Saturday, March 16, 2019

The struggle is real...

It's been a while since my last post, we continue to struggle.  My son turned 17 in September  and it's been a roller coaster with his mood and agressions. As I mentioned before it was like a light switch. Something, somewhere back in 2017, something flipped and he is not my funny, quirky boy anymore.  He is anxious, always on edge, its like an itch he can't scratch.  Getting the help he needs has be an exhausting effort.

We spend a month in out of state inpatient 40 minutes away in October 2017.  He was discharged still unstable.

In April of 2018 (six months later) and after a very traumatic five day  stay in a local Emergency Department.  We were placed in a room with no window's and next to screaming drunks and drug addicts,  two broken teeth  later (yes they broke my son's tooth while restraining) we were were finally placed at another OUT of state pediatric psychiatric inpatient facility, this time TWO hours away from my home.

It is not uncommon for ASD patients to stay up to two weeks or long in ED's waiting for an inpatient bed here in Massachusetts . 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.

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

If I had to compare the two facilities our second inpatient in Rhode Island was Disney Land,  but it didn't come without challenges, for my son had... 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  (yes our stay was three months here) later my son came home on five different medications.  Once again  my son was not ready for discharge, however insurance dictated that and we were  ready and the hospital had to a let us go too soon.

With each hospitalization my my come out with a NEW behaviors  First biting.  Then..  property destruction and going after his peers.

Now today five medications, 9 months later, 35 lbs heavier 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 I have the stamina to do that  right now or to do that to him!! After all he is the one who has to endure staff who don't understand 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 we 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" and have been on a wait list since August for the facility in Rhode Island as they go to ED patients first...and 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, unless someone can promise me a better experience. I certainly don't see that happening.


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

Some Reading I have been doing:
A Brick Wall

Next on our list, on top of the hell I am living is is guardianship.  Stay tuned for a post on that.


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