Category Archives: Special Needs Advocacy

Sleepless Nights: A Child Worth Fighting For

I never fully realized that the Day I Met Emma there would be so many sleepless nights to follow in my life. As every parent knows every child blessed to us will makes us lose sleep for one reason or the other.  Adopting children, especially older children, out of the foster care system guarantees restless nights.

To be sure Jake, Brandon and Piper have caused both Marie and I their fair share of our sleepless nights.  This post and these writings are about Emma: A child worth fighting for.

Emma fighting for fun

Emma Lengquist enjoying a day at Camp Barnabas.

Here I sit at 2:24 am on a Saturday. It’s been 239 days since I received the call that Emma had lost her life by her own hand.  Of all the many brave battles she had fought and won, this one she had lost. I’m different because of this event. I used to sleep like a baby knowing I had worked hard and trusting that God had a plan.

God still has His plan. I still serve him.  But I don’t sleep like I used to. My dreams are different.  My remembrances have new priorities.

Emma had her cerebral palsy to overcome that challenged her physical ability and her cognitive powers. And make no mistake, adoption was a life event she was challenged to overcome, as well.  Then, as her mental illness progressed, there were new battles to fight on top of the ones she never fully conquered, or accepted.

Simply put, it was all too much in the end.

When I wake in the middle of the night it is with those rush of thoughts that come right before your eyes open to the dark. The rush of memories can be startling; the times we fought, the times we laughed, the times we cried, the times we hugged…and the times I could have, should have done more…though I don’t know how I would have or could have.  Those raw emotions come screaming forth; anger and laughter, sadness and love, regret, all in one tangled mess.

How do you sleep through that?

I miss her. Each and every day. I know that as some read this they fight their own battles with the recollections they have of their loved ones who bravely fought and lost.  There are those readers here that are still fighting those battles.  To each of you I say to stay as strong as you can and fight each day, each hour to remember the good. Fight for that right to remember the good.  And search for purpose. We may not understand God’s will or allowances for the events we face or have experienced.  We can, however, wake up each day with a vow to move forward and to honor their memory or recognize and do our best to forgive their present.

Emma has caused me many sleepless nights since the day I met her and she still does.  Emma was worth fighting for.  The child you love is worth fighting for.  Any child is worth fighting for.

Parenting a Special Needs Child

Parenting a special needs child is not for the faint of heart.  Let there be no doubt. Though I would offer that the parents of special needs children, whether those special needs be physical, mental or otherwise, will learn more about themselves and have insights in to human behavior than parents with 100% normal families. (Or, is there such a thing?)

Emma Lengquist - Parenting Special Needs

Emma Lengquist at Camp Barnabas…sitting next to a very bored brother. 

RELAX
First, relax.  I am going to assume the following;

  1. You love your child.
  2. You are doing the best you can.
  3. You are following your faith…as best you know how.

You will make mistakes.  You will be judged.  You will be embarrassed. You will have regrets.

And…so what?  Your child is worth all of that. And so are you.

ACCEPT
Nothing is more trying than “What if?” or “If only.”  This is who your child is.  This is who you are.  These are your strengths as a family.  These are your weaknesses.

Getting better each year, improving, reading and researching. These are all actions to become the best you and your child can become.  It’s not about bigger houses or more friends.  It’s about the maximization of what you and your child are capable of accomplishing.  Heck, that may be just getting through dinner without regurgitating the entire meal for some kids.

Whatever limitations you face and whatever markers of progress you set, accept them and improve. Run towards something. Not away.

ENJOY
With physical disabilities we would find joy in Emma’s progress.  The surgery that allowed her to walk without falling down.  The tendon releases that allowed more muscle movement, etc.

With the borderline personality disorder we learned to enjoy the times (sometimes quite limited) when Emma was whole and free from the BPD demons.  Admittedly, there can be whiplash when dealing with mental health issues.  One minute there is shouting and anger and the next minute hugs and laughter.

Through it all, be grateful.  Everyone’s life can be better.  And everyone’s life can be worse.  Comparing yourself and your child will get you nowhere constructive.  Compare yourself and your child to yesterday. What progress is there?  Look for progress and celebrate.

Register NOW

for the inaugural
Emma Lengquist Memorial Puppy Parade

Throw Away People

As I was walking through Lowes this last Saturday evening coming towards me was an adult child in her upper twenties or lower thirties supporting herself with the cart she was pushing. With each step she displayed the tell-tale trait of some sort of disability, which I assume is some variation of cerebral palsy.  In front of her walked her father.  He looked to be pushing sixty.  He looked tired.  He looked like a man searching for an item to fix something rather than create something.

