Z comes to stay

Wednesday, September 21, 2011

School, school. school. What to do?

First day of kindergarten, off to meet the first of seven teachers!
For our family school is important.  We now have a second generation in our family of college graduates.  We have a joke that it's the girls in our family that go to graduate school.  My niece just headed to graduate school at George Washington University, where her cousin graduated from several years ago.  Many of the kids have gone to the universities in their own state and others have moved across the country to such places as NYU and Bowdoin in Maine.  It's really hard to understand that school is not a positive place for all kids when all around you it's not only expected that you go to school but that you excel in school.

Then we have our Z.  It just seems that she is a magnet for anything and everything that can go wrong in school.  It's a given that a student who is deaf and has mental illness is a challenge.  That's probably the one and only thing that everyone would agree about.

Just to give you an example of an "only can happen to Z" incident. When she was in kindergarten before we moved to the district with the "best deaf education" (not) she was with the teacher for the hearing impaired in the morning and in regular kindergarten in the afternoon with an interpreter.  Sounds like a great plan to meet her needs.  Well, one afternoon her interpreter was absent so the school didn't look for a substitute, just decided to send her back to daycare.  Just called for a bus and sent her to daycare.  Didn't call the daycare, Z just showed up!  Didn't call me, just sent her!  Never, ever in 32 years of teaching have I heard of any school doing that.  I can think of many kids in my classes over the years I would have loved to ship off to daycare or anywhere else but you just can not do that, it's public school!  That's how our school experience started and has not really improved since then. 

We have heard some incredible statements and been in some amazing situations such as:
"We don't know what to do with her so we just let her wander around the classroom"
"What are we going to do with her all day?"
"She has to change schools because state testing is coming."
"She's suspended from the hearing impaired program (after only six days)." And then didn't get any services as a deaf student for the entire the school year.
Oh yes, then there was the year when her class had  seven teachers and that's not counting the substitutes they had when there was not a teacher.
And last year when they asked me to help "transition" Z to another classroom and I ended up working as her interpreter/ aide for three weeks for FREE.

So, where does that leave us now?  Well, Z is at the residential treatment program in FL and I made a huge assumption that they would have "cutting edge" school program.  Big mistake!  My first clue should have been when the assistant principal told me that Z. didn't really "fit" in either elementary classroom at the residential program for deaf kids with behavior issues.  Heard that a just few times!  But the assistant principal; assured me that Z would spend time in each classroom so that all her needs can be met.  And I believed her!

Seems they don't really have a curriculum, or program or materials that you would expect from a school for deaf children. I find that so hard to believe but I am still  kicking myself for assuming that they would.  What's wrong with me for thinking they would.  Z arrived for the last two weeks of summer school then there was a break.  School started but it was decided that she would be in only one class and I'm still not clear why.  But my radar for teacher "double talk" had been triggered several times. I met with the teacher and the assistant principal on my most recent trip and thought we at least had a positive start.  THEN, the teacher quit and moved!  Yup, it happened again!  And the new teacher does not sign and is not a teacher certified in deaf education.  Can't even believe it!

soooo cute for the first day of 1st grade
My first thought is that she can be at home and get no deaf services so why does she need to be 2,000 miles from home and not get deaf services?  Let's just bring her home.  In my ever ready, parent advocate mode, I spent alot of time composing an email to the executive director about all the deficiencies in the school program.  But before I sent it I realized that it was not helpful and we just need to meet again after they have had some time to sort out the impact of this teacher leaving and see if they can realistically meet her needs in school or not.  But if they can't meet her needs, let's say they want her to stay with the teacher that doesn't sign and doesn't have any experience with deaf kids.  What are my options? 

I can just blow off the school portion of the residential program and let another year go by without a school program for hearing impaired kids.  I can bring her home and hope our district will do a better job but that seems rather unlikely given the track record over the last six years.  Considering that the district initiated her going to the residential program and in the meeting today they said they are "waiting" to see how she is before they consider a program for her after discharge. Not promising for discharge planning!   I could just give up on school all together and fill her days with things she likes and enjoys, skating, gymnastics, friends and family.  She always ready to go to a play or get on plane.  But I think she has potential that would be totally lost with that choice.  I can bring her home and do academics at home ( that was successful for two years) and she can go to school for a few hours for lunch, recess, speech, OT and to be with other kids.  So there would be minimal expectations for what school needs to accomplish.  Think they could handle that? 

