Saturday, April 30, 2011

The Juggler: I Just Do Not Know if I Can...

GB got off the bus Friday and said the aide yelled at her to knock it off and hit her leg. I immediately took Hope aside and asked her what she saw. She told me as GB was getting off the bus, and the aide hit her leg. I called the bus company. The owner  called me back  late Friday night and said he spoke to both the aide and the driver and they both said nothing happened and he was backing them. He said "The aide said GB was a fibber". I said GB might misinterpret the situation, but if she said the aide hit her leg and Hope independently said the same thing, then physical contact was made. He said " I am telling you, I am backing my people. I have known them a long time and they would never do anything like this"

I am so angry, I want to tear the people involved into a billion very tiny pieces. I am also so tired. I don't know if I have it in me to deal with all the ignorant people I would have to deal with. I am looking at Monday's calendar, wondering where I can squeeze in time to actually speak to the people involved and to the people responsible for their actions.  I have to figure out what complaint forms need to be filled out to go with my written letter of complaint. In order to actually get a response from the school district, I know I will have to escalate  to the State Education Department. Been there, done that.

I know what I should do. I know what I want to do. I am concerned that if I do it, that's one more ball in the air. That ball maybe the ball that pushes me beyond what I can do. It may the ball that causes me to drop all the balls I have been juggling for so long. What use is a juggler that can't keep the balls in the air?

An Exciting Saturday Morning

Hope started her special needs swimming lessons late this morning. Her Dad will be going with her and getting in the water to keep Hope from being overwhelmed. She put her head under the water and jumped off the side of the pool. Most importantly, she ended the class with a smile and wants to go back next week.

GB and I went to Panera's to have a nice quiet breakfast together. Breakfast was good, but there was no quiet. Someone burnt toast in Panera's huge toaster. They turned off the alarm. Several minutes later, a snorkel truck and an emergency fire truck pulled up and a half a dozen fireman, with their coats, boots, hats, and equipment came running in. GB was very interested and couldn't take her eyes off them. There was no smoke that I could see, bur the firemen set up a huge, loud fan to blow the smoke through the door next to wear we were sitting. It didn't take very long for the noise to get to GB. We came home, put on her weighted vest and a dance DVD.  She is much more regulated now. We switched to a quieter Comfy Couch DVD and she chose to keep her vest on. She has a birthday party at 2 pm. She is excited. I will take her and stay. When she has had enough, we can leave. The party will have snakes at it. I didn't know GB even liked snakes.

Friday, April 29, 2011

Something Different: A Kiss

Hope in Michigan

Hope woke up this morning exactly the same as she went to bed- mad! She started raging because GB's skirt fit GB beautifully. I asked her why she was mad, a question I have asked a million times before. She told me she didn't know- which is unusual. She usually keeps on raging. It has happened before though. I waited 30 seconds or so, and when she was still looking at me I asked her if maybe she was mad that she had to change families. Not the first time I have asked that question, either. The difference was this time she looked me in the eyes and said "Yes". Such a simple word, with so much behind it. We cuddled for five minutes without any more words. She got ready for school and had breakfast with no problems. I took both girls to the bus stop. Hope was out of the car and getting on the bus when she turned around and ran back to me. I am thinking "What now?". She ran back and said  "I didn't give you a kiss", kissed me, and ran to the bus with a smile on her face.  These are the moments that keep me going.

Thursday, April 28, 2011

I Don't Wanna!

This morning I woke up to a bright sky, warm air and the first thought in my head was "I don't wanna get up". Hope  screamed for an hour last night. She had the afternoon I expected, the teacher conference went as expected, and the rest of the day was as expected. It all sucked. Bedtime caught me by surprise. I asked Hope three times to put her pajamas on and three times she crossed her arms and said no. Something in me rebelled at asking a fourth time, so I put her into bed in her panties.  She screamed and screamed and screamed. After an hour of screaming the Dad caught her at a lull and went in the girls room and sat in the rocking chair. She fell asleep. At that point, I had a wicked head ache. I took some medicine and went to bed.

I woke with the same headache I went to bed with. Hope had her usually lousy morning and I put the girls on the bus. The refrain in the back of my mind is now "How long before she is back?" What a waste of the Hope-less time I have! I am going to do a load of laundry and see if I can find a pair of big girl panties to wash... I seem to have run out of them this morning.

Wednesday, April 27, 2011

Hope's Awful, Terrible, No-good Day

Our new "normal" with Hope hasn't been easy. In the last 24 hours hours, Hope has out done herself.  She has pinched and kicked me, tried to poke my eye out with a pencil and bit me while I was confiscating the pencil. I received an email from her teacher saying her behavior has been difficult for the last month. She tried ignoring the behavior and depriving Hope of her end of the day prize. It didn't work. (Mind you, Hope is in a class run by a respected children psychiatric hospital). Today Hope gave everyone mean and nasty looks, stuck out her tongue at an adult, rolled her eyes at everyone, crumbled up her seat work, announced that she was not doing any work and followed through with that. The teacher EVEN tried putting her in the timeout room for 5 minutes (Gasp!). She wants to meet with us.

