hardofhearingchildren.com by PAM Candlish MLS
"What did you say?" "Eh?" "WHAT did you say?" "MM?" "WHAT DID YOU SAY?" oh "PARDON ME!"

Kids with Multiple Handicaps including Hearing Problems

The impact of the Baby Doe laws on medical ethics means that each condition must be treated to the best possible outcome, without regard for other conditions.

A concurrent condition is mentioned in the history, but each specialist doctor is looking only at his/her specialty. Reid's developmental pediatric neurologist was a speech pathologist before s/he went into medical school, and took the time to comment on his unexpected excellent speech. 

Help. I am already Broke...

Most children's centers have an integrated team approach with referral to other specialists in the same center, which is definitely more convenient and efficient. After we finished paying for the hearing aids, and the transportation to auditory-verbal classes, or fixing the hearing aids within 24 hours, we did not have any money left to start out as the other disabilities came up. For the most part, the neuro-psychologists who might have helped were and are private services which are too expensive.

Documentation is Overwhelming for the Whole Team

Reid had 22 pages of documentation added into his OSR from doctors,  occupational therapists, audiologist, psychologist, psychometrist. Most of the information is written in completely clear understandable language if you have several post-grad degrees along with your neurology specialty. The documentation produced for him with Denver and Disc testing when he was a preschooler was not ever copied to the parents, and was thrown out when it was seven years old by the agency which produced it. This means that it is impossible to go back and look over the tests again. Pretty stupid. It also makes me ask exactly what the current knowledge is based on, because no-one had a clue five or ten years ago. To throw out documentation about a child who is already handicapped is irresponsible.

I partially solved this problem by having all his tests sent to a friend who is a psychologist. As parents, we started getting the first copies of the testing after 1997. It is necessary to maintain very careful files at home, Reids are 8 inches of file space. Original documents are not given to anyone. 

More Meeting Time needed

Meetings about Reid take much longer because there are so many problems to be discussed. For many years his IPRC was one-half hour long, 10 minutes for the leader, 10 minutes for the teacher, 10 minutes for the parents. This is probably why the school board never quite understood the term multiple. 

Don't Sign Papers you have not read and Understand

The other thing the school did which was wrong was inform parents at the IEP meeting to sign a piece of paper to indicate the parents' presence at the meeting. And the school completely neglected to tell any parents that signing the paper gave consent to the school to proceed, even if the parents were off the wall with displeasure. 

Visited by the Police for threatening School Board Employees.

The Special Ed Officer for Deaf and Hard of Hearing students was a good friend of mine after years of chatting about Reid and the state of deaf education. When we moved to the country, I had copies of every report on Reid sent to the SEO from age 2 years. In a phone call, he told me he was unaware that Reid had multiple handicaps. Well, he was either lying, or he never read the documentation. I yelled at him so loud that I did not need a telephone. We don't trust each other anymore. 

The next week we had another IEP meeting at school. I told the teachers that Reid was coming home and smashing his head into the oak door frame over homework, and that the teachers would be charged with abuse, if they continued to exhort him to try harder. Then I found out that a teacher can say anything they like to a student, they have hit the child in front of witnesses to be charged with abuse. Neither the States nor Canada has adequate legal protection around kids like Reid who get it from the teachers , day after day. One of Reid's teachers handed back work at the end of the year saying "Obviously William had done the work because Reid was too stupid to do it." I heard about this from another student in class.

Nobody was making the government or the school board obey the education laws. Even the police person was sympathetic to the situation, but the school board considered themselves to have been threatened.

So being visited by the police was so bad, so depressing, so unfair, I started mental health counseling. (It has occured to me that children might learn bullying from the masters in the school system.) 

Hearing

When Reid was first identified with a hearing loss in 1984, the medical and education system evaluated hearing on the best hearing in the better ear. Reid has a keyhole of normal hearing at 500 hz. in his left ear, and slopes from 40 dB to 60 dB, and a profound loss in his right ear. He was considered to have a mild hearing loss by the medical, educational and social systems. Fortunately he had me as a mother, because he had no government services beyond age 4 for his hearing. The method of evaluating a hearing loss was changed to a educationally significant bilateral sensorineural hearing loss several years ago. I am responsible for a great deal of lobbying for this benefit.

In 1996, the year my book was published there was another conference in the States on "When Deaf becomes Multiple" to which I wanted to go but we used the spare cash to go to Utah in the motor home from hell (had a major breakdown every 200 miles) but what a fantastic experience motoring across a coloured landscape which was the black and white background to my childhood TV.  

Continued Expectations of Success Thwarted. 

