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

6 Ways to Keep Your Sanity When Your Kid is a Handful

Alex is a bit of a handful, Ben is both hands overflowing. There are still many days when I'm about to tumble right off the deep end, but I do have a few sanity savers that keep me just this side of the brink.

  1. Locks and gates. I keep areas of my house cordoned off and keep the kids in the house. This means I can shower, drink my coffee and just function as a human being. It doesn't make things easy, but it keeps my kids safe. We literally lock the kids in the house. Elopement is real and it's terrifying. I found Alex about a mile away one morning when I got up. Keeping the kids in the house means they're reasonably safe.
  2. I have a mom clan. Not that I ever get to see them because their lives are just as zany as ours, but I can hop on social media and find the women who get it and know that no matter how ridiculous my life looks, they will never second guess or judge.
  3. I exercise. Without my runs I would completely lose my mind. I don't know if it's the runner's high or just the mental organization that comes from movement and nature, but man alive I need my runs.
  4. I've learned to let it go. Whether it's the frustration or upset over my own mistakes or the latest meltdown from the kids, I pretend I am putting a leaf into a stream and watch it float away. Sometimes I have to release it a few times before it goes away completely, but thankfully my stream can handle as many leaves as I need to place in it (and occasional logs too).
  5. I cultivate meaningful activities at home. I get great satisfaction out of cooking and baking and gardening, all of which I can do in those precious minutes when my kids are entertaining themselves. (With help from the door locks so I can turn my back for a few minutes). Being creative and having meaningful activities when I feel stuck at home reminds me of my own identity and value aside from just being the mom.
  6. Live in the moment. Rehashing the crap and worrying about what might be coming will rob you of your joy. It's easier said than done, but so worthwhile! The leaf in a stream works for worries too. You don't have to get mired in what ifs and should haves!

This is my list, but it isn't the only list. Everyone is different so these may or may not work for you.

I would love to say "take a break" or "take time for self care", but I know there are far too many days that those are impossible. In fact if it wasn't for having a husband who is just as committed to exercise as me I'm sure that would fall by the wayside as well.

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 arm band 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 my 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.  Thoses days when it’s a near miss, they blow my confidence, but generally leave me 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. 

parenting · special needs parenting

When You Can Never Win The High Stakes Game

It’s a high stakes game, this parenting gig. We have precious little folks that we’re responsible for turning into responsible adults, and there’s no single right way to do it.  With all of the factors going into human nature and nurture, getting it right for each child seems to be a crap shoot at best.

Then we add in developmental differences and the learning curve steepens, necessitating therapies and strategies that typical parents never have to consider. Or even the odd combination of phases that occur when cognitive development is delayed. For example, Alex is 15 years old, and is mature and savvy about many things, but has just discovered lying. You know that clumsy way your first grader lies to cover for his transgressions?  We’re right there with a 15 year old.   It’s just as annoying as when a six year old gives it a whirl, but all the more ridiculous with Alex’s man-voice. Just chalk this up to another parenting issue I never saw coming.

Overall Alex is easy though. He’s pretty straightforward, and super fun and funny. His quirks just add a little dynamic to the game.

Then there’s the truly complex child.

I took Ben to a new psychiatrist last week and she was stymied. She called him bossy, challenging, severely hyperactive and puzzling. And that was only a snapshot from 30 minutes in her office. Maybe it was the complete meltdown that resulted when she told us to go, then called us back into her office that bemused her. Or it could have been him splaying full out on the floor of the waiting room when our exit was delayed. Or any of the couple dozen uncomfortable interactions in between.

In this high stakes game I don’t know how to win. My child leaves experts at a loss.

I know he needs me to stay calm, but sometimes I lose my cool.

I know he needs structure and routine, but how do you stick to it with appointments and phone calls and all the necessary behavioral interventions?

I want more than anything in the world to do the best and be the best for him, but I swear it’s like being an actor and switching from “The Jungle Book” to “Rain Man” with “What’s Eating Gilbert Grape” running constantly in the background.  All along I feel like I should be Mary Poppins.

I can’t keep up. 

I can’t switch gears fast enough. I have a hard time hugging when I just got kicked in the face…even though I realize he needs it. I have a hard time playing after recovering from an epic public (or private) meltdown. And that’s not even taking into account the learning and medical needs.

How do I keep up, let alone maintain the therapeutic environment he needs to thrive.

When I write it out I realize how impossible it is, yet I sink into an abyss of guilt when I fail to be absolutely everything he needs, plus parenting my other children.

This is no attempt to garner kudos or warm fuzzies, there is nothing anyone can say that can change the truth.  The kind words are nice, but it doesn’t change our reality.