After school yesterday, we went to therapy, like we always do on Tuesdays. Hope went first, then GB. The therapist never came out to get Hope for their sibling session. Afterward, the therapist told the Dad that she chose not to have the sibling session because she didn't want to subject GB to Hope's mean and nasty behavior. The therapist was visibly shaken.

I spoke with the MHA about respite for Hope. They are concerned that none of their regular respite workers would be able to handle Hope and keep her and everyone else safe. They want us to consider their more intensive program, aimed at children in danger of being placed. I deferred the rest of the conversation until after we see the psychiatrist on Monday.

As for the highlight of my day, I got an email that the 5 point harness is in the mail! God is good! (And so are friends!)

Tuesday, April 26, 2011

If You're Thinking of Adopting...

If You're Thinking of Adopting... this post is for you. A long time ago, my husband and I started fostering emotionally disturbed teen age boys. We dealt with guns, stolen cars, truancy, pot growing in underwear draws, and kids that set fires. Every time  the police knocked on the door and I answered, they always started with "I am so sorry to bother you, but (whoever) seems to have done (whatever). I always felt so bad for the nice policemen, who would really rather be anyway else but at my door. After  four years of dealing with the kids that our local RTC couldn't deal with, I figured I could handle anything adoption threw my way. So did the social workers. I was wrong. The social workers were wrong, too, but they never seemed to notice.

J was born Bipolar, probably genetics activated by prenatal exposure to alcohol and drugs. Back then, Bipolar wasn't even considered. He also had a neurological processing disorder that they couldn't pinpoint,  although they could and did 20 years later. No matter where I turned everybody told me how bright he was and how his problems were because of whatever I was doing wrong. They never could tell me what it was I needed to change. He was also biracial in a white world. It had not occurred to me how much of an issue it still was in this country, so people flinging hate at him pierced my heart. I had not developed protection from the hate.

Even church, which had always been my sanctuary, added to the problems. They were good people, but blind to the biases and hatred that was  buried deep in their souls. For the first twenty years I pretty much soloed. My husband was busy earning a living and he had been brought up to believe if you ignore problems and refuse to acknowledge them, eventually they would go away. Mental illness scared him. Confronting people about how they treated our children wasn't his style. Medication would be admitting something was wrong. He had never learned to control his temper, so all the kids did better and it was easier for me when he was out of town. He was out of town a lot.

Nothing much changed until GB became ours when she was 5 months old. I insisted from the beginning we would do it my way. This time instead of fighting a child's disabilities, he wanted to learn. He spent as much time with her as he could. When she was sleeping, he doggedly plowed through every book I gave him. He went to every meeting where results were discussed- Early Intervention, developmental pediatrician, pediatric neurologist, psychiatrist, PCSE and eventually CSE meetings. His involvement made a big difference with Family # 2. With J and MK, it was so much harder. It is very difficult for one person to do it all. The biggest drawback is not having someone who is just as invested in the child as you are to bounce ideas off of. Your thoughts just rattle around your brain and you miss the opportunity that a different perspective gives you.

Unexpectedly, the hardest part of adoption was isolation. My special needs, differently skinned children were not welcome by the parents of the white NT kids. We were an island unto ourselves. We found a small black church in a small city 1/2 hour away. We consciously reached out to become part of their community. More than half of the people we met were just as narrow minded as the people in the white church we had left behind. It took more than five years, but we made lasting friends. They are an integral part of my girls lives. Most of our pre-adoption friends are long since gone. With our high maintenance kids, especially Hope, just leaving them with a baby sitter really isn't an option.  That leaves The Dad and I out of a lot of normal social situations. Most new adoptive parents who adopt special needs kids never consider whether their social support systems will stand up to the challenges that these kids can present.

Even infant adoptions run a higher risk of having a child with a mental illness. Once you get into older children adoptions, a lot of kids have some environmental damage. We adopted Hope at 41/2 years from a disruption. We knew she was RAD. I am experienced and have a great support network. Yet, I still would be reluctant to adopt a child with RAD as a single parent. I know how hard it is. I have seen single parents adopt RADishes successfully. I am just not sure I would be strong enough.

Monday, April 25, 2011

How I am taking care of myself today!

It is the first day back to school for my girls. GB needed blood work before school. The Dad took her and then took her out to breakfast. Hope was not happy. I feed Hope and got her out to the bus, still fixated on how unfair and mean I was because she wasn't getting blood work.

