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.

advocacy · parenting · special needs parenting

7 Big Truths About Special Needs Parents

Every week or so my messenger app dings with a message from someone reaching out. Often it’s a question; someone looking for input or encouragement, asking advice or giving any of the above. Sometimes it’s a local friend, often strangers find me via Google or an article and seek me out.

No matter who it is or what the reasoning, I welcome it.

I’ve noticed a few things as well. Though I’m reluctant to generalize, there are some threads common to many of these families.

  1. We’re dedicated. Whether it’s helping a child with ADHD or dyslexia succeed in a general classroom, finding a niche for a child with Asperger’s (yes, I know it’s technically not called that anymore) who is gifted, making plans for a child with a complex medical diagnosis or finding the right fit for someone with a developmental disability; families are bound and determined to do right by their kids.
  2. The resources aren’t readily available. This many years after IDEA and ABLE, it’s still hard to find and create resources for people who need any services or aids outside the norm.
  3. We’re tired. We struggle to find child care or respite, we spend untold hours driving to and attending appointments and meetings, we often are years or even decades behind on sleep, and we’re often trying to brainstorm, troubleshoot and solve behaviors.
  4. We’re broke. Between copays, deductibles, and gas, our money flies out of the bank account with extraordinary speed, and it’s not from being irresponsible. In fact we often feel guilty for small indulgences that many people take for granted because we know that the $2 we dropped on coffee is $2 less we can pay on bills.
  5. Despite all that we’re usually grateful. We realize that the services we can access for our kids are unprecidented, and though we struggle to make it all work, we do so gladly!
  6. We’re an unparalleled network. We find each other, we support each other, we advocate together and encourage each other. It’s a worldwide commune where people gladly share anything they have, eager to help one another out.
  7. We have a vision. It starts with our desire to make the world a better place for our children, and a recognition that our children make the world a better place. And we’ll go to the end of the world to bring it to fruition.

What would you add?

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.

special needs parenting

Joy is an Act of Resistance

Yesterday was a day that started out dicey and slid down the slippery slope to an urgent visit to a psychiatrist and social worker at the Community Mental Health office. Tears were shed, cuss words were uttered and there were some awful moments for every single family member.

In the morning we had discussed having a fire in the fire pit and eating dinner outside. Even after the kerfuffle that kept on escalating, we managed to have our fire.

It seems obvious that when your day completely derails to admit that it's simply derailed and hang it up.

But I don't believe it.

Our fire was a bold statement. A statement that screamed that the awful moments won't define us. That we refuse to surrender to the chaos. That we will continue to pursue joy no matter how elusive it is.

So we had our fire and we laughed and had s'mores and lived. At the end of a fractured, derailed day we came together and declared that we will continue to try. No matter what.

This isn't denial. We know how close we were to disaster, it's defiance. We will not let our derailed day define us.

It's resilience, the act of getting up again and again no matter how many times the rug is pulled from beneath us.

It's resistance, refusing to slide down the slippery slope into despair.

It's a way of communicating our determination to win the war even when we lose the battles.

It would have been easier for two exhausted parents to just throw the food on the kitchen table and claim every right to give up on the fun we had planned. It might have been the obvious choice, but we would have missed the fresh air, the communion and teamwork that happens when you enact a plan together.

We had our fire and it was good. We ended the day with a fresh cherry of joy and a dab of whipped cream on top of the sundae we had to pick up off the sidewalk.

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.  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.

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…