First Snow and Winter Observations

I know. Two outdoors-ey posts in succession. But what is one to do, when there is so much weather? K loves weather. His first few words were commenting on the weather. "Its cold", "its windy", "its sunny" and so on.

We are so fortunate to see the same scenery transforming through the seasons and K always shows us in his own way, that he notices all the changes too.

We had our first snow fall today. K wound his scarf round his neck early morning and had been wanting to get out. The snow didn't stay, but was still there when we were out.



I was glad K remembered a lot of his winter vocabulary like "its slippery", "footsteps" when he saw boot marks and "its ice" for the snow in the boot marks was a more icy color than the snow around it.

When I put some snow on his hand he declared "its in the water snow", which was a good observation because the snow quickly turned to water on his hand. He also stood still in a field for the longest time making different sounds to watch his breath!

Here is a video of him doing that. I am against feeding him words or asking him questions, but I get just as excited when I see snow or see him notice and take interest in his environment, so its hard to shut up.



There were many other things to notice, such as the water in our creek suddenly over flowing and muddy, when just a few weeks ago we were down there walking in the creek and throwing rocks around.



The kind of learning that happens in these situations cannot be taught with flash cards, at a table or even reading in a book. I find it hard to figure out how else to teach a child with autism and intellectual disability about concepts like "balancing" until I put him in a tree or on a balance beam. How else do we teach K that snow is actually water, that the stuff coming out of your mouth and nose is breath, what slippery means and feels like?

I find that he needs quiet around him and for someone to just let him experience things and then put words or a concept around that experience in order to learn. Later we can build on that concept developmentally in books, stories and hopefully one day conversation, reading and science as he matures.

Can we really accomplish that in a class room setting or in a group? Not with K's autistic deficits. He may enjoy the stimulation of lots of kids and people driving him in to a state of frenzied physical dysregulation to the point that it takes him days to return to "normal" calm and focus. But he cannot learn in such an environment like his typical peers.

Snow will make even dead bits of wood and leaves look pretty.

Climbing Trees

Blog readers probably have seen our love of nature, especially perching ourselves on trees, expressed in various posts over the years.

K was whining a lot in the park yesterday about it being cold, and kept asking to go to the beach. Although it was 9 degrees Celsius yesterday, I figured that's still warmer than -9 degrees Celsius, but still not warm enough to go to the beach! How to explain weather, freezing cold water and all that to an autistic five year old with limited verbal ability?

When I had enough of his whining, I found a tree and put him in it. Because that is what a fed up parent does sometimes.



He likes climbing trees, but he was scared of this one and he was therefore informed that unless he stopped his whining, he was not going to be brought down.

It stopped the whining, but once he was down, he kept asking to go back up!

So we found easier trees for me to perch him in.

Here he is in his third tree and you can see the mix of fear and slowly building confidence. I love catching moments like this on video so I can watch them over and over again, and we can watch and "comment" together. That is one cool episodic memory we built there. I am very pleased.



Oh the little script about hand dryers in the end. K has always had a fear/love relationship with hand dryers. These days all public places are replacing slower hand dryers with those super fast ones that dry your hands in less than a second or something and he is absolutely terrified of those. However sometimes he musters to courage to do it. Scripting "You did the hand dryer" is I suppose his way of congratulating himself for conquering the tree. (Who would know that but a parent?! Another case for never sending your kid to school.)

He was all smiles from here on and even attempted one all on his own. I like how he chose one he could get in and out by himself.



We found a squirrel trying to copy us.



We also found this baby.



She wouldn't stop following us.



But we later discovered she was just after our pancakes. So we decided to keep her.

As for the beach, not only am I a supporter of experiential learning, it is often my only teaching option. So next week I might just take him to the freezing beach and that should hopefully stop him asking me to go there for the rest of this winter.

The Future of Food

I saw this documentary on this website: The Future of Food

I urge anyone who cares about their food and what goes in to their bodies to watch this video.

We believe that eating and drinking, as Muslims, is a command from God Almighty. Shouldn't Muslims think about how they are fulfilling this command? Is our intention to fulfil this command only driven by our stomachs, palates and our desires?

This documentary infuriates me and makes me feel helpless.

