Getting Old

Hope and GB both had a good day yesterday. They helped the Dad put their laundry away, ate a mountain of homemade waffles, and went with the Dad to have ice cream with his mother. Hope lost it towards the end of the day, but it was late enough to put her to bed. They both got up with smiles and went through their morning  routine with ease.

When they got off the bus, the Green Eyed Monster was back. GB had gotten another gift at school today. Hope articulated why she was mad very well, but got stuck there. She refused to do her school work correctly and insisted the pre-packaged ice cream bar GB got was bigger then the pre-packaged ice cream bar I gave her.  I gave her a time in, but all I have to show for it is some new bruising. It is looking like a long afternoon.

GB's real birthday is over a week away. The Green Eyed Monster is getting old. I am grateful for my long weekend get-a-way- no matter  how much payback will be waiting for me when I get back.

The Green Eyed Monster

`GB had a crafty birthday party yesterday (because I will be in Orlando next week!!!!!). It was combination of NT and special needs kids. She loves crafty stuff and with a couple of  stress-relief breaks, she did well. So, this post is not about GB. My Green Eyed Monster is 43 pounds of pure adrenalin. Hope woke up yesterday, raring to make her mark. Chairs were flying before 8 am. Hope was very clear- she did not want GB to have friends, a birthday, a party, gifts or a good time. It.was.not.fair. We looked at pictures from her party and I had her tell me about each picture. She remembered how much fun she had, what presents she got, and who was there. I asked her if GB had done anything to make her  birthday  less fun. Hope looked puzzled and said no. I told Hope that GB had let her have a great birthday and I expected her to let GB have a great birthday. The arms folded, the death-ray stare crossed her face, and she shook her head no. Hope had real rages yesterday- the kind we haven't seen in over a month. Adrenalin fueled, fear and anger driven- I am so glad she is still so small. She was still fighting herself when she went to bed.

She woke up this morning and the Green Eyed Monster was gone. Until the next time.

Payback

The Dad is home and guess who is getting ALL the payback for him being gone? That's right, I am. Me. The Mom. And Hope sure has a lot of payback stored up. She was back to throwing chairs this morning. Not to be left out, GB is fixated on her upcoming birthday. A steamroller with curly hair and 9 candles. The Dad is back in super stress mode and if I hear on more muttered under the breathe  criticism of how I handled the, girls or what shape the house is in,  or one more snide remark about setting off the chair thrower, I may be single again. Can single women go to Orlando?


To top it, off today  is yet another SNOW DAY!

Wednesday Morning.

The house is still. The cats got up with me,but everyone else is sleeping. I am physically tired and emotionally spent. Today is one of those days where the keyboard is not my friend.

One Minute...

I have been holding it together, one minute at a time, for 464 minutes. I have given up on actually doing anything today. Hope is in my bed, quiet for the moment. GB is sitting on a floor pillow next to me. They are watching PBS. Snow today, school tomorrow. Has.to.be. It is today's lifeline.

Yesterdays gone, yesterdays gone.

The Dad left before 5 am this morning. He and his (older) brother are on a road trip to see their cousin and their terminally ill aunt. I don't begrudge The Dad that time. I am counting the seconds until  I am not the only line tethering my family to this world.  Not that they are well grounded when the Dad his here- But at least, in the back of my mind, relief is minutes, hours, a day away. He won't be back until Thursday. More than a day, is more I can put my mind around.

Hope went out with us to three different public places yesterday. Each time The Dad wasn't with us, gabbing with a friend or what ever, Hope threw a tantrum. Not a rage, not a meltdown. A tantrum. No adrenaline, no cortisone. A totally for show tantrum, for the sole purpose of  embarrassing  me. I didn't let her embarrass me, but by the time we got home, I was bone weary.

We stayed home all day today. They are off tomorrow. I think we will stay home tomorrow, too. I told Hope that I can not stop her from doing her wango tango. What I can do is remove the temptation of having an audience to play for. She will not go out in public with me until I am convinced she will chose to behave.

