A Promise
I can tell it's a Saturday morning because Scott sleeps in and I can carve out a tiny chunk of time to catch up my friends and family through this blog.
I have another interesting real estate day ahead of me. We will drive around the Twin Cities. We need to check on 2 projects that should go live on the MLS this week and take care of a variety of needs. It's exciting and challenging work. I love it and I appreciate the support of those of you that have reached out to me and those of you that will work with me when you need an agent. It means the world to me to have your trust in me.
A lot of this (my business) has been possible because Grant is not here. And just because he is in Maryland and I am in Minnesota; it doesn't change that he is always on my mind.
He may have a very piviotal and life-changing week ahead of him. Which, in reflection, is fascinating to me in terms of timing. Because last year at this time, I got a call from KKI that it was his turn to go in to the unit. I was at our annual field day and I went from thinking I was about to sprint from work to the airport. That didn't end up happening. I got to spend the summer with him.
Now this field day will be similar (it's on Tues). Because now Grant is still at KKI, but he will be at John Hopkins getting a head CT and I won't be there. I hate that. I really, really hate it, but I can't afford to fly out there.
So this is the beginning of a new chapter for Grant. The head CT is necessary before he can start ECT treatment. KKI is doing everything they can to make this the next treatment for him a realty. This is a necessary and important step in helping reducing Grant's SIBS or even possibly eliminating them.
If you don't know what ECT is and why it's important for Grant...I would like to take a minute to explain to all that curious. This is going to take a minute.
I would recommend reading this and then coming back to my little blog.
If you decided to not read it, then read this (from this same article) to understand that Dr Lee Wachtel is describing my son 110% in this paragraph:
"Standard treatments of SIB in autism and intellectual disability are behavioral and psycho-pharmacological interventions. While many individuals respond to these modalities, there has long remained a subgroup of treatment-refractory patients who have exhausted dozens of psychotropic medications, years of intensive behavioral therapy, and multiple out-of-home placements and hospitalizations. Such patients may be padded and immobilized head-to-toe in protective equipment, and frequently receive psychotropic medications as chemical restraint—often with limited benefit and high risk of adverse effects. Despite such efforts, these patients often sustain permanent injuries including blindness from retinal detachment and cerebral hemorrhage.
Recent suggestions that SIB might be one of many symptoms of catatonia in autism spectrum disorders—including mutism, negativism, posturing, rigidity, and repetitive speech and acts—led to treatment trials with ECT, the long-recognized effective treatment for catatonia, with remarkable behavioral improvement and relief."
If you still don't quite understand...he doesn't have a choice. Medicine and typical behavioral approaches do not reduce Grant's self-injury enough to give him any level of independence.
I have been recently out East to see him. It hits me. There is NOT enough change. If he comes home now (this was May 15)...then basically little has changed since he was admitted on Oct 12. This is not to take away anyone attempts and successes, but Grant remains in a very similar situation as he was on day 1. This is absolutely heart breaking. Just process this for a moment and I know many people are not fully aware of the situation so I will try to explain.
Since admission, despite getting him to eat orally again, it mostly has taken 3 adults to help him eat. He is now down to 2 and only 1 if it's highly preferred food like jello and yogurt.
Someone has to constantly shadow his every waking move because he still punches himself frequently (about 25 times minimilally an hour).
Someone should be with him when he sleeps as he is at risk of removing his g-tube, self injuring or other behaviors.
He is overly drugged to reduce the behaviors to a some what manageable level.
Summer and winter would create different problems as he is in restraints. He sleeps with a helmet because of his hitting. Summer he would be too warm to do much outside and winter it would be hard to keep him safe with a winter coat.
We don't know how he will respond to our home environment upon return. We don't know because the hospital doesn't replicate typical environments like school and home.
I think this hits the main topics, but I probably glided over other issues.
I don't write any of this to talk a future parent out of perusing services from the NBU or to make anyone hopeless..in fact, it's quite the opposite. I have an unreal level of enthusiasm and positivity for the first time since he was enrolled at KKI that his life might have a radically different outcome.
This decision, if it works, will have life changing negative and positive changes. I have weighed these ideas and have asked to move ahead with ECT. I know fully that Grant may not be a person that gains benefits from ECT. But, I also know that in terms of gambling which way this will go he will more likely gain than not so this is a no brainer. We are moving ahead. If insurance agrees, we won’t have Grant home this summer which is not this mom's preferred situation. The options are little. I hope you will support our family despite that people find ECT scary and elective. I would argue there is nothing elective about our decision.
