The Rules have Changed...

You would think that after 17 years of being my daughter's mother I would have learned by now that the rules of life change on a annual or a semi-annual or even on a daily basis.  This is the case with my daughter. Since she has been home from the proctor-foster care experience, her anxiety has gotten worse.  Come to find out that for many, many years she has suffered with sensory integration.  This would definitely explain the need to always wear a pair of panty hose or two pairs of pants everyday. 

Anyway, trying to help her transition back into full time high school has been impossible.  She can not handle the large crowds and confusion that comes with all the kids walking to classes and all the conversations, she has sensory overload to where she has panic attacks. For over a week I could not get her up to go to school and her school psychologist suggested I keep her home and ask for hospital services.  That is where a teacher would come to our home to teach her the core classes.  Hence begins my battle with our school district.  Instead of them spending money for what my daughter needs and we were so close to the end of the semester, I picked up work from her teachers that Dani could complete at home, at her own pace and return to be graded.  And it was agreed upon to grade her only on the work she completed.  That worked out pretty good.  Dani was more relaxed, less anxiety attacks, but being home brought on a new set of problems...getting use to being home all the time with the realization that the TV would not be on all the time.  That part is still being worked on...anyway...during this time I discovered that the wrong IQ test was administered to her last year, which brought her IQ up in the mid 80's when her IQ for years and years have been in the low-mid 70's.  And the reason this was of major importance is that I was trying to get Dani into the LifeSkills class, less number of kids, less stress, etc.  But because of the results of the wrong test, my request had been denied.  Then after all the years of working closely with the special education department heads and teachers, I get this comment from one of the coordinators at the school district saying "What makes Dani so special now?"  After that comment I saw "RED"! Our school psychologist re administered the correct test to Dani which brought her IQ where it has been, and I could have taken this case further up the school board but by this time I am totally frazzled and exhausted.  So, here is what we decided to do...

I have officially taken Dani out of school for her core classes, she does to go high school for two classes and they are to be fun classes.  Right now it's peer tutoring and art.  Then I am home-schooling her for the remainder of the year.  Ask me if I know what I am doing...oh heck no!  But it's mainly to decompress, step back from all the stress and focus on those things that are important to a kid like Dani.  My main focus will be in her reading skills and life skills.  Years ago, my husband and I had our own trucking company and we drove all over the United States while home-schooling Dani in our big-rig.  During that time her IQ was up in the 80's.  We had decided to have me stay home so Dani could go to school for the socialization but what I didn't know then that I know now is that her lack of social skills/ques is from the FASD not because of potential sheltering.   But the funny thing is that when she went back into the public school system, her IQ dropped down to the low-mid 70's.  I guess that would show that there is something wrong in the public school systems.  Go figure!

So now since the rules have changed, my husband and I have our work cut out for us, but not so bad...this will be fun!  Danielle is one of those kids that learns from her environment not  books or lectures so we are excited to watch her blossom.

There is Life at the End of the Rainbow...

I can't remember the last time I wrote a post, seems like forever...but there were several times that I did sit down, in front of my computer, my hands ready to start typing...when...instant fatigue would hit...BAM!  I am going to try to catch up as much as possible. First, to recap, Dani has been living at a proctor-foster home for the past 5 months. She is not in State's custody, we are still her parents.  It was mainly so that we as parents could have a break, get more education under our belts because of her new diagnosis (FASD) and prepare for her to come home.  As a matter of fact, she is coming home November 23rd, the day before Thanksgiving!!!

Mom and Danielle, we had breakfast with our family and all us girls went down to Gardner Village in Salt Lake for the "Witch's Festival".

The time away has been more beneficial for me because I got to know myself, I mean truly know myself.  I never realized how much baggage from my childhood I was carrying around on my shoulders.  Things that had helped mold me into the "helicopter" parent I was.  So...with that I let go of a lot...and...started to discover how to be a better "helicopter" parent.  I know that doesn't make sense...one counselor told me to stop being a "helicopter" parent, to let my daughter do her thing, then the genetic counselor from UofU told me to "be the best helicopter parent there is because with Dani, I have to be involved all the time"!  But there's limits, both my husband and myself went through a TRANSFORMATION!  And we are super excited to have her come home.

