By Mari Nosal, M.Ed.
Mother’s Day is rapidly approaching. One merely needs to spy the hustle and bustle of dads, children, and various family members congregating around the greeting card aisles, their hands laden with chocolates and bouquets of flowers. This sight will be repeated throughout the week, and throughout the nation, culminating on Sunday. Moms may receive tangible gifts, breakfast in bed, a day to themselves, and more. It is the day her wishes come true. This is what some would call an average interaction on Mother’s Day. And without a doubt praise well deserved for any parent.
However, a special needs parent’s scenario on Mother’s Day may veer from the norm drastically. They may not have the option for a day in bed as special requirements and demands regarding their children will take precedence. Caretaking responsibilities for special needs children is a 24 – 7 job. A job that for many special needs parents does not end when the child reaches adulthood. The responsibilities do not discern between a regular day versus a special holiday.
Parenting kids with special needs can prove to be a strategic balancing act. It encompasses the whole family. Not only do special needs kids face challenges, but so do their parents and siblings. Professionals and society at large tend to place focus on the child with special needs. The parents’ special needs are often placed to the wayside. In my case, as the parent of an adult son with Asperger’s and a myriad of other challenges, I am beginning to wonder if my husband and I will experience and savor the luxury of privacy in the cocoon of an empty nest before the ravages of old age senility sets in.
Parents often reorganize their own life to accommodate their child. When they are feeling vulnerable and unsure of both their child’s future and their own efficacy, parents suppress their own needs and feelings. They hide it behind a façade of strength- born of love for their children and a desire to present an aura of “normalcy”- with the intent of providing the child and the rest of the family a sense of security and stability.
It does not matter what the child’s challenges are. They can be medical, neurological, psychological or even environmentally based. Parenting a special needs child can evoke a myriad of feelings in a parent. Unspoken fears, anxiety, regret for loss of the parent’s aspirations, loss of a parent’s personal identity, helplessness, hopelessness, wanting to be a perfect parent, guilt for not being a perfect parent, and even resentment for their situation in comparison to families with typically developing children. Pangs of guilt can arise in the parent for having these feelings.
While other parents will revel with a day in bed, special needs parents will be getting up to change feeding tubes, or supervise children that need someone to supervise them for safety. Parents of chronically ill kids will revel and rejoice in the fact that they were gifted one more day with their child. While typically developing families go out to brunch, others will be home attempting to drink a cup of coffee without intervening to care for a child who is self-harming. Parents with special needs children may not be wishing for a macaroni necklace or a box of chocolates their Mother’s Day gift, but to be hear their school age child say I love you and experience the thrill of knowing what the child’s voice sounds like. Special needs parents may wish for the gift of independence for their adult child whose developmental age lags significantly beyond their chronological one.
Lest I get accused of displaying martyrdom in this article, it is quite the contrary. The responsibilities are many, the hours are long. Yet, I am a better person for being a special needs parent. While creating a constantly adjusting, “normal” family life, my children have taught me what is truly important. Despite the daily challenges special needs parents address you are a better person for having special children. Your priorities are less materialistic and more spiritual. You appreciate development in your children that neurotypical parents take for granted. You have learned to be more accepting to mankind because you gained an awareness of human fallibility. You gained emotional strength by taking care and advocating for children with challenges. At those moments when you thought that you could not go on- you have.
You and your children are an asset to society, for you are role models and educators for society at large. Carry on, hold your heads up high and know despite having one of the toughest and lowest paying jobs in the world you never back down. The pay is not monetary but the outcome is priceless. Because of your daily efforts, the payoff will be a child that becomes as independent and successful as is feasibly possible. Hence, as you get up for the umpteenth time to care for your child during the night, in a sleep deprived stupor… as you patiently work with your child on social, verbal and cognitive skills repetitively, day in and day out… as you clean up after an older child that you still struggle to potty train; please remember this bit of wisdom.
You do not care for your children 24 – 7 for glory, prestige, or to compare yourself with typically developing neighbors. You keep on fighting the good fight out of nothing but sheer love for your children. Look in the mirror and remember the reflection looking back at you ROCKS. You are warriors and do not walk alone.
Happy Mothers Day. May your day be full of miracles and love.
Since I have yet to find a Mother’s Day card for Special needs parents, I have created one for you.
Happy Mothers Day from Mari Nosal
A Special Needs Greeting Card From Me To You
Mom, Thanks for loving me unconditionally; I am a diamond in the rough
Like a just mined diamond I am encased in a black exterior
No matter what my challenges you continue to buff the charred exterior
You see the promise and talent that I possess; hidden just under the surface.
Knowing that a little elbow grease will expose an interior that shines as bright as a ray of sun
I believe in myself because you never stop believing in me
Thanks for standing by me daily- fighting, caring, encouraging, and challenging me to be the best me I can be
Encouraging me to move two steps forward when I move one step back
I love you to the moon and back
From your special child to my very special Mom