Long time since I have updated this blog. Just have not had the time.
Treatment is still going strong. Increasing hours of ABA at increasing intervals. Things are going well. Speech is increasing, dexterity is increasing and normal play is pretty good. Besides the Lovaas style ABA we always try to make him ask for whatever he wants and try not to let him just motion for stuff. It is a continual task.
Having a child on the spectrum is HIGH stress. All the parents (hundreds that I know) have it. Some are higher stress than others but we are all well above average. It's interesting though as not much outside the house stresses me now.
An interesting side effect of this is work seems easier and all those other life things are really nothing to bother about now.
Just take it a day at a time and do what you can.
Thursday, October 23, 2008
Getting things done
Over the last few months many people have asked me what they should do for their children. I feel a bit like a broken record but I have to remember this is new for each parent who asks me and it is probably one of the most important questions they will ever ask. "My son was just diagnosed with being on the ASD spectrum, what should I do now?"
Well, I always begin the same way. It had to believe but a diagnosis may actually be a good thing. If your child is showing signs of slower than normal development, go see your doctor and get a referral to get him tested (I say "him" and "boy" simply because most diagnosed children are male).
Getting diagnosed will allow you to begin with getting treatment which is something you want to do as soon as possible as it takes a while to get the funding and infrastructure set up.
If you think your child may be on the spectrum but received a negative diagnosis then you may want a second opinion. While the process is much better than it ever was, it still has room for improvement.
The next big step is funding and a consultant. Don't wait for the funding. Go after a consultant asap. Go to all the parent groups and other events and begin networking. Get to know all the parents in your area and learn all the things that are working for them.
Once you get your funding make sure you do your paperwork properly otherwise you will have headaches later. Again, work with other parents to see how they do it. The parent group is huge and you will be amazed at the support they provide. I personally know hundreds of parents in the same situation as myself and all will drop everything to assist me.
The choice of therapy is the next big decision. These days this is getting much easier as there are a few schools now teaching the Lovaas ABA and people are getting more educated on what works. Avoid all things too good to be true and remember to ask parents!
A good consultant is well worth the hunt. Once you have one build a team.
Well, I always begin the same way. It had to believe but a diagnosis may actually be a good thing. If your child is showing signs of slower than normal development, go see your doctor and get a referral to get him tested (I say "him" and "boy" simply because most diagnosed children are male).
Getting diagnosed will allow you to begin with getting treatment which is something you want to do as soon as possible as it takes a while to get the funding and infrastructure set up.
If you think your child may be on the spectrum but received a negative diagnosis then you may want a second opinion. While the process is much better than it ever was, it still has room for improvement.
The next big step is funding and a consultant. Don't wait for the funding. Go after a consultant asap. Go to all the parent groups and other events and begin networking. Get to know all the parents in your area and learn all the things that are working for them.
Once you get your funding make sure you do your paperwork properly otherwise you will have headaches later. Again, work with other parents to see how they do it. The parent group is huge and you will be amazed at the support they provide. I personally know hundreds of parents in the same situation as myself and all will drop everything to assist me.
The choice of therapy is the next big decision. These days this is getting much easier as there are a few schools now teaching the Lovaas ABA and people are getting more educated on what works. Avoid all things too good to be true and remember to ask parents!
A good consultant is well worth the hunt. Once you have one build a team.
Tuesday, April 22, 2008
Hell by default
I would highly recommend to anyone who wants to live a happy and care free life to never look at the Canadian medical system. Shocked? Let me explain.
Sure we have universal medicare and I am all for that. I think paying a bit more in taxes and having a great medical system that is accessible by all is really beneficial. But this is not what we have.
Instead, we have a bloated, outdated system that is causing immense amounts of harm.
The best way to explain this might be for me to give examples. These examples are from my experiences and are likely not as horrific as many. In fact I have heard so many these days I could fill pages and pages with third party examples (the breast cancer scandal is a simple but huge example). People are dying due to incompetence not their illness.
Take one of my sons for one example. He throws up at least once a day and this is slowly causing long term damage to his digestive system. Remember how yucky it feels to have your stomach contents pulled back up through your throat last time you drank too much or had food poisoning? Now imagine if this was part of your daily routine? Except it is not a scheduled event so it occurs when you are shopping, watching TV, traveling in the car, speaking to someone or simply trying to eat your dinner. It usually means a complete change of clothes, a shower and floor/furniture clean up.
Having seen multiple specialists at Children's Hospital none were yet to diagnose the issue. Some said it was normal (hello?) and some wanted to do tests which involved my son drinking either strawberry or chocolate milk and laying on a cold bench very still. Ah.... Perhaps we can review the typical behavior of an autistic child... my son throws up on normal milk. What do you think he is going to do if you try chocolate or strawberry? It won't get past his lips.
