Friday, May 23, 2014

To The Mother of The Adult Son With Down Syndrome in The Grocery Store Today:

Dear Mother,

I saw you as we were all on our way to check out. I noticed your son instantly. Big cowboy hat, American flag vest, short stature, almond-shaped eyes. Down syndrome. I almost followed you into your line, but that seemed like stalking, so I spied the lengths of the other lines first, only joining yours when it was the shortest. 

I was alone, stopping for a few necessities on my way home from work. I thought about saying something to you. But I stopped myself. Your son is so much older. You've been on this road a long time. Maybe you're tired of it all. Maybe you don't want to engage with a fresh-faced newbie like me. 

Worse, maybe you're resentful of this life you are forced to lead. You are of retirement age. Your friends are probably snowbirds who get to travel at will while you stay behind caring for a child who, in other circumstances, would have left the nest years ago. Maybe you wish you had more freedom at this stage of your life. Maybe if I talked to you, I'd come away discouraged. I'm feeling a little raw right now. I've heard too many naysayers tell me how cute they are now, but just wait...

So I stayed quiet. And watched. 

I saw your son point to the gum and say something to your husband, who seemed genuinely interested and continued the conversation before putting a protective arm around his shoulders. I watched as he smiled when he listened to him. I saw you laugh as you added your two cents to the conversation.

I decided then that maybe you were safe to approach, but I didn't know how. 

You smiled at me as I unloaded my cart, but still I didn't know what to say.

When a woman talked to your son about his hat, I pounced.

"Is he a magnet for attention?" I asked you.

You smiled and responded that he is and that he fancies himself Tim McGraw. I grinned and mentioned that I, too, noticed his awesome hat. 

Then I plunged ahead. 

"I have two boys with Down syndrome, too. Five and four. They're attention magnets, as well." 

You looked surprised and murmured, "How wonderful," but then looked away like you were trying to decide if you'd really heard me. Looking up again you clarified, "You have two boys...?"

"With Down syndrome, yes," I finished for you. "One homegrown and one adopted from Serbia."

Then you smiled broadly, and said conspiratorially, "They're really a lot of fun aren't they?" Before I had a chance to respond, you turned to fill your husband and son in on all you'd learned about me. 

We exchanged some other pleasantries as you finished your transaction and bid each other a good day. 

I bumped into you again outside at the cart corral and I felt then, as I did inside, that our brief interlude was filled with pregnant pauses as we were each searching for what we really wanted to communicate in the confines of social pleasantries with a stranger. 

I drove away thinking that I'd blown it. 

Because if I could do it again, dear mother, I would not hesitate to thank you. 

I would thank you for paving the road for my boys. 

I am not the best judge of ages, but I imagine it's safe to assume that when your son was born, at least one professional told you he'd be better off in an institution. It was a suggestion you clearly did not choose to follow. Thank you for that. Because of mothers like you, I didn't have to fight that battle from my own hospital bed. 

Thank you for being a warrior mom who learned to ignore the stares and whispers and who proudly shares her boy with the world. You are changing hearts and minds in your clear love and acceptance of him. He is changing hearts and minds just by being. Because of both of you, acceptance of my boys comes just a bit easier for others. 

Thank you for letting him have his own style, for encouraging his passion, for letting him shine in his cowboy hat and rocking vest. He's making people smile. And in so doing, without realizing it, he's being an advocate for my boys, too.  

Thank you for any part you played, no matter how small, in the enactment of, or amendments to, the Individuals with Disabilities Education Act. While we continue to fight for a quality education for our children at every IEP meeting, we don't have to fight for them to be educated at all or to attend school in the first place because of parents like you. 

Thank you for walking this road when you probably felt unbelievably alone, before the support of social media, before Google, before WebMD. Thank you for standing up for the rights of your child, for challenging the status quo, for following your mother's heart. 

In short, it sounds ridiculous to say, which is probably why I didn't, but thank you for loving your son. In accepting, raising, being proud of, and loving him, you not only paved the way for him, you paved the way for me. 

I am grateful.

