Parents of special needs children experience battle fatigue. It’s something we don’t often talk about, not even to each other, but it’s there. It get mentioned on the walls of support groups in passing, but often we feel like we need to “buck up” and keep moving.  And we do. But there are times when we just want a break from fighting certain battles.  We just want a short respite so that we can enjoy everything else about our child without the dark cloud hanging over our head. We are always fighting behaviour challenges, medical challenges (often the two are linked), insurance companies, state/federal support systems, schools, doctors, hospitals, other professionals.. the list goes on and on.  Sometimes, we just want a break from it all, not to get away from our child, but to enjoy other things about them.

Right now it is 2:24 AM.  I have been up since 12 AM with Lyra and she is currently sitting in her crib clapping for herself and giggling.  Cute, right?  Not so much. We played this game last night and a different version the night before. In chunks here and there I am getting enough sleep, but I am exhausted. While Lyra has never been a great sleeper, the last 4+ months have been hell and it impacts every aspect of our lives.

I fight Lyra every day, more than once a day, to go to and stay asleep. It isn’t just a nighttime problem. It’s a nap problem too. She can have dark circles and glazed eyes, and it doesn’t matter. She won’t sleep. I have read every articles I can find, I have reached out to every single one of her doctors.  I HAVE A FLIPPING SPREADSHEET so that I can do statistical analysis on what works and what doesn’t…. The spreadsheet has proven basically worthless.

Lyra

Doesn’t

Sleep

….and no one seems to be able/willing to help us….

I have brought up the topic over and over again with almost all of Lyra’s doctors.  They smile, shrug, and typically say nothing.  To be honest, I don’t think any of them believe me when I say it is really this bad. If they do say something it’s:

• “It’s a phase, she’ll grow out of it.”
• “Every parent goes through this.”
• “You just need to do more sleep training.”

What I hear is:

• “It’s not my problem.”

It doesn’t matter that I point out she has always had sleep issues and they are progressively getting worse. It doesn’t matter that I explain there are some limitations to what sleep training method we use (vomit on the walls is NOT a new interior decorating trend). They clearly don’t believe me when I explain how diligent we are with her bedtime routine. We even read the same stinking book! I can see it in their faces that they believe this is somehow our fault and there is nothing they can do to help.

What they fail to appreciate is how this impacts our family as a whole. I am not just talking my immediate household either. It has changed how we do family dinners with the other 3 households we live near. It has impacted how I plan (or don’t plan) outings during the day with family members or friends.

I am so worn out from fighting with this issue.  It takes away so much from our quality of life and it distracts me from all of the wonderful things about my daughter. I just want a break, not from her, but from the fight. I want to forget the sleep issue for 24 hours and just enjoy everything else about her. I have battle fatigue.

But there is no one else who can fight the fight for us.

*** This post was completed at 3:07 AM and she has moved on from clapping to blowing bubbles.  Lyra finally fell asleep at about 3:45 AM. ***

Some articles:

• The unexpected lives we’re living – CNN.com
• I HATE the title of this article, but it’s worth including: Pity the Parents of Special Needs Children: Effects & Coping
• Five Things Not to Say to a Special Needs Parent
• When Professionals Add Stress to Special-Needs Parents
• Autism Moms Have Stress Similar To Combat Soldiers