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.

autism · Down syndrome

What is Autism and Why Does It Matter to You?

Today is World Autism Day. There are specific activities involved, such as wearing blue, but beyond that, why should you, the average internet surfer, give two hoots about autism awareness and acceptance? Why would it matter to you?

The diagnostic criteria for Autism Spectrum Disorder (ASD) specify that to be diagnosed a person has to have social deficits. Added to this are the criteria regarding sensory processing and rigidity of behavior.

In plain English, what this means that approximately 1 in 68 people have significant social deficits and sensory processing difficulties to be considered Autistic. The disorder occurs on a spectrum from mild to moderate to severe.

Because it’s a spectrum of presentations, you might see one person with Autism who is highly intelligent with more social challenges and rigid behavior and another who doesn’t speak at all, has limited to no social skills and constant sensory avoiding or stimulating activities (or a combination of avoiding and stimulating), and both of them are considered Autistic.

No two people with Autism are alike. When you know a person who is on the Autism Spectrum, you might think you have a pretty good idea of what Autism is, but really, you only understand that person. The next person you meet with Autism might have very some different personality traits, behaviors and social skills.

My son, Ben lines up his cars all the time, lining items up is a common Autistic behavior.

This is where awareness and acceptance come into play:

  • If someone says they have Autism, believe them. Just because they aren’t like someone else you know with Autism doesn’t mean that they don’t actually have it. To get an Autism diagnosis, a person goes through clearly defined standardized testing conducted by a qualified clinician, and chances are that you are not qualified to decide if the assessment was correct.
  • Be aware, when you’re in public that you might encounter an Autistic person. If someone you meet seems to have unusual social conduct, give them the benefit of the doubt and accept them as is.
  • Autism meltdowns are very real and very challenging. Don’t judge the person melting down or the people with them, just give them space and a smile.
  • Keep advice to yourself. Sure, your cousin’s neighbor has Autism and a gluten free diet helped them and your coworker calms his Autistic son with essential oils, but those are two different people, and what works for them isn’t a magic fix for all things Autism related. Most people with Autism and their families have accrued great resources and have tried many things, so chances are good that your suggestion isn’t new to them.
  • They might be using medications, natural remedies, or therapies to manage their Autism, and whatever they’re doing is between them and the professionals they trust to give them direction, it’s not for you to judge their approach.
  • Just like anyone, Autistic people (and their families) want to be accepted. If you want to be helpful, read up on Autism and be a safe and accepting person. It’s really the best way to help. The Autism Society is a great place to start if you want more information.
  • As a parent of a child with Autism, I have been both chastised and blessed by strangers in public, but mostly just ignored. Honestly, being ignored is probably the easiest for us, so don’t feel like you have to help someone who is struggling in public in order to be an accepting ally.

What is really helpful, is knowing that my son is accepted, just as he is. And anyone can do that.

Uncategorized

Dear Suckmeisters and Jerks, I Am Talking to You

I brought Ben to the doctor for the second time this week. The first time he wasn’t quite sick enough for long enough. The second time, this morning, he had an ear infection, sinus infection and probably strep, but we didn’t swab his throat because the treatment would be the same regardless of the result.

When we got to the doctor, we parked close to the door, and as we walked side by side up the walk a woman brushed past us. Upon catching up to her at the door, she hustled up to the desk of the first come, first served walk in clinic.

Sigh.

She had symptoms of influenza and leaned on the desk to complete the paperwork, which took several minutes because she had gotten married and changed jobs. She coughed all over the check in desk the whole time.

I had my own pen out and jotted Ben’s name on the sign in sheet without resting my hands or arms on the desk and sanitized as soon as I was done.

For the record, our check in took less than 30 seconds.

It’s not actually a big deal I suppose, that this woman set us back a few minutes, unless, of course, she left some airborne influenza hanging around for us to bring home. But I’m annoyed, and though I told myself to just get over it, since she might have had a reason for her behavior or a bad day (besides the reason she was there), of which I was unaware.

But the fact remains that she was rude.

And if it costs us a case of influenza, much more than just rude.

When you’re an intentionally polite person, it can feel like your kindness exists in a vacuum. I go through life trying to put others first by being thoughtful and courteous at every possible occasion, but there are days, like when I’m tired from caring for my sick little dude and concerned about his wellness, that my reserves run low. It’s at those times when the thoughtfulness of others is especially appreciated, and the lack thereof especially apparent.

The kindness in the world needs to be recognized and amplified, and by and large that is my focus. However, I think I would be remiss to completely avoid calling out the suckmeisters. The people who take care of themselves first while showing little care for their impact on others.

