Was listening to CBC today. Someone from government was justifying the new budget. She was being asked some hard questions and was doing very well at deflecting each one.
When the question of mental health came up she managed to completely avoid it. It seems government is allergic to the issue of mental health. I say this because every time the issue comes up their lips swell and they are unable to speak (or at least say anything meaningful.
It is laughable when I hear politicians say that they "are taking the issue seriously" or even more entertaining is "we are putting funds into setting up a research facility." Hello? How about putting some real money into the hands of care givers and then helping to setup some real standards that ensure quality of care?
I never had any faith in this "represented" democracy system we have but now I think it is simply absurd. It is about time parents took responsibility for their votes.
We get the government we deserve.
Do we deserve to sell our homes to pay for our children's care?
Do we deserve to fear our own deaths only because we know then our children we be sent to a terrible home where they will live a life of hell (or on the street)?
Do we deserve to have to hire sub standard consultants because there are no standards?
You tell me. I have one question for our elected representative and it will be:
"Will you lobby to have Autism (mental health in general for that matter) part of Medicare just like cancer patients?" The answer is yes, or no. Nothing else.
Wednesday, February 20, 2008
Thursday, February 14, 2008
Trying to do what's best
I was reading some interesting opinions today from parents with diagnosed children. Two points were as follows:
1. Non Lovaas treatments gaining popularity.
2. Making the choice that suits you.
3. The government enjoys our disorganization.
The parents were saying that there were some non Lovaas therapies gaining popularity and that we should discuss these. The response was, why? I thought this was a great response. Don't waste my time or money on wish therapy. Give me what has been scientifically proven and simply shut up if it's not. Simple as that. If it has a scientific study then publish it and you won't have to worry about the punters, they will come to you.
As for making a choice that suits you, I have discovered that this also is nonsense. If I decide I like floor therapy best and force my child to participate in that what am I doing? I am doing what "I" think is best. Is this right? No, it's not. Parents need to grow up and realize that this is not about them. It is about their kids and their kids deserve a therapy that has been proven effective.
Since I know people in government I know what they think. They delight in the fact that we are a bunch of opinionated and disorganized individuals. Imagine if we had a centralized body that took 2% of the voting mass? We could have anything we wanted. But instead everyone figures they know best and no one agrees. They say we get the government we deserve and I have never seen that to be so true.
If we want more money for therapy then we have to agree on a few basics. Perhaps agreeing on having Healthcare cover the cost would be a start?
The biggest lesson I have discovered is that this is not about you or me. This is about our kids. Hard concept to act on and remember but essential if you really want to help them (instead of making yourself feel better).
1. Non Lovaas treatments gaining popularity.
2. Making the choice that suits you.
3. The government enjoys our disorganization.
The parents were saying that there were some non Lovaas therapies gaining popularity and that we should discuss these. The response was, why? I thought this was a great response. Don't waste my time or money on wish therapy. Give me what has been scientifically proven and simply shut up if it's not. Simple as that. If it has a scientific study then publish it and you won't have to worry about the punters, they will come to you.
As for making a choice that suits you, I have discovered that this also is nonsense. If I decide I like floor therapy best and force my child to participate in that what am I doing? I am doing what "I" think is best. Is this right? No, it's not. Parents need to grow up and realize that this is not about them. It is about their kids and their kids deserve a therapy that has been proven effective.
Since I know people in government I know what they think. They delight in the fact that we are a bunch of opinionated and disorganized individuals. Imagine if we had a centralized body that took 2% of the voting mass? We could have anything we wanted. But instead everyone figures they know best and no one agrees. They say we get the government we deserve and I have never seen that to be so true.
If we want more money for therapy then we have to agree on a few basics. Perhaps agreeing on having Healthcare cover the cost would be a start?
The biggest lesson I have discovered is that this is not about you or me. This is about our kids. Hard concept to act on and remember but essential if you really want to help them (instead of making yourself feel better).
Thursday, February 7, 2008
Choosing a Consultant
Once you have spoken to as many parents as possible and reviewed the FEAT BC and ACT BC websites it will be time to select a consultant.
I highly recommend you find out who the best ones are and get on their wait lists. You may not get the best therapist right away but at least then it is an option down the road. Then look at ones that are good but do not have a wait list. Look for experience and professionalism. Ask for references and call each one. Ask about progress. Has there been good improvements? Were goals set and achieved? Was the consultant active and constantly changing the programs to be up to date and better? All good things to see. If any of the references are bad or don't give a shining review, move on.
