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.

parenting · special needs parenting

Some Middle School Girls Made Me Cry Today 

Alex’s choir went to the state choral festival today. I met them there and observed their stellar performance. But I observed so much more. 

I drove Alex there myself for a variety of reasons best summed up by saying that life is complicated and that was the simplest solution. As such we were early, because I’m always early, so we sat together in the foyer awaiting the arrival of his choir. When they entered, Alex hesitated, but his dear friend Maddie was at the front of the group and when she saw him standing there a smile lit her whole being (and as a stunningly beautiful and dynamic young woman, Maddie’s smile was something to behold) then she beckoned for him to join her, he glanced at me for approval, which I granted, and jetted over to join her. She clasped his hand as they took off with the group for warmups. 

This has been standard since Alex joined the choir. Maddie had participated in the LINKS program in elementary school, and every time I see her she exudes warmth and friendship toward Alex.  I’ve seen it before, but I never quite get over my sentimentality about it. 

Then, after their performance, they filed into the seating area of the auditorium. Alex was a bit confused about which direction to head, and I watched him from afar with anxiety building. In familiar areas Alex is independent and confident, but in this new territory he appeared uncertain and hesitant. I constantly waffle about how much support to offer since independence is our ultimate goal for him, but from where I sat there was nothing I could do anyway. I watched, wondering if he’d get frustrated or upset, but before I could even begin to fuss, another young lady took his hand and escorted him in the right direction.  Again, when it was time to go, she glanced toward him and took his hand to escort him in the right direction. Though I recognized her, I don’t even know her name.


As I observed, I couldn’t control the tears. 

All parents carry some degree of concern ofr fear over relinquishing control of their children in the world, but that universal emotion is magnified by disability. Alex is almost 15, but he’s as innocent as a first grader. He’s going into high school but he reads at a second grade level. He has a young man’s body, but the spirit of a boy.   He’s on a path toward independence, but it’s more meandering than average.  

As he navigates his way to maturity and independence, there are gaps along the way. Those gaps are worrisome to us as his parents, but today I saw his peers recognize and step into those gaps, of their own volition. 

And today I am encouraged that his path, though littered with hazards, is also sprinkled with helpers. Helpers for whom I am at a loss for words to express the gladness they bring to this mom’s soul. 

And I am grateful to the parents who teach and model for their children acceptance and inclusiveness, because their children are changing the world. 

parenting · special needs parenting

9 Ways that Alex Lives a Simple, Beautiful Life

Mike and I often wonder what goes on in Alex’s head (in a good way).  Alex very obviously experiences the world differently from the rest of us, and when I observe him, I wish I had a pair of goggles that would permit me to see things from his perspective. 
Lacking the capacity for that, I decided to intently watch and listen, to see if I could, perhaps, gain some insight. This is what I gleaned:

  1. People are the most important. Alex never takes his loved ones for granted. 
  2. He doesn’t interrupt. Ever. Maybe he’s simply more patient, but I suspect this goes back to #1. People matter to him so he wants to hear us out. 
  3. While he values his inner circle, he doesn’t allow the opinion of outsiders stop him from pursuing his passions or doing what he believes in his heart he must. 
  4. His word is his bond. He won’t tell you yes if he means no or maybe, his yes means yes, and his no means no. 
  5. He has a temper, but all it takes for him to get over it is a little giggle. He never, ever holds grudges. 
  6. Dancing and singing are a daily part of his life. If you happen to see him leaping, turning and two-stepping down the street, pay no mind, his walk has simply turned into a Disney parade. 
  7. The only thing he’s ashamed of is when he hurts others, which is always unintentional. 
  8. He has serious navigational skills. I think he got Hannah’s share. 
  9. Love wins, and he knows it. 

I tend to value philosophy, deep thinking and insight, and sometimes overlook simple wisdom. Thankfully I have a living reminder of what is really important and good in this world, because so often I forget. 

cancer · Childhood Cancer Awareness Month · parenting · running · special needs parenting · Uncategorized

Down Syndrome and Leukemia

When Alex was two years old, his pediatrician sat me down at a well child visit and outlined the symptoms of leukemia.  Why?  Because 2-3% of children with Down syndrome develop leukemia, and she wanted to be sure to catch it early if it occurred.

