special needs parenting · Uncategorized

The Tension is Real

11693829_10206415035750999_2621410608674152410_nInclusion is a big deal.  Everyone wants their kid to be accepted into every setting possible.  Removing children with cognitive impairments from the general education environment sends a strong message that they don’t belong with the rest of society, and cannot hack it in an environment that doesn’t cater specifically to them.  It also demonstrates to the general population that these children are, indeed, different, and should be treated as such.  It is a strong message that we send to everyone when we fail to include our children in the typical environment.

My boys are in self-contained classrooms for almost all of their educational time.

It’s not something that I take lightly.  When they were preschoolers, I had a “pie in the sky” ideal that they would be sitting in classrooms with their same grade peers, and have a 1:1 parapro, and would succeed.  They would be accepted by their peers, and would learn in the same environment as them.

But it just didn’t happen.

Alex gets frustrated in the gen ed environment, even with materials that are carefully adapted to his cognitive level, and teachers who demonstrate the best attitudes toward inclusion.  Every time we have tried to introduce Alex to the typical classroom environment, he recoils, shuts down, and we need to regroup and find that he learns and succeeds in the self-contained environment.

With Ben, we have hardly tried.  With Ben’s medical and developmental needs being so complex, and with excessive absences recorded each year, Ben has just landed in the self-contained classroom, where he flourishes.

This isn’t a popular decision in the Down syndrome community.

Many people insist that the same programming works for every child, and that inclusion is the programming that should be applied universally.  After taking a step back from that ideal, I have chosen my children’s programming to fit their actual needs, not a societal standard.  Yes, I know this has implications for employability, independence, and so much more that will continue throughout their lives.  My kids are learning, growing and flourishing in ways that they haven’t in the inclusive environment.  They have real, sincere friendships with students both within and outside of the self-contained environment, and with the rest of the school.  Just watch Alex walk into a choir concert, and see a crowd of young ladies descend upon him and whisk him off to hang out.

I hope to remove the stigma from the choice of anything other than inclusion, rather, encouraging parents to know their kids, work with their educators, and develop individualized plans for each student that promotes success and learning.  I want to drop a blanket approach to education, and remember that people’s needs are not so simple that a one size fits all approach will ever work, no matter how wonderful the approach sounds.  And I want parents to be guilt free about choosing something other than what their conferences and peers are insisting is the only way to educate their child.  It is difficult enough to ensure proper education for each student without the pressure to do something that your parenting experience and intuition tells you is not best for your child.

 

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To the doctor who told us to stop asking for answers 

Ben is on day 7 in the hospital. After spinning our wheels, the hospitalist is getting down to business and hunting for underlying causes, and we’re getting things accomplished. 

However, a new-to-us GI doctor saw him today, blithely pronounced his problem a hypersensitive gag reflex and told us to stop asking for tests because we weren’t going to find anything. I wasn’t here, which is probably a very good thing, but when I see him later, I will ask this doctor one thing:  “Would you have said that if he didn’t have Down syndrome?”

Thankfully most of our doctors have a healthy respect for Ben, his complex medical history, and us as his parents and primary advocates, but this doctor is not alone in his dismissive attitude.  I don’t expect a silver bullet at this point, nor do I hang my hope on a single test to provide Ben a life of improved health and wellbeing. But I do believe that there’s a puzzle which needs to be solved, and to the best of my ability I will ensure that we get there. 

I wonder, though, why a doctor thinks it’s okay for a child to have vomiting refractory to the best interventions that modern medicine has to offer and to recommend that we, his parents, just accept that as status quo.  I wonder why a child’s suffering means so little to him that he can dismiss it so readily, and and I wonder why he became a pediatric specialist if he doesn’t regard my son’s quality of life as important enough to for us to deserve answers and management. I am thankful this doctor is the exception.  

So, sir, I will continue to do everything in my power to help my child, regardless of what you think. 

special needs parenting · Uncategorized

A Tale Of Crappy Coffee (and other gross injustices)

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I am a coffee snob.  Not a latte or some kind of adulterated coffee, just a really good, smooth, rich cup of regular coffee, and it has to be fresh and hot.  My keurig is probably my favorite earthly possession (although it’s in fierce competition with my bed). I use the refillable pod, because landfills are gross, and my two cups a day are a treat of unquantifiable value.  From the second I sip my last drop I eagerly anticipate the next morning’s brew (of course after indulging in sleep in my luxurious bed).

So here I am, stuck in the hospital with my kid.  It’s not exactly a vacation here, the bed is torture, the shower is mediocre, and the cafeteria charged me $10 for soup and a salad (is this not the most outrageous thing ever?  I’m stuck here with my kid and a simple, healthy meal is exhorbidant).  But all of that I can abide.  At least my soup and salad were of good quality and nourishing, it’s the coffee that stirs my ire.

I’m sure that not everyone loves their coffee so much that they quote “Song of Solomon” to it in the morning, but I do.  I sometimes prepare the pod in the evening so that I can enjoy the aroma in anticipation of our morning love affair, a little java foreplay, if you will. But I’m not about to just drink it for my addiction, oh no.  I plan ahead, waiting for the optimal moment in which to sit down with my coffee and enjoy the intimacy of a girl and her brew.

So I’m away from home, from my luxiurious mattress, my husband, children and dog.  I’m sleeping on a medieval rack, paying out the nose for a light lunch, and cleaning up ungodly volumes of vomit.  I can live with all that, but I can’t live without decent coffee.

I don’t know who it is who decides how to vend coffee in children’s hospital, but sir or madam, if you happen upon this, please, consider the injustice of that Folger’s abomination in light of my plight.  I long to give good care to my sick child, with only one caveat; my coffee.

