Setting up Your Home Based ABA Program From Scratch Part 2

A couple of months ago I did a post about setting up your home based ABA program. I focused on hiring people, which really is, in my opinion, the major difficulty in the process and also determines the quality of your program.

People read that and emailed me lots of questions. I will try to answer them here.

Salaries

I have been told by our therapists and also other new parents of the lack of regulation for therapist salaries in this field, in particular the Greater Toronto Area. Some sad and disturbing news was that there are some new graduates (within 6 months of experience) charging families $80/hr for therapy!!!

Three exclamation marks for greed and soul-lessness.

I will repeat some things again in this post. As a parent of a newly diagnosed child or one who is setting things up for the first time, you can become the target of greedy soul-less people very easily. Remember when you were looking for work, what did employers look for usually? Think like an employer.

I have not run this program for decades, it really has only been 3 years. So whatever rates I am going to post are current ones.

New graduate with minimal experience $15-$18 max.
Newbie with 2+ years experience $20 - $25 (usually the ones with a proper bachelors degree will charge the higher end).

Remember that just like in the real working world, some universities are BETTER than others. So don't pay everyone the same. Why should someone who graduated from some crummy, disreputable institution get more?

Experienced therapist with 5-10 years - $30+
This individual should know what they are doing, and be able to work with minimal supervision. They really should have worked hard to build on their qualifications. If after 10 years they are still working with a ECE diploma, then DO NOT pay them $30 per hour. I know girls who are decent and honest and do not charge this rate despite their experience because they do not have the qualifications. Look for such decent human beings.

Senior Therapist - 10+ years of experience and BOARD CERTIFIED. I would not work with a Sr Therapist who did not get supervised and certified by the Board. A minimum BCABA should be there. This is the only level of therapist who can charge 80-90.

These are rates that we have paid, that other families are currently paying good therapists.

If the government will not regulate rates in this profession, then we as employers have to do it ourselves. Please be informed. Share this information with others and do your research about universities and programs.

Is there a difference between George Brown graduate and a York Psychology graduate? Do your homework and bring it up in the interview so the person knows they are not dealing with some idiot. This is your hard earned money and your child's future. Autism is an expensive disability but it isn't some black hole where you just throw your money away.

How to get Financial Help

Many people have emailed me to ask me if they should take out loans to fund therapy. I am not a financial adviser. I can direct you however to organisations that do provide help:

President's Choice Charity - has a salary restriction of I think $60K (if you make more you don't qualify). Win their hearts with some photos or DVD of your kid. They give a one time sum of around $6000 dollars.

There is the governments Disability Tax Credit. It is not really enough to run a program, but you can start saving for your kid's future or use it to buy some materials. Everything helps.


Jennifer Ashleigh Children's Charity - for some reason their website is not working this week, but hopefully they will fix that. Keep checking.


Easter Seals Ontario - They fund camps and special equipment.

Special Services At Home - This is a government funding. Many parents I know have used it to run ABA private programs for years. Unfortunately in Toronto it is not available and you will not be refused but put on an indefinite waiting list for the rest of your life pretty much. Its not coming. I have heard families in Peel still get it. Move to Peel :D


Assistance for Children with Severe Disabilities - A government funding often used by parents for respite (parental relief qualifies as eligible). It is based on income and we never qualified so we never used it.

As for loans, that's a personal decision. I would not personally take out a loan to fund early intervention. Simply because there will eventually be middle intervention, adolescent intervention, adult intervention and so on. I mean how many loans will you take out? If I had to take out a loan, I would take one for my OWN education. So maybe one to fund RDI, which educates parents ALOT. Or take a Vincent Carbone workshop and so on. Then I could save myself from taking out loans by doing the work myself :D. But that's just my opinion.

Other Help

These organisations may not help with funding, but they do help sometimes find people that you can pay for, who are actually decent, and you can depend on their credentials and police checks etc. I know parents have used workers from these organisations for respite and camps.

