Hope's Night

The first thing I want to say is once asleep, Hope ALWAYS sleeps through the night. Except for last night. Last night she woke up three times crying. She told me she was afraid of the dark. She has been afraid of the dark from the beginning. It wasn't any darker last night. The third time, I finally functioned enough to change something. I put her pillow at the foot of the bed, turned her around, tucked her in and told her it was no longer dark. YOU might not have believed me, put apparently Hope did- she slept the rest of the night.

I woke up this morning to Hope slamming my bedroom door. I asked her what was wrong and earned one of her "mean" faces. I told her to sit down until her father was ready to deal with her. When he came in the room and asked her what the problem was, she told him "Mommy was being mean to me". His answer? "Mommy isn't awake enough to be mean to you".

I really didn't want to get out of bed this morning :(

Tired

In the last week:

• My family doctor spend twenty minutes with Hope and offered ME tranquilizers.
•  My grandson has been sick and needed to to see the doctor three times + 4 hours @ hospital getting fluids.
• Hope's therapist asked if I was thinking of giving up.
• 1 1/2 days on girls school (won but tiring)
• Hope had a good day Thursday. Today is day # 4 of impossible.
• The Dad is fried- complaining that being with the girls is not relaxing.
• I hurt.
• I am tired.

and bedtime is five hours away.

On the plus side: I am at 23/500 in Corey's Fundraiser and I am registered for Orlando!

God Is Good

It is early Sunday morning and the house is quiet. Soon GB will be up and the morning will really start. Before I go to church, I sometimes find it helpful to write down the good things in my life. I thought I would share them this morning.

• My husband is the kind of man that would drive 4 hours to pick up friends who were unexpectedly stuck at the airport.
• GB loved the social group yesterday. There was one boy in particular that she hit it off with.
• Hope has made progress. She is still nasty and physical and tantrums for long periods of time, but usually can turn it off in a nano second if the carrot/stick is big enough.
• Mali has been sick for 7 days, but so far hasn't had to be hospitalized.
• Hope was sent home from school with pink eye Friday, but we got her right in to the doctors and he said she didn't have it.
• The Dad went on a field trip with Hope's class this week and had multiple opportunities to chat with her class' therapist. The therapist said Hope was starting to talk about feelings regarding her first adoptive family.
• I am at 15.5/500 in Corey's challenge to raise funds for Trauma Mama's who need help getting to Orlando.
• I am at 15.5/500 in spite of my current physical health.
• My granddaughter, who does Girls on the Run, cut 12 minutes off her time, comparing this year's 5k to last year's 5k.
• I have Soul Sisters on my side!

It Takes Time to Adjust

GB was diagnosed with autism six months ago. My reaction was one of shock. That was followed by months of not changing much of anything. I have an autistic nephew, besides my special ed degree, so it wasn't that I didn't what I needed to do. It was more like my brain refused to settle in one spot long enough to think anything through. In February, I managed to contact the DDSO to get a medicaid  waiver. Since she would be 8 before the paper work was done, it would qualify her for lifetime services. I was assigned a service coordinator who has been on top of the process. I have started, very slowly, to look different options to improve her quality of life. I fought the bus company. I signed her up for Challengers softball. I enrolled her in Special Olympics. Today is another milestone. GB starts a social group today.

Since I know the various needs of autism and am aware of the programs available, I started to wonder why two weeks of work took me six months. I came to the conclusion that I was working to incorporate new information into my mental picture of GB. I think, at least to some extent, all special needs parents go through this process when they receive any new diagnosis, even when they "should" have seen it coming. It is not a bad thing. Even though your child hasn't changed, you have. You now have new ways available to help your child. True, you mourn another loss, a piece of your child that will never be typical. That is eventually offset by all the new tools that are available to help your child. .

Wish us luck on our new adventure today.

One Foster Mother

This is not a post about the foster care system. It is not a post about foster kids. It is a post about a friend of mine. Belle has been a foster mother for twelve years. She has one biological child, a girl MK's age. She has had many children in foster care. Every child that has had their biological parents rights terminated while part of Belle's family, has been adopted by her. That, to date, numbers eight kids. Some with RAD, some autistic, one medically fragile, one cognitively handicapped, the rest with the inevitable trauma issues. She currently has three foster children, two of them siblings whom Belle has had four times before. Each time the girls were returned to the biological parents. The girls, now fourteen and sixteen, were just removed again, and are back at Belle's. They have told the judge the aren't going back to their biological parents again.

