A somewhat “open letter” to parents of children with a disability or delay. This one is for you.
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“I just want to make sure I’m doing enough”.
The number of times I’ve heard this statement, or one similar, still surprises me. The situation I hear it in is usually pretty similar. A parent, concerned about their child’s development, asking me my opinion on any number of therapies, or products, or things they’ve heard about.
I’ve had parents come in to meetings with Post-Its filled with suggestions from neighbours or even strangers at the supermarket. Websites linked to them from family members, or some anonymous person on an online message board or Facebook group. Lists compiled from Google searches and blog posts and stories from friends.
The amount of options available for parents looking for assistance is huge. And for some reason, this list only gets longer for parents with a child with a disability or delay. Take autism for instance. There’s a popular book on the market that has over 70 different types of therapies parents could choose from. SEVENTY! How on Earth is anyone supposed to know where to start, where everywhere you turn, someone is suggesting you try something different that “definitely helped this one child they know”? (Or worse, know about from a friend of a friend?).
What the “right” choice is for a child or family is pretty much impossible to know. The decision ultimately comes down to the parents, and no one can objectively say what may have been the outcome had another option been chosen. But that doesn’t seem to reassure or provide comfort. Parents feel the pressure to choose right, and to choose quickly. Early intervention is crucial, we know that the rate of brain development in this period of an individual’s life is second to none.
But as much as I support early intervention, I see the downside to this overwhelming pressure to do “as much as possible in time”. The doubt that comes if things are “going too slow”. The panic if skill development stagnates or regresses. The need to do more, more, more. And that’s not even touching on the huge issue of lack of supports for adolescents with disabilities, because all the focus and funding is on the early years. But kids grow up, and go through puberty, and we cant’t always predict at 5 what a child will need at 15.
This endless quest for “enough” breaks my heart. I see parents weary, exhausted, and guilt ridden. Constantly doubting their choices. Telling me stories of lying in bed, unable to sleep with worry. Forever on the lookout for that thing that might be their final answer.
I won’t lie, there are times where I have felt disappointed a parent won’t act sooner about supporting their child’s needs. I know those parents have their own journey and process they need to go through, and I don’t judge them for their decisions, as much as I may want them to choose differently. But the parents that have already had the assessments, gotten the diagnosis, started therapy? These parents are doing the elusive “enough”!
Because at the end of the day, what does “enough” even mean? To me, it’s providing your child with an environment that meets their needs: their physiological needs, their physical needs, their emotional needs, their social needs, their safety needs. One were they are adequately fed, feel secure, loved and belong, where they have clean water, shelter, immunisations, and medical care. A place where they are safe to sleep, to learn, to develop, to reach their potential. Sometimes to meet these needs, we need help from others, and that’s ok.
I just want to say to all the parents out there, who are concerned that they aren’t doing enough, to please stop for a moment. Take a second to breathe. To hear and believe that they are good parents. That they are doing enough. To appreciate their beautiful, unique, and loved child for who they are. To know that yes, this time may be “crucial” but so is the relationship you have with your child. Try not to waste months and years stressing that you aren’t enough. Because I promise you, to your child, you most definitely are.
