running

I Never Have Been One To Give Up

Late October of last year I was having a crummy day and took off for a run. I needed the fresh air and movement to calm my mind, and I don’t use the word need lightly. There’s nothing absolutely nothing like a run to organize both my thoughts and my day and give a hefty lift to my spirit.

At the end of my run I limped up the driveway and decided to call the doctor and take a month or so off, just for good measure. The crankiness in my knee was becoming downright ticked off, and running was the obvious culprit.

Fast forward to today, a year later, and I have attempted two runs since then.

Darn.

In August, I decided to quit going for walks too.

I had been beyond worried that it would be a surgical case, that I’d be laid up for several weeks. Instead it’s a complex scenario of bursitis, patellofemoral syndrome and IT band syndrome. None of them are particularly severe, but none are readily treatable.

We tried two different types of injections in two different places, and I’m none the better for them.

What more is there to do but rest? This particular malady, or combination of them, isn’t awful, in fact, when I just sit around, it calms right down.

Alas, that’s easier said than done. Running not only keeps my mind on track, it tones and sculpts my body. It’s my go-to for managing stress, grief, joy, frustration, my ADHD and my weight and health. I have literally been self-medicating every part of my physical and mental health with intense and prolonged exercise. It’s like the snake oil of yesteryear, guaranteed to fix everything from the vapors to sleep.

And now, like dust in the wind, it’s gone.

Not that there is such a thing as good timing, but during the first year after losing our daughter to an overdose, I was in a lousy position for losing my primary coping mechanism.

I prefer to keep a positive attitude, but in this case, I have been just plain pouty. I’ve lost my ability to run in the past, and against the odds, worked my butt off getting back on my feet. I just wonder aloud why me, when there are millions of people who would no sooner run than be swarmed by bees. A knee that only gets cranky with exercise would be no burden to many, why, once again, do I have to suck it up and give up something that I love and that’s good for me in so many ways?!

I won’t BS you and try to say that I understand any of this. But I will tell you that I’m not about to stay down.

Instead I’ve been seeing a counselor and learning new and more coping skills. I’ve developed many new hobbies like collecting maple sap and making syrup and tending chickens, as well as cultivating my largest and most productive garden yet and canning and freezing the bounty.

I’ve enjoyed living the slower pace of homesteading, and it’s indubitaly beneficial to have my pocket full of coping skills to better equip me for whatever life throws at me.

But. . .

I won’t give up on running.

My shoes have moved to the back shelf in the garage, and they’re mighty dusty, yet I’m clinging to them with just a tiny glimmer of hope.

I never have been one to give up on anything.

advocacy · Down syndrome · Uncategorized

Down Syndrome Awareness is Not Just For Little Ones

When my son Alex was first born, I felt compelled to make sure everyone in our lives knew just how precious he was. I enjoyed great success, but in retrospect, Alex made it easy. Babies with Down syndrome are often adorable, and Alex was no exception. He made my advocacy job easy, and after awhile, considering my success, I relaxed a bit on the advocacy. There were IEP meetings, and plenty of parenting tasks to take up my time, so campaigning for the acceptance he already enjoyed seemed somewhat superfluous.

Fast forward 16 years, and Alex has hairy legs and armpits, a deep voice, and is almost my height. As any mother does, I still think he’s the most spectacular child in the world, and as cute as ever. However, when you add in significant speech and social skills delays, compounded by the already interesting early teen phase, he often doesn’t get the warm public reception he once did.

But as Alex’s mom, I want to tell you that he is the most thoughtful young man I know. Every single day he asks young man I know. Every single day he asks me how my day was, and even actually listens to my answer. He loves nothing more than cooking, except eating, and will cheerfully lend a hand to anyone who asks.

Alex is a gamer extraordinaire, and can beat just about everyone he knows in almost any game. He can throw an awesome spiral with a football, and hit a home run in baseball. (He gets his athleticism from his father, not me.)

Alex deserves awareness too, just as much as the older teens and adults do. People with Down syndrome are diverse, interesting and valuable as members of our communities. They have desires and interests, and live full, active, productive lives. More and more they are branching out into careers as actors, models, business owners, and contributing their considerable gifts the the communities where they reside, and their communities are better for it.

