Krista's Inclusion Story

Summer 1998
My daughter, Krista (not her real name) is severely mentally, physically and medically challenged. She has a condition called Hydranencephaly which is described in the Hydranencephaly section of the Rays of Sunshine web site. Her main story is told on Krista's Story page. This is the story of her education experience.

As stated on the main inclusion page, there are no segregated (officially
anyways) classes in our school district (BC, Canada). All children are educated in their age appropriate class in their neighbourhood school. Our experience within this framework has been mixed.

Krista was kept out of Kindergarten as her health was very fragile. At that time she had limited awareness of her surroundings and was quite happy at home. She attended Kindergarten for a few 1 hr sessions near the end of the year. In order to keep her with her chronological peers she was enrolled in gr 1in the Fall.

At first, things seemed ok. We worked on training the aide chosen to work with Krista in tube feeding and positioning. As most parents of children with special needs know, there were what seemed like dozens of people involved in any planning and decision making for Krista. By the time she entered gr 1Krista was much more alert and used her hands purposely. At that time Krista's main form of communication was loud vocalizations. I happened to glance at a piece of paper in her file one day while I was in the principal's office and on it was written "severe behaviour problem". How a child with no brain could have a behaviour problem, noone told me. Her entire year and program
were centered around this "behaviour" problem. Another major factor was that the nurse in charge of children with special health care needs panicked one day while visiting us at home when Krista was ill. Because of that she decided that Krista needed a nurse while at school. We thought this would lower the anxiety level of the school. Wrong!!!!!! It made it worse. Because of her "noise" Krista was kept separated from the other children over 2 hrs a day. They were training her to be quiet by putting her in a room by herself with an aide and letting her smell strawberry extract when ever she was quiet. Right after these sessions the class went to the library. The staff couldn't understand why
Krista was so noisy-she was visually impaired and had gone from one silent place to another. She was trying to figure out where she was and who was around. One day when I picked her up, the nurse said that Krista had been "crying out" all day. I'd had enough! I looked at her and asked "do any of the other children keep silent all day?" "No" she said. "Then why should Krista be silent:" There were many days that year that I was called to get her just because she was noisy. All year long, I and the others involved in her team (other than school staff) tried to get her included more. No luck. I was told by the resource teacher (the person mainly responsible for Krista's program) that she would always need to be out of the classroom for much of every day. I became convinced that inclusion didn't work for a child with Krista's needs. By
June, (much earlier actually) I'd had enough fighting. Over the summer we moved into a different catchment area.

That was the best possible decision for Krista's education!!!!!!!!!

In her 3 years at her 2nd school she hasn't once been taken out of the room due to noise. During the 1st 2 years, the teachers just planned to do activities requiring quiet while Krista was out of the room for personal care. This past year though, she's settled down a lot and was able to be in the classroom most of the time.

The staff and the children at her 2nd school have shown me that inclusion can work, with the proper supports and attitudes on the part of everyone involved. A main difference between the schools is that the staff at the 1st school didn't think she should be at school "taking time away from other kids". I should have clued in when at our first planning meeting I was asked by the resource teacher why they should let Krista come to school. Two of the three grade 1 teachers, who team taught didn't want Krista in school. They felt that it was a waste of time. At her 2nd school there was never any question about whether or not she should be in school.

Now, including a child with Krista's needs takes a lot of work, patience and meetings. There's no such thing as kissing your child goodbye in the morning and waiting for them to come back in the afternoon and only seeing school staff on parents nights or concerts. I am always (almost always) accessible by phone, cellular and pager. Most of the time I'm within 10-15 mins from the school and am prepared to drop everything at a moments' notice. I also need to be prepared to spend a lot of time at the school if there's a new aide, or a substitute aide or we're introducing a new routine or piece of equipment. I need to be patient sometimes too when staff are dragging their feet over
something I think is important to be implemented quickly. Krista's stander is one of these times. After 3 yrs. it's still not a fixture and wasn't used at all this past year. I'm determined that it will be introduced as soon as possible in Sept.

As Krista has gotten older, planning for her has gotten both easier and harder. It's easier as she's interested in more things. Her love for stories continues to grow daily. She's also settled down a lot and her health has improved too so that she's around more. Planning is more difficult because as she gets older it's harder and harder to find age appropriate activities that she can participate in. The staff and students at her school have been wonderfully inventive at including Krista.

Some examples of their strategies:

When her class put on a play, Krista in her chair was the ambulance.
Siren sounds were recorded on her Big Mack (talking switch) and her side lyer which was on a cart with wheels was the stretcher.

Her teacher would often record the answers to quizzes such as spelling and multiplication on Krista's Big Macks (she has 3, 2 are on her tray all the time, the other is used only as a switch). That way the children had to ask her for the answers.

