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.

IMG_20180412_121427679

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.

adoption · Down syndrome · special needs parenting

The Next Step in Pro-Life

This weekend marks the 45th anniversary of the landmark Roe v. Wade decision which legalized abortion nationally. I am not even going to attempt to discuss the law, rather, I’d like to examine the next step.

What happens after birth?

What happens when children are born with disabilities, and in an instant a parent becomes a caregiver?

What happens when a parent gets addicted to opioids or dies of an overdose?

What happens when parents hurt their children because of human frailty, or neglect, or substance abuse?

What happens when children have enormous medical challenges?

What about services and support for people living with mental illness?

And so much more.

Wouldn’t robust support of families caring for children with exceptional needs be pro-life? Would women be less likely to terminate a pregnancy with a child who has a prenatal diagnosis of disability if they knew that access to everything their child would need to thrive would be available and affordable?

Wouldn’t it be pro-life to fund research and resolution for opioid addition? And while we’re at it, there are record numbers of children in foster care at present, in large part related to opioid addition, being a foster parent is, in my humble opinion, the most stunningly beautiful example of pro-life imaginable.

Do you get what I’m saying here?

There are dozens of ways to embody a full-circle, lifelong pro-life stance without even bringing abortion into the conversation.

But it’s hard.

It’s easy to talk about changing a single law, and to carefully hand select politicians who have a certain box checked on their platform. But if that’s your stance, can you answer what should happen after the children are born?

Adoption.

But wait, is it right to separate a child from their ancestry for life? Biology is enormously important, and while infant adoption is sometimes necessary, far too often it’s a lifelong solution to a short term problem when better solutions for both the child and parents are available.

I don’t claim to have answers, in fact, it’s the questions that overwhelm me.

But as a person who has spent my adult life focused on the children who are already born, the ones with disabilities, the ones whose parents are addicted, the ones who have been orphaned, the ones with mental illness, the ones with so little support. I have come to believe that if everyone who made sure that they voted for the pro-life candidate took a step or two to care for the children once they’re born that it would transform everything. We have the ability and the obligation to fill in those vast gaps for the children who are already born.

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.

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 armband 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 me 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.  Those days when it’s a near miss, they blow my confidence, but generally leave me intact if not 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.

special needs parenting

Letting Go of Hope Was the Best Thing I Ever Did

It happened after leukemia treatment ended.  I had spent over three years during treatment waiting for everything to get better, and then it didn’t.  I gave it time, it still didn’t.  I gave it more time.  You get the picture.

Since bringing Ben home, I had consistently set my sights on the next hill, just knowing that once we got past that next hill the downhill roll would begin, and his quality of life would dramatically improve.

And so would the rest of ours.

It happened over and over and over.  Sometimes things would get better, but it never lasts.  And you know what they say about hope deferred.  I lived for years with the heart sickness of deferred hope.

Until I let it go.

Don’t get me wrong.  We’re still diligently pursuing every avenue possible to give Ben the fullest, best life possible.  I’m just realistic that he has a complex, convoluted situation, and that we need to live our best lives in the present rather than chasing an elusive dream of an idyllic, or even normalish, future.

In so doing, I have avoided the devastating crash of the next wave coming, because instead of stubbornly believing that it isn’t coming, I’m dutifully preparing and watching for it.  Instead of constantly setting my sights to an unlikely future, I’m living today and working to make it the best today possible.

By being realistic that each day and the foreseeable future will be just as challenging for him, I can manage our resources to make sure each day is the best we can make it with the challenges instead of wishful thinking of coming days without challenges.

Letting go of that wishful thinking nearly crushed me.  I so want for my boy to be happy and healthy in every possible way, and admitting that the next breakthrough wouldn’t necessarily make that happen was a paradigm shift of epic proportions.  It left me learning a whole new way of coping with life with the complexities of my child’s needs, but I did learn.  I learned to be more steady and cautious with my energy and optimism, and to live fully, focusing on each day and giving it my best in the moment.

And though letting go of hope comes with a certain sadness, it also comes with freedom and peace.

advocacy · special needs parenting

5 Myths About Medicaid that I No Longer Believe

Tomorrow morning a social worker is coming to our house so we can formulate Ben’s plan of care for the Children’s Waiver Program.  This is a day I have waited, hoped, and fought for for years.

I’m going through the motions, cleaning the toilet, vacuuming the floor, and closing the shower curtain because the social worker had no business in my shower anyway.  All the while I’m fully anticipating a disastrous event just as she pulls into the driveway that will leave me mortified, and last, but not least, I’m noticing a fishy smell in the house that I can’t track down for the life of me.

