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.
Wednesday, June 29, 2011
Monday, June 27, 2011
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
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
Sunday, June 26, 2011
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
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
Saturday, June 25, 2011
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. ;-)
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. ;-)
Friday, June 24, 2011
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.
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.
Thursday, June 23, 2011
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
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
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