Also, ask for the consultants program information and training materials. They don't have to leave it with you but at least review it during the meeting. It should look readable and professional. If it looks like a grade four student put it together, run away. Your consultant is running a business designed to prepare your child for a world that is going to be very demanding. if your consultant is not organized and professional you will be wasting your money. While this industry may be full of snake oil salesmen and unprofessionals who think a course in ABA is good enough, we have to not accept sub standard services. Don't throw your money away like I did on my first consultant. I only with I listened to others who warned me.
Some consultants offer a monthly package. This often works out well financially especially at the beginning. Others will offer a half price fee on travel. Be careful of common tricks like saying half price for travel but then billing you for double the time. Works out the same...
Also, be VERY careful about consultants who either tell you to buy supplies from them (through their website even) or offer to pick up supplies for you. This is an extremely expensive shopping trip as they are really just trying to put the hours in or sell you marked up toys. Always do it your self or worse care have one of your line therapists do it.
If your consultant bills you for something you did not ask for tell them. Then tell them you will not pay for any additional service that is not previously agreed to. Also, have your consultant sign in and out each time. While it is common for line therapists to do this some consultants think the honor system is good enough for them. Why risk it when they are about 10 times the cost at least?
Hire a consultant who you feel you can have a good working relationship with. You should feel comfortable asking questions. The consultant should not charge for the occasional email either. Anything less than 15 minutes should be free.
I just hired a new one and I am amazed at how much better this one is. The only professional paperwork my last one produced was the bill.
I highly recommend you find out who the best ones are and get on their wait lists. You may not get the best therapist right away but at least then it is an option down the road. Then look at ones that are good but do not have a wait list. Look for experience and professionalism. Ask for references and call each one. Ask about progress. Has there been good improvements? Were goals set and achieved? Was the consultant active and constantly changing the programs to be up to date and better? All good things to see. If any of the references are bad or don't give a shining review, move on.
Also, ask for the consultants program information and training materials. They don't have to leave it with you but at least review it during the meeting. It should look readable and professional. If it looks like a grade four student put it together, run away. Your consultant is running a business designed to prepare your child for a world that is going to be very demanding. if your consultant is not organized and professional you will be wasting your money. While this industry may be full of snake oil salesmen and unprofessionals who think a course in ABA is good enough, we have to not accept sub standard services. Don't throw your money away like I did on my first consultant. I only with I listened to others who warned me.
Some consultants offer a monthly package. This often works out well financially especially at the beginning. Others will offer a half price fee on travel. Be careful of common tricks like saying half price for travel but then billing you for double the time. Works out the same...
Also, be VERY careful about consultants who either tell you to buy supplies from them (through their website even) or offer to pick up supplies for you. This is an extremely expensive shopping trip as they are really just trying to put the hours in or sell you marked up toys. Always do it your self or worse care have one of your line therapists do it.
If your consultant bills you for something you did not ask for tell them. Then tell them you will not pay for any additional service that is not previously agreed to. Also, have your consultant sign in and out each time. While it is common for line therapists to do this some consultants think the honor system is good enough for them. Why risk it when they are about 10 times the cost at least?
Hire a consultant who you feel you can have a good working relationship with. You should feel comfortable asking questions. The consultant should not charge for the occasional email either. Anything less than 15 minutes should be free.
I just hired a new one and I am amazed at how much better this one is. The only professional paperwork my last one produced was the bill.
Sunday, February 3, 2008
Choosing a Therapy
Once you get your diagnosis it is natural to ask people the famous question, "now what?"
This questions is expected and easily deflected so as to not have the answerer be responsible in any way. The answer that is as famous as the question is simply, "...it is really up to you." Followed by the blank stare.
At least this is what I got at a government level. Parents immediately told me to go to the FEAT website and find an ABA consultant (or to at least get on their wait lists). I was quickly told about all the different snake oil sales men out there that would be delighted to take my government supplied 20K for a few promises. Heck there are even a few ABA consultants out there who will do that!
After interviewing a dozen ABA consultants I settled on one that seemed to know what she was talking about and did not charge $200/hour. I later found out that some of the consultants I interviewed had no clients and were not really qualified. Others were like MacDonalds and were taking families as fast as they could so they could then hire trainees and setup franchises. These trainees of course were not qualified. Run if your consultant has more than 20 families.
