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.

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.

Saturday, March 16, 2019

The struggle is real...

It's been too long since my last post, we continue to struggle... agressions worsening...

My son turned 17 in September  and it's been a roller coaster with his mood and agressions.  As I had mentioned before it was like a light switch went off he is an entirely different kid.

Something, back in 2017, something flipped and he is not my funny, quirky boy anymore.  He is anxious and edgy, the best way I can describe it is it is like an itch he just can't scratch. Hormones? maybe but theres something more we haven't figured out yet..

When he is clear I get things like "mommy I don't want to do this anymore"...Getting him the help he needs has be an exhausting effort. We have the best of the best on his team and no one can figure this out out.

We  had a 24 hour Emergency Department  (ED) stay in October 2017...and spent a month in an out of state psychiatric inpatient for Children with Developmental Disabilities and Autism, 40 minutes away.    When he was discharged he still was not stable. HE was more anxious now adding trauma from the hospital. stay/ injuries unexplained and side effects from medications

Six months later, in April of 2018 and after a  five day  stay in a local Emergency Department where we were placed in a room with no window's and next to screaming drunks and addicts, he got  two broken teeth (yes they broke my son's tooth while restraining him), unable to shower or leave the room, we were were finally placed after fat  another OUT of state pediatric psychiatric inpatient facility, this time an hour and a half away from my home.

It is not uncommon for ASD patients to stay up to two weeks or more n ED's waiting for an inpatient beds that can accomidate both the intellectual disability and the mental health issues.

At the moment Massachusetts does not have an inpatient facility to help kids on the autism spectrum with intellectual disabilities and co-morbid conditions.

From some research I have done, there are only 10 facilities, nationally that are equipped to handle children on spectrum and intellectual disabilities with co-morbid conditions.  None of them in Massachusetts at the moment and most only go up to age 18.  What happens when they age out??

If I had to compare our  two  inpatient stays our second inpatient stay in Rhode Island was Disney Land in comparison, to the first..  but it didn't come without challenges, ..lots of testing to rule out medical issues, more med trials & enduring its side effects along the way, injuries which were not limited to a bruised eye, elbow infection, cut forehead, viral illness, with lots of blood work and other testing.

Fast forward, three months at this facility.  My son was finally discharged and came home on five different medications. However, once again   insurance dictated that we were  ready to go home  and the hospital had to a let us go too soon once again.

arned NEW behaviors  First was biting.  Then..  property destruction and going after his peers.

Today, 9 months later, five medications, 35 lbs heavier (from medications) and still no relief in behaviors.  Medication side effects continue . None of his doctors are willing to make changes to his medication without another inpatient.

Yes, there is always going back  to the ED, but i'm not sure I have the stamina to do that again or to do that to him!! After all he is the one who has to endure staff who who are not trained with  do ASD, being restrained and possibly having more injuries.  ( I still have not been able to get him to a dentist for a cleaning and to repair his teeth because of his behaviors)

Sometimes, I feel like its too easy to forget that behind all these behaviors is still a scared boy with feelings who can't express himself.

For now I have opted to stay at home,  and do what is called "at home boarding/planned admission", some not all facilities will entertain this if you have beenthere before. However  the wait list is alot longer as those waiting in the ED are first to get beds.  We  have been on a wait list since August for the facility in Rhode Island ...and  we are also on a wait list at a facility in Maryland.

I'm not certain how long we can hold out but I'm certainly going to try my hardest to avoid the ED.

In the meantime, while I am in a living hell...I stand by what I have said numerous times knowledge is power, I continue to try to educate myself on what comes next.

Some Reading I have been doing:
A Brick Wall

Your can read about ED's stays in an interview I did with the Boston Globe here 

While here a friend wrote this in our local paper this article and shared her story on this journey. Certainly a lot of similarities to what we are going thru now. I hope Connors story inspires you and get the word out . We need to do better for our kids.

Next on our list, on top of all this is guardianship.  My son will be 18 in September.  Stay tuned for a post on that.