Skipping rhymes were recorded on her Big Mack to be used at recess time.

Each day a different row in the class was designated Krista's VIPs. They took turns reading to her, reading lists of words onto her Big Macks, taking her with them to do jobs.

Whether or not it was an in or an out day at lunch time was put on her
Big Mack and Krista (and her aide) would stand in the hall to direct the
children.

As Krista is visually impaired but has very active hands the class put
together a Bug book for her. Each child wrote a story about a bug, then
made a picture to go with the story using all kinds of bits and pieces
(cereal, sequins, poker chips, glitter, etc). The pages were put together in a large binder. They also each read their stories onto a tape for Krista to listen to. What a lot of learning for all involved! Krista loves her book and is taking great delight in taking all of the little objects off of the pages and getting them onto the floor.

Because of the attitudes of the staff, the children in her school have become so sensitive and caring. One day I accompanied her class on a field trip to a Fire and Safety training center. It was a large site with most activities outside. I just stood back and watched the children. There was always a child pushing Krista's chair and another holding her hand. When one left another would move in. During a video presentation again there was always a child with her talking about the video. I even watched a child bring her out of a seizure just as naturally as can be.

No, Krista will never learn to read and write, but, yes, she's a little girl who has her own place in the community. The efforts of her school & community based teams have insured that Krista is a well known and well loved member of both the school and community.

I know that inclusion doesn't work for all children. I also know that with
changes in staff, equipment, or even abilities and attitudes on Krista's part, the day may come when it is no longer appropriate for her. I hope that day never comes.

The staff at Krista's school have benefited greatly from the input of the
Provincial Integration Support Program (PISP). The suggestions of PISP form the main part of this site.

Update: January 2000
Well, due to changes in Krista as she has entered puberty, as well as the dynamics of intermediate classrooms and children, Krista no longer does well in her age appropriate class.  During the last few months last year, she was very noisy and unsettled and had to spend much of every day outside of her classroom.  By June I knew that being in a grade 5/6 class just wasn't going to work.  I didn't have any bright suggestions though.  Once again her school team did.  They proposed that we put Krista in a grade 1/2 class for the next year as their activities were much more appropriate for her.   The principal also made the observation that the older children were less tactile and demonstrative, both of which are important to a child who is visually impaired.   Her aide would move with her and the teacher of the class was very excited and positive about having her join them.

Once again, it has proven to be a brilliant idea.  Krista is so much happier and at ease in the grade 1/2 class.   The children are wonderful with her as well.  She still spends time with the older children as she will move to high school when they do.  It has been noticed lately that there is a grade 4 or 5 girl who has been very interested in Krista.  She frequently would visit with Krista and her aide when they were in the library reading stories.  The girl was really excited when the aide suggested that maybe she could read to Krista some times.  When the aide mentioned this to other school staff it was revealed that this child had a severe reading problem so reading to Krista would be the best possible thing for her.  Krista is helping another child!  How wonderful!  

We have discovered the Talking book services from the CNIB and our local library this year so she has lots of books to listen to both at home and at school.  As Krista has gotten older she's become interested in books that are age appropriate.  This has been a bit of a challenge with her in the younger class.  So, she has both types of books to listen to.

Unfortunately, in addition to problems with puberty Krista's health has also declined. She is now oxygen dependent and through the fall has had several colds that have quickly become pneumonia.  Because of that I've decided that she needs a prolonged time away from school and germs.  I am going to ask that she be placed on the home/hospital bound program.  What that will mean exactly I'm not sure.  My hope is that we can all set up a program for her that is carried out no matter whether she is at school or at home.  At school they have been working on a number of things with her including switches and various activities with the Light Box.  I'm hoping that I can have access to the same materials so that I can carry out her program at home as well. My hope is that once she has had time to rebuild her resistance to bugs she will be able to return to school, perhaps only part time to begin with.

As Krista gets older I anticipate that it will be increasingly more difficult to include her with her age appropriate peers.   I find it absolutely overwhelming that she only has 2 1/2 years left before she goes to High School.  I think that we will probably try to get her involved in activities with a resource school in our area as the children in that program are all very similar to Krista.  We did a  lot with them last summer.  We will have to be increasingly creative at finding meaningful activities for her.

Update: June 2000: Sadly, the decrease in health continued for Krista and on June 23, 2000 she died. She never returned to school after Christmas as her health problems continued to increase and she spent most of each day sleeping. A Magnolia tree was planted in front of Kayda's school in her memory. A very touching memorial service was held at the school (and on a somewhat humorous note; the principal was so busy setting up the memorial during the last week of school that he forgot to tell me about it. I was phoned 5 minutes before it started (it was also the day of her funeral) wondering where I was. I made it to the school in record time and was very touched by the memories the children shared of Kayda).