Thursday, May 31, 2012

Brief Update

Last night was really tough here.
Hope will be in respite from after school tomorrow until Sunday afternoon, then the SPOA worker is going with Hope, Joe and I to the psychiatrists Monday morning.

Wednesday, May 30, 2012

Warning: Politically Incorrect

Open adoptions are not always best. I know my oldest adopted daughter, now 26, has questions she would like answered. She deserves answers and I wish I could  give them to her.  GB, on the other hand, knows far more about her biological mother then she is capable of understanding. Her BM is in Lalaland and GB does not need any more stress in her life.

On Sunday, GB wanted to go to a Bar-B-Q with her bio grandparents at her aunt's house. GB and I spent a lot of time talking about the fact her birth mother would be there and her bio half-brother. Her Grandmother assured us that she would have no unsupervised contact. GB had a great time with her aunt and cousins and her grandmother kept her promise. GB was able to tell her BM she was there to see here aunt and was not speaking to her. She came home happy and relaxed, pleased with all the people she had seen, talked to and played with. She mentioned her BM tried to talk to her by herself, but Grandma hadn't let that happen.

The next day the phone calls started. People calling to ask me why there was a video of GB dancing on BM's page, captioned my baby dancing. All GB's biological family live within ten miles of us. I am afraid of strangers coming up to my daughter and saying things like "Aren't you BM's daughter?" GB needs her physical and her psychological space. She does not do well with strangers' lack of boundaries.

I may not be politically correct, but when BM walked out on my granddaughter without looking back, she forfeited the right to have her feelings influence any decisions about what is in GB's best interest. Her parental rights were terminated because of abandonment. BM went over three years without calling or seeing GB. For eight months of those three years she was in a homeless shelter less than a half mile from us.

I  told her to take down the video. She refused. I reported it to FB. They said they would take it down. GB will have no more contact with her BM until it is in GB's best interest. I do not know when that might be, but I suspect it will not be any time soon. This adoption is officially closed.

Monday, May 28, 2012

Change What You Can

Days four and five of Memorial Weekend went much better then the first three days of our seven day weekend. Hope didn't change. Hope actually peed her pants three days in a row. GB's tolerance was so low, she spent Sunday afternoon at her biograndparents. She did come home looking more relaxed and like herself.

The change was that Kristine and her family came to spend two days with us because my week sucked. The kids stayed at home, swimming, jumping on the trampoline, climbing the fort, swinging on the swings, painting giant art on the drive way and giving each other colorful tattoos. There were blow ups, rages, and a lot more whine then wine. But we enjoyed our wine and each others company and that alone gave me strength to try again. Thanks Kris!

I hope you all had a good weekend, too!

Friday, May 25, 2012

Atypical Atypical

Lots of parents have multiple special needs kids. All of mine have had special needs, the usual alphabet soup. GB is FASD, with an IQ 2 standard deviations below average. She is also Bipolar I with psychotic features. We added the diagnosis of Autistic 18 months. I don't actually think she is autistic. I think there is a lot of overlap between FASD and Autism and that the evaluators preferred to see Autism. There is more funding, at least in New York, for Autism then there for FASD. The NY educational system doesn't have a clue what to do with FASD students, so having the Autism label gets us the right services, and we build her goals around her needs. 

GB should have the most intensive needs of all my children. When she did, and we managed her world around her needs, she did well. She was doing so well, we thought we could add Hope. I knew it would be a rough adjustment. In the beginning, Hope was as difficult as I expected. Now, 21 months later, she is more difficult. After she is home from school, Hope tantrums at least 4  days a week. GB fends for herself, using the coping mechanisms she has been taught. I do not know how to meet Hope's needs at this point, but I know exactly what GB needs. I just don't have time to meet them. I am too busy trying to contain Hope. This morning I am tapping myself to Lisa's Trauma Mama Text.

The shrink said yesterday that when Hope is hospitalized, the extreme stress on GB will go away and she will go back to being my normal GB. I doubt it is that easy and I would prefer not to hospitalize Hope at this point. So, back to surviving day 3.

Thursday, May 24, 2012

Round and Round and Straight Down.

Hope followed yesterday's schedule until 4 o'clock, when GB's worker showed up. Hope proceeded to kick me out of no where. By the time I had her wrestled down and safe I was already beat up. This morning I was ready. Hope grabbed my leg and tried to pull me to the floor and I instantly had her pinned. The social worker called the shrink. I already know the shrink was her hospitalized. I just want to survive the weekend. I am so tired of being beat up. It does not bode well that she is not hurting me will she rages anymore, she is consciously choosing to hurt me. This day two of seven.