Children's Hospital is so much better than all other hospitals in the Vancouver area (I don't even consider going to others) but they lost our son's records and called us the other day saying they found his info and wanted to continue testing (6 months later). How can you lose a file???
Another example is of a 18 year old autistic child who was put in a home. They complained that he was having behavior problems. When investigated it was discovered that he could not talk but had perfect sign language. Do you think anyone in the home could sign? Nope. What the hell? So, you are taking a disabled child and putting him into a situation where he can not communicate. This is like taking you and getting you permanently drunk, duck taping your mouth and dropping you in Germany (assuming you don't speak German). How fun would that be?
If you have a child or family member who needs medical treatment please know that you are going to be dismissed and forgotten unless you fight tooth and nail for help.
For their sake don't assume the system will take care of them. Be aggressive and don't take no for an answer.
Sure we have universal medicare and I am all for that. I think paying a bit more in taxes and having a great medical system that is accessible by all is really beneficial. But this is not what we have.
Instead, we have a bloated, outdated system that is causing immense amounts of harm.
The best way to explain this might be for me to give examples. These examples are from my experiences and are likely not as horrific as many. In fact I have heard so many these days I could fill pages and pages with third party examples (the breast cancer scandal is a simple but huge example). People are dying due to incompetence not their illness.
Take one of my sons for one example. He throws up at least once a day and this is slowly causing long term damage to his digestive system. Remember how yucky it feels to have your stomach contents pulled back up through your throat last time you drank too much or had food poisoning? Now imagine if this was part of your daily routine? Except it is not a scheduled event so it occurs when you are shopping, watching TV, traveling in the car, speaking to someone or simply trying to eat your dinner. It usually means a complete change of clothes, a shower and floor/furniture clean up.
Having seen multiple specialists at Children's Hospital none were yet to diagnose the issue. Some said it was normal (hello?) and some wanted to do tests which involved my son drinking either strawberry or chocolate milk and laying on a cold bench very still. Ah.... Perhaps we can review the typical behavior of an autistic child... my son throws up on normal milk. What do you think he is going to do if you try chocolate or strawberry? It won't get past his lips.
Children's Hospital is so much better than all other hospitals in the Vancouver area (I don't even consider going to others) but they lost our son's records and called us the other day saying they found his info and wanted to continue testing (6 months later). How can you lose a file???
Another example is of a 18 year old autistic child who was put in a home. They complained that he was having behavior problems. When investigated it was discovered that he could not talk but had perfect sign language. Do you think anyone in the home could sign? Nope. What the hell? So, you are taking a disabled child and putting him into a situation where he can not communicate. This is like taking you and getting you permanently drunk, duck taping your mouth and dropping you in Germany (assuming you don't speak German). How fun would that be?
If you have a child or family member who needs medical treatment please know that you are going to be dismissed and forgotten unless you fight tooth and nail for help.
For their sake don't assume the system will take care of them. Be aggressive and don't take no for an answer.
Saturday, March 15, 2008
Speech
These days things all seem to be coming together. My son is now speaking and expressing himself. He still has a lot of behavioral issues and we are still pouring money into his therapy but we actually see gains!
He points in the direction he wants to go and says "that way!" When something disapears he says "All gone!" When someone says hello to him he responds (sometimes) with "Hello..."
He may not be able to have a conversation yet but it makes us over the moon happy that he is now very interested in language. My wife and I constantly talk to him and never give up with the conversation. One technique I have found that seems to work for him is to make each day a theme day and focus on just one or two words that day. He may or many not say the word but at least he gets to hear it at least a hundred times in different situations. I often find he will then say the word a few days later.
Of course we also have a great team of therapists a new consultant who is night and day different from our last one (read previous post for that horror story) and awesome OT and SLP.
It takes a lot of time and energy to play with kids and talk to them with interest for a few hours but this seems to work. Get into their play and treat them as the most interesting person for those few hours each day. Turn off the computer and the cell phone and pull out the playdou!
Communication of any type is so vital. If your doing PECS, sign language or a few words it all helps bridge the gap. For me that is key.
He points in the direction he wants to go and says "that way!" When something disapears he says "All gone!" When someone says hello to him he responds (sometimes) with "Hello..."
He may not be able to have a conversation yet but it makes us over the moon happy that he is now very interested in language. My wife and I constantly talk to him and never give up with the conversation. One technique I have found that seems to work for him is to make each day a theme day and focus on just one or two words that day. He may or many not say the word but at least he gets to hear it at least a hundred times in different situations. I often find he will then say the word a few days later.
