I think one of the hardest things about this journey is the developmental uncertainty.
Here’s what I mean by that.
When your child is born with developmental delays, you never really know when they have “peaked” developmentally so to speak.
With each missed “milestone,” you start to wonder if their next milestone will eventually be the “last” milestone that they will achieve.
“Should we prepare our lives for this ‘phase’ of parenthood and reality for the foreseeable future, or will our child eventually grow past ‘this?’”
On one hand, you want your child to develop all the necessary tools they will need to be successful in this life.
On the other hand, you know that there is a high probability that those skills may not ever “fully” develop and you will have to come to terms with that.
As special needs parents, we obsess and analyze. We interpret and overthink. We play “what if” and envision every possible scenario we need to be prepared for.
And that’s all just part and parcel of this whole parenting gig.
But the truly anxiety-inducing factor that will forever plague special needs parents is the idea that we may not ever really KNOW if “THIS” level of development is the “peak” of our child’s developmental progression.
“Has my child already developmentally ‘peaked?’ Are the skills he has learned up to this point ALL the tools he will have in his life? Is it enough? Does he know enough?”
“Has my child learned enough to succeed without me, or will I need to make arrangements for him after I am gone?”
“Will all the therapies and interventions truly achieve anything else at this point? Will my child learn to verbally communicate, or should I consider an alternate means of communication?”
“Is there any chance my child might REGRESS from his developmental progression? How do I prepare for that?“
We hear stories all the time of developmental plateaus and special needs kids (and adults) suddenly losing their basic developmental abilities that they worked so hard to achieve.
Would continuing with all the “therapies” stave off developmental regression, even if they are “at some point,” not making any more noticeable progress?
Would it still be worth the insurance hassles and the copays to continue the therapies, or would something else be better?
I think it all boils down to this question.
“How do I balance being optimistic, while at the same time staying realistic about the future? How will I know the best path forward for my child, and how do I give them the best chances of success in life?”
I don’t have a good answer. If I’m being honest, it’s kept me awake on SEVERAL occasions.
I think in the end, as special needs parents, we have to “do it all.”
We have to stay happy with who our child is intrinsically, while at the same time pushing them to be and do more than we or anyone ever thought possible.
We provide them with every possible tool for handling “life” out on their own, but we prepare for the “long haul” if our child’s developmental progression never truly allows them to fully gain their independence.
We live simultaneously in fear and with hope. Fear of the uncertainty and the unknown… Hope for a better today than yesterday, and an even better tomorrow.
We do everything we can to make today a better day than yesterday and make preparations to insure all our child’s “tomorrows” are better than “todays.”
We love. We hope. We pray. We stave off the fear and cling to our faith.
Someone once told me “it’s not truly faith until it’s all you’re left holding on to.”
I guess, in the end, we have to have faith.
Faith in our God. Faith in ourselves. Faith in our child. Faith in their abilities. Faith in HIS abilities. Faith that it will all work out. That all our time, hard work, and effort will pay off somehow in the end.
In some ways, it feels like an impossible task.
But we are special needs parents. We see our kids do the impossible every single day.
And if THEY can do the impossible…
SO. CAN. WE.
#ausome