Good Night, Irene

Thanks to Hurricane Irene, there was no CSE this morning. We had no real problems. Lost internet, cable and our land line. Have zillions of reasonably small branches all over the yard and a pool filled to the brim. However, all around us, rivers and creeks overflowed, trees went down, roads were washed away. Most people in my county still have no power. The school has no power.

The Director of Special Education has no idea of how to meet GB's needs in district. GB has decided she wants to be home schooled. That won't meet her social needs at all.

The Dad is going away, so there will be no CSE before school starts in a week. I am not happy.

Incidentally, I wanted to thank everybody who responded to my last post. Before I cried, I went through my usual you-are-ours-forever spiel, but it didn't seem like enough. I finally told her she couldn't leave until she was old like me. There was clear disbelief on her face that slowly changed to a smile. I am not naive enough to think the abandonment issue is resolved, but I am hopeful that we took a tiny step in the right direction.

Tears

Today Hope asked me how many days she had lived here. I told her a year and a day. She asked again how many days she had lived here. I answered 366 days. She asked me how many days before she had to leave. I didn't let her see me cry.

Real Progress :)

Yesterday was the one year anniversary of Hope's Adoption. The Texas parents called. AND I HAVE NOTHING TO TELL YOU ABOUT! There was no fall out the entire trip. Hope was Hope. She is RAD. BUT there was no escalation, no sabotage of a good thing. She enjoyed the hotel, swimming, and the Strong Museum. She was a pain in the rear at restaurants and in the car. I am doing the happy dance.

Mini-Break

I had so much fun at the Strong National Museum of Play with my Trauma Mamas, that today I am taking my whole crew to the museum. We came up last night, had a nice dinner, and went swimming. It was our one year anniversary with Hope. The Texas parents called. Hope seems to be OK- at least no more RAD them usual. I hope it lasts at last through museum. I am looking forward to the visit.

GB was supposed to stay with Bio-grandparents tomorrow, but they called and said her Birthmother will be there. GB started crying, saying over and over "you won't make me go, will you". I told GB I wouldn't make her go and now the bio's have decided I am trying to keep her away from them. They say I am trying to keep her away from GB. Sometimes, open adoptions are difficult. Yesterday was one of those times.

Loss

Mary provided daycare for GB for three years while I was teaching and in school. Two years ago she was diagnosed with stage IV liver cancer. She has been on chemo since. She wanted to do respite for my girls when she felt good enough. GB loves her and it worked out well for both of us.

Today I got the inevitable call. Mary is dying. No more chemo, just hospice to keep her comfortable. GB has already experienced so much death, so many loses. Please pray for me as I help her through this painful time.

Coming Up on a Year

Exactly one year ago today, we were packing for the trip to Texas to adopt Hope. It is difficult to believe a year can go by so quickly, yet be so long. There are things I wished I had known in the beginning: how quickly Hope would potty train, how hard it was going to be on GB, how bright Hope was, and how all her problems came back to RAD. I wish I had known how the last adoptive parents' guilt was going to flavor my life all year. How little the school district was going to listen and how much they had to learn for themselves. Just how tired I was going to be.

There are things I should have consciously remembered, but didn't; How good Radlets are at triangulating and how much energy it takes to be at least one step ahead. How their radar finds the moment you are least prepared to deal with, so when they start Radishing, it gets maximum effect. How hard it is to keep yourself focused on the hurt child, when all you really want to do is make them go away.

None of this was on my mind that day. I was excited and scared and had a knot in my stomach. An old Irish saying was "God watches over fools and drunks". I am not a drunk, so that leaves me a fool.

Things We Don't Want to Know

Most biological parents have a comfortable sureness that they know their child. Most adoptive parents also are sure they know their children. Then there are adoptive parents of special needs kids. They, too, are reasonably sure, after a couple of years of living with them, that they have a large amount critical knowledge on their kids. Most of the time, all these parents are right.  Sometimes, though, the outside world gives us a piece of information that blindsides us. Biological or adoptive, someone says something to us that does not fit into how we see our child. Denial is our instinctive reaction. We know our kids! We would have noticed.

The first thing that a parent may notice is that in the past, people or professionals have said stuff to us about our kid that it didn't fit the kid we knew, we either laughed, got annoyed, or felt attacked. After it ate at us for a while, it went, or mostly went, away.  This time, someone, a professional, school personal, or someone you are close to, says something or suggests something that you have never given thought to or have already ruled out. Our reaction is denial, sometimes mixed with hurt or anger. Perhaps we feel overwhelmed, maybe to the point we feel that someone has knocked the wind out of us. This time, our feelings won't settle down. Time passes and the reasons that person gave for what they believed are still bouncing around our head. Eventually, our mind acknowledges that there was some truth behind what was said and we start the difficult task of researching and integrating the bit of new knowledge into our world view.

