Let It be Written...Let It Be Done!

Today was the day of all days.  Today Dani and I met with the team that was going to coordinate, with me, the move to the foster/group home for her treatment.  I was scared half to death because of the unknown but I stayed strong for Dani because she had her own fears, I didn't want to add on top of hers.

There was the co-founder of the proctor program that Dani is getting her treatment with, the head of post-adoptions here in Utah, two case workers, Dani's new foster mom and the two of us.  For the first little while there was a dialogue between Dani and the Co-founder of  "Foundation".  He asked her if she knew what was going on, how she felt about it, what she felt were her worse behavior problems, etc.  This went on for awhile and then it was question and answer time, were we discovered what the rules will be, her new doctor and therapist, what everyone is doing to help her during this time.  She will be evaluated every three months to see where she is, depending on where she is in her progress will govern when she can have visits with us.  For the first two weeks there is no contact with us, she needs to form a relationship with her new foster mom and they will keep her pretty busy.  There will be therapy that starts with her, then her foster mom will be added and then Dani's dad and myself.  The goal is to have her  come home and be able to live together instead of feeding off of each other's bad moods.  It's a very bad cycle in our home.

I had packets ready for the team which included a letter from her psychiatrist and therapist, then a mental health assessment from her therapist, her last neuro-evaluation from the State Hospital and her discharge summary, anything that would give her diagnosis.  Then I had to write a letter on how much my family could contribute to her treatment.  That was the hardest letter I have ever had to write.  At this time we couldn't afford to help out at all, but the miracle was this...Dani has Medicaid for her special needs, after Medicaid pays their portion, $1500.00 is owed per month.  We receive an adoption subsidy that was raised to $865.00, then there are two funds that sit there waiting to be used for kids who need treatment.  It's either use it or they loose it.  So that brought us down to owing nothing.  But the best part is that the co-founder said, if that doesn't work, they will accept what they get, don't worry about anything.  You have no idea how much weight that took off my shoulders.

Everything about the meeting was extremely positive.  For every negative about Dani, they turned it into a positive.  For example: Dani has a tendency to take scissors to her clothes, trying to create her own designs, at that time I was told that the foster mom is a seamstress and she can help her with those creations.  There are other factors and information but at this time, my mind is extremely tired.  I will probably remember more tomorrow.

After the meeting, on our way back to the facility she is staying at, she got extremely mad.  Mad that she has so many problems because she has been to the BHI, State Hospital, hospitals for evaluations, etc.  I told her not to be mad at her because this is not her fault, if she wants to be mad at someone, be mad at her birth mom, not mad at herself.  Told her this is something she can talk to her therapist about and I hope and pray she will come to terms with this.

Her psychiatrist here had started her on a new medication, Latuda.  Dani visited Dr C this afternoon and Dani said she doesn't feel as fuzzy headed as she has, her thinking is clearer.  Dr C said that her eyes were clearer and she made more sense.  This is a good start, this is good.  It's going to be a long road but worth it.  A lot of work but it will be a journey or self-discovery for all of us! 

Sorry I am jumping around but I just remembered something, Dani was excused from the room and I asked them if  while they were talking with her if they could detect any of her diagnosis.  There was a resounding "YES".  Then immediately they all started talking about things that they were going to do for her.  Another neuro-psych evaluation, I am to contact Dr Llewellen up at University of Utah, she is the top of her specialty, genetic testing for FASD.  It will take a few months to get in with her but they said to do it.  They also said that she may be 16 but she functions at about 8-9yrs of age so how to deal with her as far as chores and instruction will be handled differently.  I was thrilled they were brain storming about my daughters future.  They are also preparing her to get involved with this program, I forgot what it was but I think the acronym is DPSD.  If I've got that wrong, sorry, but this program will help her get a job, not matter how many hours it is, housing, help her get the quality of life she so deserves.  I couldn't ask for more...this gave me so much hope, I left that meeting feeling better than I have in a long time.

Is It her Dreams...or Mine?

Just a few days ago, my heart was just torn in two when I found out from Dani's doctor that she wouldn't be coming home and that her future looked bleak.  After that appointment I went home and was basically a wreck for about two days.  I mean no sleep, no appetite, except my desire for Pepsi, cried all the time, just having that feeling of hopelessness.  Came home and wrote a very strong letter to her birth mom, which at that time felt pretty good.  But it took my daughter and niece to wake up and "smell the coffee".  Dani's mom is mentally disabled also, and she can't make rational decisions or choices.  She was a product of incest and I think because of that, her mother and family treated her like crap.  No one was standing in her corner to get her the help she needed.  So when her own mom died, no one stepped up to take care of her, she went to the streets, met the first guy who would marry her and then got heavily into drugs and drinking.  But there is the difference, no one was in her corner getting her the help she needed, but for her daughter...I have always been in Dani's corner, supporting her, being there when she fell, cheering her on.  After that realization, my thoughts and feelings turned to sadness.  Sad that genetics is so mean, that it can ruin a person's life.  I couldn't hold her responsible for the choices she made, she trusted people blindly, including her therapist who told her taking her anti-psychotic medications would not hurt the baby (yea right).  She and Dani share the same lack of  rational thinking. After that conversation, I refused to believe that Dani's life is ruined nor am I giving up.