I went for the scientifically proven Lovaas style ABA with some Verbal Behavioral integration and a consultant that was fairly well known. She works for another consultant who is board certified and has her Masters Degree (not that this means much).
I hired 5 line therapists. One took the training and then promptly quit (a sad fact but many parents with diagnosed kids will sign up to be a therapist just to get training). Another hated my therapist as she is super disorganized and inconsistent right now so he had a bad attitude and we let him go. Another got tied up with school and left. Leaving me with two... So much for my big team. I made one of the remaining two a lead so she is helping organize.
Looking at hiring more therapists although these are hard to find. The key is to finding a good one is not experience but love for children. You can teach techniques but you can't teach love (well maybe you can but I have not had luck with that).
Also considering another consultant. My consultant does not seem that good. She bills me for 1 hour of travel time even though she lives half an hour away. Everyone on my team has complained about her not being professional or consistent too. While my son is getting better and speaking more words I don't think this is to do with her programs as much as it is spending time with people one on one. This seems to be the biggest help. Whatever you do ensure your child gets one on one attention. Nothing else compares.
Right now we are doing about 10 to 15 hours a week plus preschool twice a week in the morning. Not much but a start. We plan to get close to 40 hours a week in about 6 months.
We are not doing any special diet. He still drinks formula out of the bottle and likes ice cream and yogurt. Although he often throws up when eating ice cream or yogurt. He throws up at least once a day right now. Makes it very frustrating for my wife.
His muscle and coordination seem okay but I also spend a lot of time ruff housing with him which he really enjoys. Kids on the spectrum are apparently more at risk to have bone mass deficiencies etc.
I'm really narrowing my scope of therapy to that which is scientifically proven. I don't have a lot of money so throwing it at things that promise benefits does not seem wise. I only pay for things that have been proven to show results. Heck, I hardly have enough for that so this seems like a no brainer...
This questions is expected and easily deflected so as to not have the answerer be responsible in any way. The answer that is as famous as the question is simply, "...it is really up to you." Followed by the blank stare.
At least this is what I got at a government level. Parents immediately told me to go to the FEAT website and find an ABA consultant (or to at least get on their wait lists). I was quickly told about all the different snake oil sales men out there that would be delighted to take my government supplied 20K for a few promises. Heck there are even a few ABA consultants out there who will do that!
After interviewing a dozen ABA consultants I settled on one that seemed to know what she was talking about and did not charge $200/hour. I later found out that some of the consultants I interviewed had no clients and were not really qualified. Others were like MacDonalds and were taking families as fast as they could so they could then hire trainees and setup franchises. These trainees of course were not qualified. Run if your consultant has more than 20 families.
I went for the scientifically proven Lovaas style ABA with some Verbal Behavioral integration and a consultant that was fairly well known. She works for another consultant who is board certified and has her Masters Degree (not that this means much).
I hired 5 line therapists. One took the training and then promptly quit (a sad fact but many parents with diagnosed kids will sign up to be a therapist just to get training). Another hated my therapist as she is super disorganized and inconsistent right now so he had a bad attitude and we let him go. Another got tied up with school and left. Leaving me with two... So much for my big team. I made one of the remaining two a lead so she is helping organize.
Looking at hiring more therapists although these are hard to find. The key is to finding a good one is not experience but love for children. You can teach techniques but you can't teach love (well maybe you can but I have not had luck with that).
Also considering another consultant. My consultant does not seem that good. She bills me for 1 hour of travel time even though she lives half an hour away. Everyone on my team has complained about her not being professional or consistent too. While my son is getting better and speaking more words I don't think this is to do with her programs as much as it is spending time with people one on one. This seems to be the biggest help. Whatever you do ensure your child gets one on one attention. Nothing else compares.
Right now we are doing about 10 to 15 hours a week plus preschool twice a week in the morning. Not much but a start. We plan to get close to 40 hours a week in about 6 months.
We are not doing any special diet. He still drinks formula out of the bottle and likes ice cream and yogurt. Although he often throws up when eating ice cream or yogurt. He throws up at least once a day right now. Makes it very frustrating for my wife.
His muscle and coordination seem okay but I also spend a lot of time ruff housing with him which he really enjoys. Kids on the spectrum are apparently more at risk to have bone mass deficiencies etc.
I'm really narrowing my scope of therapy to that which is scientifically proven. I don't have a lot of money so throwing it at things that promise benefits does not seem wise. I only pay for things that have been proven to show results. Heck, I hardly have enough for that so this seems like a no brainer...