I can give you several examples from my life. When we adopted MK we knew she was exposed to alcohol in-utero. The specialists completed testing in 1986 and assured us MK had gotten lucky. She did not have FAS. I was relieved. After a difficult childhood and a more difficult adolescence, a neuropsychologist who evaluated MK at 17 said she was FASD and RAD and probably would need some support the rest of her life. It was not a diagnosis I was prepared for. I had never heard of RAD and FASD had all ready been ruled out! Seven years later, I find myself mostly in acceptance. It was a long, hard journey.

We knew that GB had a lot of delays when we got her. She started Early Intervention at 7 months. EI suggested taking here to see a neurologist. I did and within 2 minutes of examining her, the doctor announced GB suffered prenatal exposure to alcohol and had FASD. Nobody had ever mentioned it before and I was blown away. Over six years later, after much research and multiple evaluations,   I have integrated this into my worldview of who GB is.  Last fall, in the middle of a neuropsych, I was told GB was autistic. They gave solid reasons for this diagnosis, but a took a lot of research and observation of GB- months' worth- before I knew they were right.

These are examples of things I didn't  want to know. Most parents have at least a few of these moments. Special Needs parents tend to have more than a few. It is really difficult to process and then deal with these world changing truths.  I remember being so angry at the neurologist that first announced  that GB was FASD that I simply walked out. Shooting the messenger is neither kind nor productive. Although that is what I wanted to do when the neuropsychologist told me GB was Autistic, I was able to refrain. It still took months before I accepted the diagnosis .

Each loss, each blow to our kid's future, needs to be grieved. The only way to get through denial to a place of acceptance is to go through the grieving process. Then we move on to make sure our kids get what they need.

What a Weekend!

I had a great couple of days. Seeing old friends and making a new one (a Trauma Mama, also) was great. We visited The Strong Museum on Friday and it was enjoyable. White wine, homemade nachos, and a big bonfire were just what we needed after the fun at the museum. Time with good friends was just I needed. I feel relaxed and ready for the busy week coming.

The Dad took the girls for a walk across Hudson River on the pedestrian bridge in Poughkeepsie. They had a good time, but sore feet. It seems they didn't put on socks and sneakers when they were told to. The 3 mile walk in their Crocs left blisters on all four little feet. Maybe they will listen next time.

There Are No Dragons Today

Today, there are no dragons to slay, no dragons to win. Today I am taking a five hour train trip to see two Soul Sisters. By myself. Childless. I feel giddy, excited, adventurous. I can't remember the last time I rode on a train. I was young. All these great feelings and I haven't even left home yet. I wish I could share these wonderful feelings with all my Soul Sisters and Trauma Mamas. You have my solemn promise- I will not waste a moment of this time. I am so glad there are no dragons today :)

Private D

Getting updates on D has been very difficult. His GF took over his face book and  and she blocked anybody from the last five years of his life that had any amount of contact with us. But everybody knows somebody and an update found its way to us. D and the army are a great fit. They tell him what to do and he does it. He likes not having to think.

D and the girlfriend are married, with her living on base with him. She is either pregnant or trying to get pregnant. The world will be blessed with yet another generation  of Ds that can't function or take care of itself.

I am happy that our legal guardianship ended upon D's successfully completing Basic Training. I am angry that all we put into him was unappreciated. I try to put the anger aside. Appreciation is not why we took him, so the lack of appreciation isn't really relevant. He is an adult and his choices are his. He has to live with them and we can move on. It is harder on the Dad. I hope he can come to terms with it. Some days the dragon wins.

Thankfulness Project Monday

I stole this from my Soul Sister, who stole it from  counselormusings@blogspot. Gratitude and thankfulness are meant to be part of our daily life. There are days where the day is gone before it even occurs to me that the good stuff was with me all day, and I didn't notice it.

I am grateful for:

• For medical care that far surpasses what most people in this world have available. I dislike my C-PAP  machine, but I am grateful that it is available for me and that it helps.
• I am grateful for all the supportive friends I have and for being able to spend time with them.
• I am grateful that there is a systemic way to get my girls what they need to benefit from their education. It is a blessing to be able to fight for what they need- a blessing my mother didn't have 40 year ago, when she needed it for my brother.
• I am grateful for the opportunity to grow my patience raising my second family. Although it can be incredibly difficult in the moment, it keeps me focused on where I am going and doesn't leave me time to get side tracked. The smiles, hugs, and accomplishments  are a joyful, free bonus.
• I am grateful for my grandson. He holds the promise of breaking the generational cycle of damaged children.

