Amy and her son

When My Child Is Developing at a Different Pace, I Remember This


I’m a physical therapist. I value the scientific method. When working with my patients, I use objective measures and assessment tools to determine level of progress and the effect of my treatments. When a patient does not perform well on an assessment tool, I do not want them taking it personally — it is just one measure of function and does not define them as a person.

Given this background, why is it that I take it so personally when my 11.5-month-old does not meet milestones, or ends up in the gray and black zones of assessment tools? Why does it feel like a punch in the gut every time I hear about all the words someone else’s child says, when my almost-toddler, who used to have “ma” and “ba” sounds, only utters “ga” and “da” and often is silent? Why do I worry so much when my son, who has been crawling since he was 7 months old, loses control of his arms and face-plants into the floor? Why do I still cry when I cannot fill out assessments about his self-feeding because he still cannot tolerate any solid foods?

I worry because I know regardless of how tough this first year of parenting has been and all of the therapies he already had, there is still so much more work to be done. Even though it took months of heartache, labs, tests, therapies, doctors appointments and sleepless nights to get his diagnosis of mast cell activation syndrome (MCAS), there’s still a strong likelihood something else is at play. I worry because I feel like there’s reason to worry. I worry because I have given all of myself to him this past year, and I worry I will burn out and not be able to give as much as he needs and deserves in the coming years.

I love my son for who he is and value his personality, his sweet and playful nature and his strong independent spirit. But it has also been a tough first year, and I am well aware the tough times may not be over yet.

I am constantly reminding myself that in loving and accepting him, I must love and accept his pace.

He will do things on his own time.

He will need more therapies, more treatments, more assessments and more assistance than some other kids, but I have to trust that he will get there, that he will say “mama,” and I’m sure one day I will not be able to get him to stop talking.

And while I am on this ride with him, working endlessly to give him the tools he needs to be a social child and eventually a successful adult, I challenge myself to stop worrying and instead celebrate.

My son will be 1 year old next week. He has accomplished so much, and has become such an incredible person already. He crawls everywhere. When his arms give out and he falls and hurts his face on the ground, he does not let that stop him. He just keeps on crawling! He is determined.

He takes his medicines four times a day with minimal fight, even though they are unflavored and taste terrible. He is so brave.

He loves his books. He feels pictures, turns pages, and refuses to take his bottle (no matter how hungry he is) until we read one more book (or two or three!). He is thirsty for knowledge.

He loves to play. This child will play and play and play, regardless of how bad his stomach is hurting, how much his rash itches and how much he just threw up five minutes ago. He will continue on playing, often without a pause. He is endlessly strong.

I choose to celebrate my son as we near his 1st birthday and every day. I choose to suspend my worry and to allow myself to simply enjoy my son for who he is. He deserves it, and I deserve it.

JOIN THE CONVERSATION

Related to Mast Cell Activation Disorder

The Reality of Becoming a 'Rare Disease Parent'

This is my reality. I’m coping with the fact that my child has a medically rare, chronic diagnosis: Mast Cell Activation syndrome (MCAS). I haven’t fully accepted it yet, but I’m getting there. I recently read a blog post about being a mother of a “special needs” child. I cried when I read it because [...]

How ‘Welcome to Holland’ Helped Me Travel With a Chronic Illness

It had been a very long school year, and I was ready to get away. During that time, I was hospitalized twice during the fall semester and missed two other weeks for out-of-state travel for specialist appointments. In the spring, I went to the hospital less than two weeks into the semester, and it didn’t [...]

How My Husband and I Made Our Trips to the ER More Romantic

My husband and I got married on a windy, September afternoon in 2014. Three days later, we made our first ER run as a married couple. And so began the “date nights” that have been a consistent fixture in our calendar during our first 8 months of marriage. I live with a chronic illness called [...]

When My Son’s Barber Gave Us a Gift I Might Never Be Able to Repay

If you are an autism parent, you might already know how difficult and utterly exhausting getting your child’s hair cut can be. My son, Michael’s, first cut was a horrible experience for both of us. After that first cut, we were both ruined for a while. I decided I would start cutting it myself. He [...]