I had difficulty dealing with the cheerful book which I had written about a hard of hearing child whose hearing loss we coped with well, and the impetus to help all children with mild and moderate hearing losses to use Dr. Ling's method, to get newborn's to have hearing tests, and to get FM's into the home, where the family does the speech work, to empower parents to deal better with a hearing loss in the family. My book was the result of years of research, hundreds of interviews with parents of many different levels of hearing loss, but the star was Reid, my son. 

Meanwhile back at the ranch, the same anoxic events which had caused his hearing loss also caused other problems. 

We were waiting to spend and spending time in various doctors' waiting rooms trying to find out why writing was impossible, why he had a tremor. why? why? why? beginning with an OT at school who bravely defined the need for alternate communication to writing in grade 4. Reid had repeated grade two, and still had not caught up...the school provided a psych assessment which determined that he choose not to write, and no matter what we did, we could not eliminate this ignorant assessment. 

Sight

Reid was in a nursery school in Oakville before we moved to the country, and had a sight test with the other students which indicated good sight. 

When my daughter Barbara was diagnosed with a binocular focusing problem, the whole family started seeing an eye doctor who checks both eyes at the same time which most eye doctors do not. When Reid was 5 years old, and still not really identifying colour, a formal colour test indicated he was colour-blind, and modifications to all the classroom materials were made. When he was 7 years old, he passed the colour sight test with flying colours, so to speak.

He has the same tendency to cross eyes as I do, and he is far-sighted. Whenever he goes to the eye doctor's he comes home with new glasses. Glasses and hearing aids are incompatible for many people. Reid now has a prescription for glasses for reading and using the computer. He can cope without the glasses, but he has to work harder to focus, and if he were reading at a university level, he would need the glasses to keep up. He has 20/20 vision in one eye, 20/15 in the other eye, and 20/5 in both. 

DCD  (DSM 315.4), Developmental Coordination Disorder, Clumsy Child Syndrome or Dyspraxia

He also saw a pediatric developmental psychiatrist who happened to be writing the standards for DSM for clumsy child syndrome. At that time, around 1994 clumsy child syndrome was only at mild and moderate levels. Reid's symptoms were too severe to be diagnosed as clumsy child, so he had no label, just a list of his official symptoms, and a suggestion to the school system that Reid needed extra help at school, which the school ignored. This is the exact point when we should have sued the system into compliance.

 In 1996, clumsy child syndrome became known as developmental coordination disorder, with levels from mild to profound. Reid was diagnosed with DCD at a severe to profound level by the pediatric neurologist. This label did no good at all because the name itself is a stupid combination of generic terms which search engines ignore. For a long time, all I had was a photocopy of the DSM listing.315.4.

The snow website is now giving a course on DCD which they imply is mild and moderate levels and is out-grown. So if a teacher learns about DCD, they learn incorrect information. So it would seem there is a gap of 5 years between the doctors deciding something, and the teachers learning what it is.

DCD is identified in Scandinavian countries by the teachers to the doctors. They have some lists of symptoms which are reported. There is also some research going on in Japan. Dr. Helen Polatajko at the University of Western Ontario was right upstairs from where Reid has his audiology at Elborne College, but while hearing services were free, other services had to be paid for. At the  University of Waterloo  in Kitchener, June 2001, Kelly Margaret Pryde received a Ph.D. for "Sensori motor Functioning in Developmental Coordination Disorder: A kinematic and Psychometric Analysis." 

DCD is Dyspraxia in the UK

Finally I found out that DCD is dyspraxia in the UK etc, and found information in the Australian Library Portal for parents of children with special needs. Eventually I was in an ordinary bookstore and found a wonderful book called Dyspraxia: the hidden handicap. by Dr. Amanda Kirby who is the parent of a child with dyspraxia. This book is as great as mine. I am so glad she wrote it. If your child has DCD, get this book.

Dysgraphia

Dysgraphia, or the inability to write, is a symptom of  DCD.  Dysgraphia can also be a sub-set to dyslexia, but Reid had higher than average reading skills so he did not have dyslexia causing his dysgraphia, and he was not eligible to go to the provincial school for children with severe learning disabilities. Finally someone wrote a short book for teachers on dysgraphia pointing out that it was a problem for some kids. Unfortunately the same book suggests that it is outgrown, and therefore the school did not have to help. The psychologist's inaccurate assessment was in force from grade 2 to grade 7.

