Friday, May 25, 2012

Atypical Atypical


Lots of parents have multiple special needs kids. All of mine have had special needs, the usual alphabet soup. GB is FASD, with an IQ 2 standard deviations below average. She is also Bipolar I with psychotic features. We added the diagnosis of Autistic 18 months. I don't actually think she is autistic. I think there is a lot of overlap between FASD and Autism and that the evaluators preferred to see Autism. There is more funding, at least in New York, for Autism then there for FASD. The NY educational system doesn't have a clue what to do with FASD students, so having the Autism label gets us the right services, and we build her goals around her needs. 


GB should have the most intensive needs of all my children. When she did, and we managed her world around her needs, she did well. She was doing so well, we thought we could add Hope. I knew it would be a rough adjustment. In the beginning, Hope was as difficult as I expected. Now, 21 months later, she is more difficult. After she is home from school, Hope tantrums at least 4  days a week. GB fends for herself, using the coping mechanisms she has been taught. I do not know how to meet Hope's needs at this point, but I know exactly what GB needs. I just don't have time to meet them. I am too busy trying to contain Hope. This morning I am tapping myself to Lisa's Trauma Mama Text.


The shrink said yesterday that when Hope is hospitalized, the extreme stress on GB will go away and she will go back to being my normal GB. I doubt it is that easy and I would prefer not to hospitalize Hope at this point. So, back to surviving day 3.

6 comments:

Natália said...

I'm sorry to hear everything is so difficult with Hope :(
Maybe this post will help?
http://lisajordanpuddin.blogspot.com.br/2011/01/before-and-after.html

Giulia said...

Hello,
I am sorry for Hope.

However, I understand you doubt about what said the shrink.
On the other hand, don't you think that GB would feel at least better if Hope is hospitalized ? Even if she does not come in her typical self, it can only improve her health.
And if you don't have the time to meet GB's needs, then, earlier or later, her health can only worsen.

I understand that you are not happy to hospitalize Hope. No one is happy to hospitalize her child.
However, if you don't do it for your sanity, do it for GB's sanity.
Not having the time to meet GB's need is indeed a very good reason to hospitalize Hope. Because at the end, even if Hope gets better, GB's health will suffer a lot, and the vicious circle will only continue.
And Hope will unlikely get better like that, she has so intense needs that home is not enough for her now.

If one of your children were having a heart disease which required hospitalization, you would not wondered twice if you gave her up or not. You would bring her to hospital because she needs specialized care that you cannot provide : you can provide home, food, affection, and fighting for your children needs, and it is already a lot.
It is the same for hospitalizing Hope because she is way too unstable. You don't give her up, you just make the way she receives the help she needs and that you cannot provide without letting GB with unmet needs.

No one will ask you to be perfect. It is hard to let someone we love at hospital, but as we say in French, "it is a harm for a good".

Anonymous said...

Is your respite still not in place at all yet? It seems like even if you had someone coming in for a few hours who could be skilled enough to be independent with Hope so that you could have some one-on-one time with GB, that would be a big help.

Deb

abrianna said...

I understand why you don't want to hospitalize Hope, but you already are not safe with her and you cannot tend to GB the way she needs. Hope is willfully trying to hurt you.

Neither you or GB are safe now with the status quo.

Jane said...

It's a very tough situation any way you slice it. In our experience, hospitalizing one child may make life easier for the other, but there is still a lot of stress. I will just pray that your situation works out in a way that benefits all.

Jamey... said...

I'm sorry it's so hard right now for everyone. I don't have any advice, but I just wanted you tell you that you're a big encouragement to me. On the days that I don't think I can make it I remind myself, "if 'GB's Mom' can do this then I can do it too". Hang in there!