Wednesday, May 23, 2012

First Day od Our Seven Day Memorial Weekend

I don not remember having a full week off for Memorial Day when I was  a kid. Back then, Memorial Day didn't even have to be on a Monday. Our school district is the only one I know of that has given seven days of unstructured time to children that struggle through a weekend. I am trying to counter this by scheduling each day. Today:

  • Medicine, morning, routine, breakfast
  • a have hour of TV while Hope's medicine kicks in
  • Chores: make beds, empty dishwasher (GB), make sure all dirty socks are in downstairs hamper (Hope)
  • Friend bringing her sons over to put used Little Tykes tunnel set together.
  • Yogurt parfaits are the snack today
  • pizza and juice for lunch
  • Hope and T play in yard
  • GB and J are doing crafts
  • Fruit for afternoon snack
  • Boys and friend home
  • Half an hour quiet  play
  • GB's DDSO worker visits
  • GB is cook helper, Hope sets table
  • medicine, baths, hair, teeth
  • a game of sticks and stones
  • Tapping and bed for Hope
  • GB reading
  • Tapping and bed for GB
Will it work? I have no  idea.  At least it is a starting point and gives us a frame work to use.

Tuesday, May 22, 2012

EFT: Emotional Freedom Technique: Tapping

EFT is the acronym for Emotional Freedom Technique, commonly refereed to as Tapping. It is based on the Chinese acupressure points. It is possible to lead the child in tapping, with you tapping each point on your self and saying the script out loud and the child following your lead and repeating the script. If your child can't or won't do that, you can tap on them directly, speaking the script as you go. There are many scripts you can find online, with videos to follow. If you stick with it, your child will memorize scripts and be able to use them at the appropriate times.

The illustration above shows the acupressure points used. I always start with the forehead, work my way downwards, then end with the crown of the head. 

This link to Lisa's Life in the Grateful House where I started. She has such a good post as to why you should tap, that I will let you read it there. I am using tapping on myself, particularly after Hope has used up my last ounce of energy. I use it with GB to reinforce the self-talk she already has been taught as a technique to use when she is overwhelmed. For Hope, I am using a script Lisa and her daughter made up just for Hope. There are also  RAD scripts on Lisa's blog to get you started.

It has only been a couple of weeks that we have been tapping, but both girls request it. GB has actually requested that I tap with her when she has recognized she is getting dysregulated. 

Tapping isn't a cure for our kids, but it is another tool to use on our journey of parenting special needs children.

Monday, May 21, 2012

Home Again, Home Again, Jiggetty Jig

We arrived safely last night around 11pm. It was a good feeling, especially after wandering aimlessly being side tracked in NJ and DC.

My niece's graduation was as unique as she is. She concentrated on her accomplishments in soccer, Tae Kwon Do ( third degree black belt), the importance of family and her faith. She didn't mention her GPA of 3.98 or being a member of the national honor society. Our Christmas pajamas made her slide show.

Hope made  the week interesting, but doable. She raged in the middle of my nieces party, but we were prepared. We took her to an upstairs bed room, closed the door and windows, and waited her out. I missed about 45 minutes of the party and The Dad missed almost two hours. GB's cousin, Kayla, was there and GB had a blast.

We are making small, but significant progress utilizing tapping (EFT). Tomorrow, I will briefly describe what tapping looks like when we use it and add the links that were most helpful to me. The best thing about it is you and your child don't have to believe it works. As long as it is done in a controlled soothing voice, your belief or disbelief doesn't affect the outcome.

Friday, May 18, 2012


After an awful start to her day yesterday morning, Hope was stuck within arms length of me for the rest of the day. She did not get to go shopping, she did not get to go to the movies. She missed a soccer game and Tae Kwon Do. What she did get is a lot of my undivided attention. She colored. We baked brownies. We reviewed her safety contract. We talked about hospitals. We talked about respite. Hope asked me to tap with her. Not only wasn't she fighting it, she asked for it. I was happy to oblige. Later, as I was putting her to bed, she asked me if I tapped with GB every night before bed. I said that I did. She asked me if I could tap with her before she went to bed. I did.

When she woke up this morning, she had another awful start. But yesterday, yesterday was progress!

Thursday, May 17, 2012

It Can Be Hard...

