The Other Side

I have been feeling compelled to share about the other side of parenting children with special needs, specifically neurological disorders. Behavior, with a capital B.  I have hinted about it in the past, but my main focus has been trying to share the positive outcomes of "life after a miracle".  After all, that part is a lot more fun.  The reality is, almost ALL children with a neurological disorder experience some incidence of behavioral issues, and more often the problems are chronic.  I will share our experience but keep in mind that each child and family is unique.

Since we have had children and foster children with multiple diagnoses and varying personalities, we have pretty much seen it all.  Each one serves up his or her own special menu. Yelling, screaming, hitting, biting, spitting, throwing, refusals, door slamming, defiance, blaming, name-calling, impulsivity, eloping, avoidance, you name it.  Sounds like a huge bucket of fun, right?  The impact of the negative behavior is widespread and it touches family, friends, caregivers, teachers, coaches, and helpers.  Its insult has caused our family to miss many community and school events, avoid public places, be late for school and work, and cut short dinners and parties when the evil monster shows its face.  We pick kids up early from events and hold our breath when they go somewhere without us.  Often, our kids just cannot do many of the activities enjoyed by peers.  We have left stores with a full basket more times than I can count.  After thirty years of parenting, Toby and I are well versed in Love and Logic, Magic 1-2-3, toughlove, reverse psychology, reward systems, and other parenting approaches and they almost never work in the midst of the meltdowns caused by a misfiring brain.  It is exhausting, overwhelming, and disappointing.  Yes, we sometimes feel sorry for ourselves, even throw a little pity party, but do you know who we really feel sorry for?  THEM.

Kids inherently want to please.  They do not want to misbehave, disappoint, and embarrass.  When people see our kids misbehave and meltdown in public, they miss a crucial point in the interaction, which is the aftermath.  With the exception of a few specific diagnoses, children are unfailingly so, so, sorry when they reflect on their behavior. Every. Single. Time.  They are at least as disappointed as we are.  It is heartbreaking, and we work to build them back up again, despite being completely worn from the battle.

When I see other parents struggling to manage behaviors in public, I want to give them a hug.   I try to send a mental message, saying, "I Know".  I hope they receive it.  I hope that they feel my complete and total lack of judgment and my frustration that I am unable to help.  I know that they go home feeling depleted, exhausted, and sad.  And I am so very sorry and helpless.

I am not sure why I wanted to share about difficult behavior.  Maybe, to spread awareness and understanding so you can support parents you know who may be dealing with difficult behaviors.  Or, maybe I felt less than transparent in sharing so many joys and few of the negative aspects of our reality.  Either way, I hope you will have an opportunity to share a smile or a hug with a parent you know who has been served up a menu of meltdowns and needs a little understanding. Sorry for the long post.  Thank you if you you made it all of the way through:)

Surgery #.......who knows?

I have no idea how many surgeries our girl has endured but I do know that the glaucoma procedure she had yesterday was her 14th glaucoma procedure in her ten years.  Angela had an Ahmed valve implanted in her left eye and she came through like a champ, as always.  There are some pretty scary potential complications with this procedure but so far the results are very promising.

For the past two days, Angela has traveled by wheelchair again.  Her vision is limited right now, and she is a little unsteady on her feet.  And then there is the cast on her right leg.  I have been struck by the public response to a child in a wheelchair.  And, to be honest, with a patch on her eye, a splint on her wrist, and a cast on her leg.  Angela used a wheelchair for quite a while after her brain surgery but I had forgotten.

When people see us, they move to the side to let us pass.  They allow us to enter the elevator before them and they hold doors to let us go through.   They smile extra hard when you catch them looking. And then, there is the look in their eyes.  Pity.  Every. Single. Time.  I am not the type to be confrontational in public (and besides that, they mean no harm to us) but if I were, this is what I would say:

"Please don't pity me.  I know, you see a mom who has been delivered a load of burdens beyond her share, but that is not me.  Instead, I have the privilege of being seated in a front-row seat to a miracle.  I have watched a child, who was delivered a death sentence, defeat her fate and be saved by a drastic, unimaginable surgery.  I have been witness to a child who knows no burden, despite her undue challenges.  She is a vision of what life would be like if we knew we could not fail.  We would try anything and everything!  Although she rages at those who love her most, she is not defeated and she smiles through every procedure.  She is polite, and grateful beyond measure, to those who care for her in clinics and hospitals.  Stare if you must, but do not pity us,  or her."

It is interesting, the perspective of a parent whose child has extraordinary needs.  Contrary to popular belief, we do not want people to feel sorry for us.  Oh, we want and need the disabled parking permit.  Have you lifted a fifty-pound wheelchair?  Multiple times in a day?  At the end of the day, though, we want what you want.  We want our kids to be happy and healthy and to live a full life. We do not want

pity, though, because we share a secret.  Although we wish our children did not have to struggle, we also know that we have met some of the most caring, compassionate people on our journey and that our children are wise beyond their years.  They know the value of their days, and they do not take a single day for granted.