Mother’s Day: Celebrating the “Special Moms” Club

Happy Mother's Day to those of You with a Disabled Child {And the Joy it Brings}
Happy Mother’s Day to many of you who are “Special Moms” of children with special needs. The club has only one admittance policy, you must be the mother of a special needs child. The club welcomes everyone who has a special needs child and doesn’t discriminate by race, religion, age, or gender. All are welcomed here. We belong to a club where many of the members didn’t really want to be in this club at the beginning; some of us may have cried for days, some of us were in denial, but your child wanted you to belong to this exclusive “Special Moms” Club.

How I joined the “Special Moms” Club

I joined this club 32 years ago where our daughter Samantha was born with Down Syndrome. When she was born we didn’t know she had Down Syndrome. The doctor came to my room in the middle of the night and announced his suspicions in a matter-of-fact way. ( I think doctors need to show a little empathy when being the bearer of bad news.) Tears were shed in the quietness of my hospital room with little Samantha nestled in my arms. From that moment on, she has always been at my side and I have been her voice and advocate.

Happy Mother's Day to those of You with a Special Needs Child

My world was quickly filled with therapy classes and social workers. Sammy began group therapy at 3 months old and went to a wonderful all Down Syndrome pre-school class until she was 7.

I even started the first inclusive program in Basking Ridge, New Jersey when we were preparing Sammy to enter into kindergarten. I was supported by the principal, the teachers, and the caseworkers involved in educating Sammy. I felt she could handle being in a ‘normal class” in elementary school, but she showed signs of stress by 4th grade and we moved her into a self-contained class environment all the way through high school but she continued to go to “normal classes” that we felt she would understand and be an active participant in the class.

She had a wonderful time in high school. She was even in a school production of the Wizard of Oz as a Munchkin, because her speech coach was the director. She was the biggest cheerleader for her brothers and sister at their sporting events and she was embraced by the team and the parents. Life was easy for her.

I was her advocate and her voice throughout her education, but many of you will wonder what will happen to your child after they turn 21 and are no longer being educated or attending a program on a daily basis.

Life for Sammy After 21

Being a mother to a special needs adult is different than who I am to my other 3 adult children. I am her lifeline, her personal driver, her social calendar administrator, and her caregiver.

You will have to make many decisions for your adult child because what they do also will affect you too.

Will your child work, attend adult day programs, or do nothing? Government help is slow or nonexistent if you don’t know how to ask the right questions or do research on your child’s benefits after they turn 21.

Sammy’s Job at Hyatt Place Cobb Galleria

We have been lucky that Samantha has wanted to work since she turned 21 and we have found employers who want her to work for them. Sammy is fortunate that she can work and earn a living but since COVID-19 she has stayed home. She loved working for the Hyatt Place Cobb Galleria as a server in the kitchen, then in the afternoon, she helped out in the laundry room. She was adored by her boss and fellow workers. She was the first disabled adult hired by this Hyatt Place and she won rave reviews from the guests and her boss.

I drove Sammy to and from work, so I scheduled my interior design client meetings around her pick-up time.

Mother's Day Week: Celebrating the "Special Moms" Club
Sammy and her boss, Tim Burns, District General Manager

At Home with Sammy

Sammy is a young woman who is still very childlike. She loves birthday celebrations, still believes in Santa, hunts for Easter eggs, loves singing along ( and making up the words if she doesn’t know the lyrics)to Michael Jackson or Taylor Swift, and still dresses up for Halloween.

IMG_1424

We celebrated Sammy’s 30th birthday with a Hawaiian Luau.

Sammy still loves to dress up for Halloween and go on Easter egg hunts.

SAMMY

Because of her “young at heart” disposition, my family embraces the childlike qualities in her. We do more fun family things like our annual Gingerbread House competition after Thanksgiving. It is hilarious and we are so competitive, but you wouldn’t know it.

Mother's Day Week: Celebrating the "Special Moms" Club

Mother's Day Week: Celebrating the "Special Moms" Club

Always the Bridesmaid

We are blessed with an extended family of cousins who always embraced Sammy as a peer, not someone different from them. Sammy has been a bridesmaid in our son’s wedding and two of her cousins’ weddings. This July Sammy will yet again be a bridesmaid. She just loves being a part of a wedding!

Choosing Home with Us versus other Options

We have decided that Samantha will always live with us. At this time, she will not live in a group home or in any other form of independent living. But that can change over time if we are unable to care for her, but she loves living with us.

She is a great helper in our home and helps me to cook, clean, do the laundry, and she loves taking care of Bruno. Sammy is my little “Minnie Me.”

Mother's Day Week: Celebrating the "Special Moms" Club

Sammy Loves to Cook

We are very fortunate that Sammy loves to help out with chores and loves to cook with me.

Mother's Day Week: Celebrating the "Special Moms" Club

Mother's Day Week: Celebrating the "Special Moms" Club

Cooking with Sammy Videos

During the Covid-19 lockdown, Sammy and I created cooking videos just for fun. Many videos focus on young children with Down Syndrome and I thought if would be nice to share an adult with Down Syndrome cooking in the kitchen.

Sammy has a very active social life where she goes out on the weekends with other special needs adults on chaperoned trips. She even goes on vacations, appears in fashion shows, goes to spring formals, movies, plays, and participates in Special Olympics within these groups.

Mother's Day Week: Celebrating the "Special Moms" Club

Mother's Day Week: Celebrating the "Special Moms" Club

Mother's Day Week: Celebrating the "Special Moms" Club

Life after 21 can be rewarding and fulfilling for your special needs child but you, as a mother, will continue to care and nurture your child to be the best they can possibly be.

