special needs parenting · The Year of Turning Eighteen series

The Year of Turning Eighteen (part 1)

Alex with his brand new braces

Next week Alex turns 17. In preparation, we have signed onto the legal plan with Mike’s employer, and are making big plans.

Why all the hullabaloo?

Because when a person turns 18, they are legally an adult and responsible for all of their own legal decisions. That includes financial, medical, educational, and everything else. When that person has an intellectual disability, the ability to make those decisions is different, meaning that we need to determine if and what type of a a safety net should be in place.

Alex can read at about a fourth grade level. He can do elementary math and use a calculator. His emotional development is also at an elementary stage, meaning that his impulse control, long-term planning, and ability to make decisions about housing, medical needs and even grocery shopping is about that of an average fourth grader. In Michigan he can attend school until he is 26-years-old, though we are not sure if he will attend for that long, he is still nowhere near high school graduation. We still have great opportunity to maximize all of those skills in school. Realistically, he will probably always need guidance for things like informed medical consent and legal decisions. To give a glimpse of what this looks like, Alex recently got braces. His orthodontist explained the process thoroughly, and we reinforced the explanations. When trying to eat dinner the first night with braces, Alex’s teeth were too painful to chew. His solution to the problem was to remove the braces. He knew that the orthodontist would have to do that, but he wanted to return first thing the next morning and be done with the whole ordeal. If he had legal decision making capacity and transportation, I have no doubt that he would have been on the doorstep of the orthodontist well before the office opened the next morning. While I don’t blame him and we all have those feelings, it’s also important to keep Alex safe from his immature decision making process.

Then there’s the obvious issue that he cannot drive.

Thus, before he turns 18, in 372 days, we must have a safety net in place. That safety net is in the form of either Power of Attorney or guardianship. We presently lean towards Power of Attorney for Alex, which gives him greater control and autonomy to him, but the decision is not yet final.

The first step is to get his full educational evaluation completed, which is in process. From there we contact an attorney who participates with our legal benefits and get guidance on the best way to move forward for all of us.

My hope is that by documenting our process we can help other families navigate, so this is where it begins.

grief · parenting

A Grief Observed

It’s been almost 2 months.

Living through child loss for 2 months feels simultaneously like no time at all and like an eternity.

I keep chasing the same thoughts around like a dust devil until it disappears. Then awhile later it blows back up and spins in circles until it gives up again. I never catch it. It never stops returning.

I go back in time reviewing all of the interactions. Could I change one and have a different outcome? After chasing them all down I only return even more unsure.

If I could just hug you, and shake you, then hug you again. I’d probably yell for good measure, then another hug.

But that’s not an option anymore.

I think I’m stuck in the anger stage of grief. Anger at you, anger at me, and especially at all the shit that happened to you; at the broken road you were put on, over which none of us had control.

My head knows there’s nothing I could have done, but my heart won’t let it go.

Maybe I should be looking forward to a heavenly reunion, but there’s too much bitter in that bittersweet thought.

I hope that the peace which always eluded you is now yours. That’s my only comfort.

I hope that the trauma that burdened you like a mountainous backpack has been cast off and into an endless abyss where it’s weight will never crush you again.

Is it too late to remind you that I love you, that you are worthy and deserving of love? Perhaps you know that now in a way that was impossible to grasp when you were here.

I miss you. I always will.

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 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.

parenting · special needs parenting

To My Husband On Father’s Day

That pair of slippers the kids and I are giving you for Father’s Day doesn’t seem adequate. If I was to give you a worthy gift to honor your parenting it would be something like a caribou hunt in the great white north. Since the hunt is currently out of reach, I hope the slippers suffice; for now anyway. 

When I consider what you do, day in and day out, I don’t know how I could ever honor you enough, but maybe just listing what you do in a day would be a good start.  