Looking at Belle's family, you can't distinguish foster kids from adopted kids. They are all nicely dressed. They all have extracurricular activities they are involved in, including gymnastics, karate, acting, singing, and cheer-leading. All of their special occasions are celebrated. They all receive all the services they need. They are a family in every sense of the word. Not a rich family, but a family in which every member's needs are important and met.

Belle is an amazing person, an awesome mother, and my friend.

Taking Care of My Girls or Fighting With the District

I met with the Director of Special Education this afternoon. I brought these notes with me.

Transportation
    
     Problem

    current aide is assigned one on one with another child
    both my children said she touched my eight year old autistic daughter
    aide got off the bus and went 50+ feet up my driveway to tell me she didn’t touch  no kid
    my daughter is afraid to ride the bus with this aide.

     Attempted remedies

    Contacted bus company who said my kid was a “fibber”
    Contacted school principal
    Contacted Director of Special Education
    Contacted Ass. Superintendent: after being given two weeks to deal with  difficulty, said he was unable to help and I should “do what I have to do”

     Immediate acceptable remedies

    Aide replaced on bus
    children moved to different route

     Systemic Remedy

    Every adult who comes in contact with my child, including bus drivers and aides, needs to be provided  with training, by professional trainers, on Fetal  Alcohol Spectrum Disorders and Autistic Spectrum Disorders.

 

CSE Chairperson, Mrs. Very Stupid Chairperson

       Problem

    Does not follow NYS Regulations
    Presents inaccurate information as fact
    Presents her opinion as fact (ex, my daughter is not developmentally disabled, Bipolar is the diagnosis of the decade)
    Decisions are determined before CSE meeting
    Has a multiple year history of trying to deny my child her FAPE


      Attempted remedies

     Have tried working with the Director of Special Education  to work around Mrs. V. S. Chairperson. Takes many weeks and concerted effort to get my  concerns even addressed. In the mean time, my children are denied necessary services

     Immediate Acceptable Remedies

    Director of Special Education to act as Chairperson for both of my children, effective immediately.

   Systemic Remedy

   Mrs. V.S. Chairperson needs to either be trained on the regulations governing a CSE and how to run a CSE meeting or she needs to be replaced as Chairperson of CSE.


The meeting lasted 15 minutes. The Director of Special Ed agreed to chair my girls meetings. She also agreed to add individual speech to the 2 groups Hope gets weekly. She suggested that  she ride with my girls and try to solve the problem. If that doesn't work, she suggested adding an aide just for my girls to make sure there were no further problems. I didn't even have to hire a lawyer.

Nine Months Today

We picked up Hope from her first adoptive family on August 25, 2010. Nine months ago, today. We were experienced special needs adoptive parents. It wasn't even our first go around with RAD. So what wisdom have I gained in the past nine months?

Old Wisdom:

• They never tell you everything. Even if they think they are, by the time an adoption failed, objectivity is out the window.
• Rages are inevitable.
• You are the enemy. Everything is your fault.
• Give up age appropriate expectations. Ain't going to happen.

New Wisdom:

• Older adopted kids are like elephants. Each specialist touches a part of them and describes that part accurately. The all miss the elephant itself.
• RAD hasn't changed. My energy level has.
• You do not have to be isolated. You need to put forth the energy to make and sustain connections.
• Special needs, whatever they are, are real. You gain nothing by trying to convince yourself and others that they aren't.
• Even with special needs, your kids need some exposure to the real world. If they can't handle it, regroup. You can try again another time.

My commentary:

I am not the same person I was twenty years ago. In some ways it is much harder. I am different. I received an email that told me I had changed and that person, who used to think I was wonderful, no longer likes me. The only answer I have is that I am doing the best I can. Hope is here and will remain here. That will have to be good enough.

"Something's lost and something's gained in living everyday"   Both Sides Now

Not For the Squimish or Prudish

When we adopted Hope, hyper-sexuality was one of her known issues. Corey warned me that I really had no idea what to expect. She was SO right. Hope has herself so raw we made a trip to the doctors yesterday. Hope cheerfully stripped and opened her legs. The doctor carefully examined her raw on the outside privates, then did an internal exam, carefully documenting what she found. It didn't phase Hope at all. I could have cried. The doctor talked to Hope about how she could hurt herself and that she should only use her hand and not do it too often. Hope told her she had to.

