The Squeaky Wheel (advocating for your child pt. 1) The school side

When your child, with special needs, goes to school it is hard to know what to expect, and how much support your child should get in the schools. There is a fine line between being a advocate for your child and making the school resent your attempts at helping.

First of all, I would like to say that, most, schools are, or can be, your friend. The schools often have their hands tied when it comes to providing support for children in general. when it comes to children in schools the district and government are playing math with your children. you see each child that may or may not need help gets classified by letter and then a grade inside that letter. I am basing these classes on a 2002 letter system so please excuse me if they made any minor changes. if your child does indeed have special needs they will fall into one of these categories:

• Level 1
  • Physically Dependent (A)
  • Deafblind (B)
• Level 2
  • Moderate to Profound Intellectual Disability (C)
  • Physical Disability or Chronic Health Impairment (D)
  • Visual Impairment (E)
  • Deaf or Hard of Hearing (F)
  • Autism Spectrum Disorder (G)

Again, please remember that these classifications are from the BC governments site, so there may be differences if you don’t live in Canada, or in BC.

inside these classes there are certain criteria your child needs to meet to require extra help. lets use children that have behavioral needs, or mental illness as an example of how little differences make or break the need for additional support. here are the critiria for getting extra support or not.

Students Requiring Moderate Behaviour Supports or
Students with Mental Illness

Assessment Criteria Related to Student

• Must have documentation of a behavioural, mental health
and/or psychological assessment which indicates needs
related to behaviour or mental illness
• Demonstrate aggression, hyperactivity, delinquency,
substance abuse, effects of child abuse or neglect, anxiety,
stress related disorders, depression, etc.
• Severity of the behaviour or condition has disruptive effect on
classroom learning, social relations, or personal adjustment
• Behaviour exists over extended time and in more than one
setting
• Regular in-class strategies not sufficient to support behaviour
needs of student; beyond common disciplinary interventions
• Rule out other conditions which may be contributing to the
behaviour (for example, side effects of medication, learning
disabilities)
• For Mental Illness, the diagnosis must be made by a qualified
mental health clinician

Criteria Related Planning and
Service

• Must develop IEP with goals that address student’s behaviour
or social/emotional needs and measures for student
achievement of the goals
• Must provide support services and adaptations/modifications
as indicated on the IEP
• No requirement for shared planning, implementation, or
funding with other service providers or agencies, but does not
preclude such arrangements

In other words, a child with these symptoms needs an independent education plan (IEP) that the teacher can use to modify their curriculum to meet the child’s individual needs. The teacher might need to give that child extra attention to keep him/her from distracting the class, but there is no other support that is needed (the “but does not preclude such arrangements” is, in my experience, in legal talk meaning the teacher can talk to an expert on their own time, if the expert is already in the school for someone else).

Now lets see what support looks like:

Students Requiring Intensive Behaviour Interventions or
Students with Serious Mental Illness
(Special Education Funding Supplement)

Assessment Criteria Related to Student

• Must have documentation of a behavioural, mental health and/or
psychological assessment which indicates the need for intensive
intervention beyond the normal capacity of the school to educate
• Demonstrate antisocial, extremely disruptive behaviour or
profound withdrawal or other internalizing conditions in school
• Behaviour or mental illness serious enough to be a risk to
themselves or others and/or significantly interfere with academic
progress of self and others
• Behaviour persistent over time in most other settings
• Behaviour or mental illness serious enough to warrant extensive
interventions beyond the school
• For Serious Mental Illness, the diagnosis must be made by a
qualified mental health clinician (psychologist with appropriate
training, psychiatrist or physician)

Criteria Related Planning and
Service

• Must develop IEP with goals that address student’s behaviour or
conditions of the mental illness and measures for student
achievement of the goals
• Must provide support services and adaptations/modifications
related to the behaviour or mental illness as indicated on the IEP
• Documentation to show that school district has already exhausted
resources normally used for moderate behaviour interventions
• Requirement that both plan and delivery of service is coordinated
with community service provider or agency (i.e. mental health
clinician, Ministry of Children and Family Development, Mental
Health, First Nations Social Worker). Not enough that another
agency or ministry is “involved”

these hoops take forever to jump through, and in the meantime, the teacher is the one that does most of the work. based on that one example I hope you see that there are a lot of kids that need help, that just don’t get it, or it takes a long time to work things out (I have seen it take half a year to two years to cross all the T’s and dot all the I’s)