Reach for the Rainbow - I have never used them, but I know a family who have used their support staff to send their son to various camps and are very pleased. They are not free, but can be subsidised.

Extend-A-Family - They have various local support groups run by parents and family members in church basements mostly. They are a lovely bunch of people who have lots of experience and advice to share. Community support is very important I believe in supporting a disabled individual through to adulthood. You need friends. They do workshops, friendship circles etc. In the summer they can pair your kid with a student to help him/her out at camp or some other community program. For free.

SmileCan - They also provide a small amount of financial assistance and organise integrative events, parent workshops that you and your child can attend. Volunteers assist the children at the events. The turnout is mainly Muslim, as they are run by a bunch of Muslim volunteers and students.


CAMD - The Canadian Association of Muslims with Disabilities. They also organise Eid parties, parent training workshops and other sporting events for the older group of Muslims with ID's. However they are a large organisation for ALL disabilities (including deaf and blind etc). I am a member so you might meet me at one of those events :D There is a bonus! lol!

Psychologists and Testing

People have also asked me if they need a psychologist and need ADOS or other testing for their kid to start an ABA program. Honestly, if you are short on cash and running a private program then I would say no. Its always nice to have a test and a baseline, but many psychologist know as much about autism and ABA as a butcher about neuroscience. You may need one to diagnose your kid privately. I mean they have all the checklists and tools that can be used to diagnose a person, if you cannot wait on long waiting lists to see developmental pediatricians (who are just as hopeless).

An excellent senior therapist is your best bet. Get a diagnosis and start working on a flexible and individual program.

I am not against testing, I just don't feel there are awesome tests to assess change in behavior. Isn't that more important?? This guy does a much better job of explaining this. My knowledge is limited and I cannot explain these things as well.

All I can say is, we have run a decent program for 3 years without these two things.

And I hope that answers more questions!!

Welcome to Guiltville You Will Be Here Indefinitely

Do parents ever stop feeling guilty?

We had family visit us this weekend and stay in our home. A rare occurrence, one that we are desperate for, being as isolated as we are, yet prepare for with dread because of our special autism issues. 

As lovely as it is to see smiling faces of family members, it is not so lovely to watch our autistic kid start bouncing of the walls, feeling incompetent and completely failing at initiating or sustaining any kind of interaction with the other little kids that would fall within the bounds of non-pathological. I don’t want to use the word normal because we rejected that word from the English language a while ago. It’s usage is banned and if you find me using it, please alert me to my slip up, and I shall immediately administer a suitable punishment to myself.

The guests departed Sunday morning and I did not realize the gravity of the dysregulation until I noticed my son asleep on the couch late Sunday afternoon.

Then to add to the chaos, the next day, my husband decided to take him for a haircut, to a new barber in a new place. Nice. K screamed “no hair” while picking up bunches of his curls from around him trying desperately to put them back on his head.

So I feel guilty today for not being able to scaffold the weekend adequately for my son. Perhaps scheduled activity breaks outside or better planning may have made things easier for him. Perhaps taking him to the same barber he is used to and has been going to for the last 3 years, and NOT using a trimmer (but plain scissors, that he is less nervous with) might have given us the opportunity to reinforce success and positive episodic memories associated with hair cutting.

I have been meaning to take him out to an indoor playground so he could let off some steam. My current pregnant state, and a one year old make it difficult to watch K all the time in public places now. You have to be on him literally. Last time he tried to “play” with a little girl, and dragged her down the inflatable slide with him despite her protests, so he could “crash” down together in a heap. Something I have noticed kids do on inflatable slides, but she was not interested and her mom was not pleased at all. We had to remove K from the play area for a while as he screamed and had a meltdown because he did not understand why he was being punished.

I need an extra set of eyes to watch my daughter in emergencies such as these, and so I have been putting off going. The result is we are home a lot and for the past three days all K has wanted to do is run in to walls, cupboard doors and fling things around the house.

He is refusing to use words to speak, and all we get to hear is an incessant whiny voice until around 10 or 11 pm when he has been crying himself to sleep.