Since she is kept under very close supervision, Hope now masturbates through her clothes, using her foot, chairs, other peoples legs and who knows what else I have missed. At least it is documented for the inevitable report to CPS. Stopping Hope while she is masturbating results in a full blown rage.

The doctor shook her head and said she had no idea how to stop Hope. She warned me to protect GB. As if I needed to be warned.

PTSD and Me

My grandson is sick. I am concerned. Besides being concerned, it changes my day. MK is doing a great job at meeting Mali's needs and he is attached. MK is also still battling the adult versions of what RAD left behind. When Mali is sick, all her fears and insecurities come rushing back. So today is being spent with MK staying close. I will drive them to the doctors and I will do my best to meet my daughter's needs in a loving way. She needs it. She deserves it. I am praying for the strength to give it to her.

Virgin Trauma Mamas

What is a Virgin Trauma Mama? A Virgin Trauma Mama is a  Trauma Mama who is going to Orlando for the first time March 2-5, 2012. I have received emails from several women who NEED to be at Orlando 2012. I am sure Corey has received many more. Registration starts June 1, 2011. Villas will fill up quickly. If you are a Trauma Mama, you can find information at http://www.watchingthewaters.com/2011/05/on-your-mark-get-set.html. If you are not a Trauma Mama, please consider visiting the link anyway. There is a chip in button to contribute to scholarships for Trauma Mama's that do not have the finances to make Orlando 2012 a reality for them. Even if you could spare as little as $5.00, every little bit helps. I will be going. I "chip in"ed. I hope some other trauma mamas who need it as badly as me will also get a chance. Thank you for considering donating to the scholarship fund.

Inclusion That Works

Last year, GB was in a regular, first grade class. She was bullied, lonely, unhappy and hated school. This year GB is in a self-contained class with 7 autistic boys, ranging for one to four years older then her. This year, GB is learning, happy, and included.

I had assumed that choosing a self-contained class was giving up on inclusion. I was wrong.

Last night, GB's school had their annual talent show. GB was so excited and insisted on going. "All my friends are in it", she insisted over and over. So her Dad took her. GB came home glowing. Her Dad came home amazed. Children of all ages smiled and said hello, stopped to talk to her, and sat near her. During the show, GB was able to tell him what the next act was, who was in it and how she knew them.

My GB is part of her school.

Mean People Suck!

A lot of my friends are "trauma mamas". I was fortunate enough to be able to go to Orlando last year (You can read about it here) and met the most amazing people in the world. They were also parenting traumatized kids and they "got it". They knew at a level beyond words what my life was like and how much energy I pour into my girls. I still have regular contact with a lot of them and that contact keeps me sane, especially when the world is telling me, in one form or another, that I am the crazy one. I am blessed by each one in my life.


One of the women, who happens to be a cornerstone in my life and the life of many others, has hit a rough patch of her own. All of us trauma mamas get it. Most A lot of the outside world does not. And without knowing what our kids have lived through, the obstacle courses we have run, looking for help, and the behaviors our families have had to deal with while trying to heal our traumatized kids, people who know nothing about our world pass judgement. Some of them, acting out from their own hurts and fears, get very nasty about it. So to my friend, I say "You are an awesome human being. Mean people suck. Do not listen to them".

And if you happen to be friends with a trauma mama, today would be a good day to go give them some love.

From Hope's Point of View

The last five weeks with Hope have not varied much and you are probably as tired of reading it as I am of writing it. I decided to do something different today. I tried to write today's update from Hope's perspective.

Today was not a good day. When I woke up, Daddy was already gone and GB was cuddling Mommy. I do not like GB, so I didn't get cuddled. We got dressed for the pool. GB wore the beautiful purple suit with the skirt and butterflies. I had to wear my red and white polka dots because I do not want to match GB and my mean mother wouldn't make GB change. GB always gets dressed first, so I never get to wear what I want. It is not fair- everybody likes GB better.

Mommy made me oatmeal, but we were out of the milk I like and she used organic milk- yucky! We put on our cover-ups- GB's is a pretty pink, while mine is plain purple. We packed the bag. GB always gets the tie-dye towel. Mine has butterflies, but I don't like them anymore.

We got in the car. I have to sit in a car seat. GB doesn't, cause Mommy likes her better. We met Grandma at the pool. GB got to hug her first because Mommy put the lock back on my door. She is SO mean. I like the pool. Grandma tried to carry me out to the deep end, but I can't swim, so I wouldn't go. GB swam out to the deep part and played with Grandma. Mommy made me practice floating. I am good at floating, but then I was afraid Mommy would make me try to swim, so I screamed until she took me back to where I could stand.


