I see you and your children everyday. You may not think I see you, but I do. 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 club.
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.
How I joined the Club
I joined this club 28 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.
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 with 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 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 non existence if you don’t know how to ask the right questions or do research on your child’s benefits after they turn 21.
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 works for the Hyatt Place as a server in the kitchen, then in the afternoon she helps in the laundry room. She is adored by her boss and fellow workers and she is a very hard worker. She is the first disabled adult hired by this Hyatt and she wins rave reviews from the guests and her boss.
I drive Sammy to and from work, so I schedule my client meetings around her pick up time. I get up at 5:30 on the days she works, but she loves going to work and I have gotten use to the early mornings. I get so much work done before my day gets busy.
Sammy is a young woman who is still very childlike. She loves big birthday celebrations, still believes in Santa, loves singing along ( and making up the words if she doesn’t know the lyrics)to Michael Jackson or Celine Dion, and still dresses up for Halloween.
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.
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.”
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.
Life after 21 can be rewarding and fulfilling for your special need 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 some day 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.
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.”
Do you know a member of the Special Moms Club? I would love to hear their story too.
Be Fierce today and everyday!