Eating organic whole foods is one way to fulfil your need to eat and do it with what I consider Ihsaan (roughly translated as the best manner, or a beautiful manner).

I have already lost a son to an intellectual disability. The prophet Mohammed peace and blessings be upon him said in a hadeeth that the stomach is the home of all diseases and prevention is the best cure.

Allah knows best.

Gluten Free Halaal Deli?

Yes you better believe it. Zabiha, Halaal and Gluten Free (and in pretty zip lock bags).



Thank God for living in Ontario, Canada. Actually even Ontario is going too far. More like the Greater Toronto Area. I doubt anywhere in the Western world would we have as many options for Halaal food. I know because I have lived so many places.

Thank you Muslim community of Canada. You are well informed, educated, peaceful, vibrant and so diverse. I am so grateful to be here.

We also boast an excellent homeschooling group, that is well connected and super well organized. Go their annual conference this weekend and discover Muslims doing amazing things MashaAllah.

Qawlan Sadida and Email

People with a "qawlan sadida" problem should stop using email. Seriously.

"Qawlan Sadida" or قَوْلاً سَدِيداً is a term used in the Quran to describe a type of speech. It literally means, to say that which hits the mark. So speech that is to the point, straight forward, fair and clear without any hidden meanings or insinuations.

My terseness, which in person is usually softened by other components of speech and body language, just doesn't work in emails.

I need to start using emoticons or perhaps lots of those little abbreviations like lol and @TEOFD and ^5 and <3 and so on.

Proper punctuation and breaking things in to paragraphs also gives too much of a formal, "thought out" look to an email. Might give the impression that I am too serious and might be easily offended. I need to switch to lots of trailing ................ ....... errrm's .... maybe a few !!!!! lol ^5^5 (thats a high five by the way) and ,,,,,,,,,,,,,,. a few capital letter errors. Just.....makes it less....terse....don't you think???

Who am I kidding? I will die before I send out an email like that.

Come to the Toronto Muslim Homeschoolers Conference

Very excited about this event.

To buy tickets go to Toronto Muslim Homeschoolers.

Setting up Your Home Based ABA Program From Scratch

After my long whine about running a home program, I thought it might actually have been better if I had posted about how to start one and other helpful tips for parents new to all this.

Mind you, we are also new, because we have only been doing this for almost three years now. There are parents who are now in their 5th or even 9th year of home based ABA programs.

There is a great website that does a much better job of this, you can skip this post entirely and go there. I am going to however post my personal experience.

A self-funded program (i.e. one without government assistance).

Find a Senior Therapist.

This is the backbone of your program. They should be Board Certified. BCaBA (or Board Certified Assistant Behavior Analyst) is one level below a fully certified BCBA. The difference is just in the hours of supervision they received. Honestly it doesn't matter that much in my opinion. You can find out more about this certification here.

There are many many bad Senior Therapists circulating in the GTA. I have seen some horror stories, and horrible programs. How will you be able to find the right person?

References are not enough. Anyone can get a good reference. When checking up on a Senior Therapist go through some of their existing client's programs. See a session in progress. Invite them over and watch them interacting with your child. Demand these things. At a rate of $80 per hour (and rising in this market) its the least they can do.

ABA has moved on since the Lovaas days. Find out how many verbal behavior programs your therapist has done. Has she attended any workshops? Who supervised and trained her?

It is easy to make a fake resume. For that much money, people are doing it, and they are ruining the lives of children.

Word of mouth is the best way to find a good Sr Therapist. Advertise on the various yahoo groups like AutismOntario or abatherapyontario. ( go to groups.yahoo.com and enter these group names in the search field). You can also go through the Abacus List website and call the ones who have written down supervisor next to their name.

I stayed away from centers because to me it was a black hole. Once I drop my kid at the door I don't know what is going on in there.

I have had therapists working for me who have told me that centres they worked for would make them work with groups of kids and lie to parents that the child got 1 to 1 therapy.

I know a few senior therapists and some centres that everyone in the GTA should run far away from. Email me, and if I trust you, I will tell you who they are :D

Finding other staff (i.e. instructor therapists)

In a home program turnover can be high. Be prepared for disappointments, liars and strange people selling you their wares. Since I never hired anyone in my life, I think all this was weirder for me.