And of course, yesterday I may have uttered some obscenity in the car when everything was out of control, and K has been repeating that particular phrase like a stuck record.

So it’s that time again when the guilt piles up and you feel a total fail of a parent for either not knowing how to connect with your child to ease whatever he is going through, or you know what to do but just cannot do it.

Looks like another day of jumping off shelves with a plastic bin on his head.  I feel truly bad for the guy downstairs. Have to make some effort to send him a present or some gesture of neighbourliness. More guilt.

What's On Our iPad

I have been asked by a few people if the iPad has "helped K communicate" or heard remarks along the lines of "I have heard the iPad helps treat autistic kids".

Usually these do not come from people who work with children with autism or parents of kids on the spectrum, but from those in the outside world. People want to believe autism is fixable and people with autism can have great outcomes and so on. People like be optimistic.

Sometimes this can be frustrating to those living with autism 24/7 because they feel their challenges are being trivialised or others just don't get how difficult it is for their kid to learn and function. The truth is that no one is going to spend hours upon hours reading about autism, learning about the various ways it expresses itself in individuals, the different interventions and treatments, the different behaviors and their functions and so on, unless they are directly affected by it i.e. unless it is their own kid. Even family members sometimes just want to hear the good report and want you to tell them the hopeful bits. These expectations from people to understand your situation or be truly sympathetic to it are often unrealistic in my opinion.

Anyway, no the iPad is not the next autism intervention. Like the chalk, the paper, the pen, token board or computer, it is just another tool you can use. It is portable, has a touch screen and pretty graphics and lots of "apps" that can be bought for a small price or downloaded for free. Some of them have some educational value, mostly it is another screen for entertainment.

We do not use our iPad except as a reinforcer for ABA therapy or in severely difficult situations (like the twice a year Eid prayers, or when we are forced to go to a new restaurant with some people and cannot turn them down. This second scenario almost never happens because we are socially handicapped :D)

But people want to know so here is the list of stuff on our iPad, right now.


Angry Birds - no need to explain.

Labrynth Lite - a maze game, where you have to guide a ball through a maze and not let it fall in to the holes along the way.

Cordy- little robot guy needs help navigating a strange grassy world. Very simple and easy controls.

Float - balloons falling on spikes, you have to use your finger to diver them away from their inevitable end.


KP Balloon - a hot air balloon kind of floats at increasing speed in the sky, avoid the dark clouds, winds and birds and bump in to the sun and rainbows.You just tilt the pad to control which way your balloon goes.

Talking Tom - annoying cat repeats everything you say in chipmunk voice.

Shape-O!'s ABC - drag shaped puzzle pieces to fi ta picture and spell the name of the object.

Dot to Dot numbers and letters - use your fingers to join the dots. Very popular with my son.

Fruit Ninja - addictive pointless game where you slice fruit but avoid slicing bombs that are flying around. Obviously my son has no concept of scoring and winning so he just really likes slicing the bombs.

My Play Home - my favourite app. A virtual home where every household item works, from the CD player to the shower. My son loves it and tries to live it in real life!

Bob Books - Probably the only educational thing we have on our iPad. If you haven't experienced them in real world life, then they are little books available at any bookstore with simple word families or sight words and give kids the confidence of having read a book on their own. The app has the same books. We don't use them much yet.

And that's it. Not the most exciting list, but there are a lot of websites that list iPad app by age, interest and function and you can google them.

I don't feel the iPad has any breakthroughs for us, except that it is a fancy toy that has kept my son interested enough to answer a few questions for it during table work. Its easy to give him some reinforcement with a few minutes on the iPad. It is quick, tangible and easy to control for the therapist. Two of my therapists have their own iPads and when they work with K, they use their own apps. Youtube app is popular because of short videos.

The fact is that it is small, easy to use and portable, which make it less distracting to have the kid get up from his chair and move to a computer or lug something bulky like a laptop around with you in times of need.

