When I was a teenager, I had a friend (let’s call her Candice) with Cerebral Palsy. Candice’s speech slurred and she walked with an awkward gate. Aside from that, she was just like me. She liked to fix her hair pretty, she thought the same celebrities were cute as I did and she was in some of my classes at school. Even though we shared more similarities than differences, she was still marked. Labeled.
What exactly qualifies someone as a “special needs” child? Do they need to walk different from others? Do they need to have facial characteristics to set them apart? Does every “Special Need” need to be seen by other’s around them?
I knew a few things about Candice; what she liked to eat or which class she hated most. But, what I never knew was how many doctors visits she had throughout the year or how many medicines she had to take. I never knew the extent of her struggles.
I am the mother of fine looking children. Their digits are all accounted for and their bright eyes are positioned just right on their face. Their bodies are proportionate to their heads, they can all walk, run, see, hear and communicate.
From the exterior, my children are perfect. They are expected to keep up with their peers, adjust quickly to adverse conditions, never miss more than 10 days of school, and otherwise fit into the mold that is cast for “non-special” needs children.
However, what the world can’t see; is that each one of my children have “special needs.”
Between all five of them, they battle debilitating depression and disabling anxiety , ADHD, generalized mood disorder, hypothyroidism, migraines, asthma/allergies, motor & sensory developmental delays, panic attacks (resulting from the anxiety) that mimic Post Traumatic Stress Disorder, bed wetting, obesity & low-weight gain (two different children who eat the same thing), chronic sinusitis, re-occuring yeast infections, severe acne and skin rashes.
Our list of doctors include, not including our family practice doctor, pediatrician, endocrinologist, dermatologist, immunologist/allergist, otolaryngologist, neurologist, psychiatrist, opthamologist, orthodontist and probably a few I can’t remember.
We average 1-2 doctors visits a week – all year long — and visit the pharmacy so much, they know our whole family. It takes over a half hour to refill “pill minders” for the week. (And I am not even including what mom and dad have to take or who we have to see)
If one child misses a dose of something, it could result in a disastrous day. Just one ounce of discord can quickly morph into a bucketful of chaos.
I have friends who have sweet “special need” children that they struggle to raise. They give all they have to help that child grow and function as normal as possible. Often, I watch with awe as I realize, I couldn’t manage the way they do. I am overwhelmed by the thought of what they must have to do just to help their child exist.
I often wonder, however, if it is possible that the term “special needs” could be more broadly applied? Does a child with 3 or 4 different doctors (all needing regular followups) deserve that label. And, if they did earn that label, would it help?
Would my child receive more help and understanding if they carried an Individualized Education Plan (IEP) in their permanent school records? Would this tired, exhausted mom receive any respite support? Would my children be helped or harmed with this label?
These questions run through my mind, constantly, as I look at my children. Each one so special and wonderful in their own way. I can’t help remembering, and sometimes mourning, the child they were before their individual challenges bore their ugly head.
Parenting is definitely different than I had counted on and, sometimes, I just need a little recognition that, I too, am a parent of special needs children, because it is downright hard. I know I am blessed enough to have such sweet children and extra lucky that each child still wants to hug me. I realize, deep down, that it doesn’t matter if the world knows of their problems.
What it really comes down to is this: God gave me these sweet children and because I know that, I know He will bless me with the ability to care for them. Regardless of their challenges.