It is our back to usual schedule this week, which means Hope is stuck with me 95% of the time. Hope doesn't like that either. I meet with her teacher Wednesday. I am interested in how much the teacher has picked up on. A friend is sending me a 5 point harness she no longer needs. It is greatly appreciated, since Hope tried to kick out the window of the car again on the way to the bus this morning.

Enough on Hope. Since this is our new normal, I am adding things to my daily routine to relieve stress. I am drinking blueberry-pomegranate juice, watered down by seltzer since I find the taste too strong. I started eating yogurt with probiotics three weeks ago and am continuing. This is big for someone who hasn't eaten breakfast since she was eight. Best of all, I made some of Sarah's sugar body scrub! I chose a drop each of sweet orange and lemon essential oils. I also opened up 3 vitamin E gel caps and added the insides to the scrub, but it not necessary. For the first time in my life, I have smooth elbows and it happened without even trying. I just used the sugar scrub on all the places I don't need soap. It is invigorating and easy to keep up with.  I also scheduled a massage at noon. Decadent!

What will you do for you today?
This version uses almond  extract instead of essential oil

Sunday, April 24, 2011

Easter 2011

We chose to greatly simplify our Easter celebration this year. Breakfast at home, church, lunch just the four of us, a trip to see The Dad's mom, a DVD, and bed. Baskets, presents, and candy all done before the actual day. No large gatherings of family or friends, no Easter dinner. Smooth and low key.

Our carefully thought out plan didn't make it through church. The best of plans can't stand up to a RADish on a holiday. Raspberries, ugly faces, nasty name calling. The Dad tried the don't-rise-to-the-bait method for a long time- through half the sermon and most of the benediction. Then my little Radling kicked him. He took her out of the car. All the kids got Easter baskets filled with goodies after service. The Dad made sure he got one for Hope, so she had goodies to eat  with GB on the way home. I thought it was ridiculous, but The Dad thinks I am just vindictive.

Hope was no better during lunch. GB and The Dad are on the way to see his mom. The little Radling is watching a movie, staying as far away from me as she can.

A five point harness is on the top of my list, followed by keeping Hope home for very long time. My next trip will be a road trip with just GB. We will run away and spend a night away. I don't know where we will go, but I guarantee Hope will not be with us.

Hoping all my readers had a great day, except those of you who have RADishes. To those with RADishes, I hope you had a peaceful day.

Saturday, April 23, 2011

Midnight Madness

We are halfway home to NY. We stopped at a motel early enough to swim. I thought I was sooooo smart today. After Hope melted down at lunch today and was carried from the restaurant kicking and screaming, we gave her Benedryl. It worked. It gave us peace in the van most of the afternoon. When it wore off, however, payback was a bitch. Totally dysregulated, loud, and into everything. It is midnight and she just fell asleep. We will be in the car another 7 hours tomorrow. Going to sleep now and hoping when I wake up in the morning, this will have all been a bad dream.

Friday, April 22, 2011

17 Hours of H*ll, Again

We leave in a few minutes to head back to New York. I would like an easier care ride, but don't think it is likely. Hope hasn't settled down at all. Lots has been happening, but I am too tired and busy to write a real post now. I will, however, share my last pictures of the week. The littles are all cute. Enjoy!

Thursday, April 21, 2011

Nature vs Nurture.

Nature vs Nurture has been a debate in child development for decades. When I started my adoption journey, I believed nurture conquers all. I was wrong. Among the factors it doesn't conquer is prenatal alcohol exposure, mental illness that is present in both biological parents, genetic disorders, and congenital diseases.

When you chose to conceive a child, you have some control over these factors. You can chose not to drink. You probably know if you or the child's other parent battles a mental illness. Some genetic disorders can be tested for, some are spontaneous mutations. Congenital diseases don't give you a lot of ways to prevent them, but you do what you can do, like taking vitamin C to help prevent spina bifida.

When you adopt an infant, all you can do is ask questions. If the birth mother doesn't want you to know there isn't much you can do. The rate of mental illnesses in children adopted at infancy is significantly higher than for biological children. The speculation is that people who chose  adoption for their newborn are more likely to live with a mental illness and self medicate with alcohol and other drugs. Researchers are trying to isolate various factors, but given the nature of adoption historically it is proving difficult. I know that GB's birthmother still denies using alcohol during the pregnancy, even with scores of people who say they saw her and GB's facial features. She denies she is mentally ill even though she is receiving SSI for being Bipolar.

When you adopt an older child, you get to throw in PTSD and attachment issues, and if you hit the jackpot, even RAD.

Although I am a firm proponent of scientific, evidence based interventions, I also believe each child, no matter how they enter your family, is a gift from God and we are expected to help them fulfill the purpose God has for them. Contradictory? Yes, but still what I believe.

