Thursday, 27 October 2011

Homeschooling Autism - Part 2

This post is second in a related series I am trying to do on our homeschooling. Click on Part 1 to read previous post.

In this post I want to write a little bit about curriculum and schedules.

There is no such thing as an autism curriculum.

In Ontario there is no such thing as a special needs curriculum, as all students with special needs are identified as being exceptional students with individual needs. They therefore have an IEP or Individual Education Plan and undergo continuous assessment at school to update this IEP. It says on the Ontario Ministry of Education Website that "It is anticipated that, with appropriate special education programs and/or services, many students with special needs (whether formally identified or not), will be able to achieve the grade-level learning expectations of the provincial curriculum. "

Therefore the goal is to bring the child on level with his typical peers. No matter what anyone tells you at your school board, or at the autism early intervention services in Ontario, know that this is the goal or expectation from the child with autism. This ridiculous expectation therefore never really bothers to take in to account atypical development and its sole focus is conformity. It also becomes an excuse to exit children with autism from early intervention programs, set up weird benchmarks for their achievement and so on. But we are homeschoolers and we have moved past critique of standardized government education. Right? Yes.

Due to the nature of the disability you are teaching many things that are not on any curriculum, but are learned as part of normal development by typical children. Some of these things you might never be able to teach. But you don't know that until you start trying to teach them. The autism diagnosis does not come with a neat list of things your child can and cannot or will and won't be able to do.

Most parents of typical children can safely assume for example that their child will learn to communicate in words, develop executive functioning abilities, and their job is therefore to "teach to" these abilities using tools like communication, discussion, collaboration, creativity and so on.

Here many of the tools of teaching are missing. We are unable to communicate, discuss, collaborate, solve or be creative - or maybe we are able to be creative, but due to lack of communication, we cannot express creativity.

Also many of the abilities that traditional education or schooling, or unschooling etc teaches to, are missing. Many children with autism are for example unable to make choices. K definitely has preferences but he cannot make a choice. I don't think he realizes that he can in many instances and it is a work in progress. It is one of the things on our "curriculum".

When teaching K we need to first figure out what we have to work with. When we started three years ago, we had
1) ability to rote repeat or echo back sounds and "words"although to him they were only sounds.
2) ability to imitate

And that's pretty much it. When people hear that they often make suggestions that are based on assumptions that K at 3 was able to do all things that most babies can do. Let me tell you something using my baby daughter as an example.

She is 8 months old. She initiates this pattern all on her own. No one taught her this. She sees a ball, she throws it. Her throw is more like letting go of the ball in your general direction. She stares at you with a serious expression and you give the ball back to her. She does this again and again. If this pattern breaks and the ball wanders off, or she throws it but it doesn't quite get close to you, she takes responsibility to go and get the ball and re-initiate the exchange. She expects from me standard facial responses of joy or "uh-oh" if the ball goes off somewhere. If I do something wacky like a somersault or excited laugh at the wrong time, she does not respond. She merely stares at me surprised, looks away and then either focuses on getting the game started again, or gets dysregulated and moves on to something else. Sometimes she comes back to this game after this break and sometimes she doesn't. This innate ability to sustain back and forth interactions, taking responsibility for your own learning, using the parent/adult as your guide to new experiences and information, and ability to repair, this is still missing in K who is now 5.

That is autism. To me. To me this defines autism. Because every learning ability be it talking, asking questions, solving problems or whatever stems from these foundations. It may not define your autism, but it defines our autism. To me autism's learning disabilities DO NOT stem from an inability to speak, or inability to imitate or inability to sit down and so on. Those are all consequences or external manifestations of the deficit in those other foundational abilities that baby Poi already has and K never developed.

So does it make sense then to teach K to sit down, to speak and to roll a ball, without him realizing WHY he is doing all those things (except maybe to earn an iPad or some gummy bears?) NO.

So how do I teach and what do I teach?

I don't know honestly, I am still trying to figure that out. What I do know is that it is not happening at school. Because at school they don't know what autism is or what behavior is, or you could argue, what even typical development is and why it is the way it is. This level of mindlessness exist throughout the fabric of society, but I feel at such an early age, it is a dangerous place to send a child, especially a child with autism. I am willing to suffer abuse from other parents who will go so far as to accuse me of neglect or even cruelty by keeping K away from traditional school. Go on call the child services. Thank God for living in Canada, where we still reserve the right to homeschool without nanny-state like rules. For now.

Then there is also a level of compromise. We cannot wait until K is 22 and maybe then able to have the tools of learning in place to learn some things typically. Some things we HAVE to teach in the pathological way by behavior modification. Such as some aspects of self-care, some academic abilities (although there are people who argue never to make that compromise for academics) and so on.

