Down syndrome · parenting · special needs parenting

Making Peace With Our Question Mark

When you have a child, they say your heart walks around outside your body, and I couldn’t agree more. All of the hopes and dreams of another person somehow mean as much to me as my own ever have.

We tend to think we will know what parenthood looks like going in. It starts with midnight feeds and changing diapers and blossoms into milestones. Before you know it there’s an independent human being making decisions and taking on the world. Supposedly, if you do a halfway decent job of it, the child becomes successful and lives a good life. But the reality is seldom so cut and dried.

When you have a baby with a developmental disability, you get advance notice that children don’t come with a recipe, guaranteed to come out as expected as long as you follow the directions properly. You know how it’s supposed to go: play sports, do well in school, go to a good college, find a wonderful spouse and enter a great career. Ensure good values and belief system of your leaning. Stick a toothpick in it to ensure it’s baked through and voila!

The recipe is punctuated with random question marks, some more than others, but we don’t understand them, don’t like them, and do our best to ignore them or stomp them into the ground.

Our son Alex is 16 now (hokey Pete, how did that happen?) and we aren’t sure if or how or when college or trade school will happen. He has career aspirations, and we work together with his school team to make step by step goals towards them. He is thoughtful and tender hearted, so we hope for him to find true love. Independence is still millions of baby steps away, and not a clear picture yet.

The recipe card most people cling to is the length of a novel for us, with many revisions and impromptu modifications. Our question marks are neither random nor infrequent. They started immediately and they’re everywhere. Early on we looked question marks straight in the eyes, then made it a full partner in the effort instead of something we try to avoid or ignore. We embrace the questions because we recognize that nothing is given or assumed for anyone, but especially so when parenting children who are not neurotypical.

Once you acknowledge the question mark, you can make peace with it, not only on behalf of your child, but in general. There’s a certain comfort in saying aloud that results are not always proportional to the effort and plans , no matter how brilliantly derived, unravel here and there. Once it’s on the table, the question mark isn’t so terrifying anymore, and it frees you up to focus on the process without clinging so desperately to results.

In so doing we find the magic in the process. And oh boy do we know about magic around here.

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.

cancer · parenting · special needs parenting

High Need Parenting and The Hierarchy of Needs

maslowpyramid

My thought train runs wild from time to time, and today I puzzled over the hierarchy of needs, developed by Maslow, which I learned about in high school psychology.  My thoughts were more like pop ups, the biggest conundrum being about how people like me, who care for children whose needs often trump our own, can pursue personal development and self-care, and the obstacles we must overcome in so doing.  Yet, many of the parents whose children have complex developmental and/or medical needs are some of the most self-actualized people I have the privilege of knowing.

How is this so?

According to the diagram, we should be stuck in the lower levels, with concerns about such things as sleep, safety and health being all we have energy to pursue.  Often, we become isolated, missing out on a sense of love and belonging, but yet, despite the obvious deficits in the lower levels, many of us are diligent about exercise, healthy diet, self-care, and are actively engaged in self-esteem and self-actualization levels.

It doesn’t make sense.

When you lack sleep, fear for the well-being of a family member, and struggle with employment and socialization because of your life situation, how do you focus on confidence, acheivement, morality, creativity, and inner potential?

Yet people are doing it.  Many of us.

Are we an exception to the rule, or does a certain amount of moderate, ongoing crisis lend itself to a resilience and persistence that promotes self-development?

I believe the latter.

This is all based on subjective observation, anecdotal evidence, if you will, which is essentially bunk in the scientific world.  Yet, I’m inclined to believe that we’ve entered a new evolutionary stage.  We have, in just the last hundred or so years, advanced to the point where we can keep children born with significant medical diagnoses alive for longer than we ever have before.  We are a new breed of parents in the grand scheme of things, parents that history and psychology has not had significant time to study and understand.

And I wonder if there is something about complex medical or developmental parenting that brings out the best in people.

If you met me friends who parent these children, I am certain you would agree.

 

 

 

parenting · special needs parenting

The Incredible Depth and Breadth of Our Village

This week my mom gave us respite by taking Ben. My husband and I planned and brainstormed over challenges, I fielded phone calls from a couple of different specialists, we brought Ben to get blood drawn twice, and will do so again before the week is out, I’ve emailed and met with teachers while my husband held down the home front, I’ve touched base with bus drivers and aids, and I’m sure I’ve forgotten a bit.

The phrase, “it takes a village” is never more true than when special needs are involved, and the more complex the special needs, the greater the depth and breadth of the village.

I paused this afternoon, astounded by our incredible village.  From the ladies in the Facebook groups and family group texts; to the vast number of specialists, medical assistants, nurses, pharmacists and techs that tend to Ben’s intricate physical frailties; to the teachers, parapros and administrators at the schools and the bus staff that get them there; and so very much more.  We have a complex web of people who come together to meet the needs of our children from moment to moment, every single day of our lives.

This afternoon it hit me, I caught a glimpse of how lost we would be without this village of people who contribute their wisdom, their learning, their compassion, their strength, their skill, their education, their love, and so very much more, to us.  And I am humbled.

The enormity of my gratitude is beyond any words I could type. I’m dumbfounded with the gravity of our dependence upon those who have become our village, our people, and ever so thankful for each and every one of you.

 

 

Uncategorized

Reflections on Development From 13 Years in

My son Alex was born with Down syndrome. We nearly lost him at birth, so it didn’t take us long to get perspective on the Down syndrome diagnosis because, after all, we had our baby. Down syndrome seemed like a piece of cake next to grieving a lost child, so we moved forward, easily wrapping our minds around his bonus chromosome. 
Within days after he came home from the hospital an OT with Early Intervention called us, made and appointment, and set up services. She introduced us to many simple things we could do to optimize his development. I giddily glommed onto the exercises, I had a golden ticket, and as long as I jumped through all the right hoops my child would become high functioning. 
You’d be hard pressed to find a more dedicated therapy mom. I daily fulfilled my exercise duties, and added in infant massage and baby signs for good measure. By all accounts Alex blossomed. He walked at about 19 months of age, learned signs and words, and his progress became a feather in my maternal cap. I was proud of him and pleased with myself. 
I kept track of all things developmental, counting his vocabulary at 100 words by the age of 3, and many milestones near target. Then a few months later, when he started school, it all changed. He regressed, and struggled in all areas. I redoubled my efforts, determined to rebound from the setback I had deemed temporary, but it didn’t happen quite that way. 
Alex resumed steady development after interventions outside of school and a classroom change, but he never became that high functioning person I had set my mind on. 
Alex has significant sensory challenges and apraxia, and now, at the age of 13, he is right on the border between mild and moderate cognitive impairment.  
You might think I’m disappointed about that.
You would be wrong. 
While I don’t regret being diligent to maximize the potential of my child, I no longer do so with the myopic approach of ensuring that he falls into a category that seems more desirable. You see, Alex is a phenomenal person. He’s compassionate and empathic, he always asks me about my day, he has rich friendships with numerous students at his school. He has a sense of humor and an athletic prowess, as well as resilience and determination.  
Alex is more than his IQ or a random measure like high functioning. He is a multi-faceted person who drinks in life, and contributes to this world. Over these years I have settled into a less frenzied perspective on development. Now I savor and enjoy each stage rather than rushing through it toward an ever elusive goal. I delight in my children where they are while pursuing their best interests and therapies. I enjoy Alex more now, without concerning myself with qualifications like high functioning. 

Before a recent choir concert, proud of his suit. 

A poster and gift from a girl from school. 

Sporting the mow hawk haircut he insisted on.