 

Yet we carry on, ever moving forward, and keep trying, trying, trying.  He’s our baby.  How can we not?  How can we ever stop trying?

Someday, maybe, we’ll find someone who can really help.  Each day we get up resolving just that.

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…

advocacy · parenting · special needs parenting

Something Has Got To Give

Every once in awhile, when scrolling through Facebook, I see something that drops my heart into my stomach. Today, it was an article about a murder-suicide.  The victim was Grant, a young man with CP who was nonverbal and wheelchair bound. The co-victim was his father. A school principal, and special needs advocate. The theory is that the strain of caregiving caused the father to snap. 

I pass no judgement on him.*

The strain of caregiving is colossal.  Love is not enough when days and weeks of being overextended turn into years and decades.  And even more so, the heartbreak of seeing your child suffer.  When Ben is having a bad day the heartbreak of enduring it with him is immense.  Some days it’s easy to sink into the abyss of wondering how long it will last; to blame yourself for the circumstances, and to succumb to the inescapable feeling of your child’s struggle. 

Especially when help is almost impossible to access. 

Caregiver fatigue or burnout is a serious concern for parents of children with disabilities, yet if you Google the term, you find resources from the AARP, ALS, Alzheimer’s and dementia sites, etc.  In other words, caregivers are identified as caring for the elderly, not for their children. 

Furthermore, articles place the impetus for resolution for caregiver stress square on the head of the caregiver herself.  Yep, not only do parents have few resources for respite and help, but when we’re overextended in caring for our beloved children, we have to rescue our own selves, as if we wouldn’t have done that in the first place if there were reasonably accessible ways to do so. Getting respite for a child with complex medical, developmental or behavioral needs is outrageously complicated, and if you happen to be above a very low income threshold (just above poverty level), there’s zero help whatsoever in getting it.  And as for hiring a “mother’s helper”, I’m pretty sure no mom on the planet wants their precious tween to be hanging out here when Ben smashes a plate, breaks my glasses or damages my wedding ring (all of which have occurred within the past 24 hours).  

Let’s be realistic here!  Parents of complex kiddos, even those who have decent support systems, are barely keeping afloat, and some just plain aren’t. We’re falling between the cracks because there aren’t that many of us and because we’re too damned busy caring for our children to get the help we need. 

The point of all this?  As a full time caregiver, and acquaintance with many others who are in similar shoes, I’m asking you to stand in the gap for us. Call your state and national politicians, and ask them to make access to respite and wraparound services easier for parents of children with serious disabilities.  Or, just sign this petition

We have to do better. For the children and the parents. 

*Please know that I don’t think murder-suicide is ever okay, and I certainly never want to see it happen under any circumstances. I’m simply saying that humans can only endure so much before snapping. 

parenting · special needs parenting · Uncategorized

“Should Have Aborted” (said the troll)

While I don’t want to give any undue attention to a troll, a rotten comment on one of my posts seems like an opportunity to examine the notion that we “should have aborted”. 

Abortion was never an option for me. I don’t suppose that surprises any readers. From the moment I knew I was pregnant I delighted in my children, and spent days fascinated by the magic occurring within me and the outside changes to my body. 

I didn’t suspect that my children would be born with a disability, and naively I just decided that I would love them no matter what, and declined any and all testing. 

When Alex was born and we were told he likely had Down syndrome (the testing takes several days to return, but we had accepted the diagnosis before it was confirmed), we were taken aback. I wondered if my husband would still want to bestow his grandfather’s name upon our son (he did), I wondered if our marriage would survive (it did, and I have since learned that parents who have kids with Down syndrome have a lower rate of divorce than average). There were many more questions and doubts both immediately and over the following years. 

Even though sometimes it’s tricky and tiring, I have never, even for the briefest moment, wondered if we should have aborted. 

If we had aborted we would have missed out on the sweetest boofy baby hair and the best smiles ever. 

If we had aborted, we would have missed out on so much joy, laughter, and fun. 

If we had aborted we might have missed out on a more unconditional love than we have ever witnessed elsewhere. 

If we had aborted we would have missed the best hugs ever. 

If we had aborted we would have missed many milestones which were only sweetened by their late arrival. 

If we had aborted we never would have known that Down syndrome would change us so much that we would want another child who has it. 

In the end, I feel compassion for the person who would troll a parent of a child with a disability by saying they should have aborted. I’m thankful we were able to see Alex as a child, a treasured human being who has so much to offer in this world. 

Last, it’s hard to be offended when your heart is full, so you picked on the wrong mama, you troll, but I did report it because I don’t know who you might troll next, and if it’s someone in a rough patch, I hope to spare them the stress. 

Best wishes troll-man, I hope that some day your grinch heart manages to grow.