School has been such a struggle for Z.  How can we build as many skills with her as possible, in a way that she can feel positive and be happy?  Maybe it won't be in school?  But where and how?

Monday, September 5, 2011

A Chance to Think

I am now in Florida for my third stay while Z is at the National Deaf Academy.  I go and see her twice a day and in between I have lots of time on my own.  This should make Clinton happy, I can't avoid my thoughts and feelings by keeping myself busy, busy, busy!  Heaven knows I have tried, even started doing Ancestry.com but because I don't know anyone here, I'm alone most of the time.

This weekend I find myself feeling sorry for myself.  It seems ironic that I'm here for one daughter that really is not able to have a conversation with me, I understand that. She tries but we mostly talk about her interests, today she was focused on Halloween, it could be a long two months until the holiday!

Then the other daughter who is great at conversation, refuses.  I miss her and I don't understand it. 

Not sure where that leaves me but I have time to think about it while I'm here.

Wednesday, July 27, 2011

Pity party and Catholic guilt

I have been home from the National Deaf Academy for six days and I'm faced with my old dilemma, I get depressed when I don't have a "kid" focus in my life.  I did better when I at least had a "kid" job but now I'm home, nothing what so ever to do with kids.  I've often asked "what's wrong with me?" because others my age (let's not go there!) look forward to the quiet and relaxation of retirement but not me.  I'm not done being a mom.  It actually never occurred to me when Christina was little and we were always busy with her and jobs that this would happen to me.  I can honestly say that I enjoyed all of the mom stuff.  Christina was a fun kid, she was interesting growing up.  I loved all of her interests and activities.  I truly enjoyed all the time I got to spend with her. I remember when we went to Salt Lake City for a skating competition and Christina and I stayed an extra day and went skiing in Park City. Even those couple of junior high years that weren't so fun for any of us, I tried to look at as a challenge. 

And she did exactly what kids do, grew up and went to college.  Again, she chose an interesting and fun place.  And we made the most of her being in DC and went as often as we could.  Even Grandma and Grandpa came for graduation on the Ellipse at the White House.

After college is different, not those long school breaks because it's time for a job.  No more cool "Parent's Weekends" at GWU.  No more month break at Christmas time.  I found myself feeling like I do right now, no kid at home, empty, sad and lost.

Then Kandi stopped over one day that fall after graduation and brought with her the little foster girl that she had that time.  As that little girl toddled around our house, I had one of those "light bulb" moments and we all know the rest of the Zainab story, so far. 

But now I have these empty days, my calendar that was filled with skating and gymnastics and speech and swimming is totally empty.  Not even a job.  I can come up with things to do but it just never feels the same. Don't even want to get up in the morning.  I have given up trying to figure out why I'm that way, I just am, it's ok that kids are my purpose.  Then the guilt creeps in, I still have my girls even though they aren't here.  My heart goes out to the parents in Norway who lost their children in the shooting so I should quit whining.  This is temporary and may be a life changing experience for Zainab  so I should "buck up" and quit sulking.  Well, maybe I can indulge myself and sulk and whine a little while longer.  I miss both my girls.

Monday, July 18, 2011

Swtiched at Birth or One Flew Over the Cuckoo's Nest

Z has been at the residential treatment program for deaf kids for a week now.  It all happened very fast once the agency at home decided to pay.  I am staying close by ( in the hotel right next door) to make sure she is ok.  The agency thought I was crazy when I insisted that I would not drop Z off and leave after a couple days. I had more orientation when we took Ch to college.  We had four days of parent orientation, granted some of that was wine tasting but the point was to make sure we were comfortable leaving our kids at the college.  I want to see that all those "mom" things are being done with Z, like brushing her teeth, combing her hair, clean clothes and matching clothes is a "biggy" for me.  That seems to be going just fine.  We had a rough start with her cochlear implants but now seem to have worked out the tech part.  I visit her a couple times a day and we watch part of her favorite videos and talk about what she's done that day. Their days are very structured and I'm learning the routine.  Staff is very nice and I'm finding out very quickly that I need more sign language.  It is very interesting being in a deaf environment, gives me just a glimpse of what it's like to be deaf in the hearing world.

