Where I Am

I have been AWOL for a while. Part of the reason I have been AWOL is the busyness of the last few months. So, here are a few quick updates.

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HOPE

Hope is no longer receiving waiver services. The program is undoubtedly good for families inexperienced at doing their own case management. For us, the program took a lot of our time in meetings and the people involved  never really connected with Hope. Hope started with a new therapist in January and a new psychiatrist last month. She has a strong connection with the therapist and open mind with the psychiatrist. They are both within 20 minutes of the house which makes the logistics easier.

The physicality of life with Hope is still there. It is less frequent and less intense. We still use respite, but on a schedule that meets our needs. As Hope has somewhat  stabilized at home, the school saw more of her behaviors. This makes it easier to deal with the school. Hope is starting to want a connection with me. This is not easy, given the history between us, but we are working on it. Hope’s Annual Review with the CSE is tomorrow. I am sure one of the district’s main concerns will be Hope’s homework, or actually, the lack of completed assignments. Hope has done 12 out of the last 49 days’ assignments. I do not deal with Hope’s homework. I very clearly told them in September that homework should not be assigned. At that September meeting, The Dad said he would handle Hope’s homework. The CSE should be interesting.

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GB

GB is currently struggling. We had to change her medication because of increasing tics and weight gain. Changing medications is never easy. We are slowly increasing the new drug, Latuda, and decreasing the loxopine.

GB is just developing the capacity to understand what a birth parent is. She has spent a lot of time with Joel and Xsavier, trying to make sense of the relationships that were just words before our last visit to Michigan. It is pure pleasure to watch GB and Xsavier together. It is harder to watch my son Joel with GB. Joel is just realizing what he lost when he walked out on her. GB very much wants a relationship with him, but he will never be her “Daddy”.

The class she started in January is a good fit socially, but has too many students and not enough academics for her. We had GB’s annual review and ended up tabling it until June. There are no appropriate placements for her. I am seriously considering homeschooling her next year.

GB is still struggling with Hope’s lack of boundaries. Hope is into everybody’s stuff and steals regularly. GB has a harder time coping with this issue than the rest of us.. GB still hasn’t made peace with the fact Hope is forever. She is seeing a therapist that she likes a lot and I am hopeful she can make her peace with it.

I am struggling myself. The ramifications of the choices made to meet Hope’s needs are still catching me by surprise. I had no part in the life altering decisions The Dad made. I do not know if our relationship will survive. In an effort to get support for him, I shared my closest friendships. In some cases, I am now the one left out. Things he has said in anger, quoting other people, have made it difficult for me to trust anyone.  I pretty much keep to myself at this point.

Orlando was wonderful again this year. I am so glad I was able to go and be refueled. The people who started ETAAM are in different phases of their life and are moving on. I will miss them. There are some outstanding people taking over, but inevitably BeTa will not be ETAAM. Everything changes. I doubt I will be in Orlando next year.

I appreciate the people who kept me in their thoughts while I was trying to make sense of my life in the last few months. I am a blessed person.

Changes

On Monday, we had a very short meeting with Mary Poppins and she is gone. The Dad is considering taking a leave of absence from work so that he can continue working with Hope. He is not ready to put her in an RTF and I am not ready to have her 7 hours away. For the time being, we are at a stalemate. We continue to do things as a family and Hope continues to struggle. The school has upped Hope’s therapy to twice a week, individual sessions. Hope is again seeing an outside therapist. We haven’t seen the waiver people since September 17th. The case manager is coming out tomorrow.

Today was Kenny’s funeral. It was four hours long. The Dad spoke. I do not remember much of it, although I do remember crying a lot. I know Kenny is out of pain and I believe he is with God. I think the tears will pass. I am selfishly reluctant to admit I will not have Kenny’s friendship again on earth.

Everything changes and nothing changes- all at the same time.

When Things Change…

The last week have been full of many unexpected changes. It has now been a whole month without Hope attacking me.  This week I realized it has also been a whole month of me not being Hope’s mother. That is not acceptable to me. We have two different agencies involved with out family to help Hope. We saw nobody from either of them this week and Hope’s behavior hasn’t been any better or any worse. She has still raged, she has been nasty, and she has been physical with GB. Monday the newest worker, Mary Poppins is coming to meet. I have scheduled 15 minutes for this meeting. I plan on telling her I see no benefits for our family in her visits and we will not be using her agency’s services any more.

I now have over 12 extra hours a week available, since Kenny chose to let go of this world and move on to the next. I have done a bit of crying, but overall I feel proud of him…the courage it took to deliberately say “I am ready to go”. I want to have that kind of courage when it is my time. I kept a regularly scheduled appointment with my cardiologist and heard that I have been upgraded from “cardiac insufficiency” to “heart failure”. I go to St. Peter’s this week for tests that, among other things, will measure the ejection rate of my heart. It explains my ongoing fatigue and how difficult it has been to get anything accomplished.

Divide and conquer techniques have made life easier for GB. The school, in its infinite wisdom, decided GB could skip recess in order to mainstream. I am not sure of their reasoning, since I spent Wednesday and Thursday with Kenny and only had time to remind them, via email, that they could not mainstream her without my permission and they did not have it. I meet with the school this week to figure out the next step.

GB is still heavier than is healthy because of the loxapine. I printed of two healthy eating charts, one for me and one for GB. I will take them to Stapl*s to get them laminated. I hope, by making us more aware of what we are putting in our bodies, we can improve our eating patterns. If we are both doing it, it might be easier on GB.

Kenny’s funeral is Tuesday. For many reasons I have avoided church in the last year+. I will be there Tuesday.