Wednesday, April 20, 2011

Easter Pictures in Michigan

 Easter in Michigan is different than Easter in New York, North Carolina, or Myrtle Beach. My grandkids had a snow day today, so after J was done  plowing his customers, he took the little ones outside sledding. The kids and GB's dog, Ellie, had a blast. When they came in, J made hot chocolate, and my 10 year old granddaughter made everybody lunch. The afternoon consisted of the littles getting their nails painted (including X) and watching HD movies.

Hope, GB, and Michigan

J and my lovely DIL

MK and Mali

X, GB and Mali dancing
GB and play dough ice cream


 No Hope pictures today :(      I chose not to take any Hope pictures today. Read on.

It is snowing in Michigan. I look out the window and I see beautiful trees, naked except for the snow clinging to them. I would guess that this is the most peaceful part of my day as I am the only one up.

Hope continues her three week tirade. Yesterday, she spent the majority of her time screeching, telling people they were stupid, and shouting that nobody loved her because she wasn't being hugged. The biting returned, the punching continued, and The Dad and I spent the day trading her off  as each of us tired. As soon as she was done not eating her dinner, she was put to bed. She continued to carry on while the rest of the family cheered each other on with a M*chael J*ckson dance game. GB and X did great and J is a born ham. Even MK and one of my granddaughters took a turn. It was such a good family activity, I might even be persuaded to get a *WI* :)

GB's stability improves daily on the Invega. She is at 3 mg at night. We have her completely off the Geodon and are starting to wean her off the Lithium. We may be able to keep her stable on one dose of Invega at night. God is good.

Tuesday, April 19, 2011

Adult Children

MK came with us to visit J. For the last two days, I have had the pleasure of spending a lot of time with them. In most  ways, it has been a pleasure. Both are stable. Both meet their obligations  with a matter of fact attitude. They are thrilled to be spending time with each other.

The snag- they both think they are equipped to raise the girls and if they were in charge, the girls would be "normal" (read not exhibit behaviors that are age inappropriate). MK has apparently forgotten the car ride. J has the same desire to be right as he always had. Neither one has a clue to the disabilities the girls are dealing with. Hope has already suckered J twice,  telling him that GB and X wouldn't play with her. He started explaining to GB and X why they would not be permitted to behave that way. I stepped in and asked Hope what really happened. She told me that GB and X wouldn't play the way she wanted them to.

I am still keeping Hope with in arms length. It gets tiring to fend off J and MK. The Dad has spoken to both of them, but hasn't shaken their core belief that they could do better. I guess I can ignore them another three days. Even with fending them off, it is so much better than the ride here. The ride home showed up in my dreams nightmare last night. Not pretty. When we get home, we will be staying home for a long while.

Monday, April 18, 2011

17 Hours of H*ll

This post couldn't have been written yesterday. By the time we arrived, we had spent 17 hours, over two days,  in the car, in hell with Hope. Nobody had anything left. It was as bad as it sounds. The question for today is HOW DO YOU MOVE ON AFTER THAT? My philosophy is that each day is a new day, with a clean slate. Sounds great. I have kept it up the almost 8 months Hope has been with us. This morning, I woke up and I was still pissed at the amount of sheer havoc one small, 5 year old RADling can cram into a van of people who are stuck with her for two days. It doesn't help that we are *in*a*new*place*, so Hope is still riding the line. Her time out chair is set up. She is restricted to arms length. So, you ask, what's the problem? Ahhh. The problem is when you restrict a child to arms length, you have to see them all the time. Right now, I do not want to look at her much less see her. I am faking it, but it is driving my blood pressure up to the point I have a killer headache. Any suggestions would be appreciated.

The Verstile Blogger

I received this award from Karen over at Confessions of an Aspergers Mom.

Ten things about me:
  1. I started fostering at 22 years-old.
  2. Babies are not my thing.
  3. I love the ocean.
  4. My oldest grandchild is 16.
  5. Gardens are a piece of God.
  6. I have had 57 surgeries in my life.
  7. Advocating I am good at;
  8. Acceptance, not so much.
  9. My God is so ginormous that he can't be pigeon-holed by anybody.
  10. I am constantly amazed by where God wants me to go.
New Bloggers I am passing the award on to because they give good reads:

 Last Mom @

 Lori @

Pat @

Kelley @

Kris @

Award winners should copy award, tell everyone ten things about themselves and pass the award on.

Sunday, April 17, 2011

The Car Ride's Gratitude List

  • Daffodils
  • Pepsi
  • The  adults in the car
  • GB's trust
  • John Denver on the Ipod
  • Medication that makes it doable
  • DVD players
  • Headphones
  • Twizzlers
  • The kids blankets
  • My blankie
  • Arriving at J's

Saturday, April 16, 2011

I no likey RAD

Today we leave for Michigan. Everybody is excited, including Hope. However, this journey requires us to leave the house. Hope no likey that.