Uncategorized

I often feel it almost impossible to convey what it’s like to be the primary caregiver of a child with complex needs. Sometimes when I post things, people say they get it, but the simple fact that they think they do, speaks to just how much they don’t.

My son is 12, but we joke that he’s like an infant or a two-year-old, but the truth is that it’s more like both an infant and a two-year-old together and then some.

Exhibit A:

This was my night’s sleep, my husband was up both with means a few times separately.

autism · Down syndrome · special needs parenting

How Summer Changes When You Have Kids With High Needs

Summer break isn’t my favorite.

I used to love it. We had a camper and several times each summer our family would visit different parks around the state, enjoying nature and time together. It was idyllic, and this, or something similar is what summer means to many families.

If I had to choose just one word for what has changed, that word would be vigilance.

Our son, Ben, has high needs. Yes, he has Down syndrome, but so does Alex, there’s a difference. Add in autism, with some hefty medical and psychiatric diagnoses, and time with him requires constant vigilance. Like bringing super busy and fearless two-year-old twins to the Grand Canyon overlook without a rail kind of vigilance. And that is just outside at our home, when we go anywhere else our efforts are multiplied.

This is why:

  1. Our child doesn’t have discernment. He occupies a twelve-year-old body, but his mind is much like that of a toddler. Dangers like busy roads, campfires and water mean nothing to him, and we have no way to explain it to him.
  2. He doesn’t learn from experience. Family members have been flummoxed to see him run into the water until it’s over his head, then stand there until someone rescues him. After coming out coughing and hacking, he will turn around and do it again. And again. And again. He will even laugh while doing it because he gets attention for it. He has yet to grow out of it, and I have my doubts that he will. Any time spent near anything dangerous is similar.
  3. He doesn’t respond to punishment of any sort. Neither in school nor at home. We have yet to find a way to create a consequence for his actions which discourages him from doing the same in the future, and that is with social workers and psychologists using their best tools. (No, this isn’t an invitation for you to share your idea with us).
  4. He melts down. Too much stimulation, too many “no’s” or transitions, or just any change of setting are triggers for meltdowns. Anyone with a toddler knows what it looks like, flopping on the floor, screaming, kicking, hitting, biting and more, with murderous rage. But this is a twelve-year-old. He weighs about 100 pounds now, and he isn’t getting any smaller.
  5. He has discovered that taking his clothes off gets a reaction, and he loves reactions. Any time spent in public is taking the risk of public nudity.
  6. It’s a break from the structure and routine that keeps him together. School is a setting with professionals who work with him on these and many other things. He craves the predictability, and reproducing it at home doesn’t and won’t work, and goes against the fluidity that makes summer fun for the other kids.

We aren’t alone either. You may not see them, chances are they are holed up at home being selective about going out, but there are many families like ours, struggling just to visit the lake for an hour, or stop at the ice cream store for a cone on a hot evening. We know we need to get our kids into the community, but we do it judiciously, because so often it ends in frustrated exhaustion and tears. We live this year-round, but during the school year, our children have the structure and stability of professionals during the day, and we meet them refreshed and ready in the evening. Those with school during the summer have less of it, and the free time feels chaotic to them, and their families both.

Why do I bother with telling you this?

Because not very many people will. We left church, one with a special needs ministry because our son’s behavior and medical needs were too much for the volunteers. We no longer attend the special needs family camp we tried, because his needs were too much for the volunteers. We are the outsiders, the resources there are don’t fit for us, and we struggle alone. And I think it needs to be said.

 

Down syndrome · parenting · special needs parenting

Making Peace With Our Question Mark

When you have a child, they say your heart walks around outside your body, and I couldn’t agree more. All of the hopes and dreams of another person somehow mean as much to me as my own ever have.

We tend to think we will know what parenthood looks like going in. It starts with midnight feeds and changing diapers and blossoms into milestones. Before you know it there’s an independent human being making decisions and taking on the world. Supposedly, if you do a halfway decent job of it, the child becomes successful and lives a good life. But the reality is seldom so cut and dried.

When you have a baby with a developmental disability, you get advance notice that children don’t come with a recipe, guaranteed to come out as expected as long as you follow the directions properly. You know how it’s supposed to go: play sports, do well in school, go to a good college, find a wonderful spouse and enter a great career. Ensure good values and belief system of your leaning. Stick a toothpick in it to ensure it’s baked through and voila!

