An update for Anisa (at special request)

Last weekend, Megan and I attended the Women with Bleeding Disorders Retreat at a camp near Houston. The retreat is designed to be educational, fun, and a chance to build friendships with people who have similar challenges.

We left Dallas on Thursday morning, flew into Houston, then got on a charter bus for a 90 minute drive to the camp. There were about 60 women and adolescent girls at the retreat. They came from four different states--Texas, Oklahoma, Arkansas and Louisiana.

Thursday night was the opening ceremonies, ice cream social, and then we got to sleep! Our emcee, Ed, was hysterical! He was the only guy there, however he does have an extensive Barbie collection. He is the education coordinator for the 4 state region. The man was so funny!

The mornings of Friday and Saturday were spent in a variety of educational seminars and break out groups for the young girls, women with disorders, and parents of the younger girls. It was a great opportunity to develop friendships, have open dialog and learn from each other. The afternoons were free to take part in the many activities, including horseback riding, canoeing, arts and crafts, swimming, reiki, yoga classes and skin care classes.

These are pictures of the lake, where Megan went canoeing with our "third wheel". They only allowed 2 people to a boat and I graciously let Mandy go with Megan.....it was a mistake! These are pictures of Megan just before floating off and a picture of the lake with many other boaters.

We took part in several of these, but also enjoyed some time together as mom and daughter enjoying each other's company!

We made several friends, but spent the most time with Lita and her daughter Nuki. They are from a very small town in Arkansas. We had a blast and laughed a lot with these two! This is the worst possible picture I could post of them, but most of our other pictures we were laughing too hard and the pictures were shaky!We also made friends with a mother/daughter named Michelle and Megan. That Megan and our Megan could be clones! They have many of the same symptoms of the disorder and we learned that our Megan has some symptoms that are related to the bleeding disorder that we had no idea about. Based on the information we learned from them and the clinic staff who were there, our Megan will probably have some changes in her meds and a few more tests. We'll keep you posted on those as we get results.

Friday night was a theme night....red carpet movie magic. We were supposed to dress up with boas, big sunglasses, gloves, etc. Very few people dressed up.....but Megan and I were totally dressed for the occasion! We were a little uncomfortable to say the least! After the dinner and Barbie show, they showed a movie and everyone had popcorn. We had already seen the movie and decided to hit the jacuzzi with Lita and Nuki instead.

Saturday night was Casino night....everyone was encouraged to come dressed as their favorite movie star. Megan and I watched from our hotel window to see who was in costume and saw only 4 people....so our costumes stayed in the closet and we went down to the lodge for the casino events dressed like regular people instead:)
Megan's stack of chips varied from really high to really low. I think I about broke even. This next picture is our "dealer" Ruby, whose daughter also has the bleeding disorder. We all had to learn the rules of Blackjack....and even made up some of our own rules!

The best costume went to Tootie....who was dressed as something about the red lantern parody of Gone with The Wind. Megan and I were pretty sure she was just dressed as a curtain.....regardless, she was hysterical!

After the gambling was complete, there were gift bags that were given out. But, gifts could be stolen! They started with the lowest chip winners. The higher chip winners could steal gifts from the lower chip winners! Megan and I ended up with a variety of gifts during the process. These gifts included picture frames, a cool necklace holder, a wallet, a galileo thermometer, and a few other things. We were both pretty excited when we got the galileo thermometer (me) and necklace holder (Megan). At the last minute, Nuki stole the necklace thing from Megan and she ended up with some crazy pseudo pearl necklace! Too fun!

Please keep your eyes out for a necklace holder that is formed like this: a 1920's lady, wearing a full length gown with beading, has all sorts of bling and then has brackets coming out of her hat
So, this is the information for 4 of the past 10 days without posting. I have to get ready for work this morning, so that's all you get so far! I'll post more later tonight about some other stuff!

Love,

Bets

Happy Birthday!

Had a great birthday today! Started the day interviewing potential teachers at the job fair. Got home about noon to roses, gifts and got this gorgeous cake that Troy and Megan MADE!!! They haven't even started their cake decorating classes and they were able to do this!
My birthday present this year is a much desired (and needed!) dining room set! Troy picked out the table all on his own and I absolutely love it! It will be delivered on Monday, so I am all excited for our family dinner Monday night!

After a long nap, we got ready and went out to dinner to one of my fave restaurants--Carrabba's Italian Grill. We hadn't been there in a long while and really enjoyed the great meal.

On the way home, we stopped at the furniture store so I could see the dining set in person--and I love it in person just as much as in the picture they first gave me!

The weather has been cloudy, rainy and cold all day--but I've had a bright and cheerful birthday! I'm one lucky lady.

B

Surprise! Court sucked.

Yesterday was the day we were summoned to court to finalize the legal aspects of Steven's new dorm. We were told that the meeting was a formality that should take about 15 minutes, involve us signing some papers, and maybe having to answer a few questions.

Imagine our surprise when we arrived to find a lawyer from the District Attorney's office, Steven's lawyer (we didn't even know he HAD a lawyer), the psychologist, and our case manager. Turns out it was a full hearing. There was a judge, a bailiff, a court reporter and all of the above "experts". It was even held in a real courtroom where "they" sat at one table and "we" sat at the other table.

