ACUPUNCTURE TO THE RESCUE

                       It was a rough road for Steph having so many ear infections. Doctor visits and antibiotics were never ending. She built up an immunity to the drugs so that nothing was helping her. We traveled three hundred miles to a teaching hospital in Gainesville, Florida where she underwent surgery in both ears. The left ear was sewn shut to prevent any further infections and her right ear was cleaned and a tube was placed inside.
The champion that she is, the surgery went well. It was a rough recovery for her but she kept strong and dealt with the ear muffs(what I called them) for as long as she could. (Pictures below)
After several weeks of traveling back and forth to Gainesville we were told that her good ear was doing as expected. She had lost ten percent of her hearing in that ear due to the surgery, so she was left with only seventy percent hearing.  The infection was gone but the incision in her left ear was taking longer to heal. The antibiotics didn't seem to be working... again. She had lost so much weight she was down to ninety pounds. Not Good!
I was not to happy with her outcome but the doctors were working hard to keep the infections at bay but they kept returning. Both ears continued to be infected.
Feeling frustrated I decided to relieve some of my stress and try acupuncture. I had heard a doctor on the radio show at my husbands station talking about acupuncture and the different uses. David agreed to let me give it a try. So off I went, of course I had to take Steph. She would stay with me in the room as the doctor would do the treatments and we would rest together.  I began to talk to Dr. Phan about Steph and asked him if he would be able to treat her for the ear infections. He talked to Steph and she jumped at the idea. I mean she jumped on the table and laid down just like I would do and said "I got it Joanne". She was willing to let him place the healers into her body. After about a month of going twice a week for her treatments with Dr. Phan she started to show signs of improvement. We had a follow up appointment with her doctor in Gainesville about two months into the treatments.  Upon our arrival to the clinic in Gainesville a student had checked her ears first and remarked that he saw no signs of infection.  When the ENT/Surgeon entered the room he rechecked Steph and said she was doing great, asked me what I had been doing that her ear had cleared so nicely. I just smiled and told him that she was having acupuncture. He took a seat and I immediately thought he was going to lecture me, but he asked me if I had the doctors card, as he would like to refer a few more clients to him. He said he had heard good things about acupuncture but never tried it and if it could clear Stephanies ear from infection then it was worth looking into. He remarked that for the year he had been treating her the ear never once look as good as it did then. He even thought she looked healthier.
Steph continued her treatments with Dr. Phan on a weekly basis, and David and I  joined in the treatments. I have never felt better, and I will say that during the flu season we all stayed healthy.
Steph is still enjoying being free of any infections to this day.

A "Step-Up" To Reality

Step-up ( a program set up by the Adult Education system in our county) has not been the best of experiences for Stephanie. The program is designed for students with special needs that graduate from high school to have a place to "learn, work, & earn, to help achieve financial independence." Sounds great, right! Implement!  The key word for this program. The reality is, it is just a glorified day care. Sure they will say it is the economy and there are no jobs. However, the facility is located in a trailer with very limited space. Lets just say that Flagler County is not where you would want to be if you have a child graduating with special needs.

 Steph would attend Step-up from 9am until 1. She would help pack her lunch after breakfast and then off we would go. I never seemed to have a hard time getting her to go. I always received the same "Goodbye Mom" and a hug. It was when she would step off the bus  that a new "Stephanie" would appear. Every word she said was filled with anger towards someone on the bus and her language consisted of all the wrong words. It would take me the rest of the day to settle her down. She complained that someone (Sarah) ate her lunch and drank her soda.  This "Sarah" had popped up many times before, especially when she attended high school, but we assumed it was a girl in her class. Sarah was not in her Step-Up program. After several sudden appearances by me I was able to see that at times she had willingly shared her lunch.
Steph was more of a worker bee and sitting around when she wanted to work did not sit right with her. So to make a long story short her arrival home after a not so productive day made for a very angry Steph, add to that,  not having the proper nutrition, left her vulnerable to pick up anything that was going around. 

  Everyday Steph would arrive at the store after riding the County Transportation bus for an hour  muttering and using a few choice words. She never seemed to be happy.
David and I would listen to her sputtering afterwards. She had been practicing some sort of sound in her room once we arrived home.  We could not figure what she was trying to say. It sounded like AAAAAAAAAA HOOOO We had laughed at the time but as days went on we realized that the word she was trying to say was not one you would want your child practicing.  Her ear infections had returned and trying to find an ENT in our area that took Medicaid was useless. I will discuss this more in detail in my next post. When you have a child that is hearing impaired you tend to figure out what their sounds mean and what they are trying to say. Well it took some time but we figured this one. Soon after she let loose with a whole new vocabulary of choice words. They would seem to be used only at certain times, and I was having a very hard time getting her to change them around.
 
