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

Hitting the Big Time

No problem, this school thing is going to be a breeze. New friends, Loaded diaper bag, even the big yellow bus. Livin the good life! Half days, a snap, after all been there done that. The only hitch with this scene and there is always a hitch, no mom.
So I give the bus driver my well rehearsed speech about this and that, walk off the bus and start to wail. I look at my watch and decide that I have enough time to grab my coffee and drive the rest of the girls to school and get to Lincoln Elm. as the bus arrives. Not that I don't trust the bus driver with relaying my message to the teacher but my mind dances around all those little thoughts of what if'.
To my surprise the bus has all ready dropped off Steph and the school doors are locked. I hesitate to tell you what happened next. In my search for a door that was open I decided to peek in a few windows.I thought I knew which classroom was Steph's but I was wrong. Out comes the principal just as I was on my second window. One good thing is that I am not the first mom to try this. He walks me back to my car and promises me that he will check on Steph and will have her teacher call.
After three years of having her hanging from my hip I can't seem to function properly.
Steph arrives back home and is sleeping like an angel while I look like I have run the marathon. So much for her first day of school!
After about a week of sending her off in a tizzy things begin to settle down. I decide to tackle deciphering her IEP. That is another story for later. IEP's are the bane of every special needs child's life. Some goals are just plain useless while others are down right impossible to complete. Half way through the second page I decide I need help BUT where and to whom do I turn. Taking a chance on the nice principle I met while wandering the grounds I placed my call. His secretary sets up an appointment for me and suggests I include the teacher.
The meeting didn't go as I hoped it would. Let's just say back in the 80's parent advocates were not invented yet.
Now that I have introduced you to what I was up against, plan on reading about IEP's next.
HUGS

Birth to 3 years... Over in a Flash

The best part about those first three years would have to be Currative Rehap.. I never imagined the steps a child goes through in those very important three years of development. It was just something I took for granted. Walking, talking, sitting, rolling and even eating had been aided by a therapist in Steph's first three years of life.
I had become a frustrated mom sitting by the side lines waiting for the therapy to end reading those same old magazines from 1970. Only to be given a sheet of instructions telling me what they worked on and to follow up at home. Right, like I knew what they were doing! So I did what any other mom would do, complain! After several meetings with other therapists and supervisors we developed a pilot program for mothers and infants called "Transdisciplinary Program". It involved a team of therapists such as an OT, PT, a Speech Pathologist, and a social worker, along with 5 mothers and their children. Siblings were allowed to join in as well as fathers. We met 3 days a week starting in the morning and breaking for lunch. We worked hands on with the therapists and charted our child's progress. This was a true learning experience for all. I am proud to say that the program is still in force and doing well.
After graduating from Currative at the age of three it was off to school.
Transition #1 is how it is looked at. I am here to tell you it truly is a transition. IEP"s, meetings with school staffing specialists, getting to know the lingo of teachers and staff. Was I ready for this? Better yet my mind kept asking, was Steph ready for this? Time sure flies by when you are having fun. I liked the jello painting and the snack breaks. Not to mention watching someone else struggling with those PT exercises. I was just getting the handle of things and you had to turn three.
So long Currative HELLO Lincoln Elem. ;-)

Learning My Weaknesses

SO it has been a total of two months and Steph is finally coming home. We put in lots of hours in the hospitals neonatal center teaching her how to suck on a bottle and we have now completed the task so she can come home! The 1,000 small holes in the heart chamber closed within the first 24 hours and her ASD which is the size of a 50 cent piece does not require surgery at this time. The doctors have set an appointment for all three of us to do a genetic study, along with follow up at the cardiologist. The social worker has set up a schedule for Steph to be seen at Currative Rehap for OT, Pt, and speech three times a week. You ask why speech? Well there is lot to learn from a child who has no idea how to move those muscles in her mouth. Let me tell you that the PT and OT are a breeze compared to speech. My heart sank watching her struggle to drink a bottle that as a mother you naturally expect your child to suckle. She would start to choke on the tiniest bit too much. Even the therapists taking her from my arms for a half hour of Pt and then Ot wasn't to bad but after a few months of that I began to ask why I couldn't go in with her and at least observe what they where doing. I tried to tell them that I could follow up with the exercises at home but to no avail. More on that later.
Now that I am living in the South I am so grateful for being able to raise Steph in Wisconsin. There was so much more available to her.
The heartaches that go along with watching your child struggle with things that seem to come so easy for others is enormous. I don't wish them on anyone. I don't want anyone's pity, I just want people to understand that your life is now consumed with your child and not to expect things to be the same as before. Especially if you have other children in the home, it would be so nice if someone paid a little more attention to them. While I was busy with Steph my family had to take a back seat. Don't get me wrong, I had many wonderful friends who had children and I was blessed that they were there at times for me and my family. It's just that I needed to factor in this element for others to understand that it is not just mom and baby that this life affects.
I will not mention the factor money played in our lives as it is a problem at times for everyone, but at some point I will speak on the subject of Social Security Disability.
So life went on in our family as does it now. You could say we faced whatever life dealt to us on a daily basis with love in our hearts, thanks to Stephanie!
Hugs, until the morrow.

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My Mothers Poem To Me...Thanks Mom!

I don't know who wrote this poem but it was given to me by my mother right after Steph was born.
Get the box of tissues ready as this will bring tears to your eyes.

