I went to Costco the other day. This in and of itself is not at all that notable, except perhaps that I went without the kids on a weekend, which is definitely out of the ordinary.
Costco was crowded, which it always is on a Saturday, and I was rushing through as quickly as possible because I had to go through twice (yes, I require two baskets to buy everything).
On my trip through the meat department, I noticed a man with his daughter. She was maybe 7 or 8 years old, with brown hair down to her shoulders and darling round face. She was also in a wheelchair.
I immediately felt akin to this man. A man who knows what it feels like to be a special needs parent. Knows the challenges, the doctors’ appointments, perhaps the therapy appointments and of course the emotional journey we have all been on – I knew this man understood.
I wanted to say ‘hi’ to him. To give him a knowing glance. To somehow say, “I see you. And you’re doing a good job.”
But it struck me hard that he may not understand – or relate – to my journey with special needs.
Because our journeys look different on the outside. For me, when I go to Costco, often times Matthew is yelling from his seat in the over-sized basket that he can’t sit there because it hurts his penis (yes this actually happens), and then flees from me the moment I turn him loose – sending me into a walk-run through Costco after abandoning my cart, purse and all, because I fear he will head straight to the emergency exit door (which has happened in more than one location).
To which people around me giving me judging looks, huff and puff under their breath and otherwise act as if my son was a problem child.
My son’s challenges are invisible.
And worse yet, they look like behavior problems.
This man didn't have that - or at least not from the outside looking in.
His daughter was very well behaved, followed her father easily and seemed to be rather enjoying herself.
So, I didn’t say anything to him. Not a word.
I smiled at his daughter, as I leaned around her wheelchair and grabbed 6 lbs of hamburger, and that was it.
But it got me thinking of a meeting I went to with my husband years ago – a support group meeting – one that I was just recounting in an email last week to a reader who had experienced the same thing.
Comparison.
My husband and I walked into a support group meeting to see a speaker give a talk on resiliency. Something that is as important to special needs families as the air we breath and the water we drink.
When we arrived there, we took our spot at the back of the room and began to listen. This particular meeting had a great deal of sharing going on – and all of the parents and families there were eager to put in their two cents.
Quickly my husband and I realized that these families were dealing with MANY issues we weren’t. Physical challenges, ‘larger’ diagnoses, and we began comparing our life to theirs.
A nice couple near us started talking about how hard it is for them to have any time alone because of their daughter’s need for oxygen and a feeding tube all but prevents them from having a babysitter.
Another talked about getting their child – who was now a pre-teen – in and out of his wheel chair. Let alone in and out of his bed. And the bathroom.
Hubby and I were there to talk about our 4 year old’s Sensory Processing Disorder.
My son could walk.
And talk.
And eat on his own.
He could hug me.
And climb in and out of his bed all by himself.
Suddenly, we felt small. Ashamed that we were complaining about something that was so relatively easy in comparison.
We left that meeting feeling grateful that our son ‘only’ had SPD.
But when we got home, he still had Sensory Processing Disorder (and other issues that had not yet been diagnosed).
And our life was still hard.
Comparison is a dangerous thing. Yes, keeping life in perspective is a good thing, or at least it should be, but comparing your life to another’s is bad.
Our lives don’t compare to others – those that appear to have things ‘easier’ than we do and those that appear to have things ‘worse’ than we do.
Pain is pain. Struggle is struggle. It doesn't have to be a certain amount to qualify as 'enough'.
So honor where you are. Honor your path. Honor your journey. Honor its challenges. Honor its victories.
In retrospect, I should’ve just said hi to the man at Costco. I should’ve honored my own journey and the journey of that family by trusting my instincts and reaching out.
No matter how different our children’s challenges are on the outside, no matter how many things we don’t have in common, that man at Costco and I had perhaps the most imporant thing in common: Being a special needs parent.
Which is a strong enough tie, isn’t it?
20 comments:
The words "invisible disability" stuck me...
That's exactly what it is. I know other parents think my Muffin is just being a spoiled brat when he can't help but stand and jump up and down in the booth at a restaurant....
I know better. Thank you for this post.
Yes, yes, yes. I think one of the best things to happen to me was that our insurance pays for therapy that is housed in a building connected to the hospital. When I see the other kids that cannot talk or walk then I know that I can handle what ever comes my way with my daughter. I have my rough days (like yesterday) but I always try to keep things in perspective.
Our life could be different.