I finished the pre-approved paperwork to enroll Ben in Medicaid this evening, and in so doing, I’m busting some of my own myths about Medicaid.

  1. I always believed that help for people in need or with disabilities was best rendered privately, by charities and churches.  But this report shows how absurd that notion is.
  2. I always believed that Medicaid was for able bodied people who chose not to work, but it actually grants coverage to many elderly people, children, and people with disabilities.
  3. I always believed that Medicaid was just medical insurance.  However, Medicaid covers many programs and supports for disabled people that medical insurance doesn’t.
  4. I always believed that Medicaid was wasteful and exorbitant, but Medicaid is actually pretty thrifty for a government program.
  5. I always thought I would be ashamed to receive government assistance for my family.  I’m actually relieved.  By getting these supports, Ben will be able to remain in our home, something we have doubted many times because his care is so complex.  Seeing as how in the recent past, most people with disabilities lived in institutions from a very young age, I see keeping people with disabilities in the home and the community as a wise investment that is worthy of taxpayer support, and they have the right, granted by SCOTUS, to do so. 

I don’t know the details about the BCRA (nobody does), but I do know that cuts to Medicaid would weaken the supports that keep people with disabilities in the our country safe and healthy in their homes.  I consider this a worthy and valuable use of public funds.  I recognize that the ACA has many issues and needs reworking, but we must protect Medicaid, and the people who need it.

Now I’m off track down and eliminate that fishy smell.

advocacy · parenting · politics · special needs parenting

Why Is Medicaid Such A Big Deal for People With Disabilities?

When people think of Medicaid, they think medical insurance.  Medicaid is insurance, which is important, to be sure, but it is also is so much more.

My husband works for the state, he has a good healthcare policy, so while medical expenses do add up, we have a safety net to ensure that we won’t have to succumb to the financial strain of medical bills.  Even so, I fought a huge battle to get Ben onto the Children’s Waiver program so that he could get Medicaid benefits even though our income (my husband is in law enforcement, and I make a little money here and there with writing, so we aren’t exactly rolling in it) is above the threshold for our disabled children to receive Medicaid.  Here is a list of things that Medicaid provides that we couldn’t provide in another fashion or which has been burdensome to provide.

  • Respite.  We have had friends occasionally volunteer to care for Ben, and my mom helps out as much as she can, but that said, in order to have regular breaks from caregiving, we would need to pay an adult caregiver at least $15/hour (that’s on the stingy end of the spectrum), if not more to care for Ben.  Why?  Because he’s catheterized for urine, has bowel flushes, gets meds 3x/day, and has violent outbursts that require cautious intervention.  Respite means that we can have a professional caregiver who is equipped to do those things and we can give much needed attention to our other children, and just get time to collect ourselves so that we can continue to give high level care.
  • Community Living Supports.  I have written about taking Ben out in public, it’s a crapshoot at best.  It is guaranteed that he will have minor issues, such as running off or taking things off store shelves, but there are times, about 50/50 that things are trickier and the interventions for such behaviors result in a major meltdown.  Community Living Supports will provide a trained person to help Ben learn to cope with going out and all that it entails, giving him a fuller life where he will be less isolated, especially if his behavior improves and we can take him on family outings.
  • Autism benefits.  ABA therapy, which will also help minimize Ben’s negative behaviors and maximize positives.
  • Medical copay/deductible coverage.  As I have said, we have good medical insurance, but every single year Ben maxes out his copays, deductibles, and out of network costs.  It’s thousands of dollars.  Anyone who has a typical family knows what it’s like to have a major surgery, hospitalization, or ER bill suck your savings dry.  For us, even though we plan on it, and max out our flexible spending account, we still also have enough expenses, over and above what we have set aside in our flex spend, to be a budget buster.  Every, single, year.
  • Incontinence supplies.  Ben is incontinent of bowel and bladder.  Even though we catheterize him, and flush his bowel, his incontinence is severe enough that he must wear briefs in order to avoid soiling his clothing.  This is another budget buster, and another item that Medicaid will furnish for him.
  • Psychiatric care and counseling.  As well as other mental health benefits.

This is what will benefit us.  It’s no small list.  Additionally, Medicaid pays for school therapies, and many more services that will help Ben transition to adulthood with the supports he needs.

While we have always just used Children’s Special Healthcare Services, which covers some, but not even close to all, of Ben’s medical expenses, and paid the rest, it will be an enormous relief and benefit to alleviate that financial strain and hopefully have a savings account that won’t take constant hits.  But that’s just the icing on the cake.  What we really need is the wraparound supports that Medicaid, and Medicaid alone, can provide.  It will benefit every member of our family, and maybe, just maybe, we’ll be able to breathe again.  I wonder if we remember how…