It was coffee with a friend that brought this to the forefront of my mind. She mentioned that she didn’t feel that her family’s experience with special needs was the same as others. She feared that since her family was not dealing with a “serious” diagnosis that she – in some way – didn’t belong to this club of special needs parents. I scrambled to reassure her, to let her know that there was indeed a place for her here.
I hurt for her in that moment, but I could see how easy it would be for someone to feel this way. In the special needs community, there seems to be a need to out do one another. You see it in many forms. Some families with special needs look at the families with more severe challenges – such as aggression – and vehemently argue that such a situation doesn’t represent the majority. You then see some families whose children do have more challenges claim that their family’s situation is harder than another.
What does that do? It divides us. It separates us. It places us into warring factions when what we need most is to unite for the good of our children – for the good of us all.
Separating ourselves out into functioning levels, behavioral challenges, and one flavor of special needs versus another only serves to marginalize us all. The families with children in the more moderate range find themselves excluded from both extremes, as they don’t feel that they belong with the high-functioning families and they don’t have a place with the families with greater challenges. The families with high-functioning children are left feeling as though the issues they face daily are not a big deal. The families with children with greater challenges feel that the experiences of individuals at the other end of the spectrum takes the focus away from the very real basic challenges they face.
This leaves many families feeling as though they have no connection to each other’s experiences. What good does this all serve?
It marginalizes people like my friend.
I’ve spoken before about the lack of true meaning contained in “functioning levels”, but it deserves to be mentioned again…the level of functioning of a child does not make that family’s experience any easier or harder than anyone else. It just makes their experience different. Take my boy, for example. His developmental pediatrician places him in the moderate range in terms of functioning. There are families – many families – who have higher functioning children than mine. There are also many families who have children who are lower functioning than my boy. So, whose experience is better or worse?
My argument is this – does it matter? Right now, we are dealing with teaching Jack to chew, swallow, communicate, move, and stay regulated. Another family may be struggling to teach their child to walk and ambulate independently. Another family still might be facing social anxiety and delayed social skills. You might try to arbitrarily say that one is worse than another, but would that really be accurate?
You see, to the family dealing with social skills challenges, it might be absolutely heartbreaking for them to watch their child struggle to make friends. That struggle to make friends might be affecting the self-esteem of that child, which can be equally painful for a parent to watch. To those parents with the so-called “high-functioning” child, watching those social struggles might be as equally gut-wrenching to them as watching my child struggling to eat is to me. It doesn’t mean that Jack’s challenges – and thus those of my family – are any greater than theirs; it just means that our challenges are different. The impact on our families, however, might be similar. Who is to say that my son’s autism and SPD trumps your child’s dyslexia? Who is to say that the family dealing with standalone SPD is somehow less burdened than the family with autism?
It isn’t a competition.
As a community, I would like to challenge us to step away from those standards and barriers we place between each other. Sure, you might look at another family’s situation and think, “I wish that was what we were concerned about right now!”, but you don’t have to verbalize it. You don’t have to top someone else’s experience. As special needs parents, all of our children – by definition – have challenges. We can recognize that those challenges affect us as parents and that those challenges cause us parents to hurt for our children. Those challenges keep us parents up at night no matter how tiny and insignificant someone else might think they are.
Our experiences are all valid. We are all welcome here. This club – this club of special needs parents – isn’t a club that anyone wants to join. We’re all reluctant members of a group that should be there to support us rather than divide us.
I challenge us all to reach out to someone else whose experience might seem to be “easier” than our own and to strive to understand the challenges that they face. Join a general special needs support group and make friends with another special needs parent whose child does not share the same diagnosis as your own. Lend a listening ear when that parent has concerns over her child’s lack of playdates. Listen when that parent discusses struggles with reading comprehension. Remove your own judgment from those situations and try to understand how that other parent must feel.
You might find that – in the process – none of our experiences are that different. You might discover that they deal with the same issues that you do. You both might battle the school district for more OT, or you both might have trouble getting therapy approved through your private insurance. You might find that you’re both struggling with potty training. You might learn something.
Let’s truly make this a community. Let’s make this a supportive community that welcomes all – no matter how small the challenges – into the fold. Let’s make this a place where all feel at home, all feel at ease, and all are welcome.