Flu season was the worst. Following the flu an ear infection would appear and instead of a few days being sick we had weeks. Finally ear surgery. As I stated before I will  write more on this later.
I had started a new business after Steph had graduated from high school and  lucky for me I could be available when she became real sick. It wasn't good for business but when you have a handicapped child work is the thing that suffers. Eventually I dropped Steph from the Step-Up program.
It was the best decision I had made in a long time.

High School to No Where

So much for "Transition" from high school to ??? After Graduation she had been placed in the hands of Voc Rehab. They had sent a worker out to evaluate Steph in order to place her in a "job". Well the lady had turned up late in a broken down truck. Let me tell you she had a beautiful cell phone! It must have rang at least 5 times while she was suppose to be doing her job and might I add they were all personal calls. She kept saying she was sorry and that it wasn't her truck that her car broke down and she had to use a friends and they needed to know when she would be returning. She asked Steph a few questions and then decided the interview was over. If she had bothered to read about Steph before hand she would have known that Steph could not answer the questions . So off she went, never to appear again. I had called Voc Rehab and talked to the supervisor about this and she said she would look into it. We never heard back and were dropped from the program. So where did that leave Steph. NOWHERE!! I continued her in the step-up program , which she hates and watched her slowly deteriorate. She would complain when she got home but still wanted to go back in the mornings. She wanted to work, just not there.The county we live in doesn't offer many programs for the special needs, other than Special Olympics and ARC. Both are a joke as far as I am concerned. ARC is run by a group of old adults that have been on the board forever and refuse to change things for the new adluts coming into our county. We had joined for two years in hopes to help change things but as time went on we knew it wasn't going to happen. We attended a Christmas party for the group and the event had as always included the help of some "normal" students, around the ages of 9 and 10. They had joined in some of the games through out the evening and got to share in the prizes. Steph had joined in several games but one in particular was musical chairs.   It was down to the last couple of chairs and Steph had been the winner. Throughout the night the kids and  "normal" children where given presents for winning but when Steph had won they told her they were out of presents and that was that. No one had mentioned that they would be playing the game and were out of gifts!She broke down and cried her eyes out. They started to pack things up after cake and soda and some adults asked why she was crying but that only made things worse. I have never returned !
As a mother I would rather spare my child tears than to attend another party. I am sure Steph doesn't remember and she certainly didn't need another gift it just was the principal. I have had so many bad things happen to Steph and I am sure she is not aware of what has been going on but I am and so it offends me to see her hurt. Maybe I am wrong but for now I am the one looking out for her.
Hugs

A Long Holiday....

Like I have mentioned before, life is a challenge. It doesn't matter if you add a special needs person to the mix, it still throws punches and expects you to handle them properly. "Excuses be gone" should be given top priority. So that being said I am back to telling my tale of my life that is surrounded by my special angel.

I have never seen Steph happier than when she was in high school. Her teacher, Mrs. Kim was the apple of her eye. She performed for her and I use the word performed because Steph seems to have an actress hidden within her. She gave her best whenever Mrs. K. was around. Leave the room and have her be left with an aide...Not on your life! She became independent around the high school and could be trusted to run errands. Most of the students at the school dealt with Steph and the way she would approach them while in the halls. She thought everyone was her friend and everyone liked her. She attended the football games and went to Homecoming with a classmate.
Graduation brought tears to my eyes as I watched her walk in the procession with the rest of the seniors. You knew she was coming as there was this huge gap in the line! Her partner was very attentive of her and everyone waited behind her. It was very touching. She raised her hand and gave "thumbs up" when she walked past us. I couldn't have been prouder. Little did she know that the end was in store.
I once saw on you tube a Downs Syndrome man trying to go back to his school after he graduated only to find the doors locked and everyone gone. It was so sad to hear in his voice how much he missed it. That is exactly how Steph feels everyday. She would give anything to be back in high school doing what she did best, just hanging out! She stayed until she turned 21 and failed the transition part. My hopes are that someday someone will realize that people with Downs only want to be part of this world not of this world and create for them a better quality of life after high school. Steph landed in what our community calls "Step-Up". It is run by the Adult Education department here and where as it may be acceptable to some it sure doesn't suit Steph. She never really wanted to be with people her type, just the "normal" kids! So I will leave today and continue tomorrow with the never ending battle of trying to see life through Steph's eyes and relate them as I see it.
Somewhere along this route I will be talking about "IEP's because they are and important factor in our school life. The "Transition" factor is another topic for discussion at a later date also, but for now I will continue on the life of Steph to date.