And yes, they really are a lot of fun!

54 comments:

  1. Thank you for your beautiful comments. I have a daughter, Amanda, who is 30 and the light of my life. She is a dancer, singer, artist and she and I share a love for The Big Bang Theory! Our girl time. Love your boys at every age and with your whole heart. (but don't be afraid to put your foot down, they will try to get away with all the things their "normal" friends would)!!!
    Marcia, mom of Amanda

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    1. Hahaha! Your words of admonition about putting my foot down made me laugh! Oh yes! We have experienced THAT! ;) Amanda sounds delightful. Thank you for sharing about her!

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    2. Love this so much! It made me think of my parents, both of whom are retired.. My brother just turned 40. Thanks for sharing!

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    3. One of the greatest joys in my life is working with these children... On days when I feel down, they always have a big hug for me... I just want to say , "Thank You, for sharing them with me"...

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    4. Tara,
      My eyes filled with tears as I read you message. Being parents of a Downs son who we were blessed to have with us for 52 years before he was called back home. He was a total Elvis Presley fan and made certain everyone was aware of it. He filled our hearts and our home with love and happiness. We know how blessed we were to have him for all those years. We too got the speech about "place him in a home and get on with your life". At the time we were very young, I was 21 and Mom was 19. When they made the speech to my wife it lit her fire and she collected our son and we left the hospital in the dust. That was in fact the best move of our lives, it was a wonderful 52 years. I am certain the Elvis himself met him at the pearly gates and they are singing and dancing up a storm together. We are also very thankful that we were chosen to have this wonderful child in our lives.

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    5. And my eyes filled with tears as I read yours! Thank you for sharing your Elvis-loving son with me.

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  2. Wow. I need a big box of tissues now.
    My son is six and will start kindergarten this fall. I often (too often) think about the future and wonder what it will be like. But I used to worry about age six, and things are just fine. <3

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  3. I'm eternally grateful to so many who paved the way for us - just by bringing their child home and including them in the everyday. I was reading another blog about people who stare at kids with disabilities, and I was thinking that I hope my stares are never misinterpreted. My son with DS is 17, and it doesn't matter if I see someone older or younger, I just always want to connect.

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  4. My son is 23, if you see us pleas talk, ask questions, I would love to fill you in. It's just me and him now and I love it

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    1. Same for me and my son alone and loving it

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    2. pamela- may 25,2014May 25, 2014 at 3:06 PM

      so proud you shared this and I cannot imagine how our life would be without our son who was born with downs syndrome 30 years ago, and he is the light when it seems dark and he makes me smile when I'm sad and we were told he has the characteristics of a baby with downs syndrome from his nurse the 3rd day in the hospital after he was born and then a nun came into our room before leaving the hospital and took my hand and turned it over and looked at my palm and did the same with my husbands and said to us "God only gives special children to special people and god has blessed you both and he will bring you much happiness and love and the nun was so right and he is so loved by us and all who is around him, thank you God and we love our son more than words could ever say:)

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  5. I grew up with my younger half-sister (now age 50) who had severe DS.
    Here's a movie that brings tears to my eyes every time I watch it.
    .
    A Child Is Waiting . Burt Lancaster . Judy Garland . 1962 .
    Produced by Stanley Kramer
    Directed by John Cassevettes

    some of my notes:
    https://www.dropbox.com/s/twtixs98qkw8nlf/A%20Child%20is%20Waiting.pdf

    > Play all
    OR at least watch sample # 8
    http://www.youtube.com/playlist?list=PLy61IjRsUuJvoizW3jIE1QB54Ov2poif_&index=1

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    1. I haven't heard of that movie. I'll have to look it up!

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  6. I also have observed parents with older children with D.S. and have wondered what it was like for them when their child was born. Thank God that the world is more excepting of our children but we still have a way to go. Thank you for sharing your letter.

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  7. From another mother of an adult son with Ds.... My husband, daughter from out-of-town and son had our first dinner together Friday, May 23rd in our son's condo. It was a great meal and an incredibly joyous moment for a family that has been lazer focused for the past 22 years on this goal.