Of course we also have a great team of therapists a new consultant who is night and day different from our last one (read previous post for that horror story) and awesome OT and SLP.
It takes a lot of time and energy to play with kids and talk to them with interest for a few hours but this seems to work. Get into their play and treat them as the most interesting person for those few hours each day. Turn off the computer and the cell phone and pull out the playdou!
Communication of any type is so vital. If your doing PECS, sign language or a few words it all helps bridge the gap. For me that is key.
Thursday, March 6, 2008
Name tags
I have never been a fan of name tags. To me a name tag is a redundant aid that makes people walk up to you and point at the name tag and say, "Hello J-O-E?" (using the name Joe for example). Without a name tag we would be forced to say, "Hello, my name is Fred. Pleasure to meet you." Seems a little more real.
Name tags were the theme at the parent ASD meeting last night. I was unpleasantly surprised to see the state of our ASD community. What a mess!
Out of 30 parents I noted the following:
- Most were doing some strange form of therapy without any scientific backing. These parents seemed to be confusing "popular" with "effective." If 90 out of 100 people do a specific therapy it only means 90 like it. Until a single scientific study is done proving effectiveness it is simply the "flavor of the day!"
- Most parents had no sense of urgency. One parent had waited a year before getting a consultant. Even at this meeting she was clueless about how to proceed. While I have patience for stupid and lazy people, I don't have patience for stupid and/or lazy parents. When your child is 6 you not only loose most of the funding but also the child may go to regular school so you have a lack of both time and money. This combined with the optimal time to teach a child (2 to 6) is all a good reason to move your ass when it comes to providing therapy for your child.
- Many of the parents seemed to have given up. They were talking about choices such as if they should redo their kitchen or spend more on their child. Hello? Not going to Mexico this year? WTF? This blew me away. Not being rich myself I knew that once our child was diagnosed I would likely never go on another vacation again. In all likelihood I would end up selling my own home to fund the therapy. Are these parents sick? On crack? I am not sure why this surprises me actually. I've heard crazy stories about parents who have team meetings with pizza and beer too. I guess here are all sorts.
Anyways it was nice for my son to play with the other children for the couple hours we were there.
Name tags were the theme at the parent ASD meeting last night. I was unpleasantly surprised to see the state of our ASD community. What a mess!
Out of 30 parents I noted the following:
- Most were doing some strange form of therapy without any scientific backing. These parents seemed to be confusing "popular" with "effective." If 90 out of 100 people do a specific therapy it only means 90 like it. Until a single scientific study is done proving effectiveness it is simply the "flavor of the day!"
- Most parents had no sense of urgency. One parent had waited a year before getting a consultant. Even at this meeting she was clueless about how to proceed. While I have patience for stupid and lazy people, I don't have patience for stupid and/or lazy parents. When your child is 6 you not only loose most of the funding but also the child may go to regular school so you have a lack of both time and money. This combined with the optimal time to teach a child (2 to 6) is all a good reason to move your ass when it comes to providing therapy for your child.
- Many of the parents seemed to have given up. They were talking about choices such as if they should redo their kitchen or spend more on their child. Hello? Not going to Mexico this year? WTF? This blew me away. Not being rich myself I knew that once our child was diagnosed I would likely never go on another vacation again. In all likelihood I would end up selling my own home to fund the therapy. Are these parents sick? On crack? I am not sure why this surprises me actually. I've heard crazy stories about parents who have team meetings with pizza and beer too. I guess here are all sorts.
Anyways it was nice for my son to play with the other children for the couple hours we were there.
Monday, March 3, 2008
Medicare for Autism NOW Rally in Burnaby
Went to the Medicare for Autism NOW Rally in Burnaby this weekend. Have to give a big thanks to the FEAT BC people for their great work. Hundreds of people turned out and there were several news reporters.
It was interesting as one reporter spoke to me and I distinctly remember her asking me this question: "...but isn't it all really well organized? I mean there are so many people with Autism now you would think it would be..."
At this point I had to wonder where the question was going. Was this a rhetorical question? Was this a leading question or was she really serious?
Parents know all too well about all the problems (too many to list) but the rest of the world seems like they are in denial.
I plan to make a presentation for these people showing the percentage chance that their next kids will be diagnosed with ASD and then asking what they would do? The changes of this are getting higher and higher. Heck if no one else on your street has a child with ASD then your the exception. 1/100 is good odds. You are more likely to have a child with ASD rather than get in a car accident this year.
Now imagine what you would do? Search the Internet. Call the government. Think about it. Confused? Now take that confusion and mix in despair, outrage and disgust.
Welcome to the world of Living on the Spectrum.
It was interesting as one reporter spoke to me and I distinctly remember her asking me this question: "...but isn't it all really well organized? I mean there are so many people with Autism now you would think it would be..."