Hope, in general, is having a tough time. She still hasn't bitten anyone in going on three months. Progress. Our "new normal" now includes screeching, quivering lip fake crying, defiance, choosing not to an inability to do anything she is asked, "You don't love me" many, many times a day, kicking doors, punching windows, and  making the choice not to/ inability to have  a good day. As GB gets more and more stable (yea Invega!), she does not allow Hope to set her up as much. That, coupled with Hope still having to stay with me or the Dad at all times, has taken away Hope's favorite stress relief- setting off GB. Hope currently does not seem to have any other ways of coping. Fortunately, all of this is showing itself in therapy. The better GB looks, the more rigid and controlling Hope is. Now that it is out there, it is easier to work on.

This morning Hope is sitting by herself, because that appears to be the only thing she can handle as we get ready to go. Yesterday was a day of multiple rages, including trying to kick the windows of the car out. This morning, she was off and running by seven am. Today, we are hoping to be nine hours closer to Michigan by bed time. That requires nine hours in the car with Hope. I no likey RAD.

Friday, April 15, 2011


I am fifty-three tears old. Old enough that you would figure I had the concept of "me" down. I don't. Dealing with the changes raising GB brought into my life, losing my brother, father, and mother over eight months, and leaving tenure behind to quit the workforce and go back to school were changes I coped with, still able to keep "me". And then there is Hope. I am still GB's Mom, but that no longer defines me. With Hope home, I am no longer actively working on my dissertation. I may get back to it, and if I do it may or may not be obsolete. I haven't a clue. My goal of working with Head Start kids and giving them an even start that they keep may not be reasonable. I have never done things halfway and can't see myself starting now. Yet, Hope's Mom does not define me. We have had Hope going on 8 months and have still only scratched the surface of who she is. I can't even reasonably claim to know what she needs in a mother. The RAD, which is in every breathe she takes, every word she says, every action she takes (or doesn't) is all consuming. It has left very little room for "Hope" to show herself. I am a therapeutic parent, but that is how I force myself to act. If it were really "me", it wouldn't be so hard, take so much out of me, or in some moments, just leave me completely. Physically, I have neuropathy and a white matter disease both of which  will only get worse. I refused to be defined by any disease, so my "me" really can't be physical.

Fifty-three is old; really too old to start a journey of "who am I?" Still, since that is where I am, I guess that is the journey I need to take. If I had known it was a journey that would be repeated multiple times in my life, I wouldn't have taken it so seriously as a teenager. Back then, I didn't realize how many times I would start this journey over.

Thursday, April 14, 2011

I Didn't

Yesterday I didn't
  • wash the floor
  • put away the laundry
  • go to the store
  • take out the garbage
  • get out spring clothes
  • cross out something on my to-do list
I did
  • spend time with MK
  • had a biopsy
  • took the kids swimming
  • played ring around the rosie with my grandson in the pool
Good day!

Wednesday, April 13, 2011

That Smile

Today it is gray, rainy, and cool in our part of New York. Hope wouldn't get up and pulled the covers over her head, whining about being tired. GB got up, used the bathroom, and looked out the window. She said "It's a yucky day out there. Let's go back to bed and cuddle." I debated between fighting the usual battle to get Hope up and going and GB's request. This morning it was a no-brainer. GB and I climbed back into bed and cuddled. I put no time limit on it; I just allowed myself to enjoy it. Eventually, Hope got up to tell me we were late and going to miss the bus. I smiled and told her we already had. GB thought this was the funniest thing.

They did get dressed and eat breakfast. I drove them to school. When I kissed them good bye and told them to have a great day, GB still had a huge smile on her face. That smile was worth more than whatever she missed by being 30 minutes late.

Tuesday, April 12, 2011

New Post on other blog

MK and birth parents.


The Dad and I switched kids for a couple of hours last night. He got to watch GB do some amazing stuff at gymnastics and spent time helping her regulate and enjoy the evening. I watched Hope's class, complete with arms crossed and flat out refusal to participate in some of the activities.  After class, as I got Hope ready to go home, I softly talked about some of the activities she did participate in and how much fun she seemed to be having. I told her we had a couple of hours to spend together and it was up to her how we spent them. She asked to get into her pajamas, so we did that, then she brushed her teeth and took her medicine. She went to get her current favorite book, "Harold and the Purple Crayon". We both laid down in my bed and spent an hour and 1/2 reading. We had a meltdown free evening and, hopefully, stored a little love in the "good memory bank". It won't happen again today, but that is alright. It will happen another day. I am sure of it.

Sunday, April 10, 2011

Dealing With the Past, Again

GB has been struggling with the past actions of her birth mom. When  she saw BM at her grandparents four weeks ago, it was not a good visit. I don't think  there was any one incidence during their visit. GB was just looking for a sign of connection or love from the woman who gave birth to her. She didn't find what she was looking for.