I’m tired of the suckmeisters.

Both small time like this woman, and in the bigger sense, I’m just over it. Maybe this was an isolated incident for this woman and I should give her grace. Maybe she had already had more than she could take for the day by 8 am and didn’t have the emotional reserves to show a little consideration. But chances are that she was just being a jerk. This world is hard enough to navigate most days without having to work around the suckmeisters and jerks.

So do the world a favor, do what your preschool teacher taught you, and say “excuse me”, and don’t cut in line. The world works better for everyone, including you, when you wait your turn and be polite. Assume that the next person is just as important and valuable as you, and that they have needs too. And when you blow it, say you’re sorry.

In so doing you take a little of the suck out if the world and pay forward kindness, and kindness matters. It really does.

sleep

My Life With Super High Sleep Need

Looking back over the years, I cannot remember a time that I felt ready to face the day, any day, with less than 8 hours of sleep under my belt. And to be at my best, 9 (or more) is where it’s at.

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What a good night’s sleep looks like for me. (Early morning get ups courtesy of Ben).

I have high sleep need.

And in case you haven’t noticed, our society doesn’t exactly laud great sleepers. In fact, in an era when self-care is the topic du jour and we, especially women, and even more so mothers are aware of how important it is to fuel ourselves to avoid burnout, sleep is rarely a part of the conversation.

When you require significantly more sleep than average in a world where 60 hour work weeks and productivity rule, well, you can feel like a loser (at least I do).

It has taken awhile for me to reconcile the fact that I’m never going to be one of those people who can be productive late into the evening and then get up early the next morning and hit it hard again. There was never any all night cramming for exams because I knew my rest was much more crucial than a few hours of additional review. And at this point in life, when many parents have no problem staying up until midnight or later waiting for their teens to return for the night, I am long since in bed before my daughter rolls in at night.

I have learned, when vacationing or doing fun things, that if I let my FOMO (fear of missing out) trump my sleep it ends in disaster. More often than not it’s a real bummer to choose between dedicating well over a third of each day to slumber or spend the time you didn’t spend in bed feeling like dog meat.

I have long envied people who thrive on 6, 7 or even 8 full hours of sleep, and wondered if there was some kind of secret element I was missing that prevented me from doing more with less in the rest department. I played with essential oils and supplements, both for rest and for daytime wakefulness and wasted hundreds of dollar. I used caffeine to offset the effects of my less than adequate time in bed and wound up jittery but still groggy. I have experimented with pillows and mattresses, trying to find the Holy Grail of comfort that would somehow make my sleep more efficient so that less would feel like more.

Nothing, absolutely nothing is a sufficient substitute for 8, 9 (or even more) solid hours in bed.

At the ripe old age of 44, after living this way for as long as I can remember, it stands to reason that it won’t change any time soon.

At the end of the day, high sleep need is a part of me. In order to care for myself, I need to honor that, and as an ongoing effort at self-compassion, acknowledging this as who I am and letting go of the notion that needing sleep is something I can or should fix has been a bit of a paradigm shift toward self-acceptance. One that is (as with most things in my life) long overdue.

My path toward self-compassion has meant recognizing the many ways that I am not a round peg in a world where pegs don’t work unless they are round. It means accepting where I don’t fit typical expectations, and refusing to frame that as any type of failure or inadequacy. It means that rather than finding ways around the ways that I am different or quirky, that I will respect who I am and how I am made, and accommodate my needs rather than suppress or ignore them. In other words, I’m finally doing for myself what I have naturally done for my children for years.

This is what it takes for me to thrive, and doggone it, I deserve to thrive.

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This is what it takes for me to thrive.

 

 

 

family · running

Everything I Need To Know About Fitness I Learned From My Mom

My mom started running in when she was in her 30’s, and became a fitness phenom before it was cool, especially for women. There was no Target, let alone an affordable fitness department, so in winter she would don her sweats with cotton tights underneath with an old stocking cap, a scarf and jacket and get out to run, no excuses, ever. She ran in freezing cold and blazing heat, wind, rain and ice. She ate “clean” long before it was even a thing, and pumped iron in the garage. I thought she was nuts at the time, but she left an impression. Her steadfast example went unheeded through my youth, but in my 20’s when I decided to get into a healthier lifestyle, I found I already knew what to do, I had to look no further than example she had set.

There were no gimmicks or secrets to her fitness routine. She never fell for a fad diet or nutrition drink. She just looked at her circumstances and added a huge heap of common sense, which is free for all to use.