The judge began by asking all the questions regarding who represented which party.....then he asked us if our attorney was present? Ummmm, we didn't know we needed an attorney. Turns out we had the option of having an attorney. He said, "Well, I guess you know now. Do you wish to proceed?"

The DA started out calling the psychologist who gave testimony regarding Steven's abilities....wait, she focused on his INabilities. That was fun.

Then, the case manager was called to the stand. He had to answer questions about his perception of Steven. That's always fun to hear a stranger's first impressions of our little man...not.

Steven's attorney got to cross examine each of the experts. All he did was expound on Steven's challenges. Troy and I were in tears sitting there on the bench listening to them talk about Steven.

Then, he called "one of Steven's parents, Troy Gilchrist, to the stand." Troy was not prepared emotionally for this at all. They asked him questions regarding what interventions we had attempted, whether he thought this option was the best one for Steven and they showed no mercy.

When it was all over, it had lasted 45 minutes. The end result is the same. Steven gets to stay at his dorm. We are still his parents and have all parental rights.

I talked to my sister last night. Turns out I had forgotten to tell her about the summons so she couldn't prepare us for what had transpired. She usually plays the role of Judge in the courtroom. She said what happened was pretty standard. Next time, as soon as a summons arrives, I will contact Ang. And there will be a next time. Our attorney, Angela, advised us that we should be summoned at least once a year to re do this hearing annually.

And, today is a new day.

B

Court Summons

We have been summoned to appear in court today. The court session is a required part of Steven's admission to the new living facility. Our case manager tells us that it's a slam dunk. Basically, the psychologist, doctor, case manager, and each of us will appear in front of a judge, and answer questions regarding why Steven is a minor living outside the home. I don't imagine it will be fun reliving and retelling our experiences in the past 12 years with autism. They will be focusing on the challenges, but we have always tried to focus on the positives and progress that Steven has made. He has progressed so much further than any of the doctors ever predicted when he was a newly diagnosed toddler. Yet, this new living arrangement is the right option for Steven.

The State of Texas requires this so that "people don't use the living facilities to dispose of an unwanted family member." OMG!

I'll be glad when today is over:)

B

And they're off!!!

Megan had a big day yesterday! She finally got to get her braces taken off! Here is a picture of her with her beautiful, new smile! Isn't she gorgeous!!!

Mixed Emotions

When Steven moved to the dorm, they recommended we not visit for 30 days to allow him time to adjust. We agreed on two weeks, meaning we would visit him next weekend.

Yesterday, we had his IEP on a conference call. They brought Steven into the room during the call and he heard my voice on the speaker phone. He kept trying to kiss the phone and said, "maaaaa". It broke my heart.

They need a few things for Steven and a few signatures from us in order for Steven to start school on Monday. I asked if they wanted us to drive down the stuff or mail it. They said to come on down. I asked if we should plan to see Steven or if they thought it would confuse him. They said he obviously misses us so we should see him.

I'm so excited to see him!

But, I'm so sad because I know we will have to say goodbye again.

And it sucks.

Megan has decided that she would like to stay home today instead of making the drive down with us. So, she will stay home and play Sims, clean her bathroom (she doesn't know this yet!!!), and watch TV. Troy and I will drive down 3 hours, visit Steven and take care of business, then drive back home this evening.

We will find out his mailing address as several people have asked for it.

Also, we are going to print out pictures to hang in Steven's room. If you would like me to include your picture, please email me your picture. I will print out and put in a Steven proof type of display.

B

One week later

It is hard to believe that Steven has only been in his dorm a week. It seems like a much longer time.

He continues to adjust as well as they expected. We spoke with his case manager today and the psychiatrist would like to make a medication change to include a medication that will help impulse control and reduce aggression. When we have been getting nightly updates from staff telling us he is "doing great", they really mean it's going as well as they anticipated. Steven has bit a few staff members this week and continues to have 2:1 staff ratio for at least another week. He is not fond of eating in a group setting but prefers to go back in and eat after it has quieted down. The goal is to get him eating with his roommates, but staff agrees that is alot of sensory input for Steven at this time. He's experiencing so many changes and they are putting the mealtime goal on the backburner. They are keeping him busy with daily outings, including the zoo, the park and a hike at the state park. We have his IEP meeting this Friday and he will begin attending public school next Monday.

We continue to keep very busy on the homefront. We are experiencing fewer episodes of sadness and are progressing along in our acceptance. We have periods of sadness, but it isn't quite as chronic as it was even a few days ago.

Megan is having a very busy week at school with TAKS testing. Troy is experiencing a very busy week in his new position. I am experiencing a busy week with teaching and my masters courses. In addition to our daytime routines, we are trying to keep our minds busy in the evenings. Troy painted the bathroom downstairs last night while Megan and I planted flowers in the front flower bed. Tonight we all took it easy and tomorrow night we will paint the guest room and organize a few things upstairs.

We don't have any super exciting plans for the weekend as of yet, but I'm sure we will come up with something wild. If nothing else, the yard needs mowed.