What is there in your life to be grateful for?

Happy Birthday, Grandson

Mali turns one in a couple hours. MK had a party to celebrate today. It was not the way I have done first birthday parties, and there are things I could complain about or criticize. Or I could share all the positives I saw today.

• Our extended family turned out; not only Mali's grandparents, but also GB's grandparents, my friends, my daughter-in-law,  my granddaughter, and MK's new friends with their babies. MK and her friends go for walks with their babies four or five times a week. They have play dates, help each other out, and all take good care of their kids. 
• MK was grateful for each person who came. Things went wrong and she recovered and moved on.
• GB was close to losing it. I made her official photographer and she was able to focus herself and did a great job.
• All the kids had a great time and none of them wanted to leave.
• The child who had dirty underwear, but had lost her poop, wasn't even mine.
• My grandson had a great time!

School Is Back Again :(

Today I had a CSE meeting scheduled. I was going to get Hope two more speech sessions  a week. I wanted GB to get a couple more therapy sessions a week. They were both slotted for 8:1:2 classes. I figured I could get it done in under a half-hour. I spent a while sorting out which IEP goals they hadn't met in June and reviewing the most recent testing on Hope. An email from Mrs. V.S. Chairperson sidetracked me briefly, but I did get back to my prep.

I should had known an email from Mrs.V.S. Chairperson meant trouble was brewing. I received an email from GB's DDSO service coordinator. It said that she had spoken to GB's teacher, and while he felt the class was an excellent fit academically, it was not meeting her social needs. This took me by surprise, seeing as I had a meeting with Mr. Teacher less than a week ago. Mr. Teacher and I chatted on FB for over 45 minutes. This is some of what he said.

 There is great evidence that G.B's fullest potential is not being fulfilled in her current setting. I feel that her social needs are not being met. The students in my class are great kids but she has trouble relating with them because of the level and quality of their social skills. They do not match hers. My problem is that I wanted to help her academically but after thinking about it and being honest with myself, I have to consider what is best for her in the long run. That's why I have had a hard time talking about this at length with you.

The net was it is the middle of August and I have less than three weeks to find an appropriate placement for GB and one does not exist in district.

I went to the CSE today. Mrs. V.S. Chairperson was in the room, but she was packing up her stuff and didn't say a word. The committee quickly agreed to upping the frequency of Hope's speech therapy, as she had not met a single speech goal on her IEP last year. There was no point discussing how much counseling GB should receive when we didn't have a placement. I have another CSE meeting Monday morning at eight to work on that. I insisted they block out two hours. This is not going to be fun.

Go Figure...

I hate to start a post with the obvious- but today it is the only way to start. In general, children with special needs do not outgrow them. I have great hope (pun intended) that my RADlet will be able to overcome and compensate for her trauma based start on life. Even if she does, though, it will always be a part of her. GB is Bipolar, FASD, and Autistic, with 5 months of early trauma thrown in. It is part of who she. Her coping skills have improved and will continue to improve. It will not change the way her brain works, the way she learns things, or heal the physically damaged parts of her brain.

Seems obvious. So I am wondering why I received an email today from Mrs. Very Stupid Chairperson today, saying that since GB was doing so well, I might want to consider mainstreaming her again. She isn't even our chairperson any more. I thought about all the-rooted-in-reality facts I could give her. Then I realized, since she is not our chairperson anymore, I don't owe her any explanations. I emailed her back one word. "No".

That ended that. I am still left here wondering how many other people in our society thinks that, with help, GB will be NT or "normal". Meeting with the CSE tomorrow. How many  of those people have the same misconception?

Pictures By GB

GB had fun  with the camera this afternoon. These are some of my favorites.

Mali is GB's favorite person at the moment!

Choices

Hope did not want to go to church today. She said it was "too boring". The Dad surprised Hope and me by saying she could stay home with me and just GB and he would go to church. GB had a wonderful day with her Dad- church, lunch, reading, swimming, and Subway for dinner. Hope, not so much. I had a difficult morning, physically. Hope expected me to entertain her and was disappointed when I said "no way!" She was very bored for three hours until MK took pity on her and took her for a walk with Mali. When they got back, MK fed both of them lunch. Hope decided she wasn't eating and tried to sneak her lunch into the garbage. MK caught her and Hope got nasty. Hope had to spend the rest of the afternoon with me. Maybe church will sound better next week? Nah, probably not.

