Parenting a child with special needs is challenging to say the least. Its all the emotions and physical exhaustion you can imagine. However, If you have a child that clearly falls in the category of "special needs", there is a community that is easily identifiable. Which is an ironic thing to write as isolation is a frequent experience for these parents. But in general you are clear that your parenting experience will be different than many who have neurotypical and physically healthy children.
But where is your community when your child has mild differences.? Often, parents of kids with mild neurocognitive differences or physical disabilities are caught between 2 worlds. They don't quite fit into the completely typical realm and they don't fit with the general "idea" of the special needs group. What already is an isolating experience becomes more so... because you don't quite fit into either camp. Hence, the title.. its like standing in the entryway, not quite in and not quite out.
For these parents, deciding if your child fits under the umbrella of "special needs" is a confusing one. Back in the day.. lets say 25 years ago, these kids flew under the radar and still do in some communities. But they definitely show deficits, albeit in more milder presentation than others.
It is crazy making because sometimes your child may seem just fine and sometimes their deficits could not be more obvious. Which means sometimes playdates or social functions can be great and other times you have to leave due to physical pain, tantrums (theirs or yours.. whichever.. no judgment here). So there is unpredictability, which for many, creates an environment of high anxiety.
Increasing the dividing lines are well intentioned family and friends who are gaslighting you.... Yup, I said it. You may hear "Your making a mountain out of a molehill" or "Your too anxious". It can be much easier when there is a diagnosis and you have the benefit of saying "hey, my kid has Aspergers, ADHD or Non-Verbal Learning Disability, Dyslexia..." but for many parents they don't have a diagnosis to pull out of their back pocket (yet or ever). So you stop talking and expressing your concerns which sets up a perfect storm for isolation, depression and anxiety.
But you are NOT ALONE! There are others.. MANY, MANY other parents in this exact situation. You know your experience with your child, your feelings, his behavior or her struggles to connect or be as physical as the other kids. Your experience is real. Period.. End of story. I encourage you to seek out these other parents and find your community because it exists in large number. Be willing to stretch outside your comfort zone and reach out even if you think others may not understand. You may be surprised who is in the exact same entryway.
The support they need may not be clear to many and it is often these parents that are recipients of "I think your making a mountain out of a molehill" or "You worry too much" comments.
These kids for all intensive purposes look just like a neurotypical kid or physically capable child. Yet, spend a little time with them and it becomes clear that "something" is different.
Having a child with "special needs" automatically
What makes that tricky is often times, it requires the parent to openly communicate that there is a difficulty.
"Parenting is not for cowards" I often say to clients; and for those with kids who have physical, developmental or neuro-cognitive differences, they agree. For those who don't (except for perhaps those of us with teenagers), there is something about that statement that feels "unloving" or "unkind". Because, again, I'm just laying it out there... YOU DON'T GET IT. However, here is what I hear most often that I think is valuable to understand:
- It is isolating. The normal social routes for you, don't exist to the same extent as they do for you (or at all). Going to the picnic or school fundraiser with my kid
I get that; but the truth is that when you have a kids with needs that exceed most others, it takes determination and an ability to see the long view to get us through. Parents of kids with special needs get angry, frustrated, sad, helpless, and hopeless; which is not easily tolerated by others.