advocacy · siblings · Uncategorized

I See You Too, Sibling

Dear Sibling of a Child with Special Needs,

I like to see the bright side of things, and that means for you too.  When you say you’re more resilient than your friends, I think “Yeah, that’s right, that’s from all the crap you’ve been through!”

Then I think about it.  Man, you have been through some serious crap.  Of course you’re resilient, resilience is a matter of survival.  You’re more empathetic and certainly more accepting of people from every possible background, but of late, I’ve been wondering about the cost.  You had no say in this, we’re just the family you wound up in, but I want you to know that we see your struggles.

When people at your school use the word “retard” and don’t understand why it bugs you, we see you.

When you feel like we don’t have the time or energy for you or your problems, we see you.

When your friends have no idea what your family or Down syndrome or autism or cancer are like, we see you.

When we miss your school events because there isn’t enough of us to go around, we see you.

When you feel like all of our hopes and dreams for a typical child are your responsibility to fulfill, we see you.

When your siblings meltdown in public and it feels like there’s a giant spotlight on our family and the whole world is watching, we see you.

When you’re shoved to the back burner, even on your own special occasions, because their needs are constantly pressing, we see you.

When every single holiday and special occasion has to be planned around them instead of you, we see you.

When emergencies happen and we expect you to take on adult responsibilities at a moment’s notice, we see you.

When you’re bummed that we don’t want to go out to do “normal” things as a family because it’s just too much effort, we see you.

When I’m busy on the phone and email day after day and it seems like I’m a full time case manager instead of a mom, we see you.

And I want you to know how much I admire you when you rise to the occasion, which you so often do.  You are resilient, and that makes me so very proud.  And I want you to know that when you feel sullen and frustrated and invisible, that I get it, (even if I get frustrated back).  I want you to know how valuable and wonderful and beautiful you are.  I want you to know that you matter, even though I’m often too frazzled to show it.  I want you to know that I see you and hear you and love you.  I wish I showed it more and I wish I showed it better.

 

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.

Uncategorized

Sitting on the Porch Swing

The life-affirming heat of the sun is scorching on this otherwise chilly morning.

My to-do list unrolls like a cartoon scroll in front of me. I'm choosing to look the other way for a moment, but the moment keeps stretching out in front of me.

There are so many tasks demanding my headspace that I feel guilty for indulging in this extended pause of my day.

I shove the guilt back into the box it emerged from and sit on it. I feel it shaking and protesting beneath me, as I stubbornly stay put.

Once set into motion this day will continue on it's own momentum. Phone calls and housework and the care and keeping of young ones. I'm certain it will spill over into tomorrow and endless days following.

I'm ignoring all those tasks screaming for attention and being. Just being.

Somewhere in this being I recognize someone I love. Someone I neglect. Someone worthy. I nod a silent greeting to her, wink, and toss that box of guilt off the porch rail to the ground below, out of sight. We decide to sit and catch up for a few more minutes. It seems like this impromptu connection deserves coffee; alas, if I move to perform even that one task, the spell will be broken and the to-do list will unfurl and demand to be reckoned with.

So I sit on the porch swing with my beloved and we commune for awhile longer.

And she is lovely.

And she is me.

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 arm band 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 my 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.  Thoses days when it’s a near miss, they blow my confidence, but generally leave me 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. 

running

Putting the “Running” Back into the Writing, Running Mom

I haven’t written about running hardly at all in months. Because I have hardly been running at all in months. 

I could say it’s because of my vein ablation or the busyness of moving, but those would be excuses and I’m a no excuses woman. 

The real deal is that sometimes running is hard. Really hard. Like, I’m somehow prompting my legs to move forward by force of will and I look down to find the darn cheating things walking instead of running. So I goad them back into a run, and low and behold they quit on my again. 

And in those times I wonder if I’m just not trying hard enough. Or if my determination or desire is the problem. I don’t rightly know. I just can’t make my legs do what I’m telling them to do, even under duress. 

I walked a lot, but walking isn’t running. It doesn’t cleanse my soul and mind the way running does. It’s good, lovely even, but it doesn’t make my spirit soar. And I have a spirit that craves a good whoopdeedo on the air currents. 

Whether it’s because I’m stubborn or stupid, I keep trying. I’m always just sure there’s some super secret combination that will unlock the run for me again. 

Don’t tell anyone, but I think I found it. I’m not sure exactly what it even is. I stumbled upon it in the dark somewhere and unlocked my chutzpah.  I’m back. (Maybe, I mean, at least I think I am). 

It’s nothing special, except to me, but doggone it, the past few weeks when I tell my legs to run they do it. I don’t catch them cheating these days by sneaking in a walk while I’m not paying attention. And I’m pretty sure those two ton ball-and-chains that had been shackled to me fell off a ways back, because my legs feel like legs, not like cement bags. 

I’m a touch slow on the uptake, but I do believe that sometimes my body can tolerate and thrive on running, and sometimes it can’t. (I know, quite the in depth analysis, no wonder the epiphany took so long). But right now it can, and I’m going to run with it!