    Write a vision statement for the boys and a vision statement for your family and then let it drive every decision you make.

    We are one year behind our goal of independent living by the age of twenty-one because we allowed him to fulfill his vision of going away to college for four years.

    He is the joy of our lives and you have double-dipped in the happiness pool!

    God bless and good luck.


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    1. This just made my day! Thank you for sharing and your words of advice! Congratulations to your family!

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  8. You sound like a delightful person and a wonderful mom, as does she. I work with all kinds of developmentally delayed children from infants to 5 or 6 year olds. I love what I am doing as a teacher's assistant. I frequently get to see these children from infancy to age 6. Down syndrome children are so loving and kind. They are precious jewels as are all children. Thank you for all you do for your special ones. They are special because of who they are, not becase they have an extra chromosone. They are all gems.

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  9. My husband's aunt was born in the 1930's and her mom was told all the things that Mom's of DS children are, she will never walk, talk, amount to anything. She through the unflagging patience of her mother could read, play the piano, ride a bicycle, all the things that girls do. She was such a joy to the family. We still miss her.

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    1. Thank you for this. I so hope that my boys will be valued (and one day missed) by the generations yet to come!

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  10. I have a son who is 32 and when he puts on his Usher cologne he is a chick magnet. And when he puts on his jacket I bought him from our local humane society he is a dog whisperer. He is a joy to be around. He is on adance team with 15 other Downs adults The Rockerz and they perform all around town. Couldnt imagine my life without him.

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  11. I also have a fierce desire to connect with other parents when I see them out but am reluctant to approach. I feel an automatic connection but worry that it's just my imagination. This was a beautiful letter that expresses everything I'd like to say. I loved reading the responses from parents. It's so encouraging.

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    1. I agree, Faith! I have been so encouraged by all the responses, too. I won't be so shy, next time!

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  12. Amazing is all I can say! And thank you!

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  13. Thank for this special story - you are very courageous. You might find my award winning book "Loving Andrew: a 52-year story of Down Syndrome. Andrew had a wonderful life and gave so much joy to all who knew him.

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    1. I'd love to read it! I'll look it up.

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  14. This was a beautiful post! (I'm seeing it all over fb!) My daughter will be 30 this fall and your post was very encouraging. Thank you.

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  15. My brother (youngest of 9) just turned 61. When I was in 5th grade our teacher told us if we had a family member with DS we were living with one of God's angels and we are a special family for God to entrust one of his special angels to us. When I was told 26 yrs ago that my daughter has DS You can't imagine the honor I felt in having been blessed twice over. My brother lives with us and he and my daughter are a pair to watch interact. I learned how to care for my daughter by watching my Mom (she truly was a pioneer in paving the way for our children). These 2 are the ones that keep me going and make a really bad day a much better one. Thank you for sharing your stores, I love reading them all.

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    1. What a gift your mom was to all of us and what a neat person you are, as well! I love your story! Thank you so much for sharing it!

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  16. My son is 26 and he's the light of our lives.

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  17. Beautifully said! Writing through happy tears.
    Our oldest son has DS & is turning 8 in a couple of weeks. He has lead us on this incredible journey that we never even knew to hope for. I often think of the parents that paved the road we are currently on & am so very grateful.
    Thank you for sharing!
    Cheers,
    Kate

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  18. My son Matthew is 24 and I can't imagine life without him. Bravo on the article, I loved it :)

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  19. I worked in nursing homes for a lot of years. In my time as an aide, I cared for several people with Down Syndrome. One man sticks out in my mind. He turned 68 the last year I worked there. I've been gone for ten years and the last time I played "Whatever happened to ___________?" With former coworkers who are still there, he was still a' kickin. He came in with his mom. She was a feisty old woman. She'd spank him with a fly swatter if she had a chance and thought he needed it. Until I read this blog post I never really thought about what all she must have endured to keep him with her all those years ago. I did often think about what they must have been told was his life expectancy way back then, and would giggle about how he had proved them all wrong. He was a joy to take care of and we all loved to just sit and chitchat with him in our downtime. He didn't have a huge vocabulary but he did have an amazing sense of humor and an undying love for strawberry milkshakes. We weren't technically supposed to bring stuff in for the residents but it happened. Don't ask, don't tell, I have no idea where he got that milkshake! Love your post!