Hugs

Retiring to Florida

Life's changes seem to come at you so fast. Suddenly we lost a very important family member. David's father ,who was my employer, had lost his life to CJ. This brought our lives to a new level and we made some drastic changes. The decision was made to move to the place that both David and I had wanted to retire, Florida! So the search was on. After several trips to Florida, both sides of the coast, we decided on a small town with lots of promise. The move was on. Steph had only a few years left of school and knowing that the community had special needs programs set up for placement after graduation, we set our stakes on a new home and moved to our little piece of paradise. The hardest part was leaving my daughter Rachel and my grandchildren behind in GA. but I knew they would enjoy visiting Grammy in Florida. Steph decided to be an escape artist, so the behavior specialists papers were brought out once again. It didn't take long for her new teacher to figure out her mistakes and things quieted down for awhile. The summer proved to be a happy one as her three favorite teachers from GA. came to visit us in sunny Florida. Soon it was back to school and another new teacher. Enter Ms. Kim.!
Steph has an attraction to pretty teachers and aides so she attached herself to Ms. Kim immediately. We awaited for the day to come when we would receive the phone call saying she tried to escape the class but it never came. She enjoyed every day in school and became that little Ms. Independent. Everyday it was Ms. Kim this and Ms. Kim that.
I won't tell you that life in this school was a bowl of cherries because as you know Downs Syndrome seems to bring out a few unpleasant traits.
So until tomorrow, enjoy the holiday .
Hugs.

Middle School to High School

The move to a new home and new school brought many surprises. Steph settled in well and adapted to her new classroom and teacher. AS the days went by and she became more familiar with the surroundings she started to test the waters. Her teacher and the aides had read about her being an escape artist so they had been prepared. I can remember notes being sent home saying that Steph had a good day and only tried to escape once or twice. She decided that a certain aide in the classroom was her favorite and soon afterwards became the apple of her eye. They developed a relationship that lasted on through high school and into her families hearts.
The aide, who we know her as, MS. Diane, found the key to Steph's happiness. She got her involved with singing and dancing, putting on shows for the class along with doing her class work. Steph enjoyed going to school and being a part of this whole new world.
When middle school ended for the summer Ms. Diane stayed in contact with us and would take Steph for an afternoon or evening. She and her husband had two older daughters and a younger son. Steph would tag along to cheer leading activities or volleyball practice and even football practice. By the time summer ended and it was time for school to begin Steph was well known by most of the students. Her transition into high school was a snap. She became the girls volleyball manager and even worked with the cheer coach,who happened to be her teacher in high school. They even had fitted her for uniforms in both volleyball and cheer! If you ever want to experience pure joy, just look at a face of a child with special needs that is part of a team with regular students. When Steph received an award for being the volleyball manager at the awards diner their wasn't a dry eye in the bunch. Even the team was crying. I would just like to add that there has not been a school that could come close to what this school and it's staff have done for Steph. She could walk down the halls with her head held up and high five most every student that walked by. This was true inclusion as far as I am concerned.
Thank You Ms. Diane!

Schools in Georgia

In 1998 I moved Steph and Rachel to Georgia. You never know where life will take you from one day to the next. Mathew 7:7 " Keep on asking and it will be given you, Keep on seeking and you will find: Keep on knocking and the door will be opened." I had just ended my second marriage in 1997 and became a manager for a restaurant in Oak Creek when I met the most wonderful man through the internet. I wasn't looking to be in another relationship but with our chance meeting in Chicago, one thing led to another. We were all ready friends thanks to e-mails and phone calls and as time went on we discussed my moving to Atlanta. The job market made the move affordable. I was relying on David to check out the schools in the area we had selected but he was not familiar with the needs of a handicapped child.
Steph was entering middle school and so that means she had two transitions. New home and new school.
Where as I had the culture shock of going from a state that had the resources, to one that seemed to be meager and lacking. Steph started right off by escaping out the doors in the classrooms daily. She did this on a regular basis. Until one day she had escaped out the school doors and they had to get the principal involved. I got a phone call asking me to come to school and help return Steph to the classroom.
I wish I had taken a camera. Picture this: A tall distinguished black principal chasing a handicapped child around a fenced in area. I had to compose myself and step in. Steph was suspended from school, I can't recall for how long but it was probably three days. Needless to say they felt they had to place the blame on our home life.
So I did what any good parent would do and requested the school bring in a social behavior specialist. This took about three weeks to find one in the area. Once she arrived she studied Steph in the classroom and at home. We were then called in for an IEP meeting on the findings.
Principal, teachers and aides were invited to join. The results ...you guessed it!
To much down time in the classroom, and a well adjusted home life!
So they had to meet and come up with a whole new plan for Steph. They had to give her rewards for staying in her seat and not running out the doors. Her rewards were ketchup packets and mayo at lunch. Don't laugh. These were her favorite things at the time. This worked for awhile and slowly things started to go back. She started to escape again but now she would head for the gym or cafeteria.
Meanwhile we decided to build a house outside of the school district and after several visits to surrounding areas we decided. The house was finished just before school started and Steph entered a new middle school.
Lets just leave things as they are for now and continue this saga tomorrow.
Houdini revisited???