K may not understand why he has to use the toilet, but we are not waiting for him to figure that out thank you! Similarly I have started to attempt to teach him how to read. It is not really going smoothly, but what does? I am doing this because I am aware of his high level of comprehension when he is being read something that interests him. (The latter part is key- interest). Therefore I felt teaching him to decode now might be good idea,I feel once he figures out what reading is and that he can do it, he will be more motivated to learn or even teach himself the rest.

However the tools of teaching are still missing - and its VERY HARD to find out how to teach him such that we don't compromise his interest in reading, and also teach him in a way that he learns. Right now these two goals seem at odds with each other. If I use ABA to teach him decoding, he will start to hate learning to read. Without this teaching tool, I have got nothing to rely on except repetition, his own natural development and hope. So right now I am using the second approach and if we make no progress, then we will default to mass trials and prompts. Yuck.

For those who logged on to see what curriculum I will be talking about, I will write about somethings we try right now. We could give them up next week or later because K is not ready or needs a break or they are no good. But here they are:

Reading
Headsprout Online reading
Home made flash cards
Games with magnetic letters, printing and stuff to reinforce whatever we do in our online reading

We only started this formal curriculum a month ago. We did lessons 1-3 and I felt K had not grasped blending two sounds together. So we are back to lesson 1. I am going to stick to this as our main method for now. It is natural, fun and really really slow at the moment. I don't want him to get the whiff of the fact that he is being taught something or it all goes to pot and I will have to start dealing with behaviors.

We also do writing, but I am going to lump this together with Reading. I have a curriculum I like but I don`t regularly use it yet. It is the houghton writing program. I like it because of it's precision teaching style.

Language
We are still plodding along with NET and Verbal Behavior. Every morning he has a few hours with a therapist who plays games, does simple crafty activities and works on his language skills and communication using these methods. That many hours has become possible thanks to government funding which began in July this year. Sometimes there is work with cards in the typical ABA way - where you give directives and expect responses and teach from most to least prompt. I am not a fan, but I see it as necessary to maintain some level of instructional control. We are under a lot of pressure from our local government agency to increase table programs and behavior protocols or they will kick us out of funding. That is another post for another time.

Math
I have no curriculum for Math yet. Math requires a lot of verbal instruction and there is not enough receptive language in K right now to understand. He is still struggling with correspondence counting. But in observing his play I see him grouping things, able to recognize number symbols and also count. I truly believe that I cannot teach K any math without instructional control and until he gets a firmer grasp over his self regulation. We can however work on Math concepts and we do that in other activities such as baking, setting the table, making pizza, outdoor play, building Lego and other structures is fantastic for math concepts such as give me all the green pieces, and so on.

I tried patterns and he is good with continuing ABAB patterns but unable to fill in the blank in the same patterns...so AB?B and he cannot fill in the A. He was getting frustrated, even with real 3D objects and we have given up this pursuit and are sticking to finding ways to do patterns in more natural settings like building.

In an ideal world I would love to get K's language ability and instructional control to the point that we can start the Direct Instruction curriculum for Math.

Schedule
Every morning (7 days a week) someone comes in for a few hours to work one on one with K on language goals. This involves games, VB table work, arts and crafts.

The rest of the day from 12 or 1 onwards he is with me. We work on RDI goals, we read ALOT and I am always looking for that new book that will spark K's interest in a new topic.

We hang out with our homeschooling families as much as we can in mosques, conservation areas, indoor playgrounds and so on. We try to have a schedule outside of therapy hours for our sanity and for consistency, but it is not always possible with young children and K's severe mood changes.

nature and active living

I put that as a separate 'subject' simply because we do so much of it! It is a major framework for us to practice our RDI skills. Walking trails, swimming, biking when weather permits are some things and I am always looking for the next new thing to do outside. We have always failed to use formal programs in this area for a long list of reasons I will discuss in another post.

In time I hope to introduce K to rock climbing and canoeing. I would love to give horse riding another go next year. It was a spectacular fail this year. It started so well and then we got in to a routine of screaming, crying and just plain refusal to have anything to do with the horse. The failure of this activity is still a huge surprise for me and I have not figured out what went wrong. Just shows that I have so much to learn about autism and my son.

Some other activities I would like to try are working with clay and carpentry. However for that I need to find more support for myself at home and more space. Here is hoping that one day we get to try all the things we want to try.

Homeschooling has taught me that I love spending time with my children. Autism is an every day challenge and I do carry around all the emotional baggage of any parent with a disabled child. But I cherish my role as his guide and teacher. We are both not particularly good at our roles, but I love learning together with my kids. And I think in the end that is what homeschooling is all about.

It would be nice to have some family around or at least a maid. But you do the best with what God gave ya!

In subsequent posts I will talk about obtaining support from community and other resources and socialisation.