So, how does this affect you? especially since most of my posts about education have focused on the Autism Spectrum. I want you to see just how much your child’s school needs to do to get the money for each kid in that school that may need help. Your child is no exception. There are a lot of schools that have teacher aids (each district calls them something else like: Educational assistant, special educational assistant, child ambassadors, and so on. basically they are the extra body in the class to give those kids that need consistent one on one time, for one reason or another, the attention the deserve, without eating up all the teachers time for the other children. That does not mean that these children are ignored by the teacher, they in fact get just as much attention as the rest of the class from the teacher. For 8 years, before my brain tumor, that was my job, and my passion), but there is not enough to serve every child that needs that extra attention.

As a parent, it is your job to find out what kind of funding your child has. Do they get Physiotherapy, and, or, occupational therapy? Do they get speech therapy? Do they have a youth and child care worker working with your child (usually used for children with extreme behaviors and mental illness)? How much extra aid and resource time do they get? Then, find out what all those peoples goals are. You might think that, that is the schools job, and you would be right, but it is your job to be educated on your child’s education and physical goals that the experts and school has. You also have to have goals you want. You might want your child to have the maximum amount of interaction time as possible, or keep up with all the others kid’s educational goals, but be realistic with those goals.’

On of the positions I had was with a boy, that had a sever case of cerebral palsy. He couldn’t move, but he could smile and frown even cry at points. we had myself, the teacher, a resource teacher, physiotherapist (PT), occupational therapist (OT), visual therapist, nurse and the parents working on his IEP (individual Education Plan). The visual therapist wanted me to take my student into a dark room and try and get him to tack an LED light with his eyes. the process would take 30 min out of the class and the class room, but it was important. The physio wanted me to take him to a room and do stretches, otherwise his muscles would seize up on him and he would be in extreme pain. That was to be done twice a day for at least 60 min. The OT wanted me to stretch out his fingers, get him to attempt to move his hand and feet to press a button (something I am proud to say he improved to be able to do it 2/5 times. small steps, led to big steps), and walk in his walker. That process would take about an 90 min out of the day. Then we had lunch break, recess and the point of integration, keeping the child interacting and learning from his/her peers. and then there was the hour or two that I would have to help do some 1/2 time with another child that needed extra time, that just wasn’t available. That again would take an 60 min out of the class. he also needed bathroom breaks, 20 min to get all the equipment (lift bed, wipes, diaper) and feed him(he was G-tube so we needed to be in a kitchen, just for him, and prep, clean and start feeding, then stop when it was done clean everything, dry and put it away, marking it all in a book for liability)taking 20 min each  . Lets add that up. 30+60+60+90+60+15+60+15+15+20+20= 7 hours out of class. Of course in the school we want all of our children in the class for as long as possible, but for my little man. Being that school is not 7 hours my job became impossible. I also could not transport him while he was eating, so he would have missed out on field trips with his class, if not for the fact that his mother knew when to be that squeaky wheel.

 

Now you know what the school’s have to put up with. my next post will be about what you can do to help your child be properly integrated into a their school.

my info came from:

https://www.bctf.ca/issues/resources.aspx?id=10812

Click to access special_ed_policy_manual.pdf

http://www2.gov.bc.ca/gov/topic.page?id=539034EA83554537AEE3444F3A8279B0

if you don’t live in BC, look for your government website on special needs designations.

I wrote a post

I wrote a huge post on how to be a good advocate for your child in a school setting and when I hit “save draft” it said that something was wrong with saving the post….and it was gone. I almost cried.

