This post on parenting a special needs child is my personal (and ongoing) story about being Isaac’s mom. It originally appeared as “Lessons from a Texas Mom” in interview format on Downunder Dad, a blog out of Australia that explores life lessons after the age of forty.
Please visit Downunder Dad’s engaging and entertaining blog and check out the piece he wrote for Gray Colored Glasses, On Parenting and Asperger’s.
Special needs: Not Quite What I Was Planning
When I was pregnant with our first child, my husband and I found this great little book, called Not Quite What I Was Planning. It’s a compilation of six word memoirs (like the title) written by people in all different stages of life, some famous, most not. We loved it so much that we gave it as a hostess gift to several couples who threw us a baby shower.
Little did we know the title would turn out to be prophetic. Child-birth, motherhood, our precious son: none of them were quite what I was planning.
From the first minutes of his life, it was clear that Isaac would chart his own path. He would breathe when he was ready, causing everyone else in the room hold our collective breath. He would forge his own growth chart, quite independent of the standard. He would teach us at every phase that although we were responsible for his life, we were certainly not in control of it.
No easy answers
Isaac was fifteen months old when we finally learned there was a name for what made his path different. A rare genetic difference unknown to most doctors, one he would help to define as he grew and developed. Just as there was no roadmap for his infant days, there would be no roadmap for the rest of his days, either. We would only find out who Isaac was by walking with him through the uncharted waters of life. There would be no easy answers.
If I told you the name of his diagnosis and you googled it, you would find nothing even remotely descriptive of our son. What does provide a helpful description is “developmental dyspraxia,” a significant piece of the puzzle that explains Isaac’s challenges in gross and fine motor skills and speech. (An interesting little anecdote: the actor who plays Harry Potter, Daniel Radcliffe, also has dyspraxia, though not to the same degree of complexity.)
For the first year or so of Isaac’s life, I felt a bit lost. I was certain there was something different, but I couldn’t quite identify what it was. Neither could our doctors, and we saw quite a few. Once we knew there was a concrete answer, I felt validated on the one hand and devastated on the other.
Would our child enjoy life in the same way we did, or would everything be a struggle? Would our family ever find a sense of normalcy? Would I ever be me again, or would my life be forever altered by this tiny human I’d brought into the world?
Now eleven years into parenting, I can tell you that yes, our child enjoys life, even though very little comes easily to him. He is a charmer and a socialite and delights everyone he meets (when all is going well, which it is more often than not). Yes, we do have a sense of normalcy, but we also feel the gap between “our normal” and that of others. And yes, I am me again, but I have struggled to get back here, and I’ve changed along the way as a result of being Isaac’s mom.
Challenges and life at home
The most challenging aspect of parenting has definitely been learning to handle Isaac’s frustration and resulting dysregulation when he is not able to make his body do what he wants it to do.
Isaac may know that he wants to open a jar, for example, and not be able to execute the action effectively. In a moment of frustration, the jar will go flying and shatter on the floor, along with Isaac’s self-esteem and my expectations of how life should be. It is not always this messy, but it is this dramatic and emotional. Some days feel like crisis after crisis on repeat, and it takes a toll on our patience, our nerves, and our heart.
Isaac has a younger sister now, too, who has grown up with these surges of emotion as part of the norm. It isn’t easy for grownups to navigate, much less another child. Fortunately, our daughter is wise beyond her years and growing into typical adolescence despite our unique family challenges. The high emotionality in our home is definitely not what I was planning, but it is our reality and something we are addressing in a holistic way, through physical and occupational therapy and relationship-based strategies we are learning from Isaac’s school.
Strategies for special needs parenting
The first real help to us as parents was a methodology we learned when Isaac was in preschool, called the Nurtured Heart Approach® (NHA). NHA is a set of techniques to help parents move beyond a child’s behavior to their heart and begin transforming them from the inside out. We started learning NHA when Isaac was four, and it helped us through some incredibly challenging years.
Over time, we found the techniques to be helpful not only for changing Isaac but also for changing us, giving us eyes to see him differently.
In addition to using NHA with our kids, my husband and I also use it with each other. Two of the foundational principles of NHA are to recognize everything the child/other person is doing right and acknowledge it at every opportunity (known in Nurtured Heart Approach as “Stand Two”), while giving no energy at all to what is going wrong (“Stand One”). If you truly commit to practicing these two stands in tandem, you can shift the energy in your home and relationships—including your relationship with your spouse—from negative to positive, and in a relatively short period of time.
After a couple of years using NHA at home, I became a certified trainer and wrote a children’s book based on the approach. I have now published two books, Saturday Surprise and Playtime Pickle, and have two more on the way to complete the series.
For parents of typical kids, an inside look
When I think about what I’d most like parents of neurotypical kids to know about our life, the first thing that comes to mind is to acknowledge that parenting a special needs child is not the same as parenting a typical child. I know the differences well, because I have a typical chid, too. There are common tasks, to be sure, and some common experiences, but the added responsibilities of raising a child with differences are tremendous.
Our costs for schooling and therapies are considerable. My commute to and from school twice a day totals three hours, every day. In order to achieve a sense of peace and calm in our home, we had to learn a new parenting methodology, and we continue to attend regular parenting sessions at Isaac’s school. (And we still struggle and make mistakes.) We have completely changed the way we eat in efforts to improve Isaac’s health and help him stay better regulated. And our emotions run deep—the hard ones and the happy ones. Having a child with special needs is truly all-encompassing.
And while all of this is true, we are still just us, regular people who are doing the best we can, who need some levity and fun in our life, too. Many parents of special needs kids feel isolated and overwhelmed and could really benefit from the friendship and support of other families.
For special needs parents, solidarity
Everybody’s story of parenting a special needs child is different, because every child is different. If it’s taking you a while to embrace your story, that’s okay. It’s taken me a while, too. In some ways, we may always be in that process. There is love and heartache living in our chests simultaneously. We don’t have to put a pretty bow on it all for other people or even for ourselves. What we are doing is hard.
This child you are raising will change you and likely already has. And that is a good and beautiful thing, however difficult the path has been. We live in a time when society is more accepting of people with differences, as it should be. And I wholly believe—even as I am still learning—that these kids will teach us how to shape our world for the better. Our work is to slow down, pay attention, and bear witness, as our children lead the way.