I have had people come to see me, show me some hand drawn colored graph of how the kids they worked with progressed.

Use your instincts.

The same job boards work for finding therapists. Network, speak to other parents. I also posted a lot of adverts on university job boards in the hopes of finding students/alumni.

York, Ryerson and UofT have free job boards you can post on. I am sure there are others like George Brown, who are churning out therapists like they were running a factory. Try them. I never got anyone off these, but I have heard of other parents having success in that area. Its free and worth trying. You can even call the student career office and ask if they can circulate your posting to the newly graduated students or print and post it somewhere. The Ryerson lady did this for me.

Most Senior therapists have a network of Instructor therapists they are used to working with in other homes with other clients. If you are lucky enough to fit in to their schedule that is the best option as you will be spending less money training them.

Attitude and work experience

Although this involves hiring, references, paychecks and watching for cheats, this is not a business. This is a human job, working with a very vulnerable person, with stressed out families with often limited resources. Look for the right attitude in your therapist. Look for a human being, who is interested in learning. Someone with an open mind who doesn't think they have all the answers or a formula.

Look for someone who walks in, shuts up, listens to you and is paying attention to your child,SILENTLY. Not someone who thinks they are so good, that they know exactly how to interact with an autistic person they met for the first time. Look for someone who is observing your child and you, rather than making a lot of noise.

If you know anything about autism, you will know that no one knows anything really.

Someone with varied background (and not just autism or behavior therapy) is better. Look for someone who has actually spent time with a TYPICAL child. Maybe a past ECE teacher or someone who also worked with troubled teens or disabled adults and so on. These people come with a wider perspective and not just a narrow view of behavior.

Most of all look for someone who is interested in your child (and hence their career/job) and not just certifications, accomplishments and money. There is money in this job, but you cannot put a price on compassion, creativity, humanity and sincerity.

I often don't even bother replying to emails where they only ask me "what days and how many hours you looking for?".

Only bother with the people who call you or ask you about your CHILD. "Could you tell me a little about your son/daughter?" is usually a keeper.

This is a tough job. How many people do you know who work for a living and hate their jobs? Pretty much everyone. Find the one who loves their job.

These therapists are expensive, but trust me they are worth every penny when you see them bringing in their own toys, crafts, ideas. When you see them coming up with their own solutions to YOUR problems. When they take the time to search for community programs or things for your child to do. When they attend workshops, read books, share stories and take responsibility.

The going rate for a therapists in Toronto is $20-$25 per hour. A brand new girl can cost up to $15-18, but good luck finding one who thinks she is brand new enough to charge that. Most of them think they already know everything about autism the moment they graduate.

Its tough, keep looking.

The Program

Most regional programs want you to use the ABLLS for ABA. A more modern and developmental tool is the VB-MAP. At the end of the day, they are all just tools, and a good teacher uses many tools to teach. She finds the one that works for the child. She is not a slave to a method or technique, rather she has many methods at her disposal and is willing to try something else when one thing is clearly failing.

We use many tools. VB-MAP, Denver Model, RDI, Fluency and Precision Teaching and so on.

The program is based on individual needs. The days of mass trials and mountains of data are gone. Stay away from this method. There are more human ways to do ABA and teach autistic children. Find out what they are, and find people who know them.

Educate yourself constantly and keep an open mind. Don't get stuck in the corner of "Whatever we are doing is right". There is no known cure or treatment. There are some that have been studied scientifically and have produced some results, but your child wasn't part of that study, so keep an open mind.

Hopefully this has been helpful to someone out there.

Materials

My Senior therapist purchased her own binder, and other stuff. She brings in her own flash cards, although I have a large collection myself that we sometimes use.

I have an enormous collection of toys and educational material. The Dollar Store, Kijiji.ca and Craigstlist.ca are great for purchasing cheap or used items. It really depends on your kid and what his/her interests are. However no home program would be complete without Mr Potato Head, surely :D

Most of my therapists have their own collection and bring things in time to time. One of them makes her own toys!

Video taping therapists and sending this to the Senior Therapist for feedback has been our single most effective training tool. Use it.

