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My Problem With Developmental Milestone Charts as a Special Needs Parent

Every parent has certain things that can set them off. There are behavioral issues, emotional issues, health issues and developmental issues. Children are all different, and all of them develop differently with each one have unique gifts and talents. Doctors, teachers and therapists analyze development from growth, cognitive development, gross motor skills, fine motor skills, speech, nonverbal communication, and the child’s ability to manage sensory stimuli. The charts can get overwhelming as a parent, because it’s never easy seeing your child quantified as a speck on a curve. If your child is thriving, it can certainly give you a great sense of pride to see them flourishing. However, if your child is at the bottom of the curve or not even on the curve, it can make you feel like a failure. My story is one where my child’s development has been below the curve for such a long time that evaluations and assessments continue to be my biggest emotional trigger, and part of me crawls into a shell and wants to cry, and the other part of my wants to lash out at everyone else.

a boy standing in front of a barn looking down at two chickens
Katie’s son.

My son was diagnosed with several diseases, and we are still in search of the primary diagnosis. However, what we know is that he has no pituitary gland, Chiari malformation, enlarged brain ventricles, separated stomach muscles and mitral valve stenosis in his heart. His organs have gotten worse as he has gotten older. His brain and heart were fairly normal at 3 months when testing was done. Over the past three and a half years, the tissue in his body continues to expand, and his heart valve has calcified and become stiff. He will need several surgeries in the future to repair the organs that are affected.

I always felt if we can manage the illness it will be OK. I was not prepared for the developmental delays. It was a shock to my system when he was diagnosed with childhood apraxia of speech, oral dysphagia (difficulty with swallowing and the use of his tongue), sensory processing disorder, and dyspraxia (a condition that affects gross and fine motor skills). All of these diagnoses are linked together. Neurologically his brain is sending messages to the body, and his body simply isn’t responding. He has trouble speaking clearly; due to his challenges with chewing and swallowing, we blend his food; jumping and running are still a challenge; he is unable to brush his teeth, feed himself, or dress himself. He doesn’t have the type of independence many children his age experience.

As a result of the above developmental issues, my son is in therapy to address all of these areas. He sees a physical therapist, occupational therapist and speech and feeding therapist. Our life week to week is spent running from appointment to appointment, and then often we throw a few doctor’s appointments in the mix. I’m bombarded with charts and graphs consistently, and everyone involved evaluates and analyzes his progression and development. There are times I forget we are talking about a little boy instead of a patient because our life is so integrated in therapy and medical intervention. As we approach the annual evaluation periods, I always feel so hopeful. I feel hope that he’s improving, and slowly he is making great progress. However, the hope slowly diminishes as I get the results and I see how far behind he still is compared to peers. I have come to loathe the charts and comparisons. I want to scream to everyone helping him that he is more than a statistic or a dot on a graph. If I could make them see what he’s been through, maybe they would understand he’s not a sum of the results. I hate those charts with every fiber of my being. Every single time we have an evaluation coming through, I feel my blood pressure run high, I become impatient, and even sitting here writing this right now I am agitated.

The hardest part for me as the parent of child with delays is the daily realization that life will be different for my child. Each and every evaluation I am reminded that he may never live independently, go to college, get married or have a family. I know he has a long time to grow, and I know anything is possible. However, I am also realistic that his processing delays may make it next to impossible for him to properly manage his medical diseases. The idea of him living independently will likely never be a reality. Someone will always have to help him manage the disease and the interventions necessary to stay alive.

Those evaluations and charts are not just a snapshot of what we are dealing with today, but they are foreshadowing a future I wasn’t expecting. We have a long time before we get there, and I know we can give him the best chance in the world. He works hard in therapy each and every day. His father and I will fight daily to ensure he has the best possible quality of life and enjoys his life to the fullest. It doesn’t mean the reality for us doesn’t sting and doesn’t hurt. The reality that he has to fight harder than other kids to do basic things breaks my heart, but I know underneath this disease is an incredible will to get there. I hang tight to that will in my darkest moments and remind myself he’s strong and he can beat the odds. I just wish that I didn’t have to see the charts and graphs so frequently. Is that such a bad thing to want? Instead, I would love to see doctors and therapists focus less on deficiencies and more on strengths. And once a diagnosis is made, I would like to see charts comparing children go out the window.

Follow this journey on Without a Crystal Ball.