In 1996, Reid was assessed by an OT at a Children's Centre, as having some problems, but not as bad as the local OT felt. Subsequently he was retested and found to have poor fine motor skills, at age 14 his fine motor skills had progressed to age 5, so I don't know what the school thought they were teaching him. The special ed teacher spent two years teaching him to type, but dysgraphia is just as bad for typing as writing, in most cases. He learned home row in 2 years. We did the loops program at school and at home. We also worked on kinestetic awareness using a piece of bumpy ceiling light cover plastic, making the letters with our hands.

Scottish Accommodations for Dysgraphia

In 1994 dysgraphia, or agraphia  were almost unknown words. However I found on the web some great accommodations which were being made in Scotland for students with dysgraphia including longer test times, oral tests, assignment modification (which the school would not do) the use of scribes, and the use of tape recorders, and possible use of oral computers. 

Tape Deck for Reid instead of Writing

Most of the teachers were technology resistant, but we provided Reid with several tape decks. As a librarian I could see great problems in the near future with millions of tiny unmarked tapes representing Reid's academic progress, and wanted paper output without me doing all the typing. Some teachers were intimidated by the tape deck. Another took it home to her mother who had been a secretary and was familiar with dictaphones. At the end of the year she mentioned to me that she had no way to mark Reid's progress because they had just used the same piece of tape over and over.

Early Oral Computer programs

I bought IBM Via Voice 3.2 and learned to use it. This was a discrete speech program which required a gap between each word. Ross used it well because he was used to giving dictation. I learned how the program worked and used it a lot when writing was not needed to be accurate and had a lot of fun with it generating poetry. One day Shadow, my collie barked when the Via Voice was on, and the computer printed,  "There Bear. Horse"  Even more interesting, the other dog's name was Bear.

Scribes needed, don't apply!

 About this time, research demonstrated that deaf children cannot listen and write at the same time, so we had fodder for the IEP to get a scribe for some situations. The school refuses to pay for scribes, and either uses a teacher or an older student. One year we had Will go to school as Reid's volunteer EA for the last 6 weeks of school. There was a 31% increase in Reid's marks with an intelligent EA helping him. This led to charges of cheating from various teachers. We also had another instance of accusations of cheating against a nice girl who volunteered to help, and ended up with her year at risk. This went on and on. When I hear the school ask for volunteers to scribe I want to warn them not to do it, because the teachers pull through in the punch with charges of cheating if Reid does not continue his low output.

Dyscalculia

Is the inability to use numbers or math. Some kids have a terrible time with the hard math in public school, and are terrific at the more ephemeral math of high school. Math was dropped from Reid's courses after it became obvious that he needed one-on-one support for math, all the time and the school system refused to provide it. I redid his daily math at home every night from kindergarten to grade nine when I pooped out using a graphing calculator. The dyscalculia is suggested to be the result of poor fine motor skills during childhood preventing the learning of basic numbers sense. 

Dys-spelling

There is not a word for this learning disability, but Reid cannot spell. It is my opinion that the school was responsible for teaching spelling which they did in large student-to teacher ratios, because they have always taught spelling to people who cannot spell. I figured the only way I could teach him to spell would be with a dog's shock collar unnecessary brutality when spell-check exists. Reid always uses spell-check. I also think that his inability to spell is the manifestation of how he ought to talk without the work I did on speech. It all part of the knot...

Dysorganization

What time to do something? What to do first? Beginning any project is so overwhelming that he goes into displacement action. 

One of the luxuries that I now have in my life is any amount of time I want to do something. I have always been creative, and I have always had my school, my university, my job, my family, and the  children's schools time tables thwarting my abilities to think and do. I can remember having deadlines and finishing an intellectual assay simply because it is time for the teacher to see it, not because I was able to show what I was putting together which might eventually been brilliant. 

I think that a lot of the dysorganzation is the result of the teacher's asking students to learn the wrong things, or to show that the student knows something, only the teacher's way and in the teacher's time frame. Since computers have entered most schools and households, the final product of a high school essay is expected to be professionally typeset using rules for academic consistency like Turabian. And no-one seems to think it is ridiculous to expect this pristine output, which even I who live on a computer producing text find difficult to achieve.  

Reading about Gardiner's multiple intelligences as they expanded over the years, I wish the school system would "Gardinize" especially for kids with many problems. Most people are not consistently great using words, but they have other talents which are squashed by the school system which only wants math and word people.

Intelligence Problems

Often I hear about children who have poor intelligence abilities and hearing problems, and no hearing aids. The first thing you must do for a child who has intelligence problems is make sure the child can hear perfectly. You never know if the child might start improving, and if they can't hear they miss any possible improvement. And even if hope is not great, the child still needs to hear as much as possible.