Though that was over 12 years ago, the memory still haunts me.

When Ben was diagnosed, we needed no reminders of the increased likelihood of leukemia in kids with Down syndrome.

You know what.  I’m struggling with this.  The words won’t come, the emotions are carefully guarded in a high tower with dragons and moats and drawbridges protecting them.  So here we go, stuffs about to get real.

Ben came home supposedly healthy.  It’s not that we insisted upon a healthy baby, but we were certainly pleased when the child with whom we were placed had no apparent health problems, because, hey, a healthy baby is a good thing.  That obviously went south pretty damn fast with hearing impairment, thyroid failure and Hirschsprung’s disease all thrown into his first year home with us.  But yeah, that’s okay, life comes with no guarantees.

Of course not, because once we got the congenital nonsense taken care of along came Cyclic Vomiting.  We had a good year ONE GOOD YEAR (during which my mother in law died and my husband and I both had major surgery), and poor Ben was body slammed with leukemia.

I literally don’t have words.

I wrote a whole book about Ben’s life so far.  I can document the crap out of all that he’s been through, but the emotions, what it actually was, there are no words.  NONE.

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The English language, rich and beautiful as it is, completely fails me when it comes to that day.

Moment by moment, I remember it so clearly, yet it’s a clustered mess of horror that I fail to untangle.

And every year almost 16,000 families live that day.

And some live an even worse day, they day their child succumbs to cancer.

By numbers it’s still over 10% of children diagnosed with cancer who die of it.  That’s almost 2000 children a year.  Numbers don’t tell the story though.  Not even close.

I wish, I wish I had some way to express to you the hell of that day.  The hell that extended for over three years of treatment.  The hell that cost Ben his ability to empty his bladder on demand, that cost him IQ points.  During treatment Ben over seven months of his life on steroids.  Steroids make Ben psychotic.  Raging, out of control, sleepless, psychotic.  In fact, after his most recent surgery, when he mistakenly got a dose, the anesthesiologist considered his reaction so severe that she recommended listing steroids as an allergy because her professional opinion was that one dose severely jeopardized his health.  He had over 200 doses during cancer treatment.

There is more, so much more.  My child, my baby, has endured far more than most people do in a lifetime, and he’s only ten.

Childhood cancer is hideous, vulgar, horrifying.  Don’t ever let a sweet photograph of a smiling bald child fool you, they are enduring hell, nothing less.

So far in September, I have walked/run 46 miles for Alex’s Million Mile March.  Would you please consider donating to this event, and help me work toward ending childhood cancer hell?

Uncategorized · writing

Random Acts of Kindness, or a Lifestyle of Compassion?

 

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People love random acts of kindness.  The infamous Starbucks pay it forward, or filling an expired parking meter and leaving a note.  Those are great, but might I suggest there should be more to it?

Despite the trend of RAK’s, people are still ornery, selfish, and in too much of a hurry to give a rip about anyone.  All you have to do is drive down a highway to find out how mean-spirited humans are on a daily basis. It’s obvious to me that RAK’s are merely a tip of the iceberg.

(Funny story, while driving down the road we were cut off by a young woman who was racing in and out of lanes.  A few minutes later, we passed her, and when we looked over she was flipping the bird.  Alex saw her and smiled and waved.  The look on her face…)

When writing out my first draft of my memoir, tentatively titled, “Hope Deferred” one of the themes that stood out is that there are people making differences that go beyond RAK’s.  People for whom stepping into the gap is part of their DNA.  One of the first people to come to mind is a local teacher named Martha.  Martha is a living legend, a special education goddess.  To know Martha is to be blessed, she exudes altruism from every pore of her body.

Or Jeff the radiology PA at our local children’s hospital.  Jeff’s presence has been woven throughout Ben’s medical history, and he has always been a source of goodness and light.  Not only is he exceptional at his job, his inner compass is such that in doing his work he impacts the lives of children who are hurting and their families by going above and beyond his job title, with kind-heartedness and compassion.

