Wednesday, April 10, 2019

What I have learned in crisis...

We are now on our third inpatient hospitalization.  Thankful we were able to avoid the Emergency Department this time around. This time, We put our son on a wait list and did a planned admission at the last hospital in Rhode Island.

This experience is traumatizing enough, waiting days in the ED should never be an option for these kids. Its heart breaking and traumatizing enough to drop them off and have to explain to them why they are there and have to be away from home.

https://www.washingtonpost.com/national/health-science/nowhere-to-go-young-people-with-severe-autism-languish-weeks-or-longer-in-hospitals/2017/09/23/25333dfc-997c-11e7-b569-3360011663b4_story.html?fbclid=IwAR2VkkR7r7vkNHokcZJ1-TNY_UPqoYOJh5WyeqTHT7QLyEHeSkyjhX9cU8A&noredirect=on&utm_term=.251980a95b72

Once again we are out of state as Massachusetts does not have appropriate facilities for those on the spectrum and co-morbid conditions.

I feel like I have come full circle from the NICU's long hospitalizations to this...

 I am allowing myself more down time during this admission.  The hardest part for me but I have had more tome to reflect... a lot.

Things I have learned from inpatient admissions:

  • Your first admission will he most heart breaking of them all.  When the door closes behind you and your hear your child's screams.  The second you THINK would be easier, on some level, it might be... by the third,  you know the drill, you know what to expect, you may even know all the staff...but you numb, no words, just existing.
  • none of this is black and white.  none of this can be fixed with one or even five pills. If you get the right combination first time around consider yourself lucky.
  • One good day is just that.  ONE GOOD Day.  Hold on to it.  Treasure it.  This too is a roller coaster ride, allow ups and downs.
  • it's important to have a team that you trust so you can step away and know your child will be OK.  However, that won't be perfect either.  There will staff you won't like, nurses, therapists, doctors.  
  •  know and expect mistakes (unfortunately at your child expense), but reality is staff is human.  They are trying to figure this out as much at you are.   
  • when you have come at this at all angles and theres nothing left,  give it up to a higher power, trust (cautiously) and let the professionals do what they are trained to do.  However,  Do NOT lose your voice along the way.
  • One of the hardest lessons for me, but so much truth behind it is  self care.  You have heard it a million times from family, friends, social workers.  I was always the one who rolled their eyes at it.  The last person I have time to think  about in times like this is "ME".  Seriously, take time for yourself.  Breath (just as you had to in the NICU). Regroup.  Once thing is certain. Stress DOES have a way of catching up with you, eventually.


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