Hours

Do not get fixated on hours. Most people will do what they can afford. If you have loads of money, usually more is not necessarily better. I don't believe in the 40 hours a week torture of mass trial ABA. Children (even autistic ones) learn in many ways and need time to consolidate learning. You cannot teach swimming and making a salad using mass trials using M&M's or tokens for reinforcers, but these are fun things to do and learn and can be taught using behavior management techniques that are more natural and flexible.

In the real world, the reinforcer for making a salad is the salad. Think about that for a second. Think about what you are actually teaching a child by repeatedly asking him to get you the cup, and then giving him an M&M or thomas tank engine token when he gets the cup. If it looks stupid to you, it usually is.

I will post more about Funded Programs and their jargon later.

Government funded home based therapy - a blessing and a massive challenge

Every homeschooling mother has her challenges. The more your kids' abilities increase and diversify, the more you take on to keep them challenged and learning.

One of my challenges as a homeschooler or just a human being, has been delegation of tasks. Inability to delegate usually results due to a lack of trust in people available for delegation. Perhaps you are aware of their expertise and abilities, but do not trust them with your task, even though you know that you are unable to do it yourself. This is harder when it comes to major responsibilities like children.

I am more than happy to delegate cooking, cleaning and laundry. Although I cannot afford to delegate those at the moment.

Part of running a home program requires trust in your child's therapists. Most of the work they do, I don't. So rarely does anyone cross in to the realm of activities I do with K. However since we got funding for our home therapy program we have had to meet the government's requirement for what they have standardized as home-based therapy for autism.

Although we are fortunate that we have a team of flexible, open minded people, these requirements still sometimes become an obstacle to streamlining homeschooling, life and therapy.

To meet the hours per week requirement for instance, I have had to hire more people. Ideally I would have liked to increase the hours of the existing therapists and schedule it around K's needs, but this has not been possible.

Therapists work independently for various clients and ours have busy, full schedules. They cannot just make room for you where you would like. Inevitably if you want someone for a particular time, you have to find a new person to fit the team. They have to be the right fit for your program, time and requirement. (An impossible combination in itself).

For some reason, I cannot seem to pull this off. For this reason I have to do sessions on weekend mornings because someone can only be available on a weekend. This gets in the way of my life with my family because I do not want anyone coming in on a weekend. I have to do a session at 3-5 pm one day and then 6 - 7:30 pm on another day.

Either I am unlucky and incompetent or the entire framework for funding home programs is flawed. Wouldn't it be great if we could save the money we waste on these garbage hours on weekend mornings and evenings, just keep our regular morning weekday hours going and then make the funding last LONGER for more YEARS and really use it the way it suits the disabled person and their family?

Why must I compromise by either sending him to school, a pointless childcare or after-school program or have him cooped in the house for more hours just to meet government requirements?

I want him to have a normal homeschooled life and be able to go to arts or sports in his afternoon hours. Finding such a program that will accommodate him and also be effective has been impossible to do. Every place is either overcrowded or teaching the same old anti-autism structure of circle time, story or group craft. Group instruction, over-stimulating environments, ignorant staff are the many walls that we hit whenever we try community things. Its fortunate that K actually enjoys a few things in his life, like swimming.

So last night when I had to leave my baby at home, to drive my son to a local pool to meet his new therapist there for the only public swim time available in the afternoon in our area at 6 pm, I wondered why does it have to be this way?

K is awake 5:45 am every morning (and so do I). Around 6 pm I would rather be giving him dinner and winding down with some books or quiet time with something else, in my warm and comfortable living room. Delegating swimming, an activity K and I enjoy together, has been difficult for me. Is he going to enjoy himself? Will he continue to learn? Will the new regular people in this new community pool be accepting of his strangeness? Am I doing him an injustice by taking his tired little body swimming at this hour? His emotional, social and physical well being consumes me to the point of ulcers.

I couldn't even bring myself to sit and watch them swimming from the viewing area. I spent the hour in my car trying to fight thoughts of baby falling off the bed, or spilling hot liquids on herself becoming scarred for life, or being run over at the traffic signal, due to the negligence of her caregiver (as my paranoid imagination would like to believe is the case).

I am really tired.

As he emerged from the changing areas looking content, I figured its not the end of the world. At least there are places here he can go to with someone competent and responsible. At least my ulcers will not be as a result of something worse like no therapy, or no funding, for now anyway.

