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