Monday, April 30, 2012

On Special Needs Parenting

Elena took this picture two summers ago.  She even won her division in 4H and took it to the state fair.  What's so striking is the incredible quality of this picture--the vibrancy of the colors, the shine reflected on the leaves.

What also struck me is that the butterfly was imperfect.  Broken, but still beautiful.

That's kinda what it's like raising a child with special health needs.  Maybe it isn't the experience you had envisioned, but still a lovely and worthwhile thing.  (Read "Welcome to Holland."

Thirteen years as a nurse and 2 1/2 years as a special needs mom, and I've seen all kinds of parents.  I've met moms who are so overbearing and in-your-face about their child's disability that their kiddo has no hope of normalcy.  I've chatted with moms with whom I can't get past the snark to truly appreciate the value of their parenting expertise.  I've met parents who presume to know everything and honestly don't have a clue, and I've met parents for whom ignorance truly is bliss.

But the worst are those who truly cut you with their words.  One of the most offensive things I've read repeatedly on various blogs is this:  "It makes me mad to hear expectant parents say, 'I just want the baby to be healthy.'"  Those making this comment (at least two of whom aren't even raising a special needs child) must've forgotten what it was like to be pregnant.  They attest that to make such a wish devalues the life of a child who is not born healthy.  Not true, and not helpful.  What mother wishes to have a sick baby?  Seriously?  Of course, we all wish our kids could be born and grow up without daily meds, frequent surgeries, etc.  But that doesn't mean you don't value the life of your sick child.  These comments do nothing to support other parents who may be hurting.  It is unkind to invalidate another parent in such a way.

Here's another one:  "Death is not the worst thing that could happen to your child."    Now, who's devaluing the life of the special needs child?  I've walked the last road with many, many families and lost patients of all ages.  Let me tell you, death may not be the worst thing for the person who dies, but it is often the worst thing that happened to those who remain.  What a cruel thing to say.

Raising a child with special needs of any kind is not for the faint-of-heart.  You'll be faced with comments such as those above, and much worse.  You'll hear moms talk incessantly about their trophy children, as if there were such a thing, in comparison to your child.  (That's why I so enjoy reading this blog.)  You'll have to grow some thick skin.  In the meantime, here are some things you can do to cope.
  • Knowledge is power, so research.  Always be learning.  Become an expert on your child.
  • Don't assume that the medical professionals have thought of everything.  If you know your child is a hard IV access, don't wait until the day of surgery.  Talk to the surgeon ahead of time about a central line.  If your child normally gets an EKG before their appointment and one is not scheduled, call ahead and ask.  And on and on.  Don't worry about annoying the office staff with your double-checking.  Chances are, they'll appreciate it.
  • Don't place blame.  It's easy (and tempting) at times to get angry, frustrated, and defensive with the caregivers, but it doesn't help.  Remember, they are human beings too.  Don't sweat the small stuff, and don't get bent out of shape unless it's really warranted.
  • Develop a record-keeping system.  Type "care notebook" into a search engine and look over some sample pages, then create your own.  Or, store records on a flash drive.  When you see multiple specialists, the docs will thank you for being so organized.
  • Surround yourself with sane, supportive special needs parents.
  • Keep in mind that no child is "perfect" or "normal."  How many kids do you honestly know who have absolutely no physical or emotional issues?  It could be something as simple as seasonal allergies or complicated as persistent cloaca.  But few kids grow up completely healthy.
Take your parenting responsibility seriously, but don't take yourself too seriously.  Otherwise, you'll miss a lot of joy that only your child can bring.

That's my take on it.  What's yours?

Sunday, April 29, 2012

Flipping Flags, Painted Piggies, and More

Hmmmm, what's been going on since January?  Well, let's start with Elena.  Elena has just under a month of school remaining before she becomes a freshman.  Let that sink in for a minute...She turned 14 in March.  Sadie was sure that Elena's friends were all there to see her rather than the birthday girl.  She kept saying, "want the friends?" repeatedly, much to Elena's dismay.  Ha ha.  Elena is doing well in track this season, regularly placing in the 400 meter dash and 1600 meter relay.  And, drumroll please, she made the color guard for the defending state band champs.  Practices start this week.  Other than watching competitions, we figure we'll see her again in October or so!

Sadie saw the nephrologist in March.  Everything looks perfect, and we are now down to annual visits with Dr. W!  We'll see the urologist again in June. 

Sadie still hasn't gotten the hang of hunting Easter eggs.  She thinks that the adults find the eggs and stand beside them for her, then she picks them up and puts them in her basket.  But of course, our Easter was wonderful!

In other news, we expected that Sadie would be in her SMO's for a couple of years.  However, her physical therapist feels she is ready to come out of them now!  Woot!  We celebrated by painting her toenails for the first time.
Sadie picked the color.  Daddy is the "hand model" in this pic.