GB was playing with another girl. I didn't like their rules, so I told them they had to play with mine. I got mad when they wouldn't and Mommy made me sit out. EVERYBODY likes GB better. When I was back in the pool, I played with diving sticks. It is boring to play with diving sticks by myself. I threw one out to Grandma. She got it and brought it to me and told me not to throw it where I can't get it. I threw it right back in the same spot. Grandma carried me out and made ME get it, even though I was scared and Mommy didn't help. I kept throwing the stick out, Grandma kept making me get it and I kept waiting for Mommy to help. Mommy told me if I did it again I was done swimming. I was mad that Mommy wouldn't tell Grandma to stop, so I threw the stick as far as I could. Mommy didn't even let me get it! She took me right out of the pool. Then I had to watch GB get MY stick. I hate GB. GB is a better swimmer.

After a really long time, Mommy said I could have one last swim before we went to lunch. I tried to take my diving stick in with me, but Mommy wouldn't let me. Mommy likes GB better. When it was time to get out, Mommy sent GB to get dressed first. GB always goes first. When GB came back, Mommy took me to get changed and left GB with Grandma. I told Mommy that I could get changed by myself. She got changed behind one curtain and left me and my clothes behind another curtain. I didn't like the curtain. I went to find a room without a curtain. I hadn't gotten very far when Mommy called me back. She is always telling me what to do. I hate that. I kept looking for a room. I got lost and scared and started crying. Mommy was there and already dressed and carried me back to the curtained room. I wouldn't get dressed and Mommy started to dress me. I kept telling her not to touch me, but she wouldn't listen. I got very, very loud so everybody could hear me, but Mommy didn't stop until I was dressed.

We went out to lunch. Mommy made me go with her, but GB got to ride with Grandma. I had to sit next to Mommy and Mommy got up with me every time I wanted to get something. Grandma sat with GB. I hate Mommy and GB. I tried to kick GB under the table, but I missed and kicked Grandma. I tried to tell them it was an accident, but Mommy pulled my chair away from the table. That's so unfair!

We went home and I told Mommy I had nothing to do. Mommy's suggestions were stupid and I told her so. She made me stay right next to her for the rest of the afternoon- just because she had stupid ideas. MK bought me crayons and paper and that isn't what I wanted to do. I told MK she was stupid. She took them back. I stuck my tongue at her. Even MK likes GB better. 


I told Mommy how stupid she was and she made me sit on my mat. When I got off,  she put me back and that hurt my feelings. I hit her. She held me tight and said I couldn't hit. I HATE being held tight. I kicked and screamed and she wouldn't let go. I hate stupid Mommies. I screamed for a long time, but then my throat hurt. Daddy came home for dinner. I ate right next to him. I didn't like what MK made for dinner. MK never makes something that I like for dinner. Mommy gave me medicine and watched me put my pajamas on and told me I had to wait for Daddy in bed. What a stupid day. I never get to do anything!

Payback from Hope

Hope continues her behavioral reaction to contact with her Texas family. If I had to summarize it, I would say it SUCKED was mean. She screamed all the way to therapy, had two meltdowns, one before therapy and one after the therapist ended the girls joint session 20 minutes early and only kept GB. After therapy, she unbuckled and got out of the moving car. Thankfully, I wasn't moving fast as I was in a parking lot. She hasn't done that since the very beginning. I made sure the child lock was back on. No school tomorrow. YIPEE!

A Child's Future: Determined by Economics

Foster Abba, over at The Final Maze has been writing thought provoking posts on the cost of special needs adoption. They have been banging around my head, but nothing jelled until a friend made the comment that the services her RADling needed were available in her town. So why isn't the child receiving them? Their state medicaid won't pay for them and they can not pay out of pocket.

GB is getting exactly what she needs from the school district. Our school district is better than most local school districts, but the real reason GB is getting what she needs is that we could afford a lawyer, and paid her almost seven thousand of dollars. Until three months ago, all of GB's psychiatric care was paid out of pocket because nobody competent accepted ANY kind of insurance. Thousands of dollars. I don't know exactly how much because I didn't want to know and am fortunate enough to be in a position that the money was available. We recently switched the girls to a provider who accepts our insurance. She wasn't taking new patients, but with finesse (yes, me), persistence, and a little outside help, we eventually got them in. It only took seven months. She has just the right experience and I am thrilled. Until this morning, I hadn't given the fact that the provider she belongs to doesn't accept medicaid. GB's medicaid waiver was approved last week. I applied now so that as an adult she would be eligible for all the DDSO services. Now, she could receive pca and respite hours and  social groups. Even without the medicaid, GB would have these services. I want DDSO services for when I am no longer here to take care of her.