GB has a cold, I have bronchitis. A couple of days in my warm house with my fireplace  is just what I need. The girls are asleep and in five minutes or so, I will join them. One day at a time.

D's Gone

New post on other blog.

Your Government and Mine

Yesterday, two letters came in the mail. One was from the DDSO, who provide services in my state, which said GB was not eligible for services. The second letter was from the psychologist that did the evaluation on GB and said she was autistic. This letter said GB required DDSO services. I called DDSO, found the name of the person who made the determination that she was ineligible, and called him. I told him I would fax the letter to him. I went to St*ples and faxed it. Before I was back in the car, the DDSO man called back and said GB was now eligible and since she is almost 8, she was eligible for life. However, everything in the computer said she was ineligible, so it will take a couple of weeks to reenter it correctly.

I don't know what services are left with all the budget cuts,  but that will wait until Tuesday. Maybe our government is so inefficient and wasteful because they simply do not talk to each other. Both letters came on the same letterhead, so the people work for the same state disability office. Go figure.

HUH ?!?

I expected a huge meltdown from Hope this morning. The Dad took GB out for breakfast before school. Hope did not get to go, because she spent yesterday not doing her homework. I refuse to fight the HW battle. I told Hope twice she was making a poor decision and the HW would have to get done.  She tried to engage me and I refused to play. GB ignored her and got her HW done. At bed time, I gave Hope her medication and told her to get ready for bed. She did the wango tango because her HW wasn't done. It was exactly the same homework she has been doing for three weeks. I pointed that out to her and reminder her she could have chosen to have it done in less then 15 minutes, but she spent 45 minutes choosing not to do it. The HW would be there in the morning.

I put Hope to bed (no Dad last night) and read with GB until Hope was asleep. I wasn't looking forward to this morning, but was ready for it. Hope woke up, came to me, and asked where GB and Daddy were. I told her they went out to breakfast. She very calmly asked why she didn't get to go and when I reminded her about the undone HW, she said Oh yeah. That was it. She was cooperative with the whole morning routine, ate breakfast without any attitude, and spent about three minutes finishing her HW. She couldn't find her shoes, which is usually good for a meltdown all by itself, but she just spent ten minutes looking- no frustration, no hissy fit. GB and The Dad came back, and Hope was all smiles and wanted a hug.

Ten minutes later it was time to go out to the bus. We gathered book bags and put on coats. I zippered Hope's coat up and she went off. She wanted to do it herself and she wasn't very nice about it. She undid the zipper and I went to zip GB up. Hope realized she couldn't zip the coat up by herself. The rage I expected an hour earlier swooped in and caught me by surprise. Such is life.

Good Night

eyes clear, shining light

wispy hair, soft skin, smile too

God keep safe, good night

My Hope

Hope has been here almost 6 months. I think the honeymoon (if you can call biting, scratching and screaming a honeymoon)  is over. The physical aggression has greatly decreased. Most of her aggression now is when she thinks she won't get caught. She has her real smile, which is pure pleasure to see, and she has her I-am-so-cute RAD smile she wears as defense most of the time. Her triangulation is starting to develop major league muscles, catching her therapist one session. Her favorite phrase, when she doesn't get exactly what she wants is "you don't love me". The stomping of feet, crossing of arms, and the death ray look has almost moved in with us, as opposed to being a frequent visitor. She has suddenly become incapable of doing her pre-k homework. She is furious when I tell her HW is her problem, not mine. She tries playing the I can't do it card, but since all it consists of is tracing her name, she hasn't found any sympathy. Most times she earns a consequence, her reaction is " I want to call my Texas family".  I tell her  she may want to, but it isn't happening right now. I have had the bus company put them in separate seats, because Hope was poking GB, and GB was getting in trouble for picking on "poor Hope". When Hope complains GB did something to her, the first thing I ask her is what she did to GB. Usually, she tells me I don't love her and walks away, arms folded. GB will tell me "I slugged her because she scratched my face, twisted my arm, dug her nails into my neck." After the obligatory "In this house we keep our hands to ourselves", I finally got smart and made Hope's world smaller again. She has to be with me all the time, at least until she settles down again; a day, a week, a month, whatever. Winter clothes took care of (most) of the biting. Now I have to figure out a defense against spitting.

