A Heart For Success: Learning From My Child With Developmental Delays

With a child's heart
Go face the worries of the day
With a child's heart
Turn each problem into play
No need to worry no need to fear
Just being alive makes it all so very clear... With A Child's Heart, Stevie Wonder

Sometimes, it takes a child to demonstrate what real strength, courage, determination, and success look like. Please enjoy this perspective from Ashley Martin about her son Rex, who was born with multiple heart defects and other developmental delays:

“How old were you when you took your first steps?,” he asked me.

Pausing, I said, “I don't know.”

“Exactly,” he said, “The fact is that you learned to walk. No one cares how old you were.”

As the mother of a child with developmental delays, this conversation with my pastor has popped in my head through every bump in the road and with every achieved milestone. Theodore Roosevelt said, “Comparison is the thief of joy,” and it has been stealing the joy of parents for years. We fight it, but eventually, it finds each one of us. It can show up in the child at library story hour who is half your child's age, double his size, and running circles around him. Hypothetically speaking, of course.

Crossing The Finish Line In The Kerrington's Heart 5K Fundraiser
2014

My first child hit every milestone on time and sometimes early. People were always commenting on how advanced her speech was for her age and how smart she was... and is. My son hit none of his milestones and took months to master things my daughter just did naturally. With many hours, weeks, and months of hard work, children who have delays will eventually achieve the same goals their peers likely achieved much sooner, but the celebration is much sweeter. If you are the parent of a child who some might describe as “behind,” hang in there. Keep working with her and know she isn't “behind” anyone because she isn't competing with anyone, but herself. Children arrive in their own time and they can't be rushed.

 

 Children's Books about Inclusion

Benchmarks definitely have their place, but when they become the measuring stick for a child's (or parent's) “success,” they lose their value. Success is defined as: the correct or desired result of an attempt. Do you notice something missing from that definition? “...by a certain time or age.” WE put these specific parameters on our children and redefine “success.” I can list the many successes, the added pressure from well-meaning grandparents, other parents, and especially from ourselves is unnecessary and, in many ways, can be unhealthy. 

I should probably clarify that. As a parent, you should be aware of a typical development timeline so you know when your child may need therapies to help them get on track. Just as it isn't good to be overly comparative, it is equally bad to be in denial of possible challenges. 

I am so grateful for the doctors and therapists who gently clued me in to my son's need for therapy. I confess that I was so overwhelmed with all he already had going on that I was oblivious. He had his first heart surgery at 13 days old and just seemed to have uphill battles from the beginning. At four months old, he was diagnosed with hip dysplasia and began aggressive treatment that involved a harness and later a brace that was to be worn for an unknown period of time (ended up being 15 months). So, when he wasn't rolling over by 6 months old, I blamed the brace. I told myself, “Of course he can't roll over; his hips are restricted 12—24 hours a day!” It turned out that he also has low muscle tone which meant rolling was going to be a challenge, with or without a hip brace. So, he began weekly physical therapy sessions. His physical therapist noticed that he only used his right hand...so, he began occupational therapy. Some months later, that same physical therapist (who became like family) mentioned my son's speech and how he might benefit from therapy in that area. 

Rex Sleeping In His Hip Brace

For 2+ years, he received a combined total of 10 hours of therapies a month. My life revolved around his therapy schedule and there were times when I just didn't think I could do it any more. Now, as I see my son run, climb, turn door knobs, and speak in full sentences, it was all worth it. He attends preschool 4 half-days a week where he receives weekly therapies in all areas and he still gets speech at home. He loves school and everyone there loves him! He can tell you all of his teachers' names, and is quick to tell you who is best friend is, too. He even went "peepee" in the potty for the first time EVER at school. Oh, and the way his big sister has grown into a “mini therapist” has been amazing to watch. She used to put his favorite toy on top of our ottoman to “make him work for it.” Next to me, she is his biggest advocate and cheerleader and he, of course, thinks she hung the moon.

Working on Rolling Over

I wish I could tell the mom of that non-walking 2-year old to enjoy him no matter what stage of development he is in. Don't dwell on the delays or setbacks, but focus on the successes. Now, that we are potty training, I told a friend, “He peed in the potty 7 times Saturday!” I am choosing not to keep track of all of the accidents because focusing on the negative never helped anyone and certainly never ended in SUCCESS.

Running Across The Same 5k Finish Line, One Year Later

2015

Team Rex

Ashley Martin has been a full-time stay-at-home mom and part-time blogger since 2007. She is active in her community and in her church where she hosts Bible study in her home and helps lead worship. She proudly calls herself a Heart Mom and is an advocate for families who have a child born with a Congenital Heart Defect (CHD). Ashley resides in Nicholasville, Kentucky, with her husband and two children.

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