Friday, February 1, 2008
The Official Diagnosis
The process at Sunny Hill is comprised of three different appointment with three different doctors who specialize in different areas. At the end of this process they write a report and then invite you in for the official diagnosis.
Sunny Hill used to have a terrible reputation and would take a long time with this but our experience was fairly quick and accurate.
They invited us in to talk and lead us to a room. There were three Sunny Hill staff members and my wife and I. The room was stuffy and had the classic florescent light feel to it. As soon as I entered I got the impression this room had been used to bring bad news to hundreds of families.
With a box of tissue on the table and solemn looks on the faces of the staff I was not surprised with the diagnosis. I was however surprised at the process. It was as though they expected us to break down. The room and meeting was basically useless and was really just designed to control an initial bad reaction by parents. I was given a few pages of information on Autism and a depressing video to watch when I got home.
They asked me if I had any questions and I told them I did not. The only concern I had was that they might not diagnose my son correctly. But since they have agreed that he is on the spectrum I can move forward with securing financing and hiring a team to help. If they had told me they disagreed I would have challenged that diagnosis and this would have been more work. I thanked them for their time and left.
For the sole purpose of providing me with a reasonably fast diagnosis Sunny Hill performed. If you are expecting more, you will be disappointed. Don't expect much guidance or assistance. Toss the video in the bin as it will only make you more depressed.
Next steps were to call ACT BC and FEAT BC and to learn about consultants, ABA, Lovaas and other real therapies. Hire a team of therapists and go to seminars. Read everything I can and talk to other families. Luckily I work with a fellow whose son was also diagnosed. He has been a tremendous help. Parents are your best source of information as they are not trying to sell you anything. Go to parent groups in your area as you will quickly learn what works and who is good.
Now my son has his official ASD diagnosis. We don't tell anyone as we hope with our hard work he can one day lose that label. We are very careful that if we don't tell some people he may get labeled as something else so it is a fine balance.
If your child is showing signs and you think there is a risk don't hesitate. There is no downside to getting a check for ASD. There is a huge downside for not acting as early as you can. If the diagnosis is not ASD and you feel differently, challenge it. Many families have been put into terrible situations from incorrect diagnosis. Take charge here and don't let anyone convince you of what your instincts are telling you.
Parents know best. My wife taught me that.
Sunny Hill used to have a terrible reputation and would take a long time with this but our experience was fairly quick and accurate.
They invited us in to talk and lead us to a room. There were three Sunny Hill staff members and my wife and I. The room was stuffy and had the classic florescent light feel to it. As soon as I entered I got the impression this room had been used to bring bad news to hundreds of families.
With a box of tissue on the table and solemn looks on the faces of the staff I was not surprised with the diagnosis. I was however surprised at the process. It was as though they expected us to break down. The room and meeting was basically useless and was really just designed to control an initial bad reaction by parents. I was given a few pages of information on Autism and a depressing video to watch when I got home.
They asked me if I had any questions and I told them I did not. The only concern I had was that they might not diagnose my son correctly. But since they have agreed that he is on the spectrum I can move forward with securing financing and hiring a team to help. If they had told me they disagreed I would have challenged that diagnosis and this would have been more work. I thanked them for their time and left.
For the sole purpose of providing me with a reasonably fast diagnosis Sunny Hill performed. If you are expecting more, you will be disappointed. Don't expect much guidance or assistance. Toss the video in the bin as it will only make you more depressed.
Next steps were to call ACT BC and FEAT BC and to learn about consultants, ABA, Lovaas and other real therapies. Hire a team of therapists and go to seminars. Read everything I can and talk to other families. Luckily I work with a fellow whose son was also diagnosed. He has been a tremendous help. Parents are your best source of information as they are not trying to sell you anything. Go to parent groups in your area as you will quickly learn what works and who is good.
Now my son has his official ASD diagnosis. We don't tell anyone as we hope with our hard work he can one day lose that label. We are very careful that if we don't tell some people he may get labeled as something else so it is a fine balance.
If your child is showing signs and you think there is a risk don't hesitate. There is no downside to getting a check for ASD. There is a huge downside for not acting as early as you can. If the diagnosis is not ASD and you feel differently, challenge it. Many families have been put into terrible situations from incorrect diagnosis. Take charge here and don't let anyone convince you of what your instincts are telling you.
Parents know best. My wife taught me that.
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