B

Look out Martha Stewart

With Steven settling in at his dorm, we have been able to make a few changes at home that we weren't able to do before. We are able to add some decor, throw pillows, glass vases, etc. This is a picture of the great room now. This is the dining room. Notice the salt and pepper shakers ON the table!!!

In the kitchen, we were able to make a few changes as well. We now have silverware in a drawer....not the vault! We have canisters on the counter---glass even! Our knives are no longer kept in the laundry room....they, too, are on the countertop!

We recently moved Megan's bedroom downstairs. She also took over the downstairs bathroom now that Steven has moved to the dorm. This is a photo of her bathroom.

Her new bedroom is also shaping up nicely. She is enjoying being closer to us and having a larger closet!

Overall, we are making small changes simply because it helps to fill our time and keeps our brains focused on something.

We are happy the house is shaping up and thought we would share some pictures.

Betsy

Saturday

Several people have posted or emailed about the whole transition. While I have posted positives, I should also clarify some of the not so positive details so you have a better idea of how things really are.

Steven's transition is going well. But, he is being aggressive and throwing tantrums several times a day. He has scratched, bit, pulled hair, kicked, etc. The difference is that they are better trained to handle it. He continues to have sleep issues there, and the staff has asked us if waking up at 1:45 am each day is typical for him. We reply yes, they are seeing the real Steven. His house mom, Sonya, has told us that Steven's aides are exhausted after an 8 hour shift. They have constantly said to us that they don't know how we did it alone for so long. So, while it has been an easier transition than we expected, the behaviors and other issues remain the same. However, instead of the 2 of us being the primary caregivers, Steven has a staff of 8 rotating with him throughout each 24 hour period.

As for us, we're not doing great. We cry at the smallest things. We feel sad. We are happy for Steven, but sad for us. Having to admit that our child is more than we can handle at home is devastating and breaks our hearts. We are trying to go through the motions of day to day living, but it's very hard. We went grocery shopping last night and I found myself crying when I saw some of Steven's favorite things and remembered that we didn't need to buy them.

We are all adjusting to the fact that we can do certain things that we weren't able to do before. We are realizing how much energy we spent trying to keep him safe and happy. Yesterday, I was tired and decided to take a nap. It was weird to be able to do that. The house is extremely quiet. We are all struggling with the quiet.

Our family counselor advised us in advance that it was likely we would go through some symptoms of PTSD. I guess I better read up on that so I know what that means and gain some insight on how to help us all through this.

So, the positive is that Steven is happy. But, the reality is that he is the only one that is.

We appreciate everyone's support through this. I'm sure in time we will be able to post more positives for us as we learn to transition to live life without 1/4 of our family under our roof. But, for now, it just sucks.

B

Fridays Update

Thursday was another busy day in Abilene. Troy and I went to several stores looking for a traditional TV/DVD combo unit. Evidently, times have changed since we last bought a TV. We could only find LCD TVs and those are not Steven proof. Fortunately, a nice lady at Best Buy suggested a pawn shop. So, off we went to Wild Bill's Pawn Shop. That was quite an adventure! We successfully purchased a TV and a DVD player and took that to Steven's room. Someone asked for pictures of Stevens room so here they are: His new TV/DVD player. Notice the KING of all, BARNEY, is playing on the DVD player!

We also put up some stickers on his walls to make it seem a little more homey. The maintenance guys will paint his walls any color we want so that will be getting done in the next few days.

This is a picture standing in the doorway. You can see that it's definitely Steven's room! There are blankets and toys all over the floor.

Steven has done well adjusting to his new dorm. Right now, he has two aides with him. Their job is to remain at arms length at all times....even when he is sleeping. This will be the arrangement until Monday, when he will go down to 1:1 after they get to know him a little better. This next picture is Steven with his main 1:1. They seem to have hit it off well.

On Thursday, Troy and I also met with the school district coordinator. We were able to see Steven's actual classroom and meet his teacher. We will need to have an IEP meeting with the new district before he can enroll in school and that should be this upcoming week. We were excited to learn that Steven's aide (whose name we can't remember right now) will also go to school with him. The school district and the dorm admin have worked together for many years and they are both very flexible in designing a program that will benefit Steven.

We stopped by the admin building at the dorm and put money in Stevens "trust fund". This money is used for their outings so the boys can learn to manage money, etc. We also got a map of the entire campus and found out where the indoor pool and the guesthouses for parents are located. Next time we head down, we will probably stay at one of the guesthomes on campus.

Each time we went to the dorm and saw Steven, we noticed that he was becoming more and more confused by our coming and going. We decided that it would be better for him if we just headed home on Thursday evening instead of staying until Friday. He is making a better transition than we expected.

We got home last night, ordered pizza, watched a little TV and were in bed before 9:00. We called the dorm to check on Steven about 8:30 and he was doing well. They had gone for a drive to the lake, walked the campus and even had Dairy Queen. Steven was happy as a lark! All in all, we are doing okay. We are still very emotionally raw but feel assured that we made the right decisions for our entire family.

Thats the news as of Friday morning.

Betsy