The recipe is punctuated with random question marks, some more than others, but we don’t understand them, don’t like them, and do our best to ignore them or stomp them into the ground.

Our son Alex is 16 now (hokey Pete, how did that happen?) and we aren’t sure if or how or when college or trade school will happen. He has career aspirations, and we work together with his school team to make step by step goals towards them. He is thoughtful and tender hearted, so we hope for him to find true love. Independence is still millions of baby steps away, and not a clear picture yet.

The recipe card most people cling to is the length of a novel for us, with many revisions and impromptu modifications. Our question marks are neither random nor infrequent. They started immediately and they’re everywhere. Early on we looked question marks straight in the eyes, then made it a full partner in the effort instead of something we try to avoid or ignore. We embrace the questions because we recognize that nothing is given or assumed for anyone, but especially so when parenting children who are not neurotypical.

Once you acknowledge the question mark, you can make peace with it, not only on behalf of your child, but in general. There’s a certain comfort in saying aloud that results are not always proportional to the effort and plans , no matter how brilliantly derived, unravel here and there. Once it’s on the table, the question mark isn’t so terrifying anymore, and it frees you up to focus on the process without clinging so desperately to results.

In so doing we find the magic in the process. And oh boy do we know about magic around here.

special needs parenting

Dusting Off My Gratitude Perspective

Sunday night it started with a fever, vomiting, runny nose and cough. We thought Ben had influenza, so right away on Monday we took him to the doctor for the flu test and to get Tamiflu, which is the recommendation from his Infectious Disease Doctor and Immunologist. The test was negative, leaving us to wait it out instead of getting a plan of action.

I prefer action.

His symptoms have ebbed, flowed, and yesterday triggered a Cyclical Vomiting episode, which we caught early and aborted. It’s Thursday and there’s no end to this mysterious sickness in sight.

Do you happen to have a thesaurus in front of you? Because I am every single synonym available in the English language for frustrated and worried. If you take the normal angst that sets in as a child’s illness lingers past four days and add to it the zebra qualities that Ben has and his uncanny ability to develop bizarre illnesses, then add a few drops of the stress of the potential for leukemia recurrence that always occupies a small piece of my brain. I’m sure you can imagine the scenarios playing out in my mind. And hey, guess what?! I have a hysterectomy scheduled for next week.

I’ve found myself sinking into a mire of what ifs.

This morning I recalled an old trick. It’s been awhile since life has been this chaotic, so my trick was stuffed away in a corner and pretty dusty, but I pulled it out and shook it off to find it in excellent working condition.

My trick is something I call gratitude perspective, and it goes like this:

  • Ben is like a wounded T Rex when he’s sick. He stomps through his day making the whole family as miserable as he is. But gratitude perspective says thank goodness for Tylenol to take the edge off.
  • I’m panicking about my surgery next week. It’s a huge adjustment for the whole family to have me needing care instead of giving it, and if Ben doesn’t get better before then…But gratitude perspective says thank goodness this isn’t happening next week.
  • I’m tired; mentally, physically and emotionally. But gratitude perspective reminds me that Ben is sleeping through the night, so that at least I don’t have sleep deprivation on top of the fatigue that accompanies caring for a sick child.

I could go on, but I think you get the idea. It’s a trick I learned when Ben was sick all the time (Gratitude perspective says thank goodness it has been a good long while since his sickness was a daily fact of life, and now it is an exception instead of the rule.) This trick literally kept my head on straight through many of the months and years of Hirschsprung’s, leukemia and dozens of hospitalizations. (Gratitude perspective; he isn’t in the hospital!)

I’m not sure I would have developed and refined this trick had it not been for the many times that Ben’s situation was dire enough to sap me of my joy and peace and forced me to cling to the tiny victories to survive.

Since those years I have stumbled into reading about resilience psychology, and gratitude is a major factor in resilience. Finding small slivers of goodness in rotten situations snatches back a sense of control in an otherwise uncontrollable circumstance. It may sound insignificant, but it’s a life ring in a rip tide.

I wish I hadn’t packed it up for so long, this gratitude perspective. It’s just as effective as tool in daily life as it is in the disruptions. Rather than grasping for a life ring after getting caught in the rip tide, wouldn’t it be better to just zip on a life preserver as a preventative measure?

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.