We never tell Z ahead of time about up coming events, even fun ones, because she perseverates and it just ends in huge behavior problems.  Of course, she was thrilled about going on a plane and kept asking if we were going to Disneyland, going to see Aunt Sue, going to see the dolphins (Sea World), going to Grandma's?  O had said something the night before we left that helped me explain things to her. She said  not to tell her it's like the hospital because that is so negative for her.  Made sense to me, so I told Z that we were going to see a deaf school like Daphne on " Switched at Birth" and she kept asking if we were going to see Daphne.  I had to add that lots of deaf kids sleep at their school.  Thanks O, that helped alot. 

It's been ok, I've kept busy meeting everyone at the program.  I believe that the more the staff know me the better care Z will get.  I've even exercised in the tiny hotel workout room and did laps in the pool.  I look forward to our visits each day. Z seems good then lapses into being sad and asking if I can stay and sleep with her.  We made a joke that her new bed is too little and mom would fall out.  I try to be upbeat and ask everyone their "sign names" so Z learns everyones' names.  I thank the staff for what they are doing, I really do appreciate it.

The day I don't even want to think about is Thursday when I have to leave her and head home.  I remember the flight home from GW when I couldn't take off my sunglasses because my eyes were so red and swollen and it wasn't from the wine tasting.  Leaving your kids, there aren't words to describe..........

Friday, July 1, 2011

Old and New Places

June 25 was the 8th anniversary of the day I brought Z home from the shelter.  I recently drove near the shelter and thought about that day.  Now, those thoughts are all mixed in with the feelings about her leaving us and going to the National Deaf Academy.  And for me the feelings get all interwoven with old feelings about my sister going to the state hospital when she was 5 years old.  The emotions about how scary it was when Ch. was born and if we would have her very long are mixed in there.  And when Ch left for college, it did feel like I didn't have her for very long.  I know that Z going to residential placement is not permanent but it just feels like I don't get to have my kids for very long at all.

I don't know what Z remembers about the shelter or about the day she came home with us but I remember it clearly.  She was at the shelter about six weeks.  We had just gotten licensed to do foster care and she was one of the little girls they called me about.  They were looking for someone that knew ASL because she had no sign language at all.  I had always signed at school with my kids so I had the basics.  It's weird but I just knew it was suppose to be Z, didn't even really think about the other little girls.

 I have to say it takes more time to buy a car than pick up a child from a shelter.  They took me into a small conference room and I signed some papers.  Maybe ten minutes!  And they bring in Z.  She's tiny and dressed in a pink dress that's too big and shoes too big.  But it's obvious that the staff had tried to dress her up and fix her hair the best they could.  They handed me a plastic trash bag, the tiny bathroom size, with her belongings.  A couple pair of long pants, long sleeve tops, a washcloth, some socks, that's it!  I wasn't even told until we were leaving the shelter that she wasn't toilet trained, had to stop at Target on the way home and get diapers and a couple outfits and a pair of shoes.  We hit Nordstrom the next day at the "big Mall" as Z would soon call it.  The woman in the kid's shoe department was one of Z's biggest supporters for years and I guess we supported her also!

I will never forget how Z just took my hand and walked out to the car with me and home we went.  She didn't have any language to ask who I was, where are we going, was she coming back, she just held my hand.  She seemed happy to be at the house and we started learning signs that day.  "More" and "eat" are always good signs to start with.  She learned 100 signs the first month she was with us, I kept track on the refrigerator for the judge.  She learned 'bandaid" in those early days and we went through boxes of band aids that summer to keep that signing going.