In speaking with my friend, it's always good to talk to someone that doesn't know all my dirty laundry but with someone who doesn't judge me or interrupt or get mad at what I am thinking or feeling.  I talked with her because I was still grieving pretty heavily...she said that I wasn't abandoning her or giving up on her, the best kind of love a mother can show her child who needs is to get her/him the help that child needs desperately. By not doing that the child suffers tremendously.  That made a lot of sense to me. We continued to talk and I realized that it wasn't her dreams I was grieving about it was mine.  I think my expectations were way to high.  So I have had to readjust my thinking seat belt, relax and let Dani take the driving wheel and see where she can take me.

My husband and I don't believe she won't come home, we have that hope in our hearts and we believe it.  I think it's just that during summer there is no structure, no real boundaries as there is during the school year.  So, next week she will probably go to a real nice group home down in Salt Lake, she will get the help she needs and the retraining of the skills she learned while she was in the state hospital.  And that is OK with me!

Since she has been in the other facility these past few days, she has been a different young lady.  Doesn't seem too out or control, more relaxed can focus easier.  This is a good thing for her, mom just needs to let her baby girl fly now.  We have a year and a half left until she is 18yrs old.  Do you know how scary that is for me? I have so much to do to prepare her and I can't do it by myself, I will have to rely on the services the State of Utah has to offer. My new dream for her is to have as much of a fulfilling life as she can possibly maintain.  One other thing my therapist said was "what you feel you project onto your daughter.  Doesn't necessarily mean that is what she is feeling. Let me discover what works for her, she may not need to have to have a loving relationship with a man, but maybe lots of friends that give her a sense of love is all she needs or wants.  Don't make those decisions for her, let her do the discovering.  She knows you are there and will support her, let her spread her wings during this time while she is away from you and when she does come home, sit back and watch her wings open up.  You will be amazed at what you see!"

So, since it is Saturday, and I am home alone until my grandchildren come over this evening for a sleep-over, I have the opportunity to sit back and re-evaluate what my dreams are for her.  She may not graduate from high school, she may not be able to hold down a full time job...but that's okay, my only dream for her is...to be the best person she can be within her limits!

Mom Needs Help...Too Much Pain To Handle!

I am so sorry it has been a long while since I blogged, things have gotten pretty busy here, what with work, school ending, worrying about Dani during the summer, marriage, you name it, it's been there.  But I have learned this evening how much I have missed blogging.  During those times it was a great release for me.  So I am back to doing it again...and now I need help...

How does a mother of a special teen like Dani (speaking about myself) get through the pain of dealing with the mental illness of a 16 yr old?  Dani's main diagnosis is FAS, then the next step down is Schizophrenic, then the steps just progress down.  But four years after being in the state hospital, she starts going down hill...again.  But this time worse.  She has been creating her own reality by telling stories, for example; telling her friends that she is sexually active with many guys, she smokes and mom and dad buy her the cigarettes, she has been raped several time and the lies continue.  And she totally believes this!  She has become more oppositional/defiant, doesn't follow the house rules, puts on a good face after her counseling session, comes home and excited about the progress, then the next day...forgets everything.  It has been so hard and so painful to see her get sick again.  Maybe she wasn't all the way well in the first place.

I have to work full time and so does dad and when it's summer she is by herself, something she can't be, but alas there are no summer programs for teens with disabilities here in Utah.  So what other choice do I have?  Things have gotten out of hand that I have been looking into a group home situation, which I did find one in Salt Lake which will be wonderful for her.  We had an appointment with Dani's psychiatrist this afternoon, I was crying and beside myself because of the turn of events, she knew that Dani was going to get worse and immediately agreed that this group home that I had contacted would be the best place for her.  She wanted to also change Dani's medications so we put her into Archway.  It's a temporary holding facility until other arrangements are made, or in other worse also, its for those teens who get in trouble with the law and they are mandated to this place. She cried, almost a major panic attack when she found out and of course, I am not being the strong one, my sweet husband is being that for me.  The doctor called in security to help us get her across the parking lot.  I wanted to grab her and run away because of the pain I was seeing and the tearing of my heart.  I couldn't handle it, this was worse than taking her to the State Hospital, maybe it's because she is now 16 and I've seen her lose friend after friend.  I just wish my heart and soul would stop crying.

How do I get over the feeling that I am abandoning her, that there should have been more that I could have done, the guilt?  One thing I did do, and I will probably go to hell for this, since I know her birth person (to me she is not a birth-mom, she doesn't even deserve that title) because she is my ex-husbands niece, I sent her a very strong email about how angry I was at her because of the choices she made while she was pregnant with my daughter.  I let her know of all the things Dani will not be able to do in her life, etc.  I am still very upset with her.  I hurt because of all the things she won't be able to do.  One of my daughters called me from California this afternoon just crying her eyes out, she is so much like me, and she said "mom, what kind of life is left for Dani if she can't do these things?"  Trying to pull a rabbit out of my hat to give her some comfort, what I told her rang true to me.  She can volunteer her time to a cause that she wants...and that's all I could think of...that's how torn apart I am, I couldn't think of anything good.

What am I suppose to do?  How am I suppose to feel?  How do I handle this to get through the day?  Can anyone help me?  Someone told me once that I have to mourn the child/adult I had envisioned for my daughter.  My hopes and dreams for her, well those images are gone, how do I build new ones?

This picture above is her after she cooked me breakfast on Mother's Day...she is my angel~