Yesterday Jonah had another appointment at the child psychiatrist. Andy and I tried to time it so I’d get there first to check him in, meet the social worker from Wildwood, and then Andy and Jonah would meet us there so Jonah wouldn’t have to wait (thus hopefully decreasing the chances of him flipping out). It worked out pretty well. Jonah did a very good job of staying relatively calm for the small amount of time the doc and a med student observed him- then Jonah and Andy left and I stayed behind with the social worker to talk to the doc.
Doc wanted to change Jonah’s meds a bit – increase the risperdal by a little and remove the atavan PRN (as needed) and replace it with klonopin PRN. When Andy and Jonah left, he wrote the scripts up and I explained that we were going on a tour of Tradewinds on Thursday. Then I asked a “what if” question I’d been thinking about:
“What if we find the magical mix of meds and the aggression goes away? Do we still place him? Does he still need residential care? Do you ever hit upon the right cocktail of meds and fix the problem?”
“Occasionally,” he answered, “but I wouldn’t get your hopes up. Usually we can mitigate the symptoms for a short time. But the decision is up to you. Remember, the choice is yours. If you place him, you can always take him back home.”
Sigh.
I don’t like this kind of decision-making. This ‘playing around’ with the course of my child’s whole life. When I dropped the scripts off at the pharmacy and stopped at the house, I talked to Andy about this.
“He definitely needs to be placed,” Andy asserted. “I can’t even handle him anymore.” At least he isn’t arguing with me – we are on the same page about doing the best for our son. But how can we really know what that is?
Jonah’s log book from school reads like a roller coaster. On Monday he had 6 aggressions. On Tuesday he had only one. Wednesday he scratched a peer. Thursday he threw a toy at a teacher. Friday he tried to throw a computer.
I hate the inscrutability of it all.
I hate the way my mother is falling apart over this; she doesn’t eat right, isn’t sleeping, and some days she just cries all the time. She refuses my help to find her a therapist or get on some medication. I can’t help her accept this and I feel like I have become her scapegoat and I hate that too.
Both she and Andy have indicated that they want to pack up and move to wherever Jonah is placed, when it happens. I don’t know if they just said that, if they really meant it, but I must stay here. I have a good job that pays well – much more than I could ever make in Oneonta or Utica. I carry the health insurance for all of us. I am the one who has the means to set up a special needs trust for our son, to draft a will, to set up life insurance, to afford a mediator for our separation, to maintain a home Jonah can come back to if and when he is able to do so.
It all makes me feel abandoned. I lose my child, my mother, my child’s father.
I lose. (Not that there are any winners).
Speaking of care for kids with needs. I got this by email yesterdya. Hopefully it’ll paste well. If not I will have to send you the email.
“What Happens When?..” Special Care Planning Workshop”
Presented by: William Van Evera, CLU, ChFC
Special Care Planner
This program will be a detailed, two-part program, presented on two separate Saturday mornings: March 5th and March 19th 2011, and will be held at the Clifton Park Halfmoon Public Library. The library is located at
475 Moe Road in Clifton Park.
The Schedule
Sat: March 5, 2011 – 9:30-11:00am
·Life Care Planning – will break down the process into specific steps to address the complexities involved
·Special Needs Trust – the corner stone of life care planning – we will discuss the reasons for considering this instrument as well as funding methods.
Sat: March 19, 2011 – 9:30-11:00am
·Government Programs – will focus on cracking the code of
government programs for families of adults and children with special needs
·Guardianship – is it the right choice?
·Letter of Intent – the most valuable document of all
William Van Evera, CLU, ChFC is a Special Care Planner with Mass Mutual Financial Group in Albany, N.Y. Involved in the financial services industry for over 30 years, Bill obtained his Chartered Life Underwriter (CLU) designation in 1985, his Chartered Financial Consultant designation (ChFC) in 1987 and his Special Care Planner certification in 2005.
Bill and his wife, Terry, live in Niskayuna, N.Y. and have three children. Their youngest son, Craig, now 22 years old, was born with Down syndrome.
Please secure your reservation for one or both programs by calling:
(518) 449-4532, or e-mailing: wvanevera@finsvcs.com…
You must have a reservation to attend.
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Thank you Jen!
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This is heartbreaking. ((hugs))
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