Adopting a RADish- You never know!

I have read, from more than a couple of sources, that kids with Rad can do well in larger families, as long as no safety issues exist. The first time I read that, my mind said, well maybe in SOME cases and promptly forgot it. I came across it a couple of more times, and my brain acknowledged it made sense. I stuffed that knowledge way back in my head; you know  that place? The place you put information you are sure you will never need again (like how to breed a goldendoodle). And life went on. Since I was sure, beyond thinking, that GB was our last child, I built our routines around exactly what GB needed, and how GB functioned best. Then the medication side effects hit, we had to withdraw the risperidal, and we lost stability. Minor problem, one that would be solved with a little research and a new drug. Nine months later, we are still looking, but I digress.

In the beginning of July, I saw Hope's picture on the CHASK website- and I couldn't let it go. I showed it to my husband and he couldn't let it go. We were sure God wanted Hope in our house. I sent an inquiry, exchanged a couple of emails, spent an hour on the phone with her Texas Mom. Hope had an alphabet of diagnoses, but listening to her adoptive mom for an hour, her behaviors didn't fit with any of the diagnosis. Her Texas mother and I spent a lot of time talking. She didn't want to try respite, she didn't want to try bringing services into the house. She just wanted her gone. We finalized Hope one day, took her home the next. Gotta love Texas :(

It is somewhat ironic that our pastor convinced Hope's Texas mom that we were the perfect Christian family to adopt her, since neither our pastor, nor his wife have spoken to me since Mali was born.

What we didn't realize when we adopted Hope, was that none of the diagnoses Hope came with were accurate. The only diagnosis she didn't come with was RAD and Rad was the only (seems like a strange word in this sentence) diagnosis we are left with after six months of seeing every specialist I trust.

What does this mean? It means my household was ready for FASD, PDD-NOS, a child who wasn't toilet trained, and according to her records, suffered extreme delays across the board. I knew she would also be RAD, but the rest of the problems would fit in well with the structure that already existed in our home.

It didn't work out that way. Hope was already toilet trained, she just chose not to be when she was with the Texas parents. Her language skills were a full 2 years behind. Without any speech therapy, she had age appropriate language skills by November. All that is left is articulation difficulties and now she is receiving speech therapy for that. The bottom line is that Hope was environmentally deprived, never bonded and all we had to deal with is RAD.

GB still has all the difficulties of FASD, ASD, and Bipolar Disorder. Hope is bright and RAD. Anybody see a problem here? While I try to as much as possible to keep GB's routine to the one that works with her, it is not easy. By necessity, we have made Hope's world very small. Extended family has been told "hands off". The church has been told "hands off".  The gymnastic class has been told "hands off'. While I try to keep Hope's world small, I am also trying to expand GB's world, still keeping the structure. GB is attached but sometimes she still has with issues such as why doesn't BM ever call or see her. It is not constant, it does not consume her life.Contrasting that, why the Texas family got rid of her is on Hope's mind all most of the time.

Where does the idea that RAD kids may do better in larger families come in? It resurfaced Thursday when the structure Hope needed and the structure GB needed were diametrically opposed. I thought;" you know, maybe there is truth to large families being a good choice for a RADish". My thinking was that the larger family would have a structure encompassing a much wider range of needs, and therefore be easier to modify when adding a child with different needs. 

This is our family and we will do what needs to be done. I wonder though, if I had known that the only problem Hope was battling was RAD, would I still have felt God wanted her to be ours? God and I discuss it most days and probably will for a while. In the mean time, I work everyday at interweaving the girls very different needs into a new home that can meet the needs of both of them.

Now, we are getting ready to go to the indoor pool at the local Inn. We are suppose to get GB in the water as much as possible, as that is the only place she truly relaxes. I couldn't yesterday (another story), so we stayed home from church today. Hope is coming with us- not because she needs the water, but because The Dad needed a break from Hope, who requires a lot of energy to keep her regulated through a church service. Church will be waiting for us next week.