Sammy is surrounded by her siblings, caring adults, and friends so her life is full of people. I don’t think she is lonely even though she doesn’t date, but that may happen someday and we’ll deal with having relationships as special needs adults. Some of her friends have boyfriends, but Sammy isn’t sad about not having a boyfriend. Prince Charming just hasn’t come into her life yet.

Having Sammy in our lives has been so rewarding and filled with so much love, but it’s been work, I kid you not. Being in the Special Moms Club is daily caregiving, scheduling, and advocating for her but I wouldn’t change one minute of my life to have it any other way. I bet lots of the club members would agree with me. It’s all about, motherly love.

Mother's Day Week: Celebrating the "Special Moms" Club

So here’s my blessing to all the Special Moms on Mother’s Day who are in this club, “May you find joy, love, and acceptance in this journey with your child and remember you never walk alone. This club is never closed.”

When Sammy was born I loved this poem and I want to share it with you today.

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
“Armstrong, Beth, son. Patron Saint, Matthew.”
“Forrest, Marjorie, daughter. Patron Saint, Cecilia.”
“Rutledge, Carrie, twins. Patron Saint…give her Gerard. He’s used to profanity.”
Finally, he passes a name to an angel and smiles. “Give her a handicapped child.”
The angel is curious. “Why this one, God? She’s so happy.”
“Exactly,” smiles God. “Could I give a handicapped child a mother who knows no laughter?
That would be cruel.”
“But does she have the patience?” asks the angel.
“I don’t want her to have too much patience, or she’ll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she’ll handle it.”
“I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I’m going to give her has a world of it’s own.
She has to make it live in her world, and that’s not going to be easy.”
“But Lord, I don’t think she even believes in you.”
God smiles. “No matter, I can fix that. This one is perfect. She has just enough selfishness.”
The angel gasps, “Selfishness? Is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn’t know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see–ignorance, cruelty,
prejudice–and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side.”
“And what about her Patron Saint?” asks the angel, his pen poised in the air. God smiles.
“A mirror will suffice.”

photo 5 (1)

Do you know a member of the Special Moms Club? I would love to hear their story too.

Thanks for stopping by!
I would love to hear from you!

Lifestyle: Christmas Family Tradition - The Christmas Tree

This post has bee3n updated from an earlier one.

 

 

 

 

 

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12 Comments

  1. Robin, Sammy is blessed to have you as her mum and to be surrounded by such wonderful family and friends. I love her smiling face and fun-loving personality.

    1. HelloIm50ish says:

      Thank you dear Hilda for your sweet comments about Sammy.
      She has been a joy and a blessing in our lives!

  2. Lynn McClain says:

    I loved your story about Sammy. My DIL became a special mom 20 years ago when my oldest grandson was diagnosed as deaf, severely autistic and non-verbal. Unlike Sammy, he will never have a job because an interpreter would be required. He only eats Spanish rice, chicken nuggets, fries, cheese pizza and vanilla ice cream and that will never change no matter how old he grows. He, too, believes in Santa and the Easter Bunny. Above all, he loves to travel and it’s such a joy to watch him find pleasure in mundane moments. All of our lives were changed the day he was born and we became more loving and tolerant of the people around us.

    1. HelloIm50ish says:

      Thank you for sharing your story of your grandson Lynn.
      Yes, everyone who has ever been around special needs children or adults become tolerant of others and it seems their hearts grow larger because of this child.
      God has a plan and mine was to be Samantha’s mother.

  3. I love your posts about Sammy. Sammy seems to add a lot of fun and positivity to your lives and I can tell by her sweet smile how she finds the best in everything!
    xo,
    Kellyann

    1. HelloIm50ish says:

      Sammy brings lots of light and love to our family.
      She has always been my little helper. She loves to do tasks since she was a little girl and cooking has always been her favorite!
      I think so many “special moms” need to be celebrated for their strength, love, and courage in raising an exceptional child.
      This is a journey that is so very hard for many, while others feel blessed.
      I am one of those who are blessed with what God has given me.

  4. Deirdre Smith says:

    Thank you for sharing that with us. What a special person Sammy is and what a wonderful family you are. Happy Mother’s Day from Australia. X

    1. HelloIm50ish says:

      Thank you so much for your kind words, Deirdre!

  5. Laura Scott Clow says:

    Dear Robin,
    What a beautiful essay! I never dreamed when I joined this club 26 years ago that it would open my life to so much joy, compassion, grit, and fighting the good fight alongside so many other warrior special moms. I treasure being a mom to my special young man, and find that one of the many silver linings to membership lies in the wonderful people you meet who are champions for our special children and special adults. Happy Mother’s Day!
    Laura Scott Clow

    1. Laura,

      Thank you for stopping by and letting me know you’re a member of our club!
      Yes, the club is full of warrior special moms and we celebrate every milestone our children obtain throughout their lives.
      Happy Mother’s Day!

      Blessings,
      Robin

  6. Jodie,
    I will kiss my Sammy for you because so many people have embraced her for who she is and for what she’s not.
    I will also give you a big hug when we meet.
    You’ve been a wonderful fierce 50 sister!

    Hugs,
    Robin

  7. robjodiefilogomo says:

    Wow…Robin…this brought tears to my eyes and a huge warming in my heart!
    It really goes to show what a fabulous parent you have been to Sammy. Kudos to you in every aspect of life and kiss Sammy for me!! I’m sure she already knows what a wonderful mother you have been!!
    Jodie
    http://www.jtouchofstyle.com