Without a Crystal Ball

Our Journey through Chronic Illness

Every parent has certain things that can set them off. There are behavioral issues, emotional issues, health issues and developmental development issues. Children are all different, and all of them develop differently with each one have unique gifts and talents. Most will move right along the curve and develop relatively normally. Doctors, teachers and therapists all analyze development from growth, cognitive developmental, gross motor skills, fine motor skills, speech, non verbal 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 most 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 so far below the curve for such a long time that evaluations and assessments continue to be my biggest emotional trigger that part of me crawls in to a shell and wants to cry and the other part of my wants to lash out at everyone that has a healthy child.

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 as he has gotten older have all gotten worse. His brain and heart were fairly normal at age 3 months when testing was done. Over the past 3.5 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 effected. I always felt like if we can manage the illness it will be ok. I was not prepared for a child that was also developmentally delayed in nearly every area. It was a shock to my system when he was diagnosed with Childhood Apraxia of Speech, Oral Dysphagia (he cannot swallow properly or use his tongue), Sensory Processing Disorder, and Dyspraxia (a condition that effects gross and fine motor skills). All of these diagnosis are linked together. Neurologically his brain is sending messages to the body, and his body simply isn’t responding. Not a single aspect of him is unaffected. He has trouble speaking clearly or in proper order, we cannot answer questions correctly due to processing it takes to do that, he cannot chew or swallow anything that requires effort (we blend his food), jumping and running are still a challenge, he is unable to brush his teeth or feed himself, and he cannot dress himself. I realize this sounds like a lot of he can’t do this and can’t do that, but what this means is our life is pretty different. He doesn’t have the type of independence and freedom a child his age experiences. As he gets older, the deficits between him and his peers are becoming greater and greater.

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 in a few doctors 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. I hate them 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 of many parents that have a child that is delayed is the realization daily that life is never going to be typical for their child. The dreams we hope for like school, college, marriage and a career, are simply that dreams. Each and every evaluation I am reminded that he may never live independently, go to college, get married or have a family. I think of walking in the grocery store in old age with a developmentally delayed man that is my son. I know he has a long time to grow, and I know anything is possible. However, I am also realistic that his processing delays will make it next to impossible for him to properly manage his medical diseases. The idea of him ever living alone and 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 snap shot of what we are dealing with today, but they are foreshadowing a future that I wasn’t expecting. I still struggle with him missing milestones, and being behind in so many areas today. I can’t imagine how difficult it will be when he’s an adult and still not hitting the milestones. 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 most kids to do the most 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?

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3 thoughts on “Why I hate Developmental Milestone Charts as a Special Needs Parent

  1. Kira McCall F says:

    I know it must be hard to say this to yourself when faced with all this, but I have a feeling he will beat the odds. I’ve been following yours and Von’s story for about 6 months now, and it sounds like he has overcome a lot. Like you said in one of your other posts, chances are that Von’s peers have never had to start life in such a rough way. He’s beating the odds every single day because he is here. Yes, you are correct, he is more than what those charts and graphs say. Remember that he is a Sign-Sign, and most Sign-Signs have some problems they have to deal with, whether it be developmental or physical. And one more thing: I just want you to know that your voice registers, more than you’ll ever know. Keep up the good work, and I’ll keep praying for you all. F

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    1. Shelly says:

      Thank you!!! This really hit home! Made me cry so much because my daughter is also very delayed & disabled. I hate those charts too, whether they’re school charts, doctors, etc. I just hate them. Yes I know, my daughter will never walk or talk like a normal child; can these doctors/teachers stop reminding me? I look at her every min of the day. She’s beautiful! She’s mine! She knows who I am! She calls me mom, she smiles a lot, she loves when u play with her. I get it, she’s special! STOP REMINDING ME WITH YOUR STUPID NORMAL KID CHARTS!…

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  2. Charity says:

    I’m with you. My son is also delayed and we don’t know where he’ll end up either. It’s awful and scary. I feel like the IFSP’s and IEP’s should be more of can do meetings rather than can’t do. For now, I call them wine days.

    Liked by 1 person

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