Here are some good points to having my daughter in Foster Care: 1) It put Dani in a safe place, in fact all of us in a safe place to where we were not wanting to kill each other.  2) Dani got involved with a wonderful counselor at her school that has helped her with regulating her emotions.  Her meds were changed and she started to have a short fuse, she actually hit someone, so her counselor is helping her with these short-fuses, prepping her for the real world. 3) I didn't live a 24/7 stressed out life, took time for me, took time to be in a relationship with my husband. 4) I LOST MY JOB!

Here are some NOT good points:  1) I lost my job, yes I have it listed in the good points because I was so stressed out, my BP one day was 160/120.  Ok, that was a warning.  In loosing my job it was a blessing, but also stressful because of the loss of medical benefits and of course $$$.  2) I didn't have any confidence in the foster parents at all!  Don't get me wrong, I love them and appreciate all they are doing for Danielle, but I constantly worried about her meds, there were many times she didn't get them, they didn't follow the rules set by their foundation...it was just stressful.

After all that, we are looking forward to the transition of Dani coming home.  Things will be different, she knows that and the transition will be slow...real slow.  Things at home have to be real structured, not sure how I am going to do that just yet, but will let you all know, but IF ANYONE HAS ANY IDEAS, PLEASE LET ME KNOW!!!  I may be old, but not old enough to where I can't learn new tricks!

Here is a declaration:  Because of the loss of my job, I have stepped way back to rethink the rest of my life.  I have been in the medical field for almost 20 years, I have 16 years of experience of my daughter Danielle and I don't and won't get back into a job to where I feel terrible because I have to leave 15 minutes early to pick up my daughter or get her to an appointment.  So, I am looking to be a FAS, Family Resource Facilitator.  I want to give back what has been freely given to me, along with that my husband and I are going to be Foster Parents.  I am going to be starting a new blog about the journey of getting licensed, etc. so stay tuned!

Feeling Like I've Been Replaced...

Danielle has now been down to her new foster home.  Some of you don't know, part of Danielle's treatment is to live in a foster home.  It sounds terrible, but we still have custody of her, she is not a ward of the state.  With her down in Salt Lake, it gives her the time away from home, get into a specialized school that has a doctor and counselors that she works with everyday, along with small number of students in each classroom, structured, away from the main streaming of high school which was terrible for her.  Danielle does not do very good in large crowds, she has a tendency to have high anxiety. 

But knowing she is safe and this is good for her, I have been miserable.  For 16 years I have been her champion, her protector and her educator.  And I feel I have had my title removed, even though I know I will always be her mom.

There has been big adjustments not only in my home but also with the family she is living with.

A couple of weeks ago, Danielle and I had an appointment with Dr Lewin up at the University of Utah.  She is in pediatric genetics and specializes in FASD, she is top in her field nationwide, we were pretty lucky to get with her so fast when normally her waiting list is close to a year.  So with Danielle's history, photos of her growing up and photos of her birth family, along with several measurements she was finally diagnosed as FAS!  You have no idea how relieved I was to finally have a diagnosis instead of all these years guessing.  After Dr Lewin gave us her report I started crying because I felt like a huge weight was taken from my shoulders.  Her other disabilities are secondary to the FAS.  I am just waiting for the final report and all the recommendations Dr Lewin gave me, there were so many I can't remember all of them.

The family Danielle lives with are Tongan and I just love their culture.  They have accepted Dani into there family as if she was their own and believe it or not, she feels like she belongs.  She  feels safe...which just hurts me to the core.  I have so much guilt because I could not provide her a safe home.  I was thinking the other day that I should not have gotten married so soon.  It should have been just her and I for awhile, but I fell in love, still love my husband very much, imperfections (I'm not perfect either). So now Dani and my husband have to learn to live together, God willing.  From the time Danielle moved in with this family, they were preparing for a HUGE family reunion and they included Dani in their native dances.  She was so excited and so was I because I was invited to attend to watch Danielle.  So a couple of weeks ago I went with Danielle, there were close to 500 family members and I had a blast.  It was great to see Danielle feel so comfortable and all these people who gave her hugs, so much acceptance.  But again, my heart aches and I wonder if she will want to come home.  I guess I have to take one day at a time.

The hardest thing for me has to been to give up being so involved in her life.  I believe with all my heart that no one can take care of a child but his/her mother.  And with Danielle with another family, I worry that she is not being taken care of as if I was with her.  I think I was driving the family, Danielle's case manager, counselor crazy with my constant texts, emails, etc.  Not only was I driving them crazy, I was driving myself crazy.  So a couple of days ago I decided to back off and let things be.  This will give me time to concentrate on my health and my marriage. Time will tell!