There are iPad apps with flashcards, PECS and other VB/ABA tools, but we don't use those.

If you can afford a cool toy like the iPad or have someone gift you one, then go ahead get it. As these people have made the brilliant discovery that "Autistic kids are fascinated by screen-based technology", so that's lovely that someone took the time and money to prove that blaringly obvious fact that can be applied to almost any subset of kids.

I will say however that if your kid struggles to use the computer, can't read yet, struggles to understand and play computer/video games, then the iPad offers some good ways to take a break, find reinforcement and build some confidence. For this reason it can become easily addictive and an easy escape tool, like any other screen technology. So be wary.

Salad Spinners and RDI

There has not been an RDI post or update on this blog for a while. (Compared to the numerous posts and videos we did when we first started a couple of years ago. I cannot believe it has been that long!). There are reasons for this. A recent email on the AutismRemediation mailing list (a mainly RDI mailing list) prompted me to write an update on the state of our RDI.

This blog and I have been through many changes over the years. We fluctuated on our biomedical protocols, our views on ABA therapy, Autism, Islam and just life in general. But this is an honest blog, honestly :D
Because such is life. Why should I pretend to cultishly stick to something, some school of thought, or some group, when I am still figuring things out in our journey through autism, parenting, Islam and life?

The only constant on this blog is our love for our son, and the desire to see him flourish. A quest for self improvement and most of all, learning.

First let me tell you about this cool salad spinner painting we did. Apparently painting with salad spinners is all the rage among homeschoolers. We do crafts with K lot. I particularly enjoy making/constructing stuff and painting. Gluing, cutting and glitter and all that frilly stuff, we leave for the therapists. I like big projects. And we don't post about all that.

But once in a while we will do something that is so simple, and provides such a great framework, with actual quality output that I am compelled to put it in a post.

That picture pretty much tells the story. You stick a paper plate in to the salad spinner. Some acrylic paint and spin to your hearts content. It was a hit with K, required no preparation or waiting for things to dry or stuff falling apart. And I mean, the salad spinner spins, like crazy. So enough said.

There are many ways to make this nicer and prettier, and you can google all those. The homeschool blogging community is abuzz with salad spinner art. I did not come up with this. 


RDI

It was a silent activity. I modelled the first two plates for K and "expected" him to join me and he does not need prompts or invitations for such things anymore, especially when you do something cool for the first time. By the third plate, I kind of just sat there and waited for him to regulate his body. He flopped around on the chair and the bean bag for a bit and then gathered himself to take charge. His movements are jerky and not very controlled. It is amazing for me to watch him.

3 years after his diagnosis, he is going to be 6 very soon. In many ways, physically he is still as clumsy as my little girl, who is 1. His "hyperactivity" is just a guise for severe physical dysregulation.

He is not a hyper kid by nature! No one would believe me if they met him. No. Instead what I have learnt about my son over the last few years is that he is a thinker. He is creative and has an amazing imagination. He actually LIKES to sit and color, but he cannot do it, physically. He likes to sit and look at books and try to read them. He is an easy going person. I feel if I peeled off the layers of physical chaos from him, he would emerge a calm, sweet, intellectual type who likes to read and write stories. Someone who would probably enjoy creating something with his hands or solve a complex problem, more than a physical activity. I don't know. I am just guessing.

Anyway, I got lots of great referencing during the salad spinning/painting. Even while he was spinning (which is really stimmy) I got some genuine joint attention and sharing without having to do anything to coerce it. It was fun.

There was shared anticipation when we lifted the lid each time to discover what new design the spinning had created.

He wanted to touch the paint and the patterns it left on the sides of the bowl and on the plate. I got to practise more emotion sharing.

So we still try to use simple frameworks and RDI principles in our interactions, when we can.

Where are we in our RDI?

We are actually at a roadblock in our RDI. Which brings me to the email I mentioned earlier. Someone on that list is always arguing about the ABA vs RDI debate. For us thankfully it was never an either or situation. This has to do with getting the correct guidance and training from the beginning from people who have done both for years with various children. We were so lucky. Something I have learnt over the last few years is to not be cultish about any one thing.