Hope had a full blown rage last night. The Dad was not here. It lasted 2 1/2 hours. This morning I woke up to Hope raging with The Dad. In the process, Hope punched GB. GB defended herself. I took GB down stairs and left The Dad with Hope. It was a nice two hours. GB and I had a chance to tap. The Dad is working for the next three hours. Having Hope within arms length crimps my visiting with  my sister. Hope seems to be unable or unwilling to hold it together. The Dad is taking GB out after he is done with his calls. I am blessed with Hope's company for the day. May be I can successfully tap with her during her involuntary time with me.

Wednesday, May 16, 2012

Safely in North Carolina

We have all arrived safely in North Carolina. Hope had a major rage when we stopped for dinner last night. She has only had one short (25 minute) rage today. Today she was set off by the word "no", which is almost always a trigger for her. Last night, she was sleeping when we stopped for dinner and woke up raging. The shrink and the waiver worker are saying she will be hospitalized if we can't stop the raging. The Dad is resistant to outside the home respite and to PRN meds. It doesn't sound like he is going to have much of a choice. The whole situation is depressing.

At least I get to spend 3 days with my sister and niece. They are a lot alike!

Tuesday, May 15, 2012

A Mixed Bag

  • The girls enjoyed planting wave petunias in GB's garden. Hope asked for a garden of her own.
  • GB's  anxiety level is at an all time high. I started Tapping with her last week and now she wants it every night. She says she sleeps better.
  • Hope hasn't bitten me in two whole days. Her psychiatrist said I had to go for a tetanus booster and told me  that the prognosis for Hope was pretty grim.
  • I called the waiver worker yesterday morning and she spent an hour and a half telling Hope that physical attacks had to stop. The worker is meeting with the school tomorrow, as it is required by one of her forms.
  • We are driving to Raleigh, North Carolina, for my niece's graduation tonight.
  • GB's teacher said she has been resistant for the last couple of weeks. I made an appointment for next week so that GB, the teacher, and I can meet. I am not sure exactly what "resistant" means.
  • Hope is up to 15 mg daily of Abilify. That is a lot for a 60# six year old.
  • I have to call my doctor this morning to get an appointment for my tetanus booster and to make sure I have enough Valium to knock me out for the car ride. The Dad did not want to put Hope in respite while we were in North Carolina.

Sunday, May 13, 2012

Mother's Day-The Reality

Mother's Day, as it exists now, in this country, is a commercial success for Hallmark. It wasn't always that way. During the 1600's, the early Christians in England celebrated a day to honor Mary, the mother of Christ. By a religious order the holiday was later expanded in its scope to include all mothers, and named as the Mothering Sunday. Celebrated on the 4th Sunday of Lent (the 40 day period leading up to Easter), "Mothering Day" was celebrated honoring all mothers of England. Since many of  England's poor worked as servants for the wealthy,  jobs were located far from their homes and the servants would live at the houses of their employers. On Mothering Sunday, the servants would have the day off and were encouraged to return home and spend the day with their mothers.

In 1914, President Woodrow adopted a resolution that the second Sunday in May was to be set aside to honor mother's. It took less then nine years for Americans to commercialize Mother's Day.

In our family, Mother's Day always involves a mix of emotions. The little ones plan and plot surprises. I still struggle with the loss of my mom, even though four years have gone by. The Dad's Mom has Alzheimer's and doesn't remember anything. GB has been angry at her Birth Mother for several years now and does not, even in her own mind, consider BM as Mom. Hope gets angry, I think, because in her mind, she doesn't have a mom. MK is proud to be a mom, but has never resolved her feelings about her birth mother, prenatal alcohol damage, and being given up. I am her Mom, but in her mind, the worst mom in the world. J always finds Mother's Day a source of guilt- for expectations he had for himself and didn't meet.

With all these emotions swirling around, Mother's Day is tiring, sometime exhausting. I try to take several minutes to myself to be grateful for the mother I had for 50 years, for the birth mothers of my children who chose life when they didn't have to, for the children God gave me to love and end with a prayer that my children will find peace with who they are. Then I join in whatever celebration my children decide they want this year. And maybe, we get a little closer to acceptance.

Saturday, May 12, 2012

Let Down, Again

The HCWS worker meeting with us and the school yesterday was canceled. No reason. No rescheduled date. And we still have no services. Psychiatrist Monday morning.