Where am I going with this? The way the system works now, a special needs child may be looking at two very different outcomes for their life, depending on how much money their adoptive family has to pay for private services. That is wrong on so many levels. Society is responsible for these children and when they take on this responsibility, they we take on the obligation to do it right.

I wrote this from the perspective of an adoptive parent. I haven't been a foster parent for many years, but as I reread what I wrote, the argument holds up for foster children as well. If we take a child from their biological family, we take on the responsibility  and obligation to do it right.

Economics should never determine a child's future. Society has an obligation to provide what each child needs.

Adopting From a Disruption: Texas Parents Again

Hope's "Texas Parents" called last night. The conversation with them was short and appropriate. Then they put their children on, one at a time (Hope had three siblings). Each child cried and told Hope they missed her and wanted her to come back and live with them. Hope had a tough night and ended up in bed without dinner because she just refused to eat. This morning Hope was agitated and tried to wear the shirt she was wearing when we picked her up. It was too small and weather-inappropriate. What are these people thinking? What was I thinking? Maybe when you adopt from  an failed adoption , the past just needs to stay in the past.

Black Children in White Families

Hope has been taking swimming lessons in a special needs class. She enjoyed the first few classes and can even keep herself afloat a little bit. Yesterday, she had a problem. She had a new instructor. He was black. Hope has said from the very beginning that she doesn't like black people and wished she was white. She will talk about it if you insist, but really doesn't seem to know where the feelings came from.

I took the opportunity yesterday to talk about her feelings in a concrete way. I told her everybody was different and skin color was only one of the ways people could be different. I told her she needed to deal with people, even if there was something she didn't like about them. I also told her I loved her and she wouldn't be her if her skin was white and that would make me sad.

I know I missed the boat and our conversation was totally inadequate. I don't know what I could have done different. Any suggestions?

Finding Balance

When you have special needs kids, finding balance is important. You don't want to make their world unnecessarily small, while you also don't want to push them beyond what they can handle. It is an issue in big things like school and in less important  things, like activities. GB's widely scattered abilities make finding this balance even more difficult.

Last night, GB tried out a new gymnastics class. The class she is in will not exist in September and her NT "friends" are moving on to other activities- activities that just aren't doable for GB at this point. I am sad that she will lose weekly contact with these girls, after almost five years of having them as a regular part of her life. Fortunately, GB still enjoys gymnastics. Unfortunately, our safe, small, non-competitive gym will only have one class that is appropriate  for her. It is their "team" class. They don't compete, but the class is 90 minutes long and has a dance component. The girls in this class take their gymnastics  seriously. There is only one girl who is more skilled than GB and  one girl  her age already there. GB didn't have a problem with any of the girls- I think they are so focused on what they are doing themselves, GB's differences didn't make the radar screen. It probably helped that she was noticeably younger than most of them. It is almost a $1000 for a year of this class and I am reluctant to lay that kind of money out when I am not sure it will work. Maybe we will try the class again in a couple of weeks.

One of GB's talents is gymnastics. I want to let her develop her strength. It is not good for her if all we ever do is try to shore up her weaknesses.

Wanted: Mojo or Therapeutic Big Girl Panties

You ever loose your mojo? The Dad is away, NYS NCLB testing started last week and continues this week, GB starts shaking at the idea of riding the bus, and the baby has 103 temp. So of course, being the experienced therapeutic parent, I cancelled everything and we had a quiet afternoon at home. NOT.

When I picked up the girls, I also picked up a friend from GB's class that had also been testing for 2 weeks and is autistic. GB's friend was close to overwhelmed with anxiety before we got in the van. During our 5 minute ride home he told me dozens of times how stressful riding in the van was. Once we were home, the kids had snacks and he and GB went out on the trampoline. They came back in, noticeably shaken. They had been on the trampoline for maybe two minutes. No, I wasn't out there supervising. I was in the kitchen trying to help Hope cope with a melt down because her Daddy wasn't home (He is never home when they get home from school). The friend wanted to go home. He said my house was too messy. He was right, but I wasn't going to do anything about it at the point. I tried to building with them using the architectural blocks. I tried the Wii. I even tried ice pops. Finally I gave up, called his mother and met her at the local park. GB and her friend played well for thirty minutes and we ended the play date on a good note.

