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???

Schools In Wisconsin

This is just my opinion on the school systems in Wisconsin. Seen through my eyes while watching my daughters grow ,learn and develop. The toughest part was the total life change when Steph arrived in our family. All of a sudden the viola concerts and the girl scout meetings, and helping with homework came to a stand still. I was needed at home even more now. The activities didn't end for the girls, just for me. I would like to think that it broke my heart more then the girls but you would have to ask them. Sometimes I think they adjusted far better than I did. Still, life went on and Steph seemed to take to her new school routine in stride. There were plays and concerts put on by her class as well as the whole school. I remember sitting through a play where Steph was the princess in "The Princess & The Pea." I cried my eyes out. (See attached photo). They sang in the Christmas concerts put on by the school and of course the spring concert. Talk about inclusion! Flash cards came home along with practice sheets for printing her letters as she developed her fine motor skills. She was well on her way to printing her name. She was walking at the age of 5 without her walker. (Something the doctors told me she would never be able to do because of her low muscle tone.) By the age of 9 she had mastered printing her name, first and last! She was still shy but with very few behavior problems. Although gym was her favorite subject she enjoyed interacting with her peers. Steph and a classmate named Matt became best buddies. Her speech was delayed due to frequent ear infections and the loss of hearing in one ear. She was fitted with hearing aids and seemed to adapt well but one day they turned up missing. While on summer break the principal called to say the janitor found them behind a computer in the classroom. This was the first sign that made us think ok, maybe she has Downs but, she's not as innocent as she looks. Little did we know that as she grew older her experiences would grow wilder.
Maybe it was the age , or maybe just the times we lived in back then but her days at school in Wisconsin seemed to pass with ease.

Multi-Disciplinary Report/Plan

That is the name that was what is now called an IEP or an "Individualized Education Program". So we went from a "MDP" to an "IEP". Once she turned three the testing began for the school system and with that came the "Battelle Development Inventory! This was used to assess Steph's readiness skills.
She was evaluated by a school psychologist and along with the M-Team they indicated significant delays in all areas of development.
I was told that they would address all areas of functioning including cognition, communication, social/behavioral, self-help, along with gross and fine motor skills.
Phew, sounds like a days work to me.

Steph's IEP read somthing like this: SHORT TERM Objectives; Reduce babbling as a response to communication. OBJECTIVE CRITERIA; On cue say 1 thing. PROCEDURES; Verbal rewards. SCHEDULE; Daily

Respond to verbal expression of position & direction: 90% accuracy, Verbal rewards, Daily.

I could go on for 12 pages but I won't!
They tell you to keep a file of your IEP"s, and that is just what I did. I still have them all from the time she went to Currative Rehap to the day she graduated High School at 22. Let me tell you that is a lot of paper work! I think I can toss them now and not feel the need for them. I am not saying that you shouldn't keep them but I could have done a better job of reviewing during key transition periods.
One thing I learned was that you are your child's voice and if something is lacking speak out. If you don't like their recommendations have them take another look and suggest. They always say you can bring along another person to these meetings and if you know someone in your area that has had the experience don't be afraid to ask. Once you go to the meeting you are surrounded by school staff and it can be quite intimidating. Several times things went way to fast for me or someone was missing from the meeting and I let it slide. DON"T Do what I did. Insist on everyone being there. That's what they get paid for. Several times Steph had done without speech because the teacher was out, well I regret now that I did not put my foot down. Another thing was I had requested sign language to be taught at school and they shuffled that under the table on me and to this day I am not happy about that. So you see even though we think that the school system is doing right by our child there can be things overlooked. Be aware and spend an extra hour looking over the paper work. It is more important then you think.
I always felt that Steph's teachers did a fine job with her and figured they knew what was best. Just remember they have your child in a classroom of at least 5 students and each student has tons of paper work that needs to be recorded and meetings with parents etc. etc.. They have aides, who probably know your child better than the teacher. Get to know them and stop in and have lunch with your child every now and then. It is allowed you know, then again maybe you don't.
Your child's IEP is made to suit your child. I wonder how a teacher can incorporate my child's individual program with 5 others? Especially on a daily basis. Seems like a lot to cover with just my child, not to mention the 5 other students in the class of which one or two might require personal attention in other areas such as toileting.
I'd give a penny for your thoughts!
Hugs