So. coming soon(ish) I will have advice on what, who, and when to talk to the people that work with your kid 6.5 hours a day 5 days a week (one day off per month for Professional Development, and usually a holiday thrown in there….and then there is winter, spring, and summer break.) I will re-write it when I get the time. It had a part on how to find out how much, if any, extra help your kid should get, and how those funds are used in the schools (focused on BC schools, but I am sure you can find similar info in your area’s too. I’ll try to help steer you in the right direction for searching those things out)

Educating Autism (Part 2: Therapies)

The key to helping children with Autism is early diagnosis, and implementing therapies that best fit your child. I have to admit there are a lot of good therapies out there and a few bad ones (my opinion only. All kids are different, and what therapies I think are bad could, in fact, help your child). So research is key to choosing what method your child needs. As for me, I don’t have a child with Autism. My experience is professional. I spent over 10 years working with children with children and have been exposed to a large diversity of therapies.

I have a confession to make. I am not a fan of ABA (applied behavior analysis), or at least not the ABA that I have been exposed to most of the time. I started off learning about a system of treatment started by Ivar Lovaas and Robert Koegel in 1970. They developed a method of ABA called Discrete trial training (DTT). DTT is a method that is focused mainly on a reward system. if a single task was rewarded than it was more likely to be repeated. It was a simple theory, but when practiced it felt more like training a dog to me. I mean no offence, to those that practice this type of ABA. The system is sound. Society today is based on the same model. Lets, for an example, take marketing. A company will have a benefits program where if you spend money you get something in return. The biggest rewards you can get is for buying multiple items, weather you need them or not. Lovaas and Koegel reported a 47% success rate, of getting children to equal intellect and social behaviors by the end of grade 1 with 40hrs a week of therapy, however those stellar results were not able to be reproduced with other therapists. a very simple example of DTT is to train a child to come when called. To get the child to listen you would send him to play, and you would watch for a while, then call his/her name. If the child did come they would get a reward, such as food, if they didn’t come they would be made to come, and shown what they would have got if they had come on their own. This would repeat until the child would come 100% of the time, then you would move on to the next task, or portion of a task and repeat these steps. Later Lovaas and Koegel criticized their initial method on the grounds that the method was to rigid, and didn’t help the child generalize their skills (a child would be able to come when called, but unable to do more than one task, or do the same task in a different environment.). Those are the reasons that originally turned me off ABA.

DTT is not something to be thrown out entirely from therapy however. As I said before, it works on adults without us knowing it, and it does work on kids as well. When a child is young (under 6) is is hard, if not impossible to us more abstract motivation to increase or decrease a behavior. DTT uses repetition and concrete rewards (often starting with food, and moving to other rewards as quickly as possible) It does work, but it isn’t good for generalizing abilities (feel like a broken record on that one).  There are potentially confusing terms when you read about DTT, or any other therapies for that matter, based on today’s perception of what the word means, not what it has been associated with. reward and punishment are often the biggest definition questions I have ever got from families that I have worked with. The term reward is a simple one for us to understand. a Reward is something positive given at the end of a desirable action. As I mentioned before if a child comes when called, a child correctly identifies others emotion, or any other correct response to a prompt they get something they desire (you scratch my back and I’ll scratch yours). Rewards, or positive reinforcement start out concrete, food, a favorite toy, and then move on to something abstract, verbal praise, high fives, and finally, we hope, move to an intrinsic reward, they are proud of themselves for doing a good thing.

Punishment, today, is often associated with a spank, time outs, smacking hands, or other very negative things. Punishment doesn’t mean any of those things in educational terms. In the simplest terms Punishment is withholding a reward, verbal correction (not to be mistaken with verbal abuse, or anger). Another form of punishment is a negative reinforcement. Usually a negative reinforcement will happen before a desired reaction. Again, using a simple example, Think of yourself in the car. You turn on the car and hear beeping. You know exactly what the beeping is about…you haven’t put on your seat belt yet, so you do and the beeping stops. The beeping is the negative reinforcement. A negative reinforcement can be as simple as repeating a command, “look at my eyes…look at my eyes…” and then followed up with a Reward/positive reinforcement if needed to further motivate.

