Support for Caregivers - Me; and Return to RTF

Dear SB and Cousin R,
I cannot tell you wht it means to me to have you in my corner. It means everything to me.

When a parent has a child like this, their friends drift away. When someone asks me how I am, I tell them, and who wants to hear about such things such as what Rachel and the mental health system are putting us through?

I NEED SUPPORT. Hearing your words lets me know SOMEONE is out there listening to me, boosting me, supporting me, and I need that more than anything.

I don't think most people understand that caregivers of these children need a shoulder to cry on, an ear to just LISTEN to. If you have no solutions or words of wisdom, it's okay, just reflect back our (my) feelings, and let us (me) know you're there, holding us (me) up.

I think that's one of the most difficult parts of this is feeling abandoned by so much of my community.

The two of you, in your comments, gave me so much strength, I've been able to stand up for myself and Rachel even more, and to spend more quality time with Joey, and demand more quality time with my husband Sam.

Joey has been doing well enough emotionally, that we're being downgraded from Mobile Therapy to Outpatient therapy, which worries me. I mean, I'm thrilled that Joey's doing so well, but his Mobile Therapist, who comes to our home for 2-3 hours per week, and supports Joey, and me for Joey, will no longer be there for us, the state is not allowing it. Now we'll have to go into a cold office and start all over with some new for one hour per week.

But how do we fight the system? I filed an appeal, but the system is set up so that the evaluating psychiatrist, who had never even met Joey, was the same psychiatrist to review the appeal! How is that objective??

So even less support available to us.

We are very blessed to have a congregation that does everything they can for us, but even a lot of the folks there have pulled away from us as Rachel has gotten less well.

Anyway, the less restrictive hospital agreed after much arguing to meet our demands, and they are slowly trying to wrap their heads around the fact that even though they don't agree ith what we, the parents, want, they have to at least try to comply with it. They're not complying fully, but at least we've got a start. There'a an outside social worker conference calling with our family therapy sessions, to guide them onn how to act more appropriately with us. I.e., we're no longer being blamed for having caused these problems in our child. Instead we're focusing on how to make our relationship better with her now, which has not yet been done in over two years.

Also, the in depth testing is being done, finally, which should show them once and for all that they are dealing with a child who has a deep seated mental illness, and not simply behavioral issues from bad parenting. Why is the Mother always blamed for everything???? The testers have already said off the record that see signs of psyhotic tendencies and fetal alcohol spectrum disorder. Hey, Mommy knows what she's talking about! Imagine that.

I'm feeling so much more at peace now. Like finally someone's listening to me. I don't know if my child will ever return home, but at least a step os being taken to determine wht we're dealing with, so they can adjust the treatment goals and medications accordingly.

Sarah