What Parents of Disabled Kids Want You to Know

Posted by E.J. Volkmar on May 26, 2015

Chances are, you know a child or parent of a child who has a disability. There are about 6 million kids in America who receive some special education. Although having a special needs child can be both a blessing and a challenge it's always hard to know what to say to the parents. Here is what a mother of a disabled child would like to share with you. This is a friend of mine from church.
Exhaustion. As I know, and probably every parent out there knows, parenting is exhausting. My friend tells me she never really knew what exhaustion was until she had her special needs child. When she gets a good night’s sleep, which isn’t often, she still experiences some level of physical and emotional tiredness that never leaves her.

She tells me that, although doctor’s hospital visits are a couple times a month, the physical therapist comes daily and because she is so busy with this, her bills and paperwork stacks up. When, and if she has any spare time she spends it looking up new treatments. She is also exhausted from the emotional toll it takes on her. It's difficult for her to get something to eat unless one of her friends watches her son.
Loneliness. One other feeling she has shared with me is that she is feels lonely. When she is around mothers with normal or typical kids she feels like an outsider. Although she wants to be happy for them, she feels terrible when she hears them bragging how Johnny knows 10 words or how Mary can now ride her bike without training wheels. (I feel so bad when I hear her say these things; I wish I had been more understanding of her from the beginning.)

She says “Good for them, but that’s not what my world is like.”  That's why she feels better when she hangs out with mothers of other special kids. When she meets with these moms she can at least talk about meds, feeding tubes, and various therapies.
She states that it is hard for her to admit, but she hates to see a one year old being able to do what her four year old can’t do, like walk. It bothers her to see her son struggle with doing what comes naturally to other kids. She tells me that sometimes she is jealous of those special kids who have more mainstream problems like autism and Downs Syndrome. They have a lot of support, but there is not much for what her son struggles with.
Fear. She is scared that she isn’t doing enough and she is afraid that she will miss some new treatment or find out about it too late. She is also scared about his future. She wonders what will happen when he gets older. Will he be able to drive, or get married, or what about holding down a job?  What will happen when she and her husband pass away?  She is filled with fear, yet she moves forward because of her faith.
Quite frankly, I don’t know how she does it. I felt horrible after talking to her, I really made me do some thinking and it really made me more thankful for the health of my family. My heart ached for my friend and after talking to her, I vowed to try harder to be her friend. My friend’s son has Chromosome 18 disorder.