The Isolation That Can Be Special Needs Parenting

I was reading my regular blogs this morning and was over at The Final Maze. I wrote a comment that turned into a post, so I came back here. Foster Abba wrote, in part,

As a parent, I often feel like I am living in the prison of fearful parenting, but I often don't know how to escape.  

 As a Special Needs Parent for 30 + years, I have felt as she feels, for a very long periods of time. Years even. The internet has helped the second time around. I love the internet support. Kari was a big help when I first started blogging and GB was drowning in first grade, The ideas she gave me about modifying GB's day were invaluable. Most of them ended up in her current IEP.  Still, it is not the same as having an IRL friend  who gets it.

I found a few close friends IRL that understand my childrens'  disabilities. One is a special ed teacher that started seeing GB at 7 months in our home. We became friends after GB went to Special Ed preschool and she stopped coming to my house. She has girls the same age as mine and nothing phases her. Another is an adoptive Mom with ten children currently at home. Her three year old makes my kids, even Hope, look like a walk in the park. The last one is a widowed grandmother, raising her granddaughter. She was a adopted herself, and adopted both her sons. She has boundless empathy and nothing much flusters her, even when we are out in public and one of them, usually, but not always Hope, has melted down. I found the grandmother and the adoptive parent at a gymnastic class in a gym that has broad inclusion policies (they took GB at 2 1/2, when she still wasn't speaking to anyone).

We have just signed up for a parents of special needs support group. Now that the girls are in self contained classes, we are also meeting parents and slowly getting to know them as we let the girls socialize a bit. Some of them we know allow things we are diametrically opposed to, and we don't feed those relationships. However, there are parents, adoptive and otherwise, that share enough of our values and concerns to make it workable.

I know you have additional concerns, but The Dad and I are 54 and 53 and the only one that grew up when we did and understands our references is the grandmother. In general, the parents we meet are from a different generation then us and are still struggling with acceptance and how to get the help they need.

 I have dealt with CPS, and with my mountains of paperwork have easily gotten rid of them. Even with MK, who was by far the most difficult child I have dealt with. I have a trail of paper work covering my a$$. I no longer worry about them. When the inevitable complaints come, my daughters' treatment teams have my back.  It worked well with my first family and I am just as meticulous this time around. Everything I know to be true is documented by respected professionals.

I deal with people who think I am crazy all.the.time. I register their reaction and move on. I do not have the time or energy to deal with those people. There have been people who have never given my kids a chance because of their disabilities and the fear those disabilities arouse in them. Parents of NT kids are frequently afraid of our kids, especially once they are school age and not so cute anymore. My kids have the additional difficulty of being varying shades of brown with white parents. As a family, we already stick out.

Support is support and if you you never leave your house, you will never find the support that may let you out of your prison. Self imposed prisons are still prisons and are no way to live.

B-I-N-G-O

GB's play date went well yesterday. She came home in reasonable shape and went to bed easily. Hope had a tough afternoon. I don't know if she missed GB, was jealous that GB had a play date and she didn't, or maybe she couldn't take an hour and a half with  it just being the two of us. We picked GB up a couple of hours later and Hope was dysregulated for  the rest of the night.


This morning, both girls woke up in very hyper states. Bingo at the girls school was tonight and they both wacked out about it. The noise, being left behind by the caller, and all the people made it very difficult. We lasted two regular BINGO games and one of corner's (and  I was surprised we made it that long). The girls enjoyed it until they didn't, and then we went home. The girls counted it as a success. I can't wait for the next NT event at school.  NOT!

GB's Small World Grows a Little Bigger (For the Moment)

I complained to the shrink that Geodon was holding GB in during the day, but by 5 o'clock she was really struggling. He added another 20 mg of Geodon at four o'clock. Things are better. I still can't wait for the new shrink in March so we can try the next generation of Risperdal.

A boy from GB's class called yesterday and invited her over for a play date today. He lives one block from the school and his mother will meet them at school and walk them to his house. It has been months since I let her go on a play date and she is equally excited about having a friend and spending an hour and a half after school without Hope. Our world is pretty small at this point.