AUTHOR UNKNOWN:

A meeting was held quite far from earth,
It's time again for another birth.
Said the angels to the Lord above,
"This special child will need much love."
Her progress may seem very slow
Accomplishments she may not show
And she'll require extra care
From the folks she meets way down there.

She may not run or laugh or play.
Her thoughts may seem quite far away.
In many ways she won't adapt
and she'll be known as handicapped.

So let's be careful where she's sent
We want her life to be content.
Please Lord find the parents who
Will do a special job for you.
They will not realize right away
The leading role they're asked to play
But with this child sent from above
Come stronger faith and richer love
And soon they will know the privelege  given
In caring for this gift from heaven
Their precious charge so meek and mild
Is heavens very Special Child.

There you have it. Thanks Mom.
 And so I leave you tonight with tears in your eyes and the thought of once again returning to your world, where maybe things are not so perfect but remember...there are those who would give anything to be in your shoes just for a day!
So kiss the one you love and say a little pray for me!(and Steph)
Thanks for being here
Hugs 

To Be Or Not To Be...What A Question!

Well As promised a view into Steph's first year of life! WARNING, It's not for the faint at heart.
Speaking of heart, Steph arrived in this world late and without anyone knowing what she had in mind upon entering. Her birth was complicated and I was expecting an easy delivery(after all I had done this three times prior)as well as her doctor. Needless to say SURPRISE! Steph was stuck! Her brain didn't want to leave and her heart was tearing her apart. This was a real case of mind over matter. I am just thankful that the mind lost!
She entered this world silent, being thrust around from doctor to nurse to doctor. Lots of action in our room as the nurses ran in and out and new doctors arrived. The nurse said that they were taking her to the NICU unit. When they decided to let me in on the secret I was told that she was being checked over by a cardiologist and that she had signs of  a child with Downs. My first words out of my mouth was will she live? The doctor that was relating this news to us bent down and took my hand and said that was up to me and God. I asked why me? Knowing that God was foremost in this decision what could I possibly have to say about this.He told us that they were just helping her breath by giving her oxygen and that she had turned blue from the stress of the birthing. He said that she was taken to NICU Unit where they were doing further tests and that she needed more medical attention then they could give her here. My husband kept telling me how beautiful she was and how proud of me he had been. Another doctor came over and said "Mr. & Mrs. Lozano as you know you have a little girl, can I ask you what name you have planned for her. He started to explain that she had been born with over a 1,000 holes in her heart  due to the blah blah blah (words that I was not familiar with)  and a ASD(atrial septal defect.) she was hypotonic  with various stigmata suggestive to Down syndrome. Yeah,  Like I knew what all this meant!  He then asked me if I  would want them to continue life support on my daughter. Now it comes out! Here is where I had to decide!" Well, of course I want my daughter to live, are you nuts!" Those were the exact words I told this man who was standing over me talking in medical terms I knew nothing about.  A nurse came over and asked me if I would like anything for the pain? I don't think they would have anything that would help this kind of pain I was feeling so I told her, "thanks but no thanks". They transferred me to the recovery room when all of a few minutes later I heard a doctor tell the nurse that I didn't need to be in there with the others and that I would be more comfortable in the birthing room I was in before.  I was then taken to a private room, even though my insurance was for a semi-private, and told that someone would be in to talk to us shortly.  So we waited. My memory escapes me as far as time goes to how long before anyone came into the room, but I can tell you this that no one, not even my best friend  who was my  birthing coach at the time or my husband had entered the room. At some point my husband appeared and we talked and cried and he told me he had been down at the NICU unit watching. Enter a social worker... her job was to inform us that the doctors had labeled her with being Down syndrome and that she would be hospitalized for several months if not weeks due to her condition. That the insurance was notified and that I would need to apply for state medical care for her. She would send someone to the hospital to talk to me further about cost related factors in raising a child with Downs. She handed me some pamphlets to read about having a child with Downs and asked me if I would be taking her home when she was released. I remember crying and telling her that I would never give away my child no matter what was wrong. She told us that the doctor would be in shortly to talk to us about Stephanies condition and that she was stable.
I know I had said the first year of her life and this post was about her first day, I will continue more tomorrow.
It was time for me to rest in the story and so it is time for me to rest now.
More hugs coming at you.

Many Syndromes BUT One of Me

Today I have decided to share my experiences with others. Unique to me but yet helpful to others, I will begin my journey. I will take you through the life, as I know it, of my daughter Stephanie who has Down Syndrome. Just one of the many labels of  "Syndromes" society has chosen. She wears it like her name and struggles to become an individual. I say this because throughout her life of schools and doctors many have commented "you forgot to include Down Syndrome"...you think!
So this blog has been created to hopefully help others not only to understand but vent, cope, laugh, cry,  find friendship but most of all bring "Stephanie" to life as a person and not a "Syndrome".
If you are a new mom or an expecting mom, maybe even a mom with a special needs child, I hope you will join me.
Walk with me, talk with me and I am sure you will share with me a life that is not quite perfect but full of love.
 In the following days I will share the first year of Stephanie's life in not so rose colored glasses. Can you learn from me, I hope so. Can I learn from YOU, Yes! There are no wrong answers but there are answers that might not fit your needs at this moment.
Welcome to our world!