I don't know if it was women's intuition or maternal instinct or whatever but I knew from the time I got the phone call about Z  that I would do whatever I had to do to keep her with us.  That three year battle to adopt her is another story.  Now we are faced with her leaving us to go to a residential treatment program for maybe a year.  I can't imagine what she will feel being left there and I can't imagine how I will come home without her.  I'm sad that she has to go to yet another new place. But this time she has a home to come back to, soon I hope!

Tuesday, June 21, 2011

12th Birthday, Hugs and Kisses

Truth be told, I did not have the energy this year to plan a birthday party for Z.  The entire situation with the possible residential placement and the continual meetings that are just agency "hot potato" about who's not going to pay for it has me totally exhausted.  But then last year I didn't plan a party either but we did take her to Disneyland for her birthday and had an outrageously expensive birthday lunch with all the Disney Princesses.  The Disney birthday was fun and for the two days we had no behavior, it was almost like taking a normal child to Disneyland.  A great memory!

Another secret about having a special needs child is that you don't have to tell them that it's their birthday until you're ready.  Today we had two therapies and a skating lesson and I knew if the focus was birthday then we wouldn't make it through the day.  She had a great day, made it through therapy and toward the end of skating I told her today was June 21, her birthday and we were meeting Dad for dinner at her favorite Mexican restaurant for taco, beans and rice.  Much cheaper than the Disney, Princess lunch of last year.  She was so excited.  Every week after speech, if we had good behavior we get ice cream at a Baskin Robbins near the hospital.  Her favorite thing is to look at the ice cream cakes and every week she talks about getting one for her birthday.  Well today, I told her after dinner we would get an ice cream cake for her birthday and I got huge hugs and kisses.  There's such a genuine and child like quality when she grabs you around the neck with kisses that I always get teary.  Then I told her there were presents at home and got more hugs and kisses.  Then I said yes to candles and got more hugs and kisses.  Dad had a pink, birthday balloon when we met him at the restaurant and he got hugs and kisses.  After choosing a cake that was way too big for the three of us, there were more hug and kisses while waiting to pay for the cake.  We headed home and sang Happy Birthday, blew out candles, opened presents and ate ice cream cake.  Took lots of pictures and video and treasured the happy evening, another nice birthday memory.

Thursday, June 2, 2011

Mental health makes me crazy

After Z's bad days I always spend time trying to figure out why she (in clinical terms) became unstable or ( in not clinical terms) why she flipped out.  Could be change in routine, school ended.  Her sleep has been weird again.  She doesn't feel good.  Her thyroid or meds are off.   Weather or full moon.  Etc. Etc.

So I spent a couple days doing that and then yesterday she really had a full blown tantrum, totally aggressive, in public. It started in the new swim school, the poor new swim instructor looked terrified.  I tried to explain that she might get her hair pulled or maybe a pinch but after 15 minutes I had to have the teacher help me haul Z out of the pool.  Z plops her wet screaming self on the pool deck.  I can't carry or even drag her any more so I just walk out and Z eventually follows.  She followed me out of the pool and shoves and pulls my hair,  this continues all the way out to the car.  My concern always is that from a distance it looks like I'm beating her up instead of the other way around.  No one ever asks if they can help, guess I can't blame them.  I finally got her in her restraint vest in the car and her seat belt locked.  But I can't get far because she now knows how to open the automatic doors on the van.  Can't drive with the door open so I pull over and facebook on my phone until she settles down enough so I can drive home.  Don't think we will go back to the swim school!

Today was better, she was so happy to go skating and so proud of what she's trying to do.  The girls at the rink are so sweet and helpful with her, probably why Z likes it so much.  Tammy, her coach signs and really likes Z so Z feels comfortable with her.  All around positive experience for her.