  • You get up with Ben during the night because he goes back to bed better for you. 
  • You give Ben his meds because he takes them better for you. 
  • You start Ben’s daily bowel flush because he complies better for you. (Is anyone noticing a trend here?)
  • You catheterize Ben because he prefers you to do it. 
  • You take the boys outside with you while you do odd jobs around the house. 
  • You notice when laundry or other cleaning gets backed up and take the time to do it. 
  • You maintain the house, constantly making improvements and adaptations for the boys. 
  • You make sure I have time to take care of myself and exercise. 
  • You take Hannah on a father/daughter fishing trip every year. 
  • You maintain our vehicles. 
  • You pinch hit for any of the tasks I normally handle including doctor appointments, school dealings, and driving the kids wherever they need to go. 
  • You show me daily how much you love me, and say it too. 
  • Oh, yeah, you work full-time too. 

There’s more, so much more that I actually take for granted because you just do it. People often tell me that they don’t know how I do it. The truth is that it’s a team effort, it’s us managing this complex life, not me. 

Today I want you to know how much I value you. I want to thank you for making sure we’re equally yoked because the weight is lighter for both of us when we share it. 

parenting · special needs parenting

If You Happened To See Us In The Store The Other Day

You might have wondered what on earth was going on.  We stopped briefly to get cupcakes for Alex to share with his friends at school for his birthday. I zipped up an aisle to get some flour to fry up some morels and Ben lost it. I wasn’t sure what the trigger was, but since we had what we needed, I hurried to the checkout lane and tried to distract Ben, which didn’t work. At all. 

I debated the best course of action and decided that Alex deserved the cupcakes I had promised him, come hell or highwater. 

I herded Ben over, hoping to contain him in the lane, but that didn’t work either. Ben kicked Alex, angering him, then lashed out at me. 

We managed to get our things paid for and tried to leave, but Ben froze. 

I wound up wrapping myself around him, hauling his 85 lb. thrashing frame across the full parking lot to the van, where Alex waited, having gone ahead. 

Ben’s meltdown lasted the 10 minute ride home, then a solid half hour (possibly longer) once we got home. 

I found out when we got home that Ben had spotted birthday cakes in the aisle with the flour and wanted to choose one for Alex. 

Had I known I would have just let him.  

If you’re wondering why I didn’t punish him, it’s because it doesn’t work. Did you happen to see the movie “Rainman”?  If so, maybe you’ll remember how upsetting it was to Rainman when Charlie got angry. It doesn’t work, it doesn’t help, it just escalates an already out of control situation. 

If you’re wondering why I didn’t just walk out, I knew when I walked in that there was a certain likelihood of Ben having a meltdown, it was a calculated risk, and I walked in prepared to follow through and get Alex’s birthday treat. 

If you’re wondering why and how I stayed calm, it’s from years of practice, and because “low and slow” is what keeps things from getting worse. I will admit that sometimes it’s harder than others to keep my cool, and that sometimes I don’t, but when possible, it helps. 

If you’re wondering if there was something you could have done, that’s a very good question. Maybe. Sometimes an unexpected occurrence, like a stranger stepping in, aborts the meltdown, but it’s equally possible that it could have escalated things. 

If you suspect that I’m a crappy parent, some days I am, and some days I’m a pretty stellar parent, and most days I’m fairly decent, just like most other parents. My parenting isn’t the cause of the meltdown though, those are a complex combination of factors that I only wish I could control. 

If you think he’s always like that, he isn’t. Ben is a complex and dynamic human being. Sometimes he has meltdowns, sometimes he’s so sweet he melts my heart, sometimes he’s feisty and funny, and there are oh, so many more adjectives could describe him. You saw a snapshot. Just like you can take a photograph of an attractive person that catches them in an ugly moment, you caught a rough moment in time. He does have those, but they don’t define him. 

If you feel sorry for him, us or me, please listen. Compassion and empathy for a challenging situation are welcome, but we don’t need pity.  We need acceptance and pity won’t get us there. We need to keep giving Ben opportunities to go out because the less he does it the harder it gets. So we’ll keep taking these chances and sometimes he’ll do okay, and others he’ll have meltdowns. For his benefit and everyone else’s, we’ll keep going out, because isolation isn’t an option. 

Here are some photos of Ben on happier days. And when you look at them I hope you see how worthy and treasured he is.