special needs parenting

If Comparison is the Thief of Joy, Then Count Me Out

As a blogger, I follow many bloggers, it’s what bloggers do. I love reading about other families and lifestyles and I often find myself nodding in agreement with the words on the pages, sometimes daubing away tears, other times spewing coffee with laughter; and when I read those, it makes my day.

On the flip side, there are many headlines that I scroll right on by.

When I do, it’s a bonafide case of “it’s not you, it’s me” I can be a little touchy, you see.

Actually, I’m not certain that touchy is the right word. It’s just that the normal challenges of parenthood elude me. When I read about potty training a 3-year-old (as challenging as that may be) I can’t relate, it never has been and never will be my challenge (Hannah was so the world’s easiest child to potty train, and the rest were a whole different ballgame). Just insert whatever normalish rite of passage parents are struggling with, and picture me making this face and scrolling right on by.

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Most bloggers strive for relatability, and that relatability is for the masses, the typical families with the usual struggles and normal crises.

Which means that they don’t relate to me at all, not even the tiniest little bit.

In a 16 year series of combined baby steps, normal steps and a few truly giant leaps, we have left behind any semblance of relatabilty in exchange for quirkiness and complexity.

This leaves us in a situation of continually trying to help people see us and make a bit of headspace for us where we are. Wading though the depths of normalcy on a daily basis, which reinforce just how unrelatable we have become. It’s a constant, relentless cycle.

Social media is like that for parents of kids with complex needs.

There’s this dichotomy for us when we log on and scroll down. My feed is a mix of folks from my family, high school, college and my former jobs, so there’s a pretty sizeable chunk of average in my timeline. That average is foreign to me, and often reminds me of just how many ways we veer away from average. Another contingent is my cadre of parents of complex kids. The ones whose lives are just as unusual as my own. Connecting with them feeds my soul. I write for them, and I read their posts and breathe in the connection.

In order to keep balance, though, I tend to avoid much of the Normal McNormalson that pops into my life via my screens. Leading our family through each day is a feat in itself, I don’t need the constant comparison to slow me down.

Keeping up with the Joneses will never happen. You know how they say that good fences make good neighbors? The same is true of the social media and blogging neighbors. I maintain a virtual privacy fence loaded up with latches and locks, not to keep my family in, but to limit the potential for constantly comparing and contrasting on my end.

That yellow tulip, popping up right there in the midst of all the purple makes for great contrast. It doesn’t blend, it doesn’t match, it just stands out. The tulip almost certainly hasn’t a care in the world about it’s mismatched setting, and likewise, I prefer not to fuss about all the purple flowers surrounding our singular yellow bloom. Our blossom is lovely in it’s own right, and needs not concern itself too much with the vast purple expanse surrounding it.

If comparison is the thief of joy, then I don’t think it’s a game I need to play. Protecting my heart and shielding my joy makes life around here so much sweeter, which is just the way I like it.

advocacy · parenting · special needs parenting

7 Big Truths About Special Needs Parents

Every week or so my messenger app dings with a message from someone reaching out. Often it’s a question; someone looking for input or encouragement, asking advice or giving any of the above. Sometimes it’s a local friend, often strangers find me via Google or an article and seek me out.

No matter who it is or what the reasoning, I welcome it.

I’ve noticed a few things as well. Though I’m reluctant to generalize, there are some threads common to many of these families.

  1. We’re dedicated. Whether it’s helping a child with ADHD or dyslexia succeed in a general classroom, finding a niche for a child with Asperger’s (yes, I know it’s technically not called that anymore) who is gifted, making plans for a child with a complex medical diagnosis or finding the right fit for someone with a developmental disability; families are bound and determined to do right by their kids.
  2. The resources aren’t readily available. This many years after IDEA and ABLE, it’s still hard to find and create resources for people who need any services or aids outside the norm.
  3. We’re tired. We struggle to find child care or respite, we spend untold hours driving to and attending appointments and meetings, we often are years or even decades behind on sleep, and we’re often trying to brainstorm, troubleshoot and solve behaviors.
  4. We’re broke. Between copays, deductibles, and gas, our money flies out of the bank account with extraordinary speed, and it’s not from being irresponsible. In fact we often feel guilty for small indulgences that many people take for granted because we know that the $2 we dropped on coffee is $2 less we can pay on bills.
  5. Despite all that we’re usually grateful. We realize that the services we can access for our kids are unprecidented, and though we struggle to make it all work, we do so gladly!
  6. We’re an unparalleled network. We find each other, we support each other, we advocate together and encourage each other. It’s a worldwide commune where people gladly share anything they have, eager to help one another out.
  7. We have a vision. It starts with our desire to make the world a better place for our children, and a recognition that our children make the world a better place. And we’ll go to the end of the world to bring it to fruition.