I am pleased she is so excited and proud of myself for agreeing to it. I tend to err to the side of keeping the world small for them, so they can manage, but sometimes you have to let them enlarge their world a little bit to see if they are ready for it. It is such a balancing act.

A Letter to GB's Biological Mother

I read a post on Corey's Blog the other day that made me cry. It wasn't really the post- it was the sense of loss because I could never write that kind of letter to GB's biological mother and GB will never have the comfort of knowing that her mother loved her and took care of her until she made the life giving gift of adoption. My letter would to be more like this:

Dear GB's Biological Mother,

I am writing this letter because there are things I want you to be aware of when GB comes asking you difficult questions during her rapidly approaching adolescence. Since you have never lived more than 10 miles from our house, I am sure when she wants questions answered, she will be able to find you.

I suspect her first question will be about drugs, alcohol, and cigarettes. She knows that none of these things are good for babies and she knows you chose to do them anyway. She knows she has Fetal Alcohol Spectrum Disorder and she knows it doesn't go away. She knows that you promised both me and your father you would not do these things while you were pregnant. She doesn't know why you didn't keep your promise. Neither your father nor I have that answer for her.

She wants to know why you don't like her anymore. She remembers being four and being a flower girl in your father's wedding. She remembers you being in the wedding too. She doesn't remember seeing you, or you calling her after that day. I have told her that you called her 2 or 3 times and visited several times in that following year, but she doesn't remember it.  She thinks she did something wrong. My words cannot change the rejection by you that she feels.

She asks why you didn't eat good food while you were pregnant. I have no answer. She wants to know why she was in daycare before she was a month old. I used to say "Your birth mother had problems". I stopped saying that when GB started asking what kind of problems. How do you explain a personality disorder to an almost eight year old who is emotionally five? When she asks these questions now, I tell GB that you are the only one who knows the answer to these questions and when she is older, she will have to ask you herself. This is also the answer I give her when she wants to know why you left her. Since Hope came to our family from a disrupted adoption, GB's awareness of her own story is very much more evident.

Sometimes, in the past, GB has asked if you didn't want her, why you wouldn't sign the papers so she could be adopted. I don't have an answer to that question either. Don't worry, GB won't be showing up on your doorsteps tomorrow. You probably have four or five years before that day comes. Remember, though, the years pass surprisingly fast. She remembers all the times we went to go to court during the process of terminating your parental rights. Everybody has to answer for their actions sooner or later, and you only have a little time to figure out the real answers to difficult questions.

Maybe a therapist would help you figure out the answers to these questions, so that both you and GB can live with them.


GB's Mom

Hope's Program Review and Annual Review

God IS good!  I have not been to a more productive CSE meeting in a very long time. We agreed on behavioral standards and enforcing consequences in the same manner.  My testing and Ms. VY Teacher's testing came up with essentially the same results. Ms VY Teacher agreed with what we wanted at every step. Hope will be going to summer school with district transportation, and the same social worker and teacher.

In September, Hope will again be in Kindergarten, in an 1:8:2 class, with only K and 1st grade children in it. Mrs. VY Teacher will be her teacher again. I think this is good, as we will not have to waste time with a honeymoon period again. We had the daily communication log written into the IEP, as well as quarterly Program Reviews.

Hope can now count up to five objects in a group independently. She still can't tell you there are two cookies on her plate unless she counts them, and if there are more then five objects in a group, she loses her one-to-on correspondence. She recognizes 20 upper case letters, 16 lower case letters, and knows the sound 5 letters make. Hope needs to copy or trace letters; she can't write them from memory, not even her name. She can not recognize the first sound in a word, unless the word is Hope. She does not hear rhyming sounds. But there is lots of time between now and September.

We really weren't interested in her academics this year, and maybe she will be ready in September to start the Kindergarten Curriculum.