I think of Mike’s lifelong best friend who didn’t blink an eye when Mike called him late at night to say we were stranded in Chicago, 3 hours away while on our way home after adopting Ben.  Marty hopped in his car and drove into the night, 6 hours round trip and acted like it was nothing.

I think that RAK movement can often miss the mark.  While coffee is darn important, can we admit that paying forward the cost of a Starbucks is the tiniest drop in the feel good bucket? I tend to wonder if we’re deceiving ourselves into believing we’re do-gooders, when we’re really just treating a stranger, whose face we will never see to a cup of overpriced coffee.  It’s a quick dopamine burst in the brain, but the true impact is a wash.

When I worked as an advocate for children in foster care, I went into churches to ask them to help us find homes for children waiting to be adopted.  Often the churches would let me speak on behalf of the waiting children.  Not to toot my own horn, but I had it dialed in.  I would see people dabbing tears from their eyes in every pew, and that pastor would often choke up after my talk.  Yet, when the rubber met the road, more often than not everyone exited the sanctuary went home to their Sunday dinner and nap, and rationalized why they weren’t the ones to step into that gap.

Some of the children I advocated for 3 years ago are still waiting for adoption. 

What I am asking is this:  What step can you take today to make a difference?

Decide.  Commit.  Be like Martha, like Jeff, like Marty.  Make a real difference.

running · special needs parenting · Uncategorized

A Product Review, Clif Bloks

bloks-blackcherry

My husband likes Clif Bloks, so at my last trip to the running store, I picked up several packages in different options for him.  For this review, I will be specifically referencing the Black Cherry Chews.

Upon my arrival at home, dear Ben grabbed the bag and upon seeing “candy” in the bag, he distrubuted one pack to Alex, and kept one for himself.  The pack he gave to Alex was Black Cherry with +50mg caffiene.  My husband and I were looking through our race packets for the race the next day (which was the Lake Michigan RTS, a great race), and we didn’t notice that Ben had brought the Clif Bloks to Alex until Alex had decimated the package.

Alex is sedentary, to a fault, so imagine our alarm when we asked him to get Hannah for supper and he hopped up, and bounced on both feet like a bunny all the way through the house, down and then up the stairs, and continued hopping until he sat down to eat.  We took him out for a walk/jog after dinner, to burn off the buzz, and low and behold, he won the race to the finish, and resumed hopping around the house. He bounced and giggled, and fidgeted and ran like there was no tomorrow.  I have not seen the likes of this before or since.

Therefore, I give this product 5 out of 5 stars.  If a simple chew can get my lazy bones kid hopping around like a bunny on steroids, then I consider it premium product.

Uncategorized

Confessions of a Forty-Something Pokémon Addict. 

All of a sudden it happened. I think I should blame Jenifer, who introduced Alex to it. Or something. Someone has to be held responsible.  For this:


I stopped my run today to watch him hatch. 

And speaking of my run, I kept my app open to get mileage. Except I didn’t do it right and didn’t get full credit. If it wasn’t for the blasted heat and humidity I probably would have run all afternoon just to level up. 

I’ll be just minding my own business and think, “Hmmm, I wonder if there are any critters nearby”, (I’m obviously not up on the lingo) and just often enough something like this guy is in my petunias.  It’s that intermittent positive reinforcement that has me hooked. 


And I don’t even know what it all means except that the bugger tried to escape, and that he looks cool, so I took him down. He’s mine now!  Yeah, take that Zubat thingy. 

Now every outing (not that I get out much as an introverted special needs mom) is an occasion to find PokéStops and get more Poké Balls as preventing a tragedy like this from recurring is crucial. 


I am fully aware of the ridiculousness, in fact I hide it from my husband. He thinks that Pokémon Go is for uncivilized morons who are next up for the Darwin Awards. (I have no idea where he got that impression). 

Thankfully Alex is my cover, after all this is all for him.  No, really, it is.