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  20. As a forever mom of an adult son, age 42, I'm so thankful in our "retirement years" we have our delightful son who brings so much joy,and laughter to our lives. He loves living at home with us, and we are happy he keeps us so young at heart with his child like c ways of being so loving, and so helpful. He has two older sister's who deserve a whole lot of credit for being the greatest sister's along with their families. He loves music, dancing, playing the piano, drum, guitar, violin, and other instruments. He just loves life, and especially, the Lord.

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    1. So encouraging to hear of his love for the Lord. I hope to instill that love in our boys, as well!

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  21. Thanks for this. We have two boys with DS also, 10 and 12. I have had a lot of trepidation about the adult years and what they hold. Both your post and the comments gives me/us hope that they are as fun and satisfying as the childhood years have been,

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  22. Dear Fellow DS Mom,

    I see parents of young children with DS in stores and such and have to curb my urge to pounce on them and share my experiences with them. You see I'm 20 years down the long and winding road that is parenting a child with DS. I was so young and isolated as a 19 year old brand new mom. A surprise birth diagnosis left me terrified and confused. I had little to no support from family including my son's father who refused to utter the words Down Syndrome. Flyers and books from my Early Intervention Specialist (AKA My angel in a snazzy pantsuit lol) were my only resources. My teeny little community was home to one person with Down Syndrome and my son was him.

    Then came home internet. My first search on my first computer was "Down Syndrome support groups". Alex was 6 by this time but I still had so many questions and desperately needed so much support. The birth of social media opened up a whole new world for me! So much wisdom and understanding at my finger tips! I was HOOKED.

    Well, I'm still hooked. Only now I seek out new moms to share my experiences with. I celebrate their children's hard won milestones and am reminded of all of Alex's. Since Alex is 20 and still in high school, we still have a lot of firsts to go.

    Recently a group of students at his high school learned he never learned how to ride a bike. His low muscle tone makes balance difficult and he always refused to even try. I tucked the dream of seeing him ride a bike away a long time ago but these kids decided Alex needed to learn. They took it upon themselves to raise funds to purchase a very expensive 3 wheeled adaptive trike for Alex and last week I watched my baby hop on his brand new bike with its snazzy white basket he can pack stuff around in and his 6ft flag to make sure motorists see him. He took off like he was born on it! Now we had a scary few moments when he wouldn't use the hand brake but he mastered that within the hour.

    The next time you see a mom like me in a store, don't hesitate to approach. You may just find somebody like me. Eager to share the inspirational stories and war wounds that come with this journey. In fact, look me up on some social media and we'll compare battle scars. :)

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    1. Awesome! I only wish you could've included a picture of Alex on his snazzy bike!

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    2. Well you're in luck because they just published a story about it in our local paper with pictures.
      http://m.jacksoncountydaily.com/news/article_ff1b2d54-a7f9-5753-8ce8-f902da68aa6b.html?mode=jqm#.U4zimePSHDA.facebook

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    3. That is SO GREAT!!! And Alex is so handsome! I am so glad you thought to come back and leave me a link to the story! It made my day! :) Thank you!

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    4. Oh now that I found you I have you bookmarked lol. There is a small link below the story that days More about Alex Belcher. It shows various stories he's appeared in the paper for. He's kind of a big deal around here ;) He was on the front page 2 years running with his lovely girlfriend at our prom Walk Thru.

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  23. Well done on this awesome post. You summed it up perfectly! I have 10 month old twin boys, one ds one not. It's been a tough run due to a lot of medical issues for our ds son. But in the last few months he has reached a better place health wise. He has also started showing us his personality. And he is just beautiful! Fireworks can be going off behind me but he is intent on staring into my eyes and giving me giggles. My advice to any brand new mum going through that initial emotional free fall.... It gets so much better. And you will not believe how much you will fall in love with your ds child!