What would you add?

parenting · special needs parenting

The Loneliness, Do you See it?

A couple of my friends shared this post this morning. Take a minute and read the texts that special needs parents would like to get.

There’s a theme there, do you see it? They’ve been left behind. They feel invisible. They’re lonely and overwhelmed.

It’s pretty much accepted in special needs circles, our families get left behind by most of our friends. We’re the ones watching the world go by and wondering if everyone has forgotten we’re here. The people we hung out with before special needs entered our world went on about their normal lives and we couldn’t keep up.

I suspect we ghosted them or RSVP’d “no” a few too many times. Do they know it was unavoidable? That we wanted to go but couldn’t find child care? That it’s hard to get out these days? It sounds selfish, but we need our friends to bear with us a little bit. Consider what it’s like if your child has gotten mono and you have had to slow down and tuck in for a season to care for them, maybe that’s a good comparison, except it isn’t just a season for us, it’s ongoing. It’s hard to see everyone get together without us. I wish I had the energy to try harder, and I wish you cared enough to slow down and include us. Or just show up once in awhile.

It’s tempting to just write it off, suggesting that it’s your loss, or that we must have never really been friends anyway. But I did think we were friends, I really did. I think that if your child had special needs and mine didn’t that I would have stood by you. I thought you cared about our family, and when we went through our hardest times, the test was too much for the friendship to bear. It’s a loss for me, a big one, though you don’t seem to feel the same. It hurts.

I usually focus on the ones who stayed. The friends who showed up instead of stepped out. The ones whose steadfastness has exceeded what we ever could have asked for. Those friends who do show up with coffee and a smile, the ones who have carved out time for us when we couldn’t keep up, who make room in your lives no matter what. We know it’s hard to fit us in, and we know it takes effort to include us, but you always do. You always do.

advocacy · parenting · special needs parenting

Why Do I Post So Many Pictures of My Kids?

Many bloggers take great care to avoid showing their children's faces, to keep a modicum of privacy for their families. They make up blog names for their kids and keep the family's identity anonymous. I get that, the Internet is far from safe, people steal photos of children and use them for rotten purposes. It seems that it's foolish to churn out photo after photo of my precious brood.

But I do.

It's because I want you to see them, to really see my kids.

I want you to get used to their features; those almond shaped eyes and small mid face that are the hallmarks of Down syndrome.

I want you to see their humanity, their preciousness, and to recognize them as the multifaceted, complex people that they are.

Alex was stared at yesterday. Blatantly, unavoidably stared at for several minutes yesterday. I'm sure it's because he wears his diagnosis on his sweet face. Anyone who might not be familiar or comfortable with Down syndrome will see his differences and not be able to stop examining him in order to perhaps put a finger on just what is different about him.

I want a world where every single person can look at someone with a disability and see the human being, not the difference.

By my sharing of photographs and our daily ups and downs, I hope to give insight that will facilitate that. I want people to understand that my children are as adorable and adored as any other child, and also to realize that there are differences and challenges; both for them and for us as parents and caregivers.

This is all my bodacious effort to make the world a place where they are accepted.

How can I do that if you never see their faces?

I know that some will disagree, and I'm okay with that. In fact I'll gladly listen to any dissenting voice. I've never claimed to have all the answers. I'm just doing everything in my power to make the world a safe, accepting, and welcoming place for my children.

Something many parents get to take for granted.

special needs parenting

Joy is an Act of Resistance

Yesterday was a day that started out dicey and slid down the slippery slope to an urgent visit to a psychiatrist and social worker at the Community Mental Health office. Tears were shed, cuss words were uttered and there were some awful moments for every single family member.

In the morning we had discussed having a fire in the fire pit and eating dinner outside. Even after the kerfuffle that kept on escalating, we managed to have our fire.

It seems obvious that when your day completely derails to admit that it's simply derailed and hang it up.

But I don't believe it.

Our fire was a bold statement. A statement that screamed that the awful moments won't define us. That we refuse to surrender to the chaos. That we will continue to pursue joy no matter how elusive it is.

So we had our fire and we laughed and had s'mores and lived. At the end of a fractured, derailed day we came together and declared that we will continue to try. No matter what.

This isn't denial. We know how close we were to disaster, it's defiance. We will not let our derailed day define us.

It's resilience, the act of getting up again and again no matter how many times the rug is pulled from beneath us.

It's resistance, refusing to slide down the slippery slope into despair.