The even crazier part of all of this is what I do when Z is at her summer program and sometimes even when she's here.  I get to deal with the insurance and bureaucratic BS.  The secondary insurance is suppose to pay copays that the primary insurance doesn't cover but every time they change administrators they refuse to pay so we appealed the issue and won but now they still won't pay.  So today I tried to find out if I need to appeal again or can I send the court paperwork from the first time, no one is sure.  Duh, helps me, not.  Then the secondary insurance wants a letter from the primary insurance saying what they will cover regarding the residential treatment center including how long they will cover and what the copays will be.  That's not how insurance works and of course the secondary insurance would never commit to any of these requirements.  And I want to say to them,  what do you care about co-pays because you  don't pay them anyway.  I can't tell you how many times I have given my name, ID #, Z's name, DOB, address to a voice automated system so that I can talk to a person and given them the information again.  I know it's for security and I appreciate that but I really should be on a first name basis at this point or have my own special speed dial code.  In actuality the primary insurance has been good but the secondary is through medicaid because she's adopted through the state and the mental health portion is a for-profit mental health provider, red flag for anyone who has worked in mental health.  They have layers and layers of management people and amazing (not) customer service people that make it impossible to get a straight and accurate answer about anything.  But in all fairness, I have to say that we have a case manager who is always trying, very gracious, often gets my venting and is caught in the middle of all the layers. I'm convinced that the system is designed to create mental instability so you give up and don't ask them for anything, ever!  If you think this all sounds very confusing and cynical, you are exactly right.  Can you imagine my state of mind and list of questions when I get to meet with the medical director of the above mentioned mental health organization next week?  Our grown daughter used to say "you don't want to deal with my mother", this may be one of those times!

Monday, May 30, 2011

How do you write about mental health or lack of?

I jinxed the weekend by writing on FB that Z had two great days.  She was really happy and fun.  Then she got stuck in her cycle of perserveration where she talks about the same topic over and over and over again until she escalates to a full blown tantrum.  The topic can be a  favorite and fun, it doesn't matter, it's like a record (remember those?) getting stuck.  Sometimes I can stop the pattern if you catch at the very beginning but not always, nothing is ever consistent. Sunday we had to leave the pool party early, even before dinner because she was perseverating.  She started crying and sat on my lap, which sometimes can signal the end of the episode but when she grabbed my glasses off my face I knew we are headed for trouble so I suggested we go.  She was very willing to leave.  I didn't want her to escalate at the party even though it was all family, Z stands out enough already.  I don't like others to see her totally melt down and it's scary for other kids.  Having a deaf child in the car (she had her cochlears off because she was swimming) is the ultimate time out, I can totally ignore her and sometimes that makes her mad.  She started yelling in the car and in my desperation while driving I signed that if she didn't calm down I would call the police. And it worked!  She went back to respite care.

The next day she did great at respite, I picked her up from their family gathering and she was excited about going to gymnastics and seeing dad. She did great in her little gymnastics class, she's excited to do a flip on the rings.  On the way home she started to perseverate about her bed at home.  We sit down for dinner and soon she's yelling and threw her place mat at me.  I had already removed her plate and drink, that's from past experience of cleaning up when I didn't!  She grabbed for me and hitting, Dave and I are trying to escort (aka drag) her to her room.  In the process we have to get off the cochlears and she got in one good swing at me.  We get her to her room and now we have to listen to banging and kicking her door and yelling.  Not pleasant to continue eating our dinner.  Dave takes the dog out for a walk, leaving his dinner for when it's quieter.  I finish mine quickly so I can clean up.  My philosophy is that if you act up during a meal then you aren't very hungry so as far as Z was concerned when she comes out of her room dinner is over.  I always think it's interesting that she never asks for things after her tantrums, she knows!  After about 20 minutes she seems calm so I go in her room and she has wet her pants on the floor, which is typical.  I have her clean it up and put her wet clothes in the washer and get in the bath.  She had her meds before dinner so she's now getting sleepy.  Bath, pj's and to bed.  That's how it goes, in the time span of an hour she went from happy and proud doing flips on the rings at gym to being violent and getting dragged to her room.  That can be a day in life of Z. Whew!!!!!

Thursday, May 26, 2011

Revelation in the shower

Before I jumped in the shower this am I read parts of the morning paper and was really touched by the comments of the victims' families of the Tucson shooting regarding Jared Loughner.  Here's group of people that have every right to be vindictive and vengeful but all felt that the decision for Loughner to get treatment for his mental illness and then a possible trial at a later date was the compassionate and right decision.  Wow, that's the kind of people we need in our country! 