Being a Family of Four

GB

This weekend, The Dad, the girls, and I went for an overnight at the water park. Just us- our sub-family of

four. The park was empty and the rooms were cheap (Thank you, Super Bowl Sunday). GB always relaxes in water. Hope has never seen anything like it. Last night she told me there was no fun in Texas. She thought a minute and added maybe New York just kept all the fun to its self. We went with the sole purpose of keeping the trip low key and enjoyable. Two of us, two girls- neither girl had to do any activity they didn't want to. Hope had a couple of rough hours this morning. She woke up growling, and was not cooperative with either of us. The Dad and I focused on GB and let Hope and her 'tude to themselves. After  a couple of hours, Hope came to me, with her 'tude, and announced I didn't like her. I told her I liked her fine, it was the attitude I was not dealing with. Several minutes later, Hope came back, apologized, and showed me her improved attitude. It lasted until we got home. Hope's attitude came back before gymnastics, but keeping her out of the start of the class reset her attitude. GB had the best gymnastic class of the year. GB lasted to bedtime, but needed some help settling in. All around, it worked out well. It may become a new family tradition.

Hope tries something new without a meltdown

Scooby Snacks

GB and her Dad

Goodby D

D will be leaving for Basic Training shortly. Post on the other blog.

Geodon

GB is on her third night of no Zyprexa, just Geodon. GB's Dad sees no differences, but can't stand her  inability  to sit still, the constant pressured speech, or her manic laughing- all of which have gotten worse over the past two days. If there weren't so many commitments here, I would take GB to either Myrtle Beach or my sister's in Raleigh and keep her there until our  appointment with the new shrink on March 1st. Since that is not feasible, I will have to keep her close to me.

Tonight she was in tears as she asked me why Daddy and MK like Hope better. I hope there is at least some relief as the Geodon builds up in her system.

No Snow or Ice Today!

There is NO snow or ice today and there is not suppose to be tomorrow! Saturday is suppose to be more snow and ice, but I am not going there yet. All of these snow days have taught me a couple of things. First, the girls need scheduled breaks away from each other. Second, I thought I did a good job organizing the house for the girls. NOT! There is still way too much for them to play with, and since I am spending the morning in with the plumber (Yeah! The kids will have their toilet back, I will have my garbage disposal back and the house will be temporarily leak free), I am going on a purging binge. Four weeks to Orlando, less then five to surgery. I HAVE to purge or I can't imagine the mess that will be here after I am up and around again. The Dad keeps on top of them to clean up, but they are sneaky little buggers- they have hidey holes and out of the way corners that they can just pile stuff without having to actually think about where stuff goes. And the room looks SO much better...

The girls didn't want to go back to school today. I sidetracked GB by telling her she could go outside after school and climb the snow mountains. As for Hope, well, my Texas girl was excited the first 4 or 5 times she saw snow and went out in it. Now she is done with it. She doesn't like snow clothes, she doesn't like the cold and she definitely doesn't like cold hands. Nobody has been able to convince her that if she kept her gloves on, her hands wouldn't be wet or cold. 

Snow Mountains Await!

The Ice Day Cometh

Just like expected, I woke up to the musical sound of ice hitting our roof and windows. They announced  schools were closed before 5 am. I did get my dishwasher yesterday- my appliance guy, Rich, is local and had 4 wheel drive. Not as lucky with the plumber guy; He is not local so everyone is still using the master bath, my sinks are still leaking, and the garbage disposal being on the fritz is slowing down our evening routine- everybody getting in everybody's way.

Today, I will would like to finish up testing Hope. I need to line up my ducks, and I never write anything useful on snow/ice days.

We have taken advantage of all our inside time together to pull everything of the girls shelves and bins. So far, we have filled two large trash bags with junk and garbage. Mind you we already did this before AND after Christmas. GB has always been a hoarder- everything is a treasure, especially little bits of paper. Hope is a little trickier. I don't know if she is hoarding because with her first adoptive family she had nothing to hoard or because she still thinks and does everything GB does. Both are true. They need lots of practice on placing relative value on their possessions.

Therapy for the girls was canceled last evening because of weather. So the Therapist was moved to next weeks list.