He fell asleep on the way home, still smelling of chlorine and I was met at the door with a happy, fed, excited baby (who stayed awake for a few more hours!).

It is what it is.

We have to make it work the best we can, with whatever options we have available. It is not ideal, but at least we have something going for the next year or so. Who knows what will come next in our therapy/autism/homeschooling saga. Allah makes easy what He wills and no one change that and whatever He makes difficult no one can make easy.

Are you motivated by failure?

K likes to get in the way of closing elevator doors, revolving doors, kids coming down slides, or swinging on swings, and then quickly gets out of the way just before they hit him.

I guess he likes the adrenaline rush or thrill of it, and it makes things difficult in these places for us.

Yesterday however he tried to do that on the road with traffic.

A few seconds of fixing the baby's hat and from the corner of my eye I saw him standing in the road. It was not a main road, and cars were very far that I had enough time to run and get him.

It has been difficult getting around with baby and stroller, and K always on his own agenda where ever we go, but this one takes the cake, or at least my sanity.

As adamant as I am about getting out despite baby, weather or social challenges, even I need some time to get over this little incident before I step out the door with K again.

Although he is the same, and he will always be him, I have found myself increasingly frustrated with having to manage him everywhere.

In the pools, changing rooms, mosques, gatherings, outings, super markets, and so on. It is almost as if life is changing and I need K to change and keep up, and he is, God bless him, but he will never be able to match the rate of change of his peers, his family, his siblings.

Only the family with autism knows the challenges of these little things, which no one outside our world can truly comprehend. Where others will take on more challenging situations and activities, motivated by their children's progress and desire to do things. We will do it despite lack of progress and our child's lack of desire to do things.

We are sleep deprived, tired, under-resourced, isolated, thick skinned, determined.

We are insane and motivated by failure.

No more funding available in BC

Well there goes our escape plan to BC after our funding here ends.

Government shortchanging vulnerable people again.

Also seems like anyone advocating for redirecting budgets to meet these dire needs will be promptly removed from office.

The year of seasons

I know there have been a lot of photos on this blog lately, but what to do, I never fail to find something to photograph in the fall.

We had the longest, nicest summer, and now the fall seems to be going on and on. I wish winter brings a lot of snow, so we can slide down hills in our toboggans!

Eid

Today was Eid-ul-Adha or Eid of Sacrifice in North America and most of the world. The countdown to Eid was filled with reminders of the sacrifices that prophet Abraham and his family made for the sake of Allah and His message. Peace and blessings be upon them.

We had a great day. K was patient and calm at the mosque, and I had a little help from our friend the iPad during the sermon.

Eid Mubarak everyone!

Canada continues to ignore the needs of individuals with autism

Here is a nice dose of truth of our every day reality.

Last night I came across someone, in my community, whose family had broken up due to the stresses of raising an autistic child on top of all the other things that normal, middle class to lower middle class people, not blessed with unlimited resources, face every day.

Please watch this important documentary and continue to support the effort of these brave families.

I will tell you now, that after all these decades of advocacy for correct autism treatments, it was only by chance that three years ago, upon diagnosis, we heard of ABA as a treatment for autism by our forward thinking paediatrician. So many families I meet still have not been recommended this by their health care professionals. They are given no advice nor any direction. Instead they are often already entangled in a web of deceit before they even realize what it is that will actually benefit them. We were lucky that we met the right people at the right time, who exposed for us the hoops we would have to jump through in order to get the minimal help for our son.

Now that we are getting that help finally after years of waiting, we are always under pressure to deliver and perform up to certain standards otherwise that funding will be taken away. I am under more stress after getting government funding, finding ways to play all the little bureaucratic games, still jumping through hoops, and juggling a normal family life, waiting for the day this funding will inevitably be removed from the equation leaving us with no options whatsoever.

Unbelievably our contract states that government funded ABA only benefits children for one or two years! This is the level of hypocrisy and red tape that the government uses to protect it's interests and ignore the needs of families with autism.

How would you feel if you were told, that your child would only benefit from one to two years of school?


Medicare's Orphans. from MedicareForAutismNow on Vimeo.

Today is a gift