The question for myself is, can I be equally as forgiving and compassionate about all the staff in the hearing impaired community that wouldn't or couldn't deal with Z's mental illness?   And especially those that were down right mean to her.  And now because our family will be split up and Z will move from home, can I let it go?  With the survivors in Tuscon as a guide, maybe I can.

Wednesday, May 25, 2011

Will our journey take us to Florida?

Several weeks ago the school district decided they wanted to send Z to the National Deaf Academy in FL.  It's the only school in the country for deaf kids with mental illness.  Of course, the bureaucracy about which agency would pay reached all the way up to several state department level meetings.  I was sure the decision would stay muddled there and never be resolved.  But I was proven wrong today when the state reversed it's decision and it appears they are going to pay their part.  No details yet.

I have such mixed feelings.  On one hand it could be a life changing opportunity for Z that we cannot pass up.  And it's not forever.  But she's only 11 years old and has been through so much.  It will split up our family, I will go back and forth.

I'm still so angry at the school district, I can't help but think if they had just done their job we wouldn't be where we are now.  Z wouldn't have leave her family and friends and all those that love her and go across country to school.  With the exception of one teacher, Z has never been in a class that has had a teacher of the hearing impaired, deaf peers, a curriculum and staff willing and able to deal with her behavior.  This year she has had NO services for deaf kids.  She has been shuffled between teachers and schools.  I could go on and on but the bottom line is that the district has made major mistakes and hopefully we won't get pushed into a legal situation because they will lose, big time.  Having said that, there have been a few great and caring people at school, that have actually saved Z and the school district!

I hope that I can deal with this change without my usual "cry baby" coping so I help Z make the move.

Sunday, May 22, 2011

Touching momemts

There is always so much chaos surrounding Z that I have to make myself note the touching and funny things she does.  This week she was trying to tell me that she "farted".  It answered my question about, what does a fart sound like to a deaf person?   Now I know, Z held her nose, pointed to her bottom and said "woo woo".  It was hard not to laugh, she didn't quite have to noise right but it was such a kid thing to do!

We were waiting is in line yesterday to get lab work done, it was a long line, everyone lined up outside the lab door.  An elderly man who looked very frail and sick came in with his daughter and people made room so he could sit down to wait.  Z went up to him to shake his hand ( she does that all the time, sort of a mini - Walmart greeter) and I explained that she was deaf because he was trying to chat with her and called her back to wait with me.  She patted his shoulder as she walked back and he said "I'll remember you for the rest of my life".  The woman behind me started to cry. Z has those moments of compassion that touch so many. 

Reminds me of Christmas Mass when she dropped my hand during the Lord's Prayer and walked over to an elderly man across the aisle and took his hand.  He was very tall so the contrast of this little girl in her red, satin Christmas dress looking up at him was a picture.  There was lots of "aahh's" and after Mass a man said to me that what Z had done "made his whole evening special".

That's our girl, she has this compassionate side that is so touching and spontaneous that you just have to love her!

Sunday, May 15, 2011

Where to start?

I have been wanting to do this blog for a long time but it's so hard to know where to begin.  As our 8th anniversary of Z coming into our family is approaching I decided the time to start is now.  I think about over the 8 years and the challenges never seem to end.  But then the sweet, funny and endearing times always over shadow the often despair.  We didn't know when I picked up the little 4 year old girl who was deaf from the shelter what other issues we would deal with.  Her mental health issues multiply the challenges and make it so difficult to find a place for this little girl that doesn't fit anywhere except at home.

Somewhere I read that you should write in a blog like you would write to your sister, the above is not how I would write to my sister!  Tonight I'm remembering how not long after Z came to us, she decided to make her own earmolds ( she wore hearing aides at the time) out of playdough and shoved hot, pink playdough in her ears.  It was a Holiday so I knew that I didn't want to sit in an ER for hours to deal with playdough so I had Dave hold her head while I carefully picked playdough out of her ears with a tweezers.  I got it all out and the lesson learned was to better supervise the playdough.  It's funny memories that I want to write about along with the agonizing moments that come with Z.