Random and Miscellaneous

I promised myself that I would start writing again when Z started school.  This is the first time ever that she has asked about school during the summer, she was excited to go back to the Deaf School.  Residential treatment is done, no traveling back and forth, just a normal start to the school year.  There was a new teacher but still a great start!  But just a month into the year, a teacher change!  I swear Z is a magnetic for things to go crazy at a school.  Z handled the second change well and I'm sure it will be fine but another teacher, really!

A week after school started Dave and I left on vacation.  We went to Vancouver, Victoria and Seattle.  It was a great trip with our long time friends.  We saw the sights, ate too much, walked until our feet hurt and for me it was too many boats.  Butchart Gardens is amazing and downtown Seattle was very fun.  I made them all go to the Chihuly Glass exhibit near the Space Needle and it was a so gorgeous, we all loved it!  But Dave and I decided that our next trip is back to Maui!

We were back one day and Z, O and I were off to the White Mountains for the Hands and Voices Family Retreat.  We were "chicken" about staying in the "dorm like" accommodations at the the camp so we got a hotel room.  Z had positive experiences in the kids activities and loved the "go carting" with O.  I did not appreciate the memento I got on the way home, a speeding ticket.  Z did not handle the car ride well and while she was tantruming in the backseat, I got caught by a speed camera. Of course, it would never have happened if she had been her sweet, happy self, right?

Home for a couple weeks and then again Z, O and I are off again.  This time to Dallas, TX for Z to have more GI testing that isn't done in AZ.  We couldn't have done it without O.  She loves Z, handle behavior automatically and Z relies on her for signing.  Bad behavior again on the plane, go figure?  But O and I agreed, it was a "piece of cake", only a two hour flight compared to the five hour flight from Florida.  Everything is relative!  It was good to get the testing done and the doctor did find some issues and still waiting for more results.  It was not fun for any of us.  Poor Z had to have a "clean out" before the testing so we had "poo" flowing freely.  O was a good sport, a great help and we all came home sleep deprived for sure.

In the mean time, Dave had two trips.  His mom had shoulder surgery so he headed off to Madison to be with her.  Home for one day and he's off to Denver for a work training.  Dave in Denver, Z and I in TX and both our cars parked at the airport!

We are all home now and not wanting to leave.  It's amazing how all three of us are looking forward to our routine at home.  School for Z, work for Dave, and what for me, not too sure?

Happiness and Joy

I think all parents would say they " just want their kids to be happy" in their lives.  We're no different.  Dave and I have often talked about how to tell if Z is really happy or if she's manic?  She can get very excited and hyper about her favorite things, going on a trip, eating out, Christina visiting.  Sure, she's happy but there's always this "manic" quality about it.  I've often wondered if that's the best it will be for Z?  I wonder too, if her medications have "dampened" her emotions?

Many times she can be truly excited about something small and it's very genuine.   You get a huge hug and kiss if you get her favorite snack at the grocery store or if you pick up a new shirt at Target or she gets a card in the mail from Grandma with a dollar in it.  It's an innocent, genuine thank you.

Recently, we have seen more and more of her truly joyful side.  There's no doubt it's real happiness and not just the manic side of her mental illness.  It's both sad and hopeful.  Sad that it doesn't happen very often and sad that it's a relatively recent experience. Hopeful, that there is joy for Z.

I first got a glimpse of her genuine, happy side on some of our last passes when she was in residential care.  I tried to capture it with some pictures because it's hard to even describe, we just expect young kids to be happy.  On one of our passes we were having lunch at a hamburger place that Grandpa Archie liked in the Midwest. The restaurant has these silly paper hats and Z really "hammed " it up for me with the hat.  She was so cute and funny and she has this very genuine giggle and laugh!  That laugh is so different from the stressed, forced manic laugh.  You have to know her well to really understand the difference.

This weekend was Fiesta Skate, the largest figure skating competition in AZ.  I've been involved in it for 25 years.  The last few years our Special skaters have participated in the competition.  Some years Z has been in the event and others she wasn't able to skate due to her mental illness.  This year she has been waiting for weeks for the competition, following how her dress was coming along and practicing every week. She would ask each morning if it was the day of the "skating show"?  Saturday was finally the day.  Z was so happy and she continued that genuine joy for the entire morning through getting ready at home and waiting for the events to start at the rink.  She greeted people at the rink and responded to others with a smile and excitement and giggles.  It's hard to explain the significance of this unless you understand how difficult it is for someone with bipolar disorder to maintain their mood and children have rapid cycles. She smiled through her entire skating program.  She was thrilled with the stuffed animals thrown on the ice after she was done.  She stayed around where all the skaters were gathered waiting their turn and was obviously enjoying the moment with her friends.  She knew that awards and pictures came next and was very good waiting her turn. 

After several hours I could see that she was getting tired and was struggling to maintain her emotions and behavior.  But I had this heart warming, rewarding morning and felt privileged to be a part of what seems to have been the longest period of genuine joy that Z has yet to experience.  I hope that she will have many, many more.  She deserves hours, days and years of joy!

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?

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.

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.

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..........

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!