Friday, May 11, 2012

My Friend, the Papoose Board

The first week after Parenting in SPACE was better. Hope didn't seem to care that we were gone, DAY (Defiance, Aggression, Yelling) was working well for both girls. The Home and Community waiver worker worked with Hope and I to come up with safety plan, which incorporated  the Papoose board. We went to visit friends for three days and were rage free. It wasn't good- Hope was still stealing and lying everyday and she ended up with 3 or 4 DOs most days, but it WAS better.

Then Therapy Tuesday came. Right now, we are not doing therapy on Tuesday because we are still on waiting lists for an attachment therapist- lot's of them. Hope had been caught Monday night with a toy that she took from her classroom. I told her she would have to return it. Tuesday morning I checked to make sure the toy was in her book bag. I told her I was going to email Ms. V.Y. Teacher, so that she would know what was going on. Nothing new- I have been in regular email contact with her teacher since Hope's honeymoon ended. Hope has always been aware of it.

Tuesday morning brought a different reaction from Hope; she swiftly crossed the room and kicked me. She then sat on my laptop so I couldn't email her teacher. I called her on aggression because she kicked me and told her to have a seat. She raged. She raged through the bus pick up. she raged through the first hour of school. She raged in the Papoose board, so nobody got hurt. When she calmed down and was in control of her body again, The Dad took her to school and the school  therapist processed the stealing behaviors with her again.

It was pouring after school  and I waited at the bottom of the driveway in my car for their bus to come. GB got off the bus complaining of too much homework, and Hope got off with her arms crossed in front of her trying to pin me with her death ray stare. They got in the car and I drove up and around the driveway to the front door. GB quickly went inside to see the Dad. I was gathering up my stuff to bring in when I felt a sharp pain on my head I looked up to see Hope's face inches from mine. She had unbuckled and deliberately head butted me because she thought I was taking too long. I told her that head butting was aggression and she had to go inside and take a seat. She raced ahead of me and by the time I got inside, she had already kicked The Dad. We went through the Papoose board routine and Hope calmed in less then thirty minutes. The Dad let her up and reminded her that she still had time to do and a DO when her time was done. The Dad went upstairs to take a work call and moments later, as I was walking into the kitchen, Hope comes over and deliberately sunk her teeth in me and kept on attacking. I wrestled her into the Papoose board and ended up with another bite, a lot of claw marks, and a bruised right breast. It took over an hour for her to calm down. I wasn't taking any more chances of being beat up today, so Hope had a PRN and her night time meds before I let her up. I fed her a quick dinner and she was in bed by 6:00.When she realized her night was over, she started screaming again.I told her I hoped tomorrow would be a better day.

Wednesday  was better- only one rage and Hope caught up on her DOs. We all had ice cream for dessert, she went to bed easily, and I had reasonable hopes for Thursday. Hope went to school with minimal difficulties Thursday morning and did a good job on her HW without trying to involve anyone else. Dinner was uneventful and I was hoping for a quiet bedtime. My hopes were dashed when Hope spit her medication in my face. I gave it back and insisted she take it. Once she had swallowed her meds, I turned to check her tub. That was the first time she bit me. She got four bites on me before I got her out her safely out of the bathroom.  She raged for the better part of an hour. Once she calmed down, a quick bath was followed by bedtime.

I am discouraged and sore. Tuesday was the worse day Hope has had in over a year. I am grateful for the Papoose board, because without it, I would have looked like an abused woman again. The HCWS worker is meeting with us and the school today to finish our service plan. I hope they provide some support soon.

Thursday, May 10, 2012

The Power of the Ordinary

Last weekend, The Dad and I took the kids to visit my friend and her family in Pennsylvania. Despite three special needs kids, we had family fun, a Trauma Mama EFT conference call, an IEP a meeting with a limited bureaucrat that lasted three hours longer than his knowledge, an adoption seminar, swimming, and even took everybody to Friendly*s. The kids had no meltdowns, lots of fun, and the adults had ADULT CONVERSATION. Sure, the kids required constant monitoring and frequent intervention... but there were four adults to do it. At other times we have gone to the zoo, horseback riding at a resort, and swimming mixed into everything. The kids love to swim.

The Power? Besides adult conversation, of course. Our kids are not "special needs" when our families are together. The structure, the rules are just what they are. They are not compared to what other children can do. Pull-ups at night, medication, quiet times... they just are. Some how, this gives our kids the gift of just  being kids. Enjoying the normal activities that go with childhood. They are friends that share a growing stash of memories and look forward to what comes next.

The connection is a normal connection between families that are friends. The more the connections, the better. For our kids. For us.