It's a way of communicating our determination to win the war even when we lose the battles.

It would have been easier for two exhausted parents to just throw the food on the kitchen table and claim every right to give up on the fun we had planned. It might have been the obvious choice, but we would have missed the fresh air, the communion and teamwork that happens when you enact a plan together.

We had our fire and it was good. We ended the day with a fresh cherry of joy and a dab of whipped cream on top of the sundae we had to pick up off the sidewalk.

parenting · special needs parenting

6 Ways to Keep Your Sanity When Your Kid is a Handful

Alex is a bit of a handful, Ben is both hands overflowing. There are still many days when I'm about to tumble right off the deep end, but I do have a few sanity savers that keep me just this side of the brink.

  1. Locks and gates. I keep areas of my house cordoned off and keep the kids in the house. This means I can shower, drink my coffee and just function as a human being. It doesn't make things easy, but it keeps my kids safe. We literally lock the kids in the house. Elopement is real and it's terrifying. I found Alex about a mile away one morning when I got up. Keeping the kids in the house means they're reasonably safe.
  2. I have a mom clan. Not that I ever get to see them because their lives are just as zany as ours, but I can hop on social media and find the women who get it and know that no matter how ridiculous my life looks, they will never second guess or judge.
  3. I exercise. Without my runs I would completely lose my mind. I don't know if it's the runner's high or just the mental organization that comes from movement and nature, but man alive I need my runs.
  4. I've learned to let it go. Whether it's the frustration or upset over my own mistakes or the latest meltdown from the kids, I pretend I am putting a leaf into a stream and watch it float away. Sometimes I have to release it a few times before it goes away completely, but thankfully my stream can handle as many leaves as I need to place in it (and occasional logs too).
  5. I cultivate meaningful activities at home. I get great satisfaction out of cooking and baking and gardening, all of which I can do in those precious minutes when my kids are entertaining themselves. (With help from the door locks so I can turn my back for a few minutes). Being creative and having meaningful activities when I feel stuck at home reminds me of my own identity and value aside from just being the mom.
  6. Live in the moment. Rehashing the crap and worrying about what might be coming will rob you of your joy. It's easier said than done, but so worthwhile! The leaf in a stream works for worries too. You don't have to get mired in what ifs and should haves!

This is my list, but it isn't the only list. Everyone is different so these may or may not work for you.

I would love to say "take a break" or "take time for self care", but I know there are far too many days that those are impossible. In fact if it wasn't for having a husband who is just as committed to exercise as me I'm sure that would fall by the wayside as well.

parenting · special needs parenting

My Life Feels Like a Test I Didn’t Study For

A friend posted those words yesterday and I tried them on to find a perfect fit.

Remember those swimming tests you had to do to get the special armband at summer camp, you know, the one that meant you could swim wherever you want?  Those tests terrified me.

I had what could (perhaps slightly dramatically) be called a near drowning as a toddler. It’s one of my earliest memories, being under the water at my aunt and uncle’s in-ground pool on the nation’s bicentennial. I didn’t lose consciousness or anything, and my dad scooped me out relatively unscathed, except for a lifelong fear of deep water that kept me from completing swimming lessons when I was too terrified to jump into the deep end of the pool.

Regardless of my lack of swimming instruction coupled with the ability to sink to the bottom of the pool and remain there with zero effort which has left me a remedial swimmer well into adulthood, my fear of missing out demanded that I not be left in the shallow area of the lake at camp. So, by sheer force of determination, I took (and passed) the swimming tests at summer camp every year.  I always started out convinced I would drown, but somehow managed to keep my chin just above the water line for the full time mandated to get my armband of freedom.

And now that’s how I live life every day.

When we got married and started having kids I had no notion that anything other than 2.3 typical children would be our end result.  I didn’t realize how intimately acquainted with terms like “translocation 21:21” or “ganglion cells” or “bone anchored hearing aid” I would become. Or that it would be a sink or swim style test that I had no preparation for on an almost daily basis.

But here we are, and today I am reminding myself that I haven’t drown yet.

The test is different every day. Often I pass like it’s no biggie. There are times, though, when I need a lifeguard to throw me a floatation device, and there are days when I have to grab the dock and climb out of the water because my nose is barely clearing the surface. But most days I pass the test.  Those days when it’s a near miss, they blow my confidence, but generally leave me intact if not unscathed, though I never quite get past the fear of drowning.

Life feels like a test I didn’t study for, but I’m learning that I pass it almost every time, even if it’s by the skin of my teeth, and even on the days I don’t pass, I survive to try another day. And I think I’m learning to be okay with it.