Now, quite probably I am projecting far too much here.  And yet, there would be me in another 5-7 years if Emma had been able to overcome her mental health challenge with Borderline Personality Disorder.  Again, my mind raced as simultaneously, and in-congruently, my thoughts wandered from here to there. Some of what crossed my mind…

disabled special needs people

Thank God For Parents 
Not every home situation is ideal and not every parent is equipped for the long haul.  And yet most parents stick with it out of love, obligation…whatever the reason. These parents by in large spend a great deal of their retirements and would-be vacations to support these children as they age. People with disabilities challenged with debilitating mental health issues, serious autism, down syndrome and/or physically challenging disabilities like cerebral palsy will find it enormously difficult to hold down steady work over the long term, much less a satisfying and rewarding career.

For most of these parents they are not choosing between the trip to Europe or a week in Hawaii. They are choosing between limited and quite expensive insurance plans and permanent, albeit less than glamorous, housing solutions for their loved ones.

Throw Away People
And what of those that don’t get parental or familial support as they continue to age in to their middle age?  Or what happens when the parents pass away?  That is the question that used to haunt, literally terrify, Emma.  She would perseverate on how she would finally be alone with no one to help or guide her.  Her anxiety over the issue would build and build and build and no amount of contingency planning or the explaining of special needs trusts (we have been very blessed in our business endeavors) made sense to her or relieved her worry.

For many, they become Throw Away People.  Likewise damaged or fearful siblings pull away.  Aunts and uncles look the other way and try to forget. Fatigue sets in for many caregivers and visits every week become every month, then every year until finally… alone on their own.

The cries for lower taxes/spending and self-responsibility urge government, both national and state, to look for tax cuts.  Cutting the funding for mental health services and for people with disabilities is easy.  After all, many people with the diagnosis are unable or simply not fully aware of their voting rights and responsibilities.  Special needs people, both physical and mental, don’t create enough of a population with a large enough percentage of wealth (remember, they are most certainly spending a larger portion of their income on insurance and medical care) to gain the favor and attention of politicians at any level.

If you doubt what I say, look how the State of Kansas, for instance, has eviscerated funding for our most vulnerable citizens, and even our schools, over the last ten years.  (In fairness, these last few months have begun a restoration of cuts in Kansas…though still seriously underfunded per medical recommendations.)  All in the name of tax savings for people in my or similar income brackets. The whole thing is sad, really.

What You Can Do 
First, and this may sound like nothing at all, recognize and reach out to people in your sphere that could use just a little encouragement.  Attend a fundraiser and give more than you thought you would. Volunteer to attend to the care of a special needs child or adult so that the full-time caregivers can get away for a weekend, or even just a few precious hours.

Second, you can become aware of how many families out there are struggling with this in their families.  You will be astounded by the sheer size of the population once you become aware.  Autism is amazingly more common today than even thirty years ago.  I would almost bet you can think of someone right now.  Then take that awareness and let it carry forward in your spending and voting patterns.  Spend money where they hire people with special needs.  Here in Olathe, Hen House and Payless grocery stores and Carmen’s Cocina are three such businesses. And I applaud them.

When you vote, think about the consequences of the vote“Why should I have to pay higher taxes to support someone else’s special needs kids?”  Well, in effect, you already are.  Only we’re paying more on the back end by not addressing the issues on the front end. Early diagnosis for so many of these mental illnesses is key to recovery therefore cutting down on emergency room visits for those unable to afford or keep health insurance.  Physical limitations can, in many situations, be bettered through modern medicine which creates a more productive member of society.

Lastly, what kind of nation and people do we want to be?  Compassion, care and participation in the betterment of others’ lives is not a Democrat or Republican issue.  I refuse to allow the discussion to be framed in such a way. Throwing money at the problem isn’t the answer, either.  Increased funding, increased awareness and increased civic participation in helping these special needs people benefits us all.  Yes, even our tax base benefits by creating productive employees that receive less in government support, greater pride in contributing to their own needs and allowing older care-givers to live their last years in dignity without worry as to what will become of their special needs adults after they pass.

“It was once said that the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadows of life, the sick, the needy and the handicapped.”
Hubert Humphrey