On the way home, GB tells me her friend kissed her on the lips while jumping on the trampoline. She said after that, neither of them wanted to play anymore. I am a play date failure. We will not try another play date until I find my mojo, or at least, my therapeutic big girl panties.

Missing Two Days

Blogger is back after being gone for almost two days. It ate two posts- one that had been out there already and another that was almost complete when it crashed. Maybe they will come back, maybe they won't.

Yesterday was a beautiful day here. It was bright and sunny, about 70 degrees and all the spring flowers were in bloom. I went to lunch with a friend and The Dad surprised everybody by coming home early. An early dinner, baths, and both girls were asleep by seven.

All state testing is done. I am still picking up the girls, so GB's bus fears have calmed down. Today is gray and rainy, but with things settling down at home, I am not bothered by it.

After all these years, I am still occasionally caught by surprise by how much changes of routine screw with my kids.

Dejavù All Over Again

My conversation with Superintendent yesterday was suppose to end the saga of the bus aide. He assured me he made it clear to the owner that professionalism would be required and that there would be no kind of contact permitted. The girls came home on the bus today. This time, Hope came off in tears. She cried because the bus driver will no longer allow them to sit together. The aide told her to knock off the noise. GB told the aide she couldn't talk to her sister like that. The aide followed the girls off the bus, glared at me, and snarled  that she never touched no kid. I am feeling real reassured that everything is taken care of. I have to start all over tomorrow. This time I will start at the superintendent and go from there.

Love isn't always enough...

My little RADish, Hope, is currently holding her own. Not doing well, but she can be contained within our structure. As of this moment. Until something changes.

I have many friends  who have/are doing their best to raise deeply traumatized children. All give all their love, all try many types of professional help.  This week has been a long week for many of them and they have struggled with decisions no parent should ever have to consider. Psychiatric hospitalizations, RTCs, even dissolutions.

If you have a friend IRL struggling with a RADish, have compassion. If you read a blog and someone seems on overload, suspend judgement. No matter who they are, nobody goes into adoption expecting failure.

Support, pray, love these people. They are trying to do an impossible job, and do it well. They have my admiration.

Happy Mother's Day to the Mothers Who Make My Day

My Mom  1937- 2008

Three Moms get me through my day. Since they share little in common, I wrote three separate thank-yous. 




Dear Mom,

It is my third Mother's Day without you. I still miss you many times during the day, but now it usually with a smile. The physical stuff is scary, but I remember the pure cussedness you used to fight through it and am grateful God chose to pass that particular trait down to me. You would be proud of how hard J and MK are working to grow up and meet their responsibilities. Your little one is now 8. GB is growing up to be a beautiful and special young lady. I know that you are resting easy now that her adoption is finalized. Her joy is a breathe of fresh air.

I know how much you had to struggle through and I appreciate that you did what you had to do and never gave us less then your best. Remember the last planting we did? Every time my eyes stop on the many mounds of yellow daylillys, I thank God for the many years I had your love before He called  you home.

love,

Laur

Dear Soul Sisters,

Happy Mother's Day to you all. This is one of the hardest days of the year for many of us, but I wanted to tell you all how much your love, friendship, and support has meant to me. You are awesome women, gifted mothers and most important, the most magnificent people God put on this Earth.

love and hugs,

Laurie

Dear MK,

Happy First Mother’s Day! This year everything is different and will never be the same again.  You have a new life that is 100% dependent on you and you will never be the same. It is really hard to be the only thing your child can always depend on. It is also a blessing. All your life, you have felt the lack of your biological family. Malachi has changed that by his very existence. The things you wished your biological mother had done for you, you are now doing for him. Malachi is a gift from God  and I have a home with us as long as you want one. I am proud of the way you stuck school out, even though it was difficult. You are a strong person and Malachi will be strong also. You will be able to make the decisions that are best for Malachi because you are his mother. Sometimes I worry about you making good decisions, but that is when I look at the past. When I look at your future and realize how much you love this baby, I know that you will fiercely protect this child.

Happy Mother’s Day to my strong daughter! I love you.

