is the only way we can begin to move forward. It’s the only way to stop the constant wondering, each day, what could or should have been done differently to save Ethan’s life. What can or should be done to make sure my son is safe.

As a parent, I’m always searching for the security of life’s “so long as” statements. “So long as I am with Charlie, nothing bad can happen.”

By the same token, I yearn for his independence. I want him to live a happy, fulfilled life — and independently, if possible. “So long as he can live independently, he will be happy.”

At one point, I thought Bridget Murphy and her son were living the dream I have for Charlie and me: Her adult son, Jack, has Down syndrome and attends college classes six hours from home, where he lives independently. How incredible! How awesome! What an amazing parent, to work so hard to make this happen? Is there a checklist to make that happen in our lives?

But wait.

It turns out, Jack’s independence doesn’t come without sacrifice. Mental, physical, emotional… Bridget shares what Jack’s independence — and in fact, his very being — has meant in her life, via a guest post below, in her words. The words of a veteran. Rookies (like me), take note. We may say, “Oh, that won’t happen to my son,” but that would be a tragedy, too.

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A letter to parents of children with Down syndrome, from Bridget Murphy

(a mom who’s been there)

I would like to address the idea that special considerations for someone with Down syndrome is synonymous with marginalizing someone with Down syndrome.  For the past twenty-one years I have looked Down syndrome straight in the eye (as long as my son, Jack, is wearing his glasses otherwise he is a bit cross eyed).  Before that, my 54-year-old sister’s roommates had Down syndrome so add another twenty years of exposure to the population.

My son has always had special needs and has always required special consideration so that he could grow, develop and become as independent as possible.  Let me list some of the ways he has been singled out for special treatment.

1. He started school at the age of seven weeks.  Everyone else in the neighborhood his age went to school at the age of three.
2. He used sign language.  No one else in the neighborhood used sign language until the kids asked to be taught so they could talk to Jack.
3. He wore an auditory trainer with headphones velcroed to a mini baseball cap worn backwards.  Clearly, he was a trendsetter in 1993.
4. He wore orthotics that he took off and threw away while in the stroller at shopping malls.  Waiving a fifty-dollar reward did get results.
5. He participates in Special Olympics.  He does not buy into the oath of simply trying one’s best.  Go gold or stay home is his motto.
6. He does not drive a car mainly because he can’t be bothered to study for the test.
7. He reads at a senior in college level and has for many years.  His word attack skills are off the charts.  His comprehension is stuck in third grade.
8. He is a whiz at anything having to do with a computer that waits for his commands and operates with complete logic.  He can’t figure out the Apple store.
9. He has tried for six years to grasp the concept of cash.  It is a heartbreaking struggle.  He is a disaster with a debit card.
10. He is registered with our local police/fire department.  His disability shows up when a 911 call is placed.  His bedroom is on a locator map for the fire department.  A policeman or fireman must be assigned to him so that he does not go back into the burning home to save the dog, his iPhone or anything that might result in his dad becoming angry about overdue fines.  (I think I still hold the record at Blockbuster.)

‘Singled out… every day’

He is singled out for his disability every day of his life.  He is not like typically developing people and no matter how much I wish he were for his sake as well as mine, it is not going to happen anytime in the near future.

He is not a child.  He is an adult living independently.  He does not regularly have a typically developing adult with him in the community to help him avoid inappropriate behavior or speak for him when his lower IQ does not allow him to grasp what behavior is expected of him in a confusing situation.  His default logic is that he will do what he wants to do whenever he wants to do it and he will not do what he doesn’t want to do whenever he doesn’t want to do it.  Years and years of training has allowed him to override this logic in many situations, but not all.

Questions and choices

What do you do when you have Down syndrome and have tried  and tried and tried to understand the correlation between the greenbacks in your wallet and the amount of food you can buy at the store.  When you have repeatedly been told by some stranger to put back food that has no monetary value in the first place, is it possible that you may one day say, “the heck with it” and walk out the door with your groceries?  Do you want a policeman to respond who has been trained to enlist a specialist to assist with the situation or do you want your adult with Ds included in the county jail population?

What do you do when you have Down syndrome and the lines at Worlds of Fun are too long to wait?  Logic tells you to go to the front of the line.  A shoving match erupts.  Do you want your adult with Ds to have a policeman trained to enlist a specialist to assist with the situation or do you want your adult with Ds included in the county jail population?

What do you do when you have Down syndrome and you are told by police to leave a building but there is a thunderstorm outside and you are deathly afraid of storms and refuse to leave?  Do you want your adult with Down syndrome to have a policeman trained to enlist a specialist to assist with the situation or do you want your adult with Ds hogtied and suffocated?

To parents of children with Down syndrome…

I know it is hard to see into the future when your children are young.  I know you wish that the playing field was level.  I know you wish that everyone could see your young child the way you see him.  And I know that you want to change the world.

But, you are not the parent or sibling or advocate of an adult with an intellectual disability.  I am.  You have not watched your adult child walk out the door and each time taken a mental snapshot because you may never see him again.  You do not carefully delete phone messages in a manner that makes sure you always have a recording of his voice because you may never hear it again.  You have not had to second-guess yourself when leaving him on a college campus six hours from home.  You have not had to diagnose second degree burns or sepsis over the phone.  I have.

I pull rank on all of you. 

I get to do this because I have accepted the challenges and borne the brunt of the mistakes made by those with Down syndrome who have been first to walk through the door to independent living.  I have made myself sick to my stomach imagining the situations in which I may have allowed my son to become ensnared.

I have received the phone call from my son stating that he was going to get in trouble with the police if stayed in the bar past nine o’clock since he had not yet turned twenty-one.  He was going to get kicked out of college if he got into trouble with the police.  He tried to leave to walk six blocks back to the dorm but a stranger made him go back into the bar.  I asked him what the sound was in the background.  Tornado sirens.

I have received the call that he had been left alone in the Detroit airport and missed his flight.  And I’ve kissed him goodbye for the return flight only to have him ask if he should get off the plane in Detroit or go on to Shanghai?

A mother’s plea

For the sacrifices my family and I have made for yours, for the countless hours of training, advocacy, fundraising and handholding I have done for this community and for the love of all that is Holy, demand training for all law enforcement personnel as well as a secondary safety net program for our adults living independently.

Ethan Saylor was left to his own devices for only five minutes.

Thank you.

Bridget Murphy

Who is Bridget Murphy?

During her tenure, Bridget Murphy served five terms as Board President of the Down Syndrome Guild of Greater Kansas City.  She has chaired the Down Syndrome Affiliates in Action Steering Committee and served as its inaugural Vice-President.  Bridget has served on the Board of First Downs for Down Syndrome as well as the Special Education Advisory Council for the Blue Valley School District in Overland Park, Kansas.  She has also served on the Steering Committee for EXTEND, an alumni and friends organization for the REACH program at the University of Iowa.  Bridget lectures nationally on topics relating to raising and educating children with Down syndrome.  She also consults with school districts and Down syndrome organizations.