Monday, 17 October 2011

Life after 6....(pm) and some helpful suggestions

The Jekyll and Hyde nature of the autism in our home makes things consistently unpredictable. At around 6 pm everyday, I am almost done figuring out the complexities of the pathology of control motivated behavior and want to assume a vegetative state in front of some kind of screen.

Since we threw out our TV almost a year ago, we have been forced to do such arduous things as thinking, reading books, listening to thought provoking YouTube lectures, and right now blogging, at this most trying hour of the evening. I have goosebumps just from the discomfort of having to put together a comprehensible sentence to express this train of thought.

Outside this room K is screaming his head off, because he got hurt supposedly and no one acknowledged this incident with the routine script he expected. Dad has decided to play this game by threatening to shut the door to K's room if he is not quiet. This is old and intervention could manifest itself in the form of breaking dishes and screaming, so the quiet of this room was a better option. Until of course, dad decides to bring the baby in here proclaiming how K's behavior is going to have a negative effect on her and she should not be exposed to this until she is at least four or five years old. This room might protect one from screaming tantrums and losing your cool, but apparently my fortitude is permeable to stupidity. So after a brief spat outside the fortress of fortitude, I am back in here, blogging, with the baby. Whose attention is satisfied with an array of USB sticks, for at least the next 30 seconds.

My initial idea for this post was to blog about purportedly helpful things people say to me, what I actually say in response, what I really want to say, how we can remove "purportedly" from the definition of these helpful suggestions (I mean who really uses that word anyway) and turn them in to real helpful suggestions. Something I thought of earlier in the day, when things were going down completely differently around here.

So in an attempt to make this post have some meaning, I will do that. Now. After I replace the USB sticks, which are no longer interesting, with a bag of (unused) urine sample bottles. (I don't know why we have them). They have bright orange lids and baby likes them.

Purportedly helpful suggestion #1

You should get out more, to take a break (for instance to extremely unstructured social environments requiring mastery in self regulation, collaboration, and instructional control such as library groups, pottery classes, after school drop-ins and so forth)

What I should say.

No actually, I should get out less. All such outings are physically and emotionally exhausting for me and K. They are also mostly (not always) counterproductive to building episodic memories of success and actually lay out a foundation of failure after failure for an already anxious kid very aware of his incompetence in such situations. Actually there are people who get paid anywhere between $20-35 per hour to take children with autism to such places, they call themselves behavior therapists. No one pays me. I have to pay taxes so that I can wait for 3 years to get paid to pay these therapists. I wish someone paid me, but I am expecting a big pay check in the Hereafter inshaAllah. Amen.
To get a real break, I should stay home give my kids a few things to stim with, while I sip a cup of coffee and text my sister.

What I actually say.

Yes/InshaAllah/We are always looking for a good program, can you recommend any?

Real helpful suggestion.

How about we come over to your home/the park/favourite fast food place, just me and my kids and hang out with K in a setting where he is already comfortable, keeping uncertainty and anxiety low. My kids can play with your unique, vast collection of awesome toys and K can slowly build some kind of relationship with other kids based on familiarity and memories of successful co-existence with peers on his terms, without being constantly "behavior controlled", learn to generalize personal boundaries and over time become accepted and not always shunned and ridiculed by kids his age.

Purportedly helpful suggestion #2

Lets everyone have a big potluck party, get a clown, craft table, and play lots of games. Lets invite the special kids also. Their behavior does not bother us, we are inclusive.

What I should say.

This is a great idea, for typical children. Cooking, then watching my kid kiss, hug, push and snatch things from other children is absolutely draining and useless for me. It may not bother you, but it is painful for us, we have to mentally prep ourselves, have little pep talks with ourselves, and plan every minute of the few hours we will be spending there. It is not relaxing or fun. Plus I can't cook for more than 5 people. We still do it though, because you have to pretend to be normal at least sometimes or no one will talk to us anymore.

What I actually say.

Yes, why not. Let me know what you would like me to make.

Real helpful suggestion

Lets get together at each others houses, just the two of us, maybe invite one other person to change things up once in a while and add variation. We can take turns making the food. This way K will get used to the same two or three kids in a setting he is already comfortable in (his home) and slowly become comfortable in a new setting (our home). We don't mind because we want to help him and really get to know him. Autism does not have to mean you are always socially awkward and isolated. Lets be consistent and do this regularly to really see a difference. There will be no circle time, craft table, clowns or "organized games".

Purportedly helpful suggestion #3

You should leave the kids with your husband and get out on your own once in a while.

What I should say.

No you should offer to watch my kids so my husband and I can get out once in a while. I don't mind doing the same for you.

What I actually say.

Yes that's a great idea.

Real helpful suggestion

Once every month or every other month you should drop the kids over to our place so you and your husband can get some time to yourselves.

I am sure there are more, but this post is getting stale. So if you know an autistic family in your community, try making these helpful suggestions to them if you are able, inshaAllah.