GB spent a couple weeks coming to the conclusion that she no longer wanted to see BM at her grandparents. It took a few weeks after that, for GB to tell me how angry she was at her BM because of how little her BM cared. The whole thing is still something GB is processing.

GB found her own way through her current stuck spot. We are going to see J in Michigan next week. J is her birth father. She called J today and invited him out to lunch- Just the two of them. They will be going to R*by Tuesdays. She is paying. J said he would really enjoy it and thanked her for inviting him. She hung up from this conversation with a large smile on her face.

How can I help an eight year old with ASD, FASD, and Bipolar Disorder process what has happened in her life, when I can't even process it myself ?

Saturday, April 9, 2011

You HAVE to Cut Yourself Some Slack

I spent three hours tonight pretending I had NT (neurotypical) kids. The Dad and I went out to dinner with two other couples. The kids' gymnastic place had a three hour parents night out. There were 5 instructors and 18 kids. They served them pizza, did arts and crafts, and kept them busy.

My kids are not NT. GB had a hard time regulating the whole time we were gone. Hope did fine while we were gone and started raging when we picked her up. I knew before we left them that they would be better off at home. So the question becomes, why did we leave?

We left them because we needed a break. We needed couple time with other couples where we could relax and have no bigger decision then what we were having for dessert. We needed not to be therapeutic parents for three hours. Yes GB is, and will be, glued to my side for a while. Yes, Hope Wango-Tangoed her way to bed. Tomorrow will not be pretty.

But... I knew they were safe tonight... The Dad and I enjoyed our break... and most importantly, when we get up tomorrow, it will be a new day, with a fresh start, and we will be ready.

That's what's best for everybody.

Friday, April 8, 2011

How I Deal With the Wango Tango and Hope

Hope is my second full blown RADish. When I adopted my first RADish 20 years ago, there was very little knowledge available to parents and nobody said attachment disorder. My first Radish even snowed all the professionals until she was 16. I was the one that was labeled crazy. And, really, I didn't know how to change things.

With Hope, many things are different. There is a wealth of reading material on RAD available. Even living in the middle of nowhere, I was able to locate a psychiatrist who gets it and a therapist that is competent. I only have to drive an hour each way. There are many different versions of best in the RAD world, but I sort through them and cobble together what seems best for my kid. The biggest thing I have now, that I didn't have the first time? The internet which led to bloggers which led to Trauma Mama's who share there ideas, offer love and support, give suggestions, and let it be known that I am not alone; we are all in this together.

A reader, Penelope , recently commented... Wow! Please share your insights on how to deal with the tirades. Ignore? Nurture? Discipline? I would love to hear more!

So, in response, I am sharing our current strategies, such as they are for Hope's Wango Tangos.

  • Hope is either with the Dad, with me, or in school. She is always under strict observation.
  • If she is in public and she starts, one of us leaves with her. We always deprive her of an audience.
  • Nurture during a Wango Tango does not help. However sometimes just being quietly available until she runs herself down allows us to slip straight from the Wango Tango into the nurture.
  • If she starts attacking people or throwing and/or breaking things we move to containment, with the message "we will keep you safe when you can not". When we have to contain her, it takes a lot longer to get to the nurture. On the flip side, if she needs to be contained, she frequently goes longer before going off again.
We also have a lot of structure in our day, with planned opportunities for attachment activities.
  • We always fix and serve Hope breakfast, lunch, dinner, and snacks. We want her to know that we will always make sure she is taken care of.
  • We give her (limited) choices everyday, so that she knows her opinion is important to us.
  • We keep her world small enough for her to experience some successes and always acknowledge them.
  • Each of us makes sure there is mandatory cuddle (The Dad) and rocking (me) time each day.
  • We are quick to notice and respond to any genuine emotion she allows us to see.
  • Morning and bedtime routines seem to be very important to her stability- if one of them has to change, we all pay for it. We do everything in our power not to change them.
  • We made wordless picture books of Hope's life story, that we look at regularly together, letting her use her words to tell us about the pictures.
  • A lot of conversations start, " In our family, we always __________"
  • Most important, we start off with the attitude that every day is a new day, with a new chance for success.

What Trigger?

Today, I bit the bullet and went shoe shopping after school. GB chose a pair of shiny black sneakers with neon designs all over them and a dog charm. Hope chose sneakers similar to GB's except they were white and had a cat charm. Hope also got black Merrill's because she had outgrown hers. GB's Merrill's still fit. I bought first walker's for my grandson. It took us an hour, but nobody melted down, which is pretty good for a Friday afternoon.

We arrived home and Hope started the Wango Tango. Why? Because nobody loved her. Didn't make sense to me either and after twenty minutes of getting no where, I finally sat her on the couch and let her Wango Tango, figuring she would get it out of her system eventually. She never really let it go, and now she is sleeping. I never figured out what the trigger was, so I am hoping for the best- that tomorrow is a new day and Hope will think so, too.