Thank you for posting this. It reminded me of a support meeting I went to years ago. Someone there said: If you were to go around this room and have everyone present, put there worries/challenges etc on a table for all to see. Then if we were to go around and have a look at everyone's different paths and needs, we'd likely pick ours up again, and do it gladly. But in doing so we'd realize we're all the same, yet different.
Thank you, Hartley.
Thank you. You said what I've been trying to say. I was just asking a friend this weekend, what do I say when my kid answers a question (from an adult he doesn't know him well) in a very logical matter of fact way that appears quit rude. "invisable disability" there is no comparing disabilities but I feel as if SPD (and similiar) requires so much more explanation...
Oh man alive how this strikes me. Even within the community of autism and similar diagnosis the comparisons lfly and it infuriates me. I have finally learned to be ok with my kids beinq who and where they are and it beinq okay if some days it just sucks.
But so many people want to compare. Want validation their lives are harder. Or want to be quiet because thier lives are easier.
NO life is easy. NO journey with special needs is simple. We can all learn and share and compare in POSITIVE ways.
And next time? Definitely say hello to the man. Autism has brouqht me so much out of my shell as I qo out of my way to connect with stranqers (especially those with invisible issues in their kids) because we are all the same. <3
I couldn't have said it better! I so relate to all your feelings and it's good to know that someone feels the same. Thank you!
amen to all of this.
The invisible disability struck me too. In some ways, it's like mental illness. It's there, and it makes the person's life very hard. Just because you can't see it doesn't mean it's not there.
thank you.
alysia
I struggle with this all the time. And after my son's autism diagnosis, everyone was quick to tell me how lucky we were that it was just autism. It's a constant tug of war with guilt when we see a child and/or parent who is struggling with something much greater. So thank you for putting this into perspective.
~ Lisa http://www.autismwonderland.com/
Invisible disability. That's right. I can't tell you how many times people told me that my kid was just like theirs. Um, no. And the comparison thing is totally dangerous. I've even done it between my two boys. I Know I shouldn't. I'm going to try harder now.
Hi all,
I am a little surprised this struck such a chord with everyone. But, I should've known, right? :)
I really think parents of children with 'invisible' disabilities often get stuck in the middle - it could be worse - but it still sucks. Hard to balance that, right?
I say all the time, "I would rather have my problems, than your problems." Which goes hand in hand with my hubby's saying, "The grass isn't greener on the other side, it is just a different shade of brown." LOL I love that.
Thanks for the comments!
Hartley
So, so, so, so true! I find myself falling into the comparison trap all too often. An acquaintance once said that when we compare we end up either feeling superior or inferior and discouraged. Neither of those is good. We are all on our own journeys and I try to remind myself that everyone, even people with "normal" kids, struggle. It's hard to remember sometimes!
Hi
Well said!!
Michelle :-)
Thanks so much for this reminder. I often stop myself from saying I'm the parent of a child with special needs. My son has SPD and anxiety. I work with children who are far more involved. But, you're right. It doesn't mean that my struggles are any less. They are just different because they are mine.
Great post!
I recently had another special needs mom at therapy act very offended when I told her my little guy went to a special needs preschool. She could not see how my son was special needs. After all that we have been through, it really hurt me. It hurt so bad that I cried all the way home because I felt so tiny and like no one cared what my little man is going through. Thank you for this post Hartley. You get it even if it seems like no one else does.
Excellent post! Have felt like a fake at many of our local CARERS support meetings, but I try telling myself that I need to be heard the dames as the other parents of kids with special needs.
"Pain is pain. Struggle is struggle. It doesn't have to be a certain amount to qualify as 'enough'. "
For me, this says it all. Thanks so much for your post.
OMG I found myself doing this just this weekend...I am blessed to have great friends that happen to have kids with SPD and ADHD. As we all gathered I felt bad because my little J didn't want to socialize with any of the kids. he was content watching Little Einstein's...I am going to try hard not to compare him!!!
This one hit me pretty hard. I constantly feel like I don't deserve to consider myself a special needs parent when my son can walk and talk (and run around and cause trouble and make strangers assume I'm a terrible parent). I've felt a suprising amount of guilt when chasing him around the neurolgist's waiting room while other moms tend to children with wheelchairs and trachs. Very much felt like we didn't deserve to be there, like he wasn't sick enough or something.
I think "invisible disability" is going to be my new go-to phrase, both to help explain SPD to others and to remind myself what I'm really dealing with.
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