Mom

Jealousy

GB was diagnosed with autism almost six months ago. If I close my eyes, I can still feel the wash of lightening  through all the nerves in my body, followed by  them shutting down, leaving me with only the psychologist's voice. Her voice faded into the background and I could no longer make out her words. My heart said NO! She doesn't need any more difficulties to make her life harder. My head said Oh! That explains a lot.

The Dad is coming to a place   of  acceptance. In the fall, he wanted to sign up GB for NT soccer. I said absolutely not  and because I provide the transportation, I  had final say. At Challengers (Little League for Special Needs) last Sunday, The Dad thoroughly enjoyed watching GB be happy, content, and actually play softball.

I wish I could say I have found some acceptance in the last months. I am thrilled she is enjoying softball, happy at school, and making slow, but steady progress in learning new skills. So, what's my problem? Better yet, why do I have a problem? I have a problem because I am jealous.

I have a couple of close friends with all NT kids, close in age to my girls. I am jealous of how easy it is for them to take their girls and just do things. I want to be able to do all most of the spontaneous things they do. One of my friends called this morning at 7:30 (first off, I never can take phone calls while getting them out to school- it is hard enough when I give it 100% of my attention) and left a message that they were taking their kids and checking into a local motel for a night of swimming and movies. It sounds great- except Hope only functions at home, GB can only handle an hour or so with the big group inside, and they are both asleep before eight o'clock. I totally get how a break from routine refreshes people. I just can't navigate this one. And yeah, I am jealous. I am jealous that they can go to a movie without having to watch the movie first and consider the triggers in the movie and if their kids can handle them. Their kids don't have triggers.  We go out to eat and they look at a menu and talk about what they feel like eating. I have to help my girls pick out food that won't lead to a melt down or a manic. GB is pretty good. She knows what she likes and she knows what she has to avoid. As long as I am watching, she will avoid it. Hope is difficult. After eight months, Hope is still unable to choose food from a menu that she likes. Before I wised up, Hope picked macaroni and cheese three times straight. Each time the macaroni and cheese showed up, Hope melted down. What did she want to order the fourth time? Macaroni and cheese of course. The meltdown came early, when I told her see couldn't order it.

Hope is repeating kindergarten in September. It is a good decision for her. Between all that she has gone through in the past year and  where she started, I never really expected her to pass kindergarten this year. But when conversations with my friends start with how unreasonable the amount of homework their kids have is, I am jealous. They have not had to go to school at all this year to make sure a problem gets solved.

My friends NT kids can play outside in the yard without somebody sitting there and watching them. They can put in a DVD on a rainy day and their kids watch it all the way through. I am jealous of the quiet and the time to themselves they get from a DVD. My girls won't watch a DVD all the way through even when a captive audience on a car trip.

My friends are always helpful when I have a child melting down. I am jealous because that child is never theirs. It is always mine. They are very flexible and understanding when I have to change plans at the last minute. I am jealous because I am never the one who gets to be flexible and understanding. I am always the one that changes the plans.

A lot of what I feel can be considered grief. I grieve the things that will never be easy for my kids and the experiences that they are not having because, right now, they can't handle them. The jealousy I feel is real, too. It  has nothing to do with the girls. I want to be able to just do things. I want to let things ride and be able to assume everything will work out, have a cup of tea and know without looking that the girls are fine for that ten minutes, or send a note to a teacher to take care of a problem. It is certainly about wanting things to be easier, being tired, and wanting to fit in. I have no doubt that these jealous feelings are rooted in selfishness and that I would be a better person without them. I try not to let them get too tight a hold of me. So far, though, I am unable to get rid of them.

Each morning, when I wake up, I check inside me, looking for that place of acceptance and the peace I am sure will come with it. So far, it hasn't been there. So jealousy remains an uncomfortable inhabitant of my body, mind, and soul. I believe I am a work in progress, but God and I have a long way to go.

Superintendent-Go-Round, Part II

When I wrote yesterday's post, Superintendent-Go-Round, I was waiting for the Superintendent  to call me back. He did, at 3:05. He assured me he was taking me very seriously and he would do everything in his power, but ultimately the decision was in the hands of the school board. I started thanking him for his time, getting ready to hang up, when he interrupted. He said as a show of his intent to help me, he could guarantee the bus would pick up the girls at my house today and the aide in question would not be on the bus.  He said he would get back to me today after he had time to work on the problem.  I was as polite as I could manage at that point and repeated that this had been going on a full week and I simply did not have the time or energy for any more pass-the-hat.