To fully explain all the different parts of ABA in full detail would take pages…and I might just do that one day, but not today. I wanted this to be more of an overall explanation than a detailed comparison, but I felt I would be remiss to leave out the history of ABA, since most people in learning about ABA, get the original DDT descriptions, first made famous by Lovaas, and “throw the baby out with the bath water”, so to speak.

The Therapy I spent most of my career drawn toward was a model called, “Floortime”, developed by Dr. Stanley Greenspan. Looking in on a session with a child and one of their therapists, it will probably just look like two people just playing on the floor, or where ever the child likes to play.  The joy of this method, is that’s what lies at the heart of the therapy. Every Child is different, they have different likes, dislikes, things that excite them, and things that turn them off.  Take me for example. If you put me in front of a computer and turn on a game, I could play for hours. I could talk to you about the poly count of the characters and what it is that the developer made the focus of your attention, and what they put in there to draw your eye away from the things that they cheated on, to save on memory, and performance. A good chunk of my friends don’t even know what half of that last few sentences mean. We are all different. Its what makes us human. Its whats makes us…..Us. So why wouldn’t we try to engage a child that just happens to have autism on a plane that they don’t even have any interest in. At the end of the day your, of someone you knows, child is just that, a child, and children learn to interact through play. My job was to find the educational , social, emotional, and tactile merit to what ever the child wanted to do.

Sorry there is less history here, but the floortime model was brought together in the 1980s. It all started with Dr Greenspan’s  Developmental, Individual Difference, Relationship-based (DIR®) system, developed for children of all special needs. From there, there has been multiple independent studies proving its value for children, specifically, with the autism spectrum disorder. See not much of a history to be had.

I firmly believe that all children learn in similar ways. someone who has a disorder, in anyway, just learns in a different order than the rest of us. A Child starts to learn with play. Imitation, is usually the first thing a “normal child” (I always joke that normal is just a setting on some dishwashers, not a describer of people) uses to learn emotions, communication, exploration, and other complex tasks, so that is the first step with the DIR Floortime model. Get down on the ground, or where ever the child is, and work at injecting yourself into their play. Eventually the child will start letting you into their play on their own. Once your in, the sky is the limit….sorta. If you push to hard, the child will push right back and shut down. I like to teach communications by gently cheating, or in someway breaking the rules of play (called an anticident) and quickly help the child come up with the proper response (the behavior), then the child gets the reward of their hard work, the game gets back on Their track (consequence).

There is one more, enjoyable, step that this could be taken. At one of the schools I was allowed to start a student playgroup. I got all the kids together before the playgroup began I would round up the friends of the “target child” and teach them about Autism, and their friend. I talk about the challenges the other child has with play, or interacting  with them in a social setting (kids, when allowed, have far fewer hangups than we do as adults, and be quite understanding if given a chance). I talk to them about what rules, how often and when, I want broken, and how to help their friend deal with these complex social situations. At first I keep close in case something goes wrong, but the longer the playgroup lasts, the less I have to step in to help. Eventually, that playgroup spills out into the playground (not with my direction, it just happens. The kids connection with the “target child” and start seeing them as a person instead of a disturbance, or risk.). Those kids that we trained, now start helping others learn what the triggers, behaviors, and consequences of actions, and how to steer things toward a positive track before the behavior gets bad.

The best Therapy for your child is the one that works. I wish I could just say “do ….. and it will help all children with autism”, but since each child learns different, each child needs a different therapy/combination.  Just remember, you don’t have to, nor should you be, a one person army with your child. There needs to be a support group both for yourself, and for your child, you can’t take care of your child if you aren’t taking care of yourself too. Remember, if we didn’t have differences we wouldn’t have computers, the internet, music, plays, physics.

 

Here are my references so you can look into it yourself if I didn’t make enough sense.

http://www.autism.net.au/Autism_ABA.htm%5B/embed%5D

http://www.autismspeaks.org/what-autism/treatment/applied-behavior-analysis-aba

http://www.autismcanada.org/treatments/behav/analysisibi.html

http://www.autismspeaks.org/what-autism/treatment/floortime

http://www.stanleygreenspan.com/what-is-floortime

http://www.icdl.com/DIR