Monday, May 7, 2012

What I Want For My Kids

When I started raising special needs kids thirty years ago, I didn't spend a lot of time thinking about what I wanted for them. I assured them they could do anything if they tried hard enough. I assumed they would graduate from high school and go on to college. I assumed they would be able to navigate the world, finding their niche, and be productive and happy members of society.

In some ways, they met my expectations. They all graduated from high school with regular diplomas, one or two years after their age mates. Two out of three went on to college, although without a lot of success. Two out of three are supporting themselves- minimally, but without government help. None of them are comfortable in the neurotypical world. None of them feel  as if they are part of the mainstream.

What I want for GB and Hope, now, after watching my older kids grow up and learning many things that weren't known in the eighties and nineties, and doing a lot of growing up myself, is different.

I still want them to do the best they can and work hard, but now I acknowledge that there are sometimes that hard work isn't enough. I want them to do their best, but I have learned that some accomplishments come at a price I am not willing for them to pay. I still want them to productive and happy members of society, but I now know that they will need direct support to achieve that. My older children never had all the support they needed in school because I didn't know what that support  should look like. I knew they had special needs, but  I looked at those needs as something that needed to be fixed, not as something that was an intrinsic part of who they are. That was how the rest of the world looked at them, but by accepting the rest of the world's view, I deprived my older children of the feeling of unconditional acceptance.

I won't make that mistake again.

These days, I spend as much time making memories and providing varied experiences for the girls  as I spend working on skill building. That requires a lot of contingency planning, because Hope still rages regularly. It also requires thick skin as Hope could play the lead role in "The Exorcist" during most rages. Thankfully God blessed me with thicker than average skin and experience finished the job. I am usually oblivious to anything except what the child needs. The jury is still out out on Hope, but I know that GB is already more self aware then any of my older children and is happier and more successful in school  than any other child I have ever raised. She has been taught coping skills and she uses them regularly.

That is a good start.

Friday, May 4, 2012

How We Use DAY

We no longer accept DAY in our house. The acronym stands for: Defiance Aggression Yelling. I point out the behavior to them, using which ever word applies, and give them a do-over. If the do over works, fine. If not they owe time. They have to sit quietly for eight minutes. They can't get up or make noise or their time starts over. Ugly, nasty faces are allowed however. As an incentive to get the time done, doing it well the first time  can result in shorter time. If Hope does her time right the first time, I let her up in four minutes. There is a fifteen minute window of time do to your time right.

If the child chooses not to complete their time in fifteen minutes, then a DO is added. Once we have a DO,  privileges are suspended until the  DO is done. Of, course, the DO can't even be discussed until the time is done. You have control over the DO. You can ask them for their suggestions. You  can just assign one. It can be as simple as a hug, or as difficult as picking up all the sticks in the yard (we have a big yard, with lots of sticks). I have been basing the DO on how much time and energy it cost me to get through their time: If it took twenty minutes to get the time done, the DO might be a hug along with an apology. If it took a ninety minute rage before they got their time done, it might be picking up the sticks or cleaning the playroom by themselves- both big jobs. You also control what privileges are suspended, again depending on how much time and energy they have taken from you. It might just be TV, it might be all electronics. Your choice.

The idea behind using DAY is to build your relationship with your child and make it stronger. It won't work if one of the parents are not holding themselves accountable for DAY. If I yell at a child, I need to apologize and repair my relationship. My goal is to remove most of the Defiance Aggression Yelling from our family life. That will allow us to focus more on building relationships.

Thursday, May 3, 2012

Over at Foster2Forever Today

I am guest blogger over at Foster2Forever today. I wrote about RAD and where we currently are with it. Please go check it out!

Wednesday, May 2, 2012

A Day Off From School

The girls had no school today. Ellie, GB's service dog, has diarrhea. MK is bouncing more and more as court gets closer. I have an appointment for a third opinion on the neuroma in my foot next week. Surgery seems inevitable. 

This week, we are focusing on DAY. Any Defiance, Aggression, or Yelling results in time out to get yourself back together.  We also implemented restitution or relationship repair. GB seems to be responding to DAY and I am seeing the first beginnings in Hope that she recognizing  that raging is not making things better.

Organizing is coming slowly, but it is coming. Maybe tomorrow will bring pictures.

Tuesday, May 1, 2012

New Post on other blog.

I have a court update on my other blog. As a result of getting waiver services for Hope, new ideas being brought home from Parenting in Space, and renewed togetherness on the part of the Dad and I, we have gotten more structure and therapeutic time into our day. I will start posting about that tomorrow.