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.

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.