Regrouping From My Week

I have started to regroup. Hope was able to express some remorse for hurting me. I have been processing how overwhelmed I felt after Hope's rage and replaying what happened with the therapist over and over in my mind. I cancelled this weeks therapy appointment because I need more time. I have decided I will find a new therapist long before I give serious thought to removing Hope. I have gone through this before. Many of MK's therapists and psychiatrists urged me to send her to an RTC for my own safety. It was really hard, but with the help of CCS we were able to keep her with us. I know I was healthier and younger then, but that just means I may need a different kind of help.

My CPAP machine arrives Tuesday. I am going to use it without oxygen until my appointment with the pulmonologist. I am hoping it helps my energy levels, stabilizes my blood pressure, and kick starts my thermostat. A lot of expectations for such a little machine!

The beginning of school is on the horizon. EYP has two more weeks. Hope summer teacher is campaigning to put Hope in first grade. She is a nice, older lady who seems clueless about the new high stakes expectations. Hope knows her alphabet and that is good enough for first grade. I managed to end the conversation by reminding her that Hope was in a self-contained k-1 class and it didn't matter what grade we said she was in. GB has her regular teacher for EYP. I met with him yesterday. He has spent the summer mostly one on one with GB. He found a lot of gaps left from the disastrous year of first grade. As he has worked with her to try and identify all these gaps, GB has emotionally traveled back to first grade and now feels like she is stupid and can't do anything right.

My first CSE meeting of the year is scheduled this week. I wasn't sure what I wanted to change when I scheduled it, but come August there is always something to change. I will be adding at least one more individual speech for Hope and at least one more individual counseling for GB. GB will also be working from a different reading curriculum.

I want to thank everybody for their support. The comments, messages, and emails helped me slow my mind down enough to start processing everything that happened this week. I may have "a useless little blog with no traffic" according to Anonymous, but I have the best readers in the blogsphere.

Support?

When we adopted Hope, I knew it wasn't going to be easy. I knew I was too old. I even suspected I had a neurological problem. I was ready. I didn't sign up for any courses,  I found a personal therapist for me. I found a therapist and a psychiatrist for the girls. I lined up Hope's special ed placement. I even started the paperwork for respite.

There have been glitches in support, but, for the most part , they get resolved. Until this week. Hope raged on Wednesday. It was bad. I ended up bruised and scratched. I went to see my therapist on Thursday. The therapist I found to for me to deal with my junk. It was not a good appointment.

The therapist recommended giving up on Hope. She said it was too hard on me, my husband, and most of all GB. After all these sessions, the woman knows me well enough to play the GB card. I am not giving up on Hope. The rages have gotten farther apart. I have to change things around to protect GB. That was my agenda going into yesterday's therapy session. It didn't happen. Instead of support, I got a high pressure sales pitch. It was not helpful.

This morning I am going to get in touch with the agency that helped us keep MK home during her teen years. I am not sure they work with a 5 year old, but if they don't, I am hoping they can at least point me to a place that does.

I Don't Know How, but I Did

Hope raged this afternoon. She threw furniture, kicked, hit, bit, scratched and screeched. It went on forever. The Dad came home and we got some PRN medication into her. It hasn't knocked her out (it should have) and she is sitting on her bed singing happily. I don't know how I contained her or kept her contained. I am a mass of scratches and bruises and I hurt all over. Hope doesn't weigh 46 pounds yet. I think it is time to muster up some outside reinforcements.

Ever notice how close RAD and RAGE are, alphabetically?

Important Stuff

My friend, Lisa, is a person who gets what is important. She wrote a post that I feel everyone should have the opportunity to read. You will find it here.

Gratitude for YOUR Problems

Today's post is about perspective. As we get involved with the day to day struggles of living, it is really easy to lose sight of all we have been given.

• Feeling poor? If you are reading this, the chances are you have clean water, healthy food, and a comfortable shelter to live in. Many people in the world don't.
• Missing the people you have lost? Remember you were blessed to have them in your life. Most people never even met them.
• Chronic disease have you wondering why me? Look at some of the other diseases you could have. I know I can find a lot of diseases that would be so much more difficult to live with. I'll keep what I have.
• Feeling unfairly attacked or disliked? At least no one will come knocking at your door in the middle of the night and take you away because they don't like what you believe or say.
• Is your world intolerant and judgmental to your special needs kid(s)? It sucks, but you are blessed to still have your kids. There are parents who no longer have their kids and would be willing to put up with almost anything to have them back.

There are days when I feel defeated. There are days when the world tells me how wrong I am and how to do it right. There are days when choices have to be made because there isn't enough money to do everything. On these days, and other difficult days, I stop and look at the blessings I have. I look at what went right today.

And, yes, GB and Hope made it on the bus today without a single problem. Some days are easier to be grateful for then others. Still, gratitude belongs in every day. God is always good.