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My Child with Special Needs is Neither Better Nor Worse and That’s OK

Jamie Sumner
Special needs mom, author and blogger
03/08/18  4:19 PM PST
child with special needs

My child with special needs is neither regressing nor making leaps and bounds. Here’s why I’m OK with that. I’m happy in the middle.

My son is five. He is no longer an infant, no longer that tiny thirty-week preemie who was so medically fragile I don’t believe I blinked for the first two years of his life. First there were those months in the NICU when even the experts could not figure how to help him breathe safely. That was the “alarm” era. And once we went home with the tracheotomy that allowed him those free breaths, well, the only word for that is the “phlegm” era. Suctioning that trach was a full-time job. And five months into it we added a g-tube and a whole new set of medical apparatuses.

Our house looked like an outpatient clinic.

But at five, the trach is gone. The g-tube is gone. And with them the medical instability that kept me in permanent fight-or-flight status. And for this I am grateful. But he still cannot eat without my assistance. He still cannot speak more than five words and is just now learning to navigate his speaking device, though he plays it more like a Nintendo than a tool for communication. We are not magically developmentally on target.

We are stable yes, but we are not seeing the progress that brings the kind of lasting freedom we would like. We are in the middle.

At five, he is in preschool, no longer at home with me twenty-four hours a day. I feel an absence like phantom pains from a lost limb when he is not next to me and heart tremors at the thought of full-time kindergarten next year. He still needs me more than most kids his age, but he likes his time at school—the music and books and nap time on mats. We are no longer conjoined as we were when he was growing in my belly, yet we are not separated by more than a few hours a day. We are in the middle.

At five, he still cannot walk or crawl, but can, on occasion and to much applause take some steps in his gait-trainer. With his wheelchair, he can roll himself, mostly…if he wants to and if the weather’s right and the ground even and the path clear. He is neither immobile, nor quite mobile either. We have built a lift in our garage. We are looking into power wheelchairs. But I still carry him from car to house, from house to couch, from couch to bed. We are looking into constructing a room for him downstairs. We are not, by a long shot, a handicap accessible house, but we are puzzling it out, pulling the necessary bits closer to his reach piece by piece. We are in the middle.

At five, he is no longer on his seizure medicines, having outgrown the febrile seizures that rocked his toddlerhood and lead to many an ambulance ride. But he is relatively safe now, stable. But because of the rarity of his syndrome made even more complicated by his cerebral palsy, we still make the trek to the hospital for the specialists, the ultrasounds, the blood draws. He is still at risk for certain cancers, tumors, kidney malformations. The “at risk” list is long and fraught with sleepless nights if I give into it.

But for now, he is healthy and happy and all clear. We are in the middle.

Honestly? I am okay with the middle. I haven’t always been. Before he was born, I hated the middle. I did not like to wait for pizza delivery, much less the playing out of all the diagnoses and prognoses and the rest that fills up the “crystal ball” that all the doctors claim they do not own. But if my child with special needs has taught me nothing else, he has taught me to sit in the okay times. He has taught me that always pushing to an arbitrary finish line will leave you exhausted, depleted, and a poor excuse for a long-distance parent.

There are a lot of middles in the parenting of any child, and especially so for us, the special parents to the special kids. Our kids are excellent at keeping our perspective zoomed exactly to standard. Too close and we are lost in the minutiae of every doctor’s summary, medical manual, and growth chart. Too far back and we are worrying over life after high school while they are still snug in a sling on our chests.

It is for my own good, my son would tell me if he could, that we are where we are, because here and now is all we’ve got.

And so, I am giving thanks for the middle.

child with special needs

Jamie Sumner is a special needs mom, author and blogger.

Read her blog, The Mom Gene.

Follow her on Facebook.


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