This is her foster family, Lucy, Sepo and Mehli.




Mom and Danielle at the Family Reunion




Danielle getting the  final touches on her costume.  Her foster mom's, they are two sisters, made this costume for her.




Danielle and her room-mate are finally in their full traditional costumes, just minutes before they went on stage with about 50 other family members.  I was so surprised that she learned this dance and she performed it with such grace.  I was SO proud of her!



Where Have All The Good Times Gone?

Since my last post, Danielle has been placed in a proctor-home, not a foster home like we would think because I still have custody of her.  But this home is suppose to give her structure, rules, they are suppose to watch for her behavior that happens here at home, get her services and new evaluations (neuro)...well?  Not yet!  It's been close to 6 weeks and really nothing but a lot of frustration for mom!  At first she takes almost everything she owns, then wants me to bring more like her bike (which I said no) the right hand and the left hand don't know what is happening because within the first two weeks, no one knew about the special circumstances of Dani.  Talk about being frustrated.  Her foster mom (for lack of  better words for her title, which she is a very sweet and loving lady, couldn't ask for a better foster mom for Dani) didn't know that Dani could not be by herself so she sent her on a walk.  Dani doesn't have any sense of  direction, so I went driving around looking for her and getting more panicky because I could not find her.  Then I saw her coming back to the house, about a block away, pulled over and we had a conversation, she thought (her brain owie) Lucy said another thing, I was a little upset after I left because I had felt my daughters safety is being compromised. So I called the two heads of the foundation, left messages for her case manager, etc to arrange a meeting of the minds.  The meeting did happen and I was able to get things off my mind and there were reassurances, etc.

Well since that time, Dani doesn't like coming home because of the conflict between her dad and herself, she is not willing to own up to her part of the problem, like following our house rules, etc and I realize that it may be part of the FAS but where is the cut off, when is she suppose to take responsibility for something?  A couple of weeks ago, there was a major blow out with her dad, that on the way back to Salt Lake she was crying saying she had wished she never had a dad and that I shouldn't have remarried and it should be just her and me.  I was devasted, not knowing what to say...then we get down to the dance studio where I am to drop her off at, she immediately leaves the car, no backward glance, walks into the studio and gives Lucy a hug and continues her night with her new big family, leaving me at the door with my mouth wide open and tears getting ready to spill.  Lucy had to remind Dani to give me a hug.  On the way home I cried, balled my eyes out, thinking and feeling I had just lost my daughter.  She feels save in that big Tongan family, not safe within her own family.  I am still reeling over that, the feelings of loss are extreme.    There is just so much more that has happened that it still makes me cry so at this time I won't go into it.  Maybe my next post.

She came home this weekend for her eye appointment, new glasses and it was the same thing taking her back.  I can't help feel regret, where has the time gone, my time with her on a daily basis is probably over, what good have I done for her over the 16 years, why the problems now, I still tear up, even when I am typing this paragraph. 
'
This coming week, we do have an appointment up at the University of Utah to see one of the top genetic doctors in the nation to get a genetic workup on Dani.  I can't wait to hear what that report turns out.

On a positive note, Dani did go to Girls Camp.  She had a wonderful time, took on leadership roles, was a positive influence on the younger girls in her group, I was very proud of her.  One of the visitors and speakers was this young lady named Hannah.  She has multiple disabilities as you can see in the picture, but what an inspiration to not only me but to Dani.  Dani cried finally feeling and realizing that she wasn't alone with her disabilities.  I was grateful for that young lady and the inspiration she gave.

The picture above was the afternoon we dropped Dani off at her new home and the second picture is of her and Hannah!

Well to sum things up....I told the high powers of  being in this group that Dani is not to come home until we start some kind of family therapy.  I was told we couldn't necessary do that because that is part of the wrap-around program after she comes home.  My response was that something has to be done so that both Dani and my husband feel safe and somewhat secure in their father/daughter relationship and that I don't go bonkers.  The post-adoption specialist suggested/recommended that I get a hold of the FAS Network, which I have been involved with for years, but my husband hasn't.  The education will do him good because of Dani's brain owie (don't know how to spell that word, sorry).  I've already made contact, we will see, more details to come!  Stay Tuned...

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~