There is no one key, one therapy or one technique that will solve all your problems, regardless of the negative or positive impact of one or the other. You have to pick and choose and maybe even change whatever you do. We chose ABA and we changed it. Our ABA doesn't even look like ABA anymore. It is natural, flexible, flowing, creative and individually suited to K's particular challenges. It is just good teaching. Thanks to great therapists.

In our RDI, we have stopped seeing our consultant for a while. We are kind of at a standstill, where we have made progress but cannot move further. RDI is great in theory and I think they have really nailed the autism deficit and what to remediate and why. However the how is still very murky and that is expected because of the nature of the disability. Every kid comes with some splinter skills, some other deficits. There is no typical autism. A lot of great RDI techniques work for us, and we now truly appreciate that "Its a marathon not a sprint" phrase, because we are now at a point where we cannot speed up to any new RDI objectives. We have to go at a steady pace for a while. We did the Education (phase 1) and when we got to phase 2, our son's obstacles, or co-morbid conditions, or whatever you want to call them did not allow us to move any further.

I have concluded, for now, that due to K's physical dysregulation we may need to just constantly work on the same RDI objectives for years before we can move on to the next phase. Perhaps as he developmentally overcomes these hurdles we will be able to move on to more RDI objectives.


Where to from here?

So that is really the summary. The cultish people will come at you from all directions. ABA is the only research proven thing, nothing else works. ABA is cruel and mindless and will ruin your child's life. Floortime cured my kid. Put him in a hyperbaric oxygen chamber. Son Rise made my kid typical and now he has a girlfriend. I have been filling my own capsules to give my child the best biomedical treatments for years. We live on chicken soup. And so on and so forth.

You know, I am going to sound like a broken record, but keep an open mind. Slow down and apply wisdom to whatever you do with your children. Unfortunately knowledge and wisdom are not directly proportional, nor does the presence of one guarantees the other.  But rather the presence of both is required to make the right choices. We continue to make choices on a daily basis about how to best raise our kid. Sometimes we are wrong, and sometimes we get lucky.

I feel we have finally moved on from our hyper, panicked, post diagnosis phase and  are prepared to look at the bigger picture.

New Definition of Autism - DSM-5

Don't like the rise in Autism? The words "Autism Epidemic" scare you? Don't worry. These guys will change the definition for you, so that according to them “The proposed changes would put an end to the autism epidemic,”.

Read entire article here

Also from the article:

"The likelihood of being left out under the new definition depended on the original diagnosis: About a quarter of those identified with classic autism in 1993 would not be so identified under the proposed criteria; about three quarters of those with Asperger’s would not qualify; and 85 percent of those with P.D.D.-N.O.S. would not."

Look forward to a future where it is even harder to get services and justice for vulnerable individuals on the spectrum.

If this doesn't reek of denial and injustice, I don't know what does.

Reading Progress II

Reading is still going.

The online program we use has several companion books you can print off the Internet. K loves the characters and we colored in the first book we printed together. So now when I print a new book, he takes it to his room and takes out his color pencils and starts coloring them in.

Coloring is not K's strength as you can see.



Here he is reading those pages (with a plane landing sound at the end?)



He got a little agitated today because the particular pink he wanted just wasn't there. We have pink crayons, color pencils, various shades of pink markers and even wood less pink color "pencils", but I wasn't sure which pink he was upset about.

It's interesting to watch him try and search for whatever lost item he feels he must have. He rummaged through the craft shelf in his room and sat defeated in a corner with everything out in front of him, whining. When I walked in he whimpered a meek "Help". Oh the drama.



Today's lesson was teaching to blend the sounds "sh out s" to make "shouts" and that was just taking K to autopilot.

For some reason he has real trouble recalling sight words like "out". We don't practice enough. He needs a lot of maintenance work to reach mastery. I want to do some fluency exercises with him, with the words he has learnt, but not sure how to structure them. Any one got any ideas?

