- This topic has 3,764 replies, 583 voices, and was last updated 3 years, 10 months ago by
.
-
Topic
-
-
Honestly Debra, I am not offended.
I know the struggle that parents who have children with special needs have. I started working in the school board 4 years ago as a special needs worker, after my first year of being on call I was placed in a full time job, working with a little boy who was diagnosed as being "developmentally delayed." I can't even explain to you the injustice that I have seen with this little boy and his family. When he came to kindergarten he was physically five but mentally at 9 months. He was just learning to walk, and he was placed in kindergarten. Well life was okay for him in kindergarten, because in a K class, students have alot of center time to play, and there are plenty of toys, songs, active play etc, to keep him integrated. However, because I had worked in an autistic classroom, the more I worked with him, the more I was convinced that he may be autistic. So I talked to mom, who said that he had been assessed by Sunny Hill and no he was not autistic. That was just the beginning, for me…I became absolutely attached to this boy and found myself fascinated by autism, because I had spent half a year in an autistic classroom I had the opportunity to see how vast the spectrum was. Well the boy then moved into grade one, he was now slowly becoming more independant, and we started to see major progression in his "developmental delay." He learned how to walk, he learned some sign language, he learned how to climb stairs, and pick himself up if he fell. Once again I asked mom, maybe he should be reassessed. So he was put on a waitlist….he wouldn't be tested now until he turned 6. Well guess what…he turned six and all of a sudden he was diagnosed as "autistic." So much for early intervention, and so much for giving the family the funding they could have used. I felt like I should be doing more for the family and this little boy, so I took a second job, to learn about ABA, therapy etc. I started working with a family after my regular job, and everday saw the differences between one boy who was getting therapy and another who was getting nothing. I felt sad, but at the same time more motivated to do whatever I could for the student I worked with in the school board. People thought I was crazy. Well the boy in school was now getting harder to work with. Grade 1 was a little more academic, and so I found myself spending more time out of class with the little boy. Which is fine if we had a place to go. Well most days the gym was unavailable, the activity room had preschool programs, and it was raining outside..so if my student needed a break, we would just travel up and down the halls, or spend time in the computer lab. As for toys or items that would keep my student engaged…there wasn't anny. So I started buying things for the little boy. I asked the school about being reimbursed, and was told that we had $100 for all special needs in the school. If you do the math…$100/30 that works out to nothing. So I started going to garage sales, dollar stores, and just becoming resourceful. But that was just one part of it. The other part is that the family has very little english. They have no idea what their rights are. THey didn't have the education to find out what they could do now that their son was diagnosed. I tried as much as I could to guide them in the right place. I tried to find an autism support group. But language was a major barrier, and mom had a newborn, a full time job, and this family is considered low income. So they started therapy for this boy which made me extremely happy. After about 6 months I was curious about how my students therapy was going, so I asked the family if I could meet the therapist, and if we could become more consistent (the school and home therapy be on the same page). The mom was happy to have me come and see what this boys therapy looked like. I was devastated…for lack of a better word. His therapy was not therapy. It was a disorganized mess. There was no official program. The therapist that was working with him spent more time playing with the newborn than the boy that was having the therapy. The consultant was charging $125 an hour, and was coming once a week, but not doing anything, except giving direction, but not showing. So I asked the mom if I could attend the meeting with the consultant. I attended it pretending that I was just a therapist looking for a job, but really I wanted to see what a $125 session looked like. The consultant was useless, she was trying to do stuff with my student that I do at school, and things that he is capable of. But the way she was doing it, there was no way my student was going to understand..I didn't even understant. For example matching…she was trying to get him to come to the dinner table, sit down and do matching. Well…number one, its the dinner table…not a work table, and number two, how is he supposed to sit when the chair is too high, as well as the table. Grrr…also there was no data collection, and no program checklist. It was just a notebook, with illlegible handwriting, so I asked the consultant about the data. "Oh….the data…Oh I didn't think the family could understand, and I don't want to confuse them…but if they want a program I can provide one.."and she pulled out a program book, with data sheets. To make a long story short:
I worked with this family for four years.
I have seen the school system fail the family…because they want integration, but they don't have the resources..the more academic it became, the harder it got to keep him in class, and with no place to go he spent most of his day out of class and in the halls.
I have seen sunny hill fail them, had they given him the proper diagnosis in the beginning, perhaps he could have gotten early intervention and he could've been alot farther than he is today.
I have seen the consultants and therapists fail him. Well he was finally diagnosed only to have people rip off his family.
I have seen social workers fail them.
I know the struggle. I know how hard it is for families, especially ones that don't have a voice, don't have the language and don't know their rights. But I work in a school system that believes in "integration" but there is nothing to support it. This year our school has an empty classroom. So at the beginning of the year I made it clear to the principle that I wanted that classroom for our special needs students, a place they could go for breaks, a place where they were safe, and could have play time. Snoezelen may not be ideal, but after seeing what North Vancouver had to offer, I bought some sensory things with my own money for the empty classroom, a projector, some massage toys, a rocker chair, a trampoline, cd system, etc., and I can't tell you how much it helps our students. My students became so much more content, I would take him for sensory breaks in that class, and then take him back to his regular class and he was more focused, more engaged and calm. I am not saying that it works miracles, but it allows our students a litte bit of control in a place where they have none. They control the lights, they control the massage buttons, the music etc. My student has now been placed in a life skills classroom in a new school. So I no longer get to work with him which makes me really sad. But the time that I spent working with him taught me alot about myself, about autism, and about the system.
Although he has left, we have three more students who have come into kindergarten diagnosed with autism. We also have one student who is developmentally disabled, non verbal, with a visual impairment. In kindergarten they are still okay but I worry about what happens next year or a year from now when they are too distracting for the rest of the class, or they need their breaks. That was my intention for creating this room. And my only intention.
I know that your message was not meant to offend, but I did have some emails that were more discouraging, and I felt extremely guilty for posting on the FEAT page, and now I myself am questioning why I am doing this again. This room will not benefit me in any way. By the time it is set up and organized, I will no longer be working there. I just wanted to make sure that other students were given something more than a hallway or undercover area for a place of release.
Anyways, I apologize for such a lengthy email. I honestly do admire and have alot of respect for parents who have children with autism, because I know that you have alot struggles and challenges to face with little or no support.
Take care,
Kam
- You must be logged in to reply to this topic.