Thursday, April 7, 2011

Persistance Pays Off!

Today was my grandson's, X, CSE. After two years and a half dozen meetings, it finally happened. X was deemed eligible for special education services. We had visited this before, but my son kept leaving the meetings with nothing and refused to teleconference me in. In dealing with adult special needs children, a lot of the same methods work. You need to know what you want, articulate it clearly, be persistent, and not take your eye off your ultimate goal. You also need to recognize when you have leverage and be willing to use it.

Shortly after Christmas, my son started talking about us visiting Michigan for Easter. I told him it was possible, but I needed to see my grandson classified for special ed and I needed to monitor the process to satisfy myself that everything was in order. Every time he asked, that was the response he got. When his wife asked about Easter, that was the response she got. Two weeks ago X's CSE was scheduled for today. Last weekend, I received a copy of the evaluations to be used for this meeting. Last night, I received a copy of the proposed IEP. This morning, at 7 am, I was teleconferenced in.

I only stuck my two cents in twice. On the Connor Scale (a frequently used, norm-referenced, behavior  checklist), Aggression was very elevated. Yet on the IEP, where they list areas taken into consideration for this IEP, Behavioral Interventions wasn't checked. I asked for an explanation. They told me that X was not a behavior problem. I did not bother pointing out all the physical things he had done, such as kicking the teacher and pinching little girl's butts, but rather asked how he scored so high in aggression on the Connor's scale. They had no answer. I insisted that it be put in his IEP that any behavioral problems will automatically invoke a Behavior Assessment Plan.

The district ended up offering 8 30 minute periods of resource support a week to X. This isn't going to cut it,  but they have a benchmark in place for the end of the year. They say X will have mastered 60 of the 110 sight words required by the end of first grade. When that doesn't happen, the committee can be reconvened to examine why this benchmark wasn't met.

I told the kids to sign it. At least he is classified. We can get it on the right services later.

So I will be in Michigan for Easter!

Wednesday, April 6, 2011

GB's Annual Review 2011

Today was GB's Annual Review. I brought my big girl's panties with me and a determination to keep the meeting civil, regardless of what Mrs. Very Stupid Chairperson did.

Usually, in CSE meetings in our district, parents start out by saying what they want. I was very non-committal and said I wanted to hear everybody else first. Mr. Teacher went first and said his class was a very good fit for GB's needs. He also said that besides recommending that she stay in his class, he would like to have her for the six week summer program. We agreed that as long as he was teaching it, so that she wouldn't have to adjust to a new teacher for six weeks, we would agree to it.

Mrs. Speech Therapist was next. She recommended adding  an additional speech therapy to work on scripts to help GB organize her thoughts when trying to communicate specific ideas. She also recommended making the social groups part of GB's IEP. Way to go, Mrs. Speech Therapist!

Mrs. OT (Occupational Therapist) went next. She had a two page report that documented how GB's disabilities affect her learning in a class room environment. She also documented delays greater than 1 SD in fine motor skills, manual dexterity, and motor planning. She added an additional OT session to GB's IEP. Mrs. OT rocks.

Mrs. SW (Social Worker) went next. She said GB was starting to open up and she would like to take advantage of this by adding a session. Thank you, Mrs. SW.

Great stuff and I hadn't even opened my mouth yet. Then came my turn. I want door to door busing. I refused to agree to anything else. The Dad played good cop to my bad cop. I had lots of support from everybody but Mrs. Very Stupid Chairperson. She said it was illegal and kept repeating herself over and over. I refused to sign off, the Dad encouraged her to contact the bus company. I think I will call a lawyer tomorrow and get educated about the special ed transportation law.

All in all, a good start.

Tuesday, April 5, 2011

At Least I'm Making Some Progress...

  • Separate gymnastic classes worked out well yesterday. Both girls did well and enjoyed it.
  • Hope is signed up for special needs swimming lessons.
  • Went to Hope's team meeting. It was interesting. First they took Hope off for height and weight. While Hope was gone I filled them in on Hope's behavior for the last month. Hope came in and I spoke about the environmental changes we have made. Hope spoke up and asked if they knew all the bad things she did. The shrink said no and asked her if she would tell them. She said "no, because then you would hate me." The shrink kept pushing and Hope shut down. I  finally told her didn't have to say anything if she didn't want to. Hope went back to class and the shrink wanted to know if I could set her off. I told  the shrink it was a stupid question.
  • Have a case manager for GB. Filled out reams of paper work today, and probably signed my soul away in the process- the last ten or fifteen minutes I was signing without reading.
  • My pain is a 7 at the moment.
  • Off to get the girls off the bus and go to therapy. We won't get back until almost eight.