So now to decide how to launch my crusade.  Go Fund Me to fund ethically traded, real coffee in every children’s hospital in the U.S., or a Move On petition to mandate that hosptials provide it for us, or possibly just opening a kiosk on each floor here asking only good will offerings.

I am not yet sure how I will proceed, so stay tuned, this woman is on a mission.

writing

Memory Lane

When writing “Hope Deferred” I relived much of Ben’s tricky medical and developmental history. In my writing, I highlighted many of the people who crossed our paths during these 10 years and made an impact on our lives with kindness.  The simple, often brief interactions were powerful. During dark times, they were steadfast sources of light, and darkness cannot endure in the light.

Kindness is simple. It takes no special skill or education, it’s a basic human capacity. It costs absolutely nothing, and often benefits the giver as much as the recipient.
Ben is back in the hospital, and in the past few days a few of those everyday heroes have come back across our paths as we seem to have made our way full circle and are back in a place of unknown illness and the strain of navigating the diagnostic process.

I’ve told a couple of them about their roles in my book, in our lives. What they have meant to us as we traverse this strange land over and over. I didn’t anticipate this when I wrote about them, but my heart bursts with gratitude for the opportunity to tell my benefactors just how powerful their altruism was and is.

Kindness matters. Whether you’re the doctor, the teacher, the street sweeper or the code writer or the mom, going about your business being kinder than necessary matters. It’s important.

We’ve experienced tragedy these past few days and people are reeling. We’re wondering how to move forward in a world where a gifted and beautiful musician is killed while greeting fans, where people enjoying a night out are massacred, and where an alligator snatches a child and his parents are thrown under the bus by the masses. I don’t claim to know how to legislate gun violence or hate crimes, but I do know that love matters.  That caring more than necessary, smiling, stepping in to lend a hand, and just showing compassion makes a difference.  Compassion does indeed evaporate darkness.

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Rambling Rants


I beg your pardon from the get-go.  I’m sleep deprived and tired.  Bone tired. I’ve been spinning my wheels all weekend caring for a child who is too sick to accept my care. I hold his hand, he pushes me away, I rub his back, re recoils, I hold a basin to catch the vomit which has been reduced to stomach juices for 2 days and he bats the basin away.

I have been on the phone all morning with nurses, and get few answers. I spent the evening in the ER using trial and error to help him, and return home only to find the help was extremely short lived. Today I’m pulling out the stops to find help only to realize that our only prayer is that his body, an amazing self-righting machine, can find away to gain traction and achieve balance, and if it doesn’t, we resume trial and error.

I feel impotent facing his suffering, and so very angry that one human child must endure so much.

I am angry that modern medicine can produce marvels beyond our wildest imaginings, and still not grant my child relief.  I’m angry that the creative force behind the universe, the alpha and omega, the catalyst behind jellyfish, volcanoes, waterfalls and narwhals has allowed this child to fall through the gaps of all that is right and good in the world and bear so much suffering.   I am angry that my other children suffer alongside him, as do so many who love him.  I live in a state if cognitive dissonance over the injustice of it all.  I am angry that all the energy this lion mama can produce so often results in spinning my wheels, incompetent to be an agent of healing and wholeness for this child, no matter how hard I try.

For a moment he sleeps, and I pray, fruitlessly I fear, that the rest will restore him and that he will awaken refreshed, with his internal mechanism reset.
Conversely, I pray that if rest doesn’t restore that our doctors will dig deep, finding the root of the problems and long-term solutions for ultimate health and well-being.

I still hope, but I doubt.

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The Kalamazoo Bicycle Accident, You, and Me

Anyone who has known my family for half a minute knows we’re active.  From running, to riding our tandem recumbent bikes as a family to going for walks and regular bike rides, my family gets our fitness in, we do it outdoors, and often on the road.  We’re put there to add years to our lives and life to our years.


Many of the roads we run, bike and walk on have 55 mph speed limits.  We are alert and careful, we wear appropriately sized and secured bike helmet and bright clothing and reflectors or LED lights. I refuse to wear earbuds so I can clearly hear the traffic, but still we have had near misses. 

A group of cyclists was struck by a truck in Kalamazoo, Michigan, killing several, and severely injuring others.  These people who were out being active and fit lost their lives.  The devastation is unimaginable.   And while that isn’t about me, it is about the active community.

Many of us who are active have had our near misses.  The guy who pulled into my neighborhood and ran over the spot where I would have been had I not jumped off the street,  the numerous people who have flown by me at full speed within my arms reach, even when my children are cycling with me.

The point is that I, and everyone I know who street run and cycle have had near misses. 

So I am using the conversation surrounding the Kalamazoo accident to get the word out for my family and my running and cycling friends.

We’re vulnerable.  Even when we’re doing everything right, we face a risk every time we hit the pavement.

I ask all motorists, in these days after the most horrific car/bike accident in memory, to share the road.  Pay attention.  Put down your phones, drive sober, and watch out for us.  You will not only save our lives, but you will save yourself a lifetime of grief.  

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Fun New Gig

I recently submitted a blog post to Her View From Home.   This is a new community for me, and I am growing to love it.  The community is full of positivity and love, and real mom-ness. I’m pretty geeked about this opportunity, and would love it you would go over and check out my first post.  The post is about Hannah, my daughter.  She doesn’t get much press over here (although she gets a shout out here) because this is a writing and special needs, blog,  but she’s really something.  


Her View From Home can also be found on Facebook and Twitter, (and Pinterest if that’s your thing it’s not mine).