  1. Eat real food, heavy on the fruits and veggies.
  2. Skip the artificial junk. Yes, it goes with #1, but it doesn’t go without saying. If it comes in a package, less is more.
  3. Portion size matters, don’t get carried away.
  4. Sit down and savor your food, you’ll be more satisfied with less.
  5. Pass on the alcohol. Maybe wine has benefits, but it has sugar too, save it for special occasions.
  6. Treats are treats. A little goes a long way.
  7. Play, it keeps you young.
  8. You won’t melt. Go outdoors in crummy weather.
  9. It’s okay to get dirty. People are washable.
  10. Heavy work is for women too, you get great muscle definition shoveling snow, push mowing the lawn and raking.
  11. Get outside your comfort zone. When my mom first started running my sisters giggled as she struggled to make it a quarter mile. When she finished first a 5k, then a 10k, and eventually a 25k, they could only cheer.
  12. Movement helps what ails you, especially when paired with fresh air.
  13. It’s supposed to be hard. If it was easy, everyone would do it.

It’s been almost 40 years since something clicked in her head and my mom decided to get fit, and she’s never looked back. When I see her playing tag with her grandkids and great-grandkids at the playground and swimming with them at the lake, my heart swells with gratitude for the health and strength she has maintained well into her 70’s. Not only has it served her well, she pays her health forward to her children and grandchildren and even her grandchildren’s children. She has passed down to us all a legacy of health and well-being that I am proud to carry on, and can only hope serves me as well as it has her.

 

running

Back to Basics, Back to Balance.

I’m getting back on the wagon. No, I am not on a diet. (Well, not really).

I have this pair of snow pants that are my “reel it in” gauge. I’ve had them for over 20 years, and while their primary purpose is insulation while playing outside, the serve me well as the canary which signals that things aren’t what they should be. I’ve taken to doing a serious wiggle dance to get them over my hiney, so that is my signal that it’s time to eat less and move more.

My presumption is that it’s far easier to lose 10lbs, (even if it’s the same 10lbs that I have gained and lost umpteen times) than it is to let it go any further.

The first thing I do is start a food log and get a handle on portion size.

Because I love to eat.

It’s not easy to calorie count when 90% of your food is made from scratch, but at least I know I’m in range.

Next step is moving more. I’m not exactly sedentary, but let’s just say that writing isn’t an aerobic workout. But, my knee and my thyroid are back in shape, which removes my limitations.

There have been a few times in my life when I have been strong, healthy and fit. Though I know that as I age regaining and retaining that level of fitness will get ever more difficult, I will get as close to this as possible.

It might sound like I’m getting carried away, it might sound like vanity, and sure there’s some of that, but that’s not all.

When I make time to exercise and eat right, it’s the best self care I know how to do. It improves my physical health, my emotional and mental health, and there’s enormous benefit to loving the way I look.

The Lee I like best is the one who comes in soaked with sweat and flying high on endorphins and endocannabinoids after running for an hour or two. She’s the one who is a better wife and mother and happier person. Probably because I treat her so well.

It’s all about balance, and my balance has been teetering, so here I go again.

marriage · parenting · special needs parenting

A Tribute To My Husband…

We are a case study of opposites attracting. He’s a headstrong doer, I’m a heart-strong be-er. He takes conflict with his daily coffee, whereas I will go to the end of the world to avoid hurt feelings. He’s decisive, I procrastinate. He talks on the phone and connects with people, I text and keep to myself.

Yet somehow it works. We’ve been married almost 23 years now, and though it took us awhile, we figured out a thing or two along the way. I have to say, we do all right.

When the neonatologist told us our son appeared to have Down syndrome, it was him who took the lead, accepting the diagnosis and plunging ahead. I might have floated adrift for quite some time, but Mike rallied immediately, then threw me a lifeline and reeled me in.

We often have tough decisions to make, and when I waffle he’s strong. When I procrastinate he pushes. When I get bogged down in my feelings, he’s pragmatic. When frustration gets the best of me, he’s diplomatic. When I demure, he asserts. When I feel, he thinks.

I’m pretty sure people envision me in the driver’s seat in our complex family, and I don’t think that’s wrong, but if I’m the driver, he’s the engine. One of us wouldn’t get anywhere without the other.

I don’t know how much I actually pause to appreciate my husband. Certainly not enough. In case I haven’t said it lately, I notice you. I appreciate you. I value you for who you are and for all you do. I can’t imagine living this life and parenting this crew without you right here with me for every little detail. In the midst of it, you make me a better me. You call me out when I’m off-base, you challenge me to improve myself, but you love me exactly where I am. I know you didn’t ask for this crazy life, but you have stepped into it and mastered it. I love you completely. And just in case I forgot to tell you, thank you. You are a treasure.