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  24. This is beautifully put. Talking with the older moms at the buddy walks is something that helped me so much when my son was still small. There is nothing like connecting with another parent that has been where you are and understands how you feel.

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  25. Thank you for this post! Brought me tears of joy! And you are so right on! How lucky we are to have such amazing opportunities for our special little ones!

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  26. Thank YOU for sharing this! I especially related to the part about allowing her son's style to shine through for the world. My son, who is 28, has his own style too and loves to go out in fancy hats, cool sunglasses, and "rock star" regalia whenever possible. I hope you'll follow us on "The Road We've Shared," it's a site specifically geared towards sharing stories from us "old folks" (parents and caregivers of adults who have Down syndrome) - I think you'll see we LOVE to encourage and share our different perspectives on what we've learned so far on this journey with "newbies" like you! Your boys are beautiful and I'm here to tell ya - they will ALWAYS be fun!

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  27. You don't know me, but you know me! I love this post!!! Long ago, my husband and I were blessed with identical twin boys 3 months and a week early. Our identical early birds were so different that we had trouble for a day or two, and the emotional roller coaster ride zoomed forward with us screaming and wondering if we would survive the ride. We've endured what we surmised as zero gravity rides, tilt-a-whirls, and bumper cars over the years, and we now sit holding hands on mile-high swings, watching those boys we now know as men. They are enrolled in community college and are doing really well. I wanted to share that we too are very thankful for those warriors you mentioned, and my hope is that each of us can continue paving the way for others who will walk the path. Stay strong, Mama!!!

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  28. even if english was my native language still could not express in words the emotion i felt while reading your post.We have a wonderfull boy with 10 with DS, a bless every day in our lives. An ocean away bur yet so close. From Portugal with love.

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  29. What a wonderful article you wrote and yes whenever I see parents with a Down's Syndrome child/adult, it feels like we're in a sort of special group, no explanations needed, we KNOW and FEEL the same with the same challenges etc. We immediately have that 'knowing' smile that we share with each other.Our own Andrew is 25 and works as a busboy in a Mexican Restaurant in Midland, TX. for the last 3 years. Andrew last week ran in his first 5 K Color Dash run with his trainer, Emily Broussard. I would not trade him for the world!! He's such a blessing in our lives.

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  30. Um Tara, look at YOU!! What a great article!! Remember when we were all in the process together? Well, you rocked it with this article and I'm so glad to see it being shared out in blog land! Hugs. lil G's mama.

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    1. Ikr?!? It's crazy, Anna! Makes me laugh! I'll take those hugs, you know. I've been keeping up with you and lil G and the remodeling adventure, btw. All in this together, still! ;)

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  31. LOVE THIS! My son doesn't have Down Syndrome but instead Prader-Willi Syndrome. We were blessed with him when he was 4 months old and he is now 14. Beautiful and true words you wrote. That reminded me a lot of my son at the grocery store where he knows EVERYONE and they all love him.

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  32. Just read this on yahoo. Your boys are beautiful.

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  33. As a retired teacher of a self-contained life skills classroom, your story brought back so many memories and smiles, remembering the wonderful kids with many different disabilities, including Downs Syndrome. My kids (yes, they were mine even though they didn't go home with me) with DS were the first with smiles and hugs - just brightened my day! I love your attitude, because it is a choice you have made which will positively impact all those who come into contact with you and your children. They truly are a blessing!

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  34. Thank you so much for this!! 38 years ago, we were told "she'll never walk or talk, put her away and forget you ever had her". I have helped pave the way...........but I am soooo thankful that parents today don't have to fight some of those battles that we did. There's always room for improvement in our society, but we're getting there!!
    And, no.........we did not put that beautiful girl away..........and she DOES walk and talk.........finished high school, has 2 jobs, and is the FAVORITE aunt of nieces and nephews. Thank God I didn't listen to the "experts". It's a great journey!!

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