Monday, April 4, 2011

Why I Will Never Take a Shower Again

I am a champion in the quick shower division. After thirty years of adopting and fostering special needs kids, I have to be. I wear my hair really short so that washing it eats up 30 seconds or less of my allotted five minutes. I usually come in under four minutes. Since the Dad leaves for work before the kids stir, my shower has to be a masterpiece of time management.

GB is the first to wake. She gets herself dressed for school (elastic waist only), takes her medicine, brushes her teeth, then goes downstairs to let Ellie out. After Ellie is done with her business, GB feeds her, puts her in her crate, and comes upstairs. I usually start my shower as GB leaves the bathroom and am done when she comes back upstairs. I then begin the arduous process of getting Hope out to school.

That is not how it worked this morning. As I was rinsing my hair, Hope came in to use the toilet. I stuck my head out of the shower and reminded Hope to use the toilet and NOT touch anything. This was necessary because on Saturday she was permitted to use the toilet by herself and she got out the spray cleaner with bleach and sprayed my good bath sheets and ruined them. I was out of the shower in less than two minutes. In that time, Hope filled the toilet with a roll lots of toilet tissue and quickly flushed three times. Before I had a (regular) towel around me, the bathroom was three quarters flooded. I quickly mopped up the mess with towels, trying to contain the problem. I can't do anything without a cane yet, so my efforts in plunging were futile. It is the master bath, the one with the raised toilet seat, the ONLY one I am allowed to use.

I do not need a shower that bad. Ever. This is Day 14. I am beginning to fear that this will be our new normal for a while.

Sunday, April 3, 2011

So Much for a Quiet Sunday...

The Dad took GB with him when he took his mom out to IHOP for breakfast this morning. That left Hope (Day 13) with me. Our morning was the same old same old. I lost my therapeutic parenting for a minute, just before lunch. She was screeching (again) about how everybody hates her. I got down to her level and promised/threatened her that if she woke up the baby, she would be sitting in a chair until bedtime. Not quite up to the empty threats I heard as a child, but a shocked look passed over Hope's face and she stopped.

This afternoon, the four of us went to look at a special needs sleep away camp for GB. The first thing that caught GB's eye were the brightly painted rocks scattered throughout the camp. They each had a camper's hometown, how far away it was, and an arrow indicating direction on them. Among GB's favorites were Tel Aviv, Israel (yellow), Austin, Texas (bright blue), and Chicago, Illinois (orange). The cabin we saw had a bright purple bookshelf that GB immediately claimed as her own. The camp had a miniature golf course, a stand on see saw, a very large pool, a stage she danced on with Hope, swings, slides, 3 climbing structures, a large creek, a separate arts and craft building, and a patio for barbecuing. GB loved it. I saw no red flags and the Dad seemed to like it. If we can stabilize GB, the camp looks like a real possibility. The director interacted well with GB and seemed to think it would be a good experience for her. There was no sales pitch and we spent most of the time talking about GB's likes, dislikes and needs.

If we had gone home after touring the camp, I think we would have been OK. We didn't. We stopped to buy Easter dresses, then went for ice cream. I will leave the rest to your imagination.

Saturday, April 2, 2011

Still Hope

We are on Day 12 of Hope's latest tirade. I don't know how many meltdowns she had today, probably because I don't want to. She  finally managed to alienate MK. 45 minutes into the rage that landed her in bed, MK tried to contain her, with the baby in her arms. Not a good idea.  The Dad lost his cool, but he has been taking the brunt of Hope any time he is home. I had no trouble taking over. She didn't get a rise out of me, but I have to admit I wasn't feeling much empathy either. Hope is asleep and most of my furniture is intact. Fortunately, one thing we have been good at is giving a fresh start every morning.

I let Hope go swimming this afternoon, even though I didn't think it was a good idea. Tomorrow, Hope will be next to one of us all day. We are staying home from church and aiming for boredom. And this time, I will not have MK fighting me.

Friday, April 1, 2011

Show and Tell

Hope continues her week long *snit*. I have stopped waiting for it to pass. She was fine this morning until GB woke up. Then she *couldn't* do anything. Couldn't use the toilet, couldn't find a shirt. Couldn't wear such ugly pants, couldn't put on a sock.  Couldn't find her sneakers until GB handed them to her. And then the rage started. Doors, walls, high pitch screeches, things flying across the air. The rage lasted until GB and I were sitting down to breakfast. Hope wanted to know where her breakfast was. I told her I wasn't feeding out of control children this morning. It was magic. The rage was gone. The polite, controlled Hope was sitting at her place saying "May I have breakfast, please?", as if the last 45 minutes hadn't happened.

I am grateful that the predicted snowfall never came. After breakfast, the girls grabbed their backpacks and we went to the bus. The only reminder of the morning was GB had her show and tell in her book bag and Hope went without. GB had used the time Hope was raging to pick something out and Hope-  well Hope was busy raging. Better luck next week.