Bi-Polar Children

This is actually the first reference I have seen with a list of symptoms of bi-polar disorder in a child. Generally the psychiatrists will move heaven and earth to avoid labeling a child as bi-polar. 

http://bipolar.about.com/library/weekly/aa991214.htm

If you go to this link, use your back button to get back to hardofhearingchildren.com...although there are many links between about.deafness, about.special ed, and about.parentingspecial needs and my web.

Deaf-Blind.

Barbara Walters was interviewing  Robert Smithdas Ph.D. Mr. Smithdas  is deaf-blind, communicates by finger-spelling. She had the boldness to ask him which was worse, being blind or deaf.. He said, quoting Helen Keller, "Being blind cut him off from things and being deaf cut him off from people, so deafness was worse because people were more important to him than things." A very interesting answer.

Being deaf-blind is almost the only condition that the education system cannot eliminate special schools, it seems pretty dismal when you first hear that deaf-blind is your challenge. But it is not impossible. I have an e-friend who is a teacher of the deaf-blind in Florida. She is optimistic about what can be done, and has a happy classroom with music and art. 

"It is not impossible to include deaf-blind children in the typical classroom.  It is not my preferred method if the child has low language, though.  In your country, the child would be with an intervenor who would be with the child for mobility and communication purposes.  When the teacher does a demonstration for the class, the intervenor does the same demonstration with the child -- hopefully with identical materials if they are appropriate.  In other words, the intervenor helps bring the world to the child in a way s/he can process it (tactually or visually).  I've had two of my students "mainstreamed" with Deaf/HoH classes.  Usually, one of my paraprofessionals went with them to interpret close range what the teacher was signing to the entire class.  Then, during work time, she would re-direct them if they needed it or assist them in completing the assignment.  Granted, these were two of my "best and brightest" who were class tutors in my class."-Dawn Saunders. Teacher of the Deaf-Blind

Another e-friend is the parent of a deaf-blind child in Quebec. The child is mainstreamed in a bi-lingual class. Her parents separated the issues into Hearing for Dad and Vision for Mom, and went out and researched to find solutions which were generally not questioned by the other parent. Both parents work, and take the child riding on the weekend. The child is loved, and supported.  The riding is a big boost for the child.

The mom and I were corresponding by email because we both were in Savoy Society at McGill, which does Gilbert and Sullivan Operettas, and we knew many people in common. She said she had undertaken the vision research, and then a mutual friend said "Oh, PAM wrote a book about hard of hearing children, had my friend read it." She went home and talked about the book, and her husband got a big smile and pulled my book off the bookshelf. So my book taught her a lot about the hearing aspects. They both found it was impossible to separate each challenge in the end because they are intertwined in one child.

Things I Tried

Date Stamp

I bought Reid a self-inking date stamp with his name on, so he could just stamp the pages as he received them and there could be some order when the binder was dropped. You can put up to 4 lines of text on the stamp such as the school name or the child's home phone and address..

Many years, when binders have dropped he has thrown out all the work, because he cannot pick up a piece of paper without ripping it. If there is a date stamp, it gives order to re-sort.  His friends at school laughed at the date stamp, so it was not used. Great idea though.

Colour-Coding

I colour-coded his binders, books, especially text-books etc by subject by colour.  One gung ho year I put little red stickers on every page of English. So if he is going to English he looks for Red things in his locker. If he is going to Math, he looks for blue. He has a general pencil case, and colour coded pencil cases for subjects which need some tools like math (blue).

I also used the colour-coding in the agenda putting stickers against the assignments I had seen work on, and projects going in.

Write on One Side of Special Reinforced Paper.

I bought reams of heavy looseleaf paper with a plastic reinforcement on the whole side. Reid's scribes only write on the front of the paper so he can use the back for his own notation. This paper is about four times the cost of regular looseleaf, comes lined and unlined. If you put on a pair of oven mitts, and try to deal with paper, you get an idea of his paper problems. This special paper helps.

Sharpie markers for writing anywhere on big pieces of paper, and the thick barreled pens like Dr. Pencil. 

The Agenda

The agendas supplied by the school were too small for Reid to use. I bought many others over the years. Some teachers were really enthusiastic about the agenda to demand school work be finished at home. For a long time I cooperated, but I realized that I was being put in the position of unpaid educational assistant and only had a tired grumpy child to work with. When Reid was younger I would attempt to find time to do the homework, but his speech work at home was done first every day for at least an hour and a half. We have now told the school that there is  no homework done at home.

Modern Oral computers

I did courses at "SNOW  in adaptive technology, organizing the disorganized learner (great course) special education, was part of the AED milleneum forum on technology in the classroom.

