The problem love didn't heal
I sit there in his room. Seething in upset regarding a dynamic that I think I will pass over because in the scope of things it is ok and it doesn't matter or won't matter much longer. I pound an email that spills out my frustrations to someone that directly asked. I delete half of it and send the pieces I think will be the least upsetting to the receiver.
I start a 2nd email to another person at the facility. I write something like this: I can't wait until Thursday. I need to know now. What is the ETA for him to come home?
I start dreaming of how i will try to manipulate and bend the rules. I imagine discharging him despite following all the requirements. I get texts from a friend that tell me maybe it's time to call this quits as I sit in my daydream.
Weirdly my daydream suddenly became my reality. It was just a matter of strange timing because I never said out loud the words that were revolving in my head and as I was about to push send. She says, his discharge has been moved up to early May.
I haven't felt these feelings in a long time. I am genuinely beaming. All of my anger that was boiling inside me has subsided because the thing that pisses me off; is now no longer important. (Thank goodness i edited the first email).
I am going out w/ my mom friends from the hospital. They don't have my feelings. I don't think they even know I am celebrating. I get a little drunk. I eat some fantastic food. We keep the conversation light and then we don't. This is typical with a group of autism parents.
We are forever connected by parenting crisis. My friends are like the ones I had 20+ years ago when I would go to church camp for a week. These are not friendships that form over years at the same job or because of proximity. No, we will never get to have the day-to-day. We live all over the large country of the US. Representing different areas, different accents. We have one shitty thing in common. We were the parents that were "there" at the same time. We shared rides. We vented. We hugged. We had dinner, lunches, and coffee. We passed each other in the unit or in the hall. We told each other "I actually know EXACTLY what you are talking about and you are NOT alone". You never will be alone because now we know each other. I will always be the one that was there "then".
Not all parents leave this place happy with the results. I know that sounds strange if you have never been through anything like this. It might sound down right backwards. However, most children do not get a nearly 2 year residency. Most families are given a plan and sent back home. 4 months is not long enough (and that is the amount of time they will tell you that your child will be here). These parents I am referencing don't see the improvements. They don't necessarily have staffing, the house nor their mental mindset ready to go. They are not ready for another 10+ years of care giving. They are scared and it's not this place's job to fix all of this...however, it is reality. We have seen many choose outside of home resources. I am not writing this because I am exempt. I write this to prepare myself.
At 4 months intake, my son was not better. At 8 or 9 months (when they proposed ECT) there was apology behind this. There are no meds nor are their any behavioral treatments that work. I stared at the Director with tears. I couldn't believe i was hearing this. How did Grant keep picking the world's shortest stick? What kind of life is this?
Grant should have been home this past Nov. I will always be resentful of the dr's for not listening to our parental worries about his meds. We were not to be dismissed. His team was not to be ignored. Everyone except the medical dr's seemed terrified by his response to meds. I pray we never have to repeat what happened this past year.
When they approached us in January to put him back on the same meds that nearly took his life; I thought I was in the Twilight Zone. i could hardly form words. You want to do what????
I found a compromise. I explained that no, no we will never ever do those meds again, and I sent a long list of other similar drugs. Pick a different one I said. And ultimately I did. I picked the one I knew and felt the best about. An angel was on my shoulder that day because as of this moment; I picked right. Had I not...today would be very different.
I want to move forward and share the most beautiful part of Grant's story. We picked correctly. I have spent the last few days in Maryland and my son is everything I prayed he could be.
He is calmer. No more screaming and crying. No more random fits of mood shifts that best describe insanity. No more: lay on the floor pounding his face to oblivion. No more refusal to do basic things like go to the bathroom or not play with a toy.
This is not perfection that we have arrived at (what would that even be? - poor choice of words). Grant is still Grant. Of course, he has opinions. He struggles with food at times. He has to have many more dr appts that the average person to keep his mood regulated and he needs a small amount of a med to assist to make this all come together. He has to have a port (central line) for the frequent sedation and he still has a g-tube for a variety of reasons. He does not have an easy life, but he has a life and one worth living. It isn't nearly as miserable as it was not long ago.
My mind drifts to the past...drooling and in a zombie like state. These images are not very distant. He is nothing like that now. He doesn't have to be like that because we found a different solution. I will always be grateful for their willingness to try ECT. Not once, but twice. It would have been easy for us to choose "home". It would have been easy for them to discharge and they didn't.
Love was not enough. I remember hoping it would be. We don't know if ECT will always be the answer. Maybe something different, better will come along? I believe in the people researching this field. I have faith that we can come up with other answers for the families I know that are currently with no answers. You don't hear from these families because they are exhausted. They are hanging together by a string. Let us pray for the future of medical advancement for each of these people that currently don't have meds, behavior plans the work and ECT is not working for their loved one.
This has been the hardest, most trying life experience. Nothing in the world could help Scott and I prepare for autism, mood disorders and agitated catatonia that defined our 11 year olds life.
And this entry is not the end of his story or ours.
It is a clean, fresh start. It is the current plan.. I could not be more happy to bring my son home. Our little family of 3 will make this work the best we know how.
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If you or someone you love is raising a child with severe and/or profound behaviors. There are resources and monies to help you. You are not alone. Please reach out to your social worker, dr's, find other parents and contact me if you need help. You do not need to live a life where your child hurts you or themselves.