The bus picked the girls up at the house this morning. No brownie points for the Superintendent, though, since the IEP was amended Wednesday to require this. The aide in question was not on the bus, but there is usually a different aide in the morning. I will update when he calls back or when I hire a lawyer... which ever comes first.

Today is crazy hat day. GB had a hard time deciding which hat. She left with no hat. I guess I will be making a trip to the school today, despite all of the Superintendents help.

Superintendent-Go-Round

Today I have spent my day attempting to speak to the Superintendent of schools. After having gone through the bus company, the building principal, and the Director of Special Education, I refused to play the Superintendent-Go-Round game the district wanted me to play. First, you speak to the secretary so she can schedule you with the Superintendent's Administrative Assistant. Then she passes along the information the the Assistant Superintendent to see if he can keep you from bothering the real Superintendent. I have been playing these games all week and I am not playing anymore. I just called the lowly secretary to leave a message for the Superintendent. The message was " If I do not speak to the Superintendent by 3:30 and get this issue resolved so that I feel safe putting my brown, autistic child on the bus tomorrow morning, I will be hiring a lawyer this afternoon and speaking to the papers tomorrow".  I am so tired of dealing with sh*t.  My health is worth more then the school district's convenience.

MYOB

Yesterday afternoon I was invited to an impromptu meeting about Hope. They wanted to discuss upping her meds because of her acting out. I asked if her acting out had been dangerous to her or others. They said no. I pointed out Hope was in a class for behaviorally disordered children.  I told them I thought Hope's acting out in school was a good thing, because now they could deal with the feelings that are driving the behavior. Then I told them medication was my decision, not theirs. What I wanted to tell them was "Mind Your Own Business", do your job, I don't home school, so why is this my fifth trip here this week, etc, etc. I am tired.

Only in the World of Special Ed

About a month ago, during GB's Annual Review, the school district denied her door to door busing. I consulted a lawyer, and filed my written protest to both the Director of Special Education and the school board. Having heard nothing back, I filed a notice last week with the school district informing them I was going to the state because they were denying my child a FAPE. Mrs. Very Stupid Chairperson said "Do what you have to do".

On Friday, we had the bus incident with GB and the aide. Yesterday, I spoke with the principal of the school, left the Director of Special Education a handwritten note, ignored Mrs. Very Stupid Chairperson, wrote a letter to the school board,  and mailed  it (signed, returned receipt required).

This morning, bright and early, the Director of Special Education called. GB starts door to transportation as soon as Friday's incident is settled. I asked her directly what changed. She told me that she was all about negotiation and compromise. I pointed out to her she was giving me exactly what I asked for. She said that law suits were expensive and unnecessary.

I hope she still feels that way when she gets my request to add two more individual speech sessions to Hope's IEP.

Too Much Monday

Took both GB and Hope to see the psychiatrist this morning. The shrink was really pleased with GB. Her thinking was clear, she was engaged, and she was willing to talk about anything. Then it was Hope's turn. Hope immediately told the doctor she was "tupid" and she hated her. The doctor told Hope that "hate" was not a word she allowed in her office and Hope immediately told her that she hated the therapist, too and everyone else in the office. The psychiatrist decided this wasn't a good time to schedule the TOVA (yet another behavior screening instrument). She also decided she would rather not increase Hope's med, as we are better off with the behaviors  (and the feelings behind them) being out in the open.

After the 3 hours to and from the shrinks and our appointments, I took Hope to school. I spoke with the principal and left a hand written message for the Special Education Director about Fridays bus incident. I have decided I have to deal with the incident because if I am not sure GB will be safe, I will end up driving her both ways and that will add another hour to the day. I am now writing a letter to the school board, which I hope to get into the mail (sign, returned receipt required) this afternoon.

This afternoon, GB and I go to see the family doctor. Her appetite has been unchecked through three medication changes.There are a couple of metabolic disorders the doctors mentioned when she was an infant that we never saw a need to check out and nobody ever mentioned it again. I am thinking that maybe I missed something.

Sunny Sunday

GB and her Buddy Abbie!

GB joined Challengers softball this spring. Today was her first game. Her buddy is a teenage girl named Abbie. They hit it off right away and Abbie will be GB's buddy for the season. She had never tried softball before, but was able to throw and catch and didn't need a batting tee to hit. Most important, she beamed from the minute she met Abbie right through the game. And it only cost $15.00 for the season. I met another mother who is suing my school district. I may have found a new IRL friend.