I bought a new computer both for my web, and to run oral programs on, I have 512 MG RAM which is very important for good oral programs. I used Susan Fulton's http://www.out-loud.com/ instead of the traditional stories to train the computer. and it does very well for me. I am not sure that the words which come out of my fingers and the words which come out of my mouth are the same, and still have problems with my thinking noises. If you can speak quickly the program is fantastic.

The school supplied a laptop with a cheap oral program, but there was no expertise to get Reid going, and I wanted that work to happen at school when he was not tired. We had seen an adaptive technologist at the Children's Centre, and determined that an oral computer would be appropriate, and tried a few other  programs like "Co-writer" which was too slow for Reid. When the laptop arrived at school it was locked in the special ed teacher's classroom, and each teacher on staff got to take it home for the night. It took our own educational consultant to get it out of the locked room.

Many of the teachers do not know enough about computers. They expect things to happen in short periods of time, while I know sometimes it is many hours before you get something going well.  

We have a special mike on the computer which has a signal to noise of 60 dB on an uni directional mike. (Andrea top of the line) It takes a year to learn to use an oral program. Using an oral computer should have academic credit equivalent to learning a language. Reid was probably the first hard of hearing child to have an oral program working for him. His speech is excellent, as I keep saying. The expectations of what the program could do and what Reid could do without professional help to get it going, killed the project. Other students at school were jealous of the equipment.

ADHD

At age 17, Reid was additionally diagnosed with ADHD of the slow type co-morbid with his DCD which is why he cannot get things done or started. It did not make any difference to the school. Ritalin was suggested, but we have declined to use drugs until the school provides an Educational Assistant full-time. It is my opinion that the emotional aspects of the ADHD are the fault of the school who does little to help a child who should have had an EA for the past 9 years. Two weeks ago, two of his teachers told him to just do it, referring to overdue projects.

Help. I am Already Sad.

In 1978, before Reid was born, all the children in the province were invited into the education system. Every child has the right to an equal education, and the right to support which is needed. I have a letter from the Premier from 1996, promising me that my child would get an education. Our school Board gets $36,000 from the Ministry of Education to provide an EA for Reid. The Ministry has published all the educational documents on the web for anyone to look at them. But the push and shove of the bureaucrats has never managed to get an Educational Assistant in the school for Reid. 

When I first read the revised education policy I was very enthusiastic as the money was accountable to the child who generated the income. This was deemed to be impossible by all the school boards. There is only one line left in all the special education documents which suggests it would be nice if the money was spent on the child, but it could also be shared with another child with the same needs in the same school.

Last year I developed asthma from reading educational documents. Reid's schooling has been one disaster after another, and with the exception of the Human Rights Commission who made the English teacher put the FM on and the overhead in the classroom, and to photocopy the overhead notes, I loose battle after battle. Last year I could not longer cope with the stresses and depression which goes on and on. While there are concurrent problems, there is no doubt in my mind that my body was finished being the mother a child with no services in school, being expected to compensate for the lack of an Educational Assistant, being expected to fight and fight and research and come up with answers which are ignored, to have expertise in something like speech for hearing impaired children and being ignored, to learn how to help the child at school, and being ignored, to have more qualifications to do something, and to have to deal with people who are so small minded that they don't know what I can do, but they continue to do nothing, and they get paid, I don't...not fair...not fair...not fair.

This year we had a million dollar meeting at school, because of the Human Rights Action the big guys from the school board were there. I said there is no more homework because it is creating too much stress for me. You assign a project, it is your problem to get him through it, don't send it home.   

Doing his lifetime over, I would take a lawyer to school meetings and started suing the school board in grade two . The next group of kids are going to be identified earlier in life, sometimes prenatally. DCD can already be diagnosed prenatally. The children whose parents have enough money to hire lawyers will get more than their fair share of education dollars. There will more identified children in each class with mild and moderate levels of conditions which we just ignore now, from hearing to autism.

Having Multiple Handicaps Increases the Problems of Education at an Exponential Rate.

I believe that having multiple handicaps increases the problems of education at an exponential rate. The doctors look at each problem in isolation, but in real life we do not know where one problem ends and the other begins. Take three ribbons and punch some holes in them, then braid the ribbons together. The holes cause some problems, the braiding causes other problems. So it is with trying to educate a child with multiple handicaps.

My Child Drowned in the Great Mainstream.

I would not mainstream Reid again. He would go to an oral school for the deaf with a higher teacher-student ratio(1 to 4 in the early years), and his other problems would have been noticed, and perhaps provided for.

- PAM Candlish

1 January 2003