Special Needs Parenting and Perspective

There's been a few things on my mind lately, all orbiting around the themes of special needs parenting and perspective.  So I'm going to consolidate it all into one post and we'll see how that goes!

Item One:  Balancing Chill with Vigilance

Here is a key ingredient to both good mental health and a strong faith: you don't spend all your time worrying.  One thing that helps cut down on hours spent worrying is the realization is that you're not in control of most things anyway (and, for people of faith, the belief that God is in control).

Not worrying goes *way* against the grain of my natural personality.  When you add in special needs parenting, you get the added (perverse?) incentive that sometimes worrying DOES pay off in a big way.  The more time you spend discussing ideas with other parents, or pouring over medical journal articles, or checking and checking and checking the Facebook groups, the more you increase the chances that you will find the doctor / medicine / sensory solution / diagnosis / diet / therapy / school support / supplement that will improve or possibly even save your child's life.

But, it also means you will worry needlessly about extra things, both things you have identified and things you worry you might have missed.  My latest round of worry for Joshua was the possibility that he had a blood clotting disorder.  I was worried about this mostly because it's common with his chromosome disorder, but also because he has some trouble with nose bleeds and history of a blood transfusion with surgery.

It would be crazy to get a referral to a specialist to check on hemophilia just because a child living in a dessert climate gets nose bleeds -- you would never do that for a medically typical child.  But the nature of having a child with a rare disorder is that you can expect 1) that unexpected things WILL (sometimes) go wrong, and 2) that the doctors (again, sometimes) will NOT be watching out for these things because they're so unusual.  

When we went in to the hematologist, we discussed a bunch of things about Joshua's medical history, the doctor Googled at least 3 things in front of me, and then at the end of the appointment he thanked me for educating him (about the link between 4q deletions and Hemophilia C, and about the latest treatments for Pierre Robin Sequence) - which is cool, in a way, but it also puts a lot of pressure on special needs parents to know their stuff, because doctors need you to educate them when you're dealing with rare.  

The good news in this anecdote is that J does NOT have any kind of blood clotting disorder!  His labs were normal!  But then this begs the question -- was my worrying worth it?  If he would've tested positive, then it absolutely would have been - but he didn't.  This is the example that we're dealing with this month, but new concerns come up all the time, and it's tricky to know how to handle that in a way that's healthy (for me and for Josh).  I would love thoughts on how others strike this balance between not worrying and watching out for the medical things that doctors might miss.  

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Item Two:  My Lent Challenge, Perspective, and a School Update

I'm doing a Lent challenge with my prayer group to turn complaints into gratitude.  When it comes to Joshua's special needs, I am a complaining machine, so this is the place where the rubber hits the road for me, and the place where it would be most helpful to do the exercise and realize all that I have to be grateful for.  Here we go!

The complaint:  I'm tired of Josh having procedures and blood draws and doctors appointments as a constant part of his life.  I'm tired of the stress it causes him and the worry it causes me.  

The gratitude:  I'm very grateful that Josh does not have a blood clotting disorder.  And I'm grateful for other things that tend to come with his syndrome that he has not had trouble with (such as seizures), and for things he was born with that healed on their own with no surgery (such as his atrial septal defect).  I'm grateful that God has protected him through all his surgeries, and provided medicines and supplements to help with other issues.

The complaint:  I'm tired of school being a struggle.  I feel sad that the chromosome disorder causes learning struggles, and frustrated that since school is designed for a typical student, it often doesn't work perfectly for him.

The gratitude:  I'm grateful that he's at a school where the administration, teachers, and staff value and support students with special needs, even (especially?) as the district is strapped for cash.  I'm grateful that Josh likes his teachers and is making forward progress.  I'm grateful that things are going okay with fellow students.  I'm grateful that everyone on his team knows the things that make him excited and use those things to motivate him.

The complaint:  I'm tired of food still being a battle and still needing to be planned in every situation.

The gratitude:  I'm grateful that we have a wonderful private occupational therapist.  I'm grateful that, after YEARS of spinning our tires with eating, Josh is having a huge burst of willingness to try new foods.

And, in areas that continue to be challenging, I'm grateful that God will someday wipe away every tear and make all things new.