We need to make this thing a bit more formal, with a decent amount of practice in between lessons and some fluency.

I was trying not to take reading too seriously. My expectations put pressure on K and it comes out in his behavior or affects other completely unrelated things he does in his life. By the time you realize that something is happening because you were putting too much pressure in therapy/school or some other activity, you've already crossed the line.

Could be anything, like waking up at night, grinding teeth in sleep, extra dysregulated during the day, even on the days you are not doing anything together.

Its hard to find that balance.

Gems from Sisters Conference 2012 at Khalid Bin Walid Mosque

I was really fortunate to be back at the 2nd Annual sisters conference this year. Although I am not a long time member of this community, I am in love with the Muslim Community here in Toronto. And one of my favourite events of last year was the sisters conference at Khalid bin Walid mosque. I was eager to return to it this year.

I love hanging out at Khalid bin Walid mosque so much, you would think I go there just for the community and the food. After all, the crowd is 99.9% Somali. At this conference you will not find modern Hijabis, people whose Hijab comes off after prayer is over, and at least the times I have been there, I have not seen bad Akhlaaq (Islamic Manners) from anyone, All Praise to Allah.

The young ladies at this conference are serious about their faith, learning it and following it according to the correct teachings. You will find young girls sitting in the mosque after prayer is over, reciting Quran to their friends, practising their Tajweed or memorization. You don't see that in other mosques I have been to.

And of course you get that super sweet, gingery, free Somali tea.

This was my lunch. MashaAllah! (Gluten Free if I might add.)

And they were selling this frozen mango smoothie thingie, with strawberry at the bottom and cream on top! I think you have to be Somali to have this two days in a row, because I had one on the first day of the conference, and I skipped dinner.

You can go to the mosque website here to check out future events and regular talks and lectures. Please donate your time or money to support this awesome mosque.

I learnt many lessons and would love to share some of them. However through some of the stories and sentiments shared at the conference by the speakers, I came to another personal realisation which I would like to share only for the purpose of maybe helping someone rethink their challenges and difficulties in life through another perspective.

Sometimes we can have the completely wrong picture of our own righteousness and we need some reminders that encourage us to critically analyse our relationship with God. I often get caught in a web of negativity about my journey through youth, and present life. However when I view my life through another perspective, I realize that I have never, ever been tested with difficulty. How can this be?

Consider this. No one is perfect. I have many sins over the course of my life. Many of my sins Allah chose to cover for me, due to His mercy. Yet there are people who committed the same wrong and they were exposed and humiliated for the same sins. People forgave me, thought well of me, want good for me, sought to encourage and protect me. Not because I am an excellent person, but because that is the ease that Allah has provided me with in my affairs. So the hardship of being hated, shunned and demonised, never really happened despite actions that could have easily led to that end.

I have never been tested with poverty, debt (didn't even have to take a loan out for uni), hunger, war or ill health. That really automatically implies, that all my life has been a test of ease. 

However I am not too sure how I have been faring in this test, because feeling like you are going through hardship and feeling depressed and hopeless, despite having all this ease, has to be an expression of ingratitude at least. Which would mean I have not been doing well in my trials of ease at all.

During ease we need to maintain if not increase gratitude, charity, seeking forgiveness and remembrance of Allah.

Those are some things to reflect upon inshaAllah, for me, and for anyone who reads this.

Even in our difficulty with our son, we have experienced nothing but ease so far. My journey with my son is a testament of that fact.

It has been a very solemn reminder for me to stop thinking of my ease as hardship and continue to seek forgiveness.

I know I have promised many a "series" on this blog (Homeschooling Autism, Indoor playground review, and I am sure something else that has been forgotten!). I do intend to fulfil those as and when I get time.

I am going to try and do a series of short posts about gems from the "Glass Vessels" sisters conference at Khalid bin Walid Mosque 2012, Allah willing.