Annie is the middle child of my adopted sibling group. She struggles with Acquired Brain Injury, the result of her being shaken and beaten as an infant. Unlike some of the most severe cases of shaken baby much of her damage is invisible. She does have some vision loss and some quivering of her eyeballs but in the scheme of things she got off lightly, if you can say that about brain damage.
What Annie lives with is some frontal lobe impairment which impedes her judgement, her planning and some of the higher order thinking skills such as abstract reasoning. As she has gotten older these deficits have become more apparent and more of an impediment to living a full life. Her lack of judgement right now makes her quite a danger to herself, as she seeks stimulus and pleasure she is not making good decisions about keeping herself safe and is winding up placing herself in very dangerous situations.
To add to the mix Annie also struggles with severe Depression, ODD, ADD and RAD. For the last 17 months she has been in a rehabilitation center for folks with A(cquired) B(rain) I(njury). I blogged about some of my frustrations with her response to treatment. Since then she seems to have settled down a little, or we are just in a lull of negative behaviors. She is facing discharge soon from this program. We have to decide how we want to handle this. On the one hand she is turning 19 this month we could announce she is an adult and let her make her own way. Or we could seek guardianship and try to steer her to more treatment programs etc. The one thing we know for sure is that she is not welcome to come home right now. She is unwilling or unable to abide by the rules of the household and we are unwilling to have her with us unless she will. It is a standoff.
Today we went to a ABI treatment program to meet the Executive director and get some insights into what services they could provide. We were very pleasantly impressed. They have a relatively new program of long term residential services in group homes of 3 clients and 1 staff. Eventually Annie could be helped to move into an assisted living apartment. She would also be as integrated into the community as possible. The buildings were nice and open and airy. The staff all seemed friendly and very confident and outgoing. It has been the first bit of hope I have had on Annie's behalf in awhile.
Issues still to deal with, we would have to get guardianship of Annie, and we would have to figure out payer sources. She is still on the adoption subsidy which provides a medical card, but technically that expires on her 19th birthday. We would have to fight with Medicaid and the adoption subsidy people to see if we could get it extended until she turns 21 at which time she would eligible for the ABI waiver and that would cover her needs. I love this little hole in services that young adults fall into, where their child medical coverage ends at 18 and they are ineligible for the Medicare waiver programs until they are21. Exactly what they are supposed to do for 2-3 years is unclear.
So now we have to make a decision, how involved in Annie's life do we want to remain, because I have news for you any continued involvement on our part is not going to greeted with enthusiasm by Annie. Do we want to keep struggling with the black hole of Annie's needs or do we want to let her go and face the guilt of knowing she is incapable of taking care of herself. Either way we lose to some degree (at least our emotional health takes a hit), I guess the real question is which decision benefits Annie more? And from whose perspective?
2 comments:
I am the adoptive mother of a Shaken baby. He was severly shaken at the age of 9 months. He was placed in our home at 10 months. He is now 11 years old and has terrible anger issues. I am not sure if they are related to SBS. He is a wonderful loving child until you ask him to do something he does not want to do then he hits, kicks, screams ~ you name it. I am having trouble finding resorces to help us in the situation we are in now...living with a child who is growing up with SBS.
Any suggestions would be much appreciated.
You need to get him diagnosed as having ABI or TBI that is Aquired Brain Injury or Traumatic Brain Injury. Then look for programs that deal with rehabilitation for people with these. We are working with the Center for Comprehensive Services which is part of the ABI Mentor Network. Check your state departments of mental health/mental retardation as they usually have some services for this.
Many programs do not know what Shaken Baby is so you need the other diagnosis. They are the same thing. We had her diagnosed by her psychiatrist and it was backed up by the opthamologist who documented the damage to her optical nerves.
At the least he is eligible for SSI and school help. Get an IEP, even if he is doing okay with school right now.
Our biggest issues with Annie surfaced as she hit puberty and into her teen years and they were all behavioral, but were based on her cognitive impairments related to the brain damage.
With brain damage traditional methods of therapy and behavior management do not work and in some cases reinforce negative behaviors so you need to be working with therapist and behavior specialists who are familiar with ABI.
Good luck, Beth
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