At this point I had to wonder where the question was going. Was this a rhetorical question? Was this a leading question or was she really serious?
Parents know all too well about all the problems (too many to list) but the rest of the world seems like they are in denial.
I plan to make a presentation for these people showing the percentage chance that their next kids will be diagnosed with ASD and then asking what they would do? The changes of this are getting higher and higher. Heck if no one else on your street has a child with ASD then your the exception. 1/100 is good odds. You are more likely to have a child with ASD rather than get in a car accident this year.
Now imagine what you would do? Search the Internet. Call the government. Think about it. Confused? Now take that confusion and mix in despair, outrage and disgust.
Welcome to the world of Living on the Spectrum.
Wednesday, February 20, 2008
Avoiding the question
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.
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.
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.
Thursday, January 31, 2008
A Wife's Intuition
We had our second child when my first was about one and a half. Both births were natural (non C section) and the boys both had jaundice and had to stay in the hospital under lamps for several days. Our oldest stayed with a nanny for those few days. When we returned home we noticed he seemed distant and withdrawn. Naturally we thought he was just upset that mom and dad were away for so long. He never recovered.
This is probably coincidence but it marked the turning point in our son's behavior. He started walking on his tiptoes, hoarding things (crayons were very popular), lining up his toys and stemming on rocks in the park. He also began to eat less and throw up several times day.
My wife was alarmed but I remembered being sick a lot when I was young so played it down. He seemed healthy and I knew Autism was when the child bounced around out of control. I had watched Rainman and my child was not like that either. My wife new better. God bless her intuition.
A few months later my wife took our son to get checked out. I returned home one day to see a letter on my desk saying his ASD diagnosis was: "Most Likely."
My heart almost stopped. My world was changed forever. I can not begin to describe what this means to a parent.
For the next few weeks I would find areas where I knew I would not be disturbed and I would cover my face and sob. I felt such a deep despair. I knew this wonderful gift we had brought into this world no longer had the opportunities many other did and would be the victim of a world that does not care about people with disabilities. I would cry and cry feeling like I had some how failed to protect him. This feeling is still with me today but I lock it deep down within me and use it whenever I feel tired or lazy. Every time someone tries to rip me off or a consultant acts unprofessional I let it fire me into action.
When a family member dies we eventually get over it. When an adult passes away we morn but know they had a meaningful life and we were glad to have known them. When someone gets Alzheimer's we are sad but feel some comfort that at least they had some life.
When a child has ASD they usually have about 1.5 years of normal life. Sometimes they learn the alphabet, can count to 10, can say mom or dad, or even say your name while looking in your eyes. Then that all stops. They stop talking. They stop looking in your eyes. Everything goes dark.
Your child does not physically disappear but the child you knew does. It is probably one of the most disturbing events a parent can experience. It is no surprise that it is estimated over 80% of families with an ASD child are divorced. If your relationship with your spouse is not solid before, it will most like crumble under the stress of this experience.
After I finished feeling sorry for myself I realized that my son will likely outlive me. What then? If I have not provided for him he will be institutionalized.
I quickly decided I had to do the best I could for my son before he was left alone in this world to fend for him self.
This is now my mission in life. Heaven help those who get in my way.
This is probably coincidence but it marked the turning point in our son's behavior. He started walking on his tiptoes, hoarding things (crayons were very popular), lining up his toys and stemming on rocks in the park. He also began to eat less and throw up several times day.
My wife was alarmed but I remembered being sick a lot when I was young so played it down. He seemed healthy and I knew Autism was when the child bounced around out of control. I had watched Rainman and my child was not like that either. My wife new better. God bless her intuition.
A few months later my wife took our son to get checked out. I returned home one day to see a letter on my desk saying his ASD diagnosis was: "Most Likely."
My heart almost stopped. My world was changed forever. I can not begin to describe what this means to a parent.
For the next few weeks I would find areas where I knew I would not be disturbed and I would cover my face and sob. I felt such a deep despair. I knew this wonderful gift we had brought into this world no longer had the opportunities many other did and would be the victim of a world that does not care about people with disabilities. I would cry and cry feeling like I had some how failed to protect him. This feeling is still with me today but I lock it deep down within me and use it whenever I feel tired or lazy. Every time someone tries to rip me off or a consultant acts unprofessional I let it fire me into action.
When a family member dies we eventually get over it. When an adult passes away we morn but know they had a meaningful life and we were glad to have known them. When someone gets Alzheimer's we are sad but feel some comfort that at least they had some life.
When a child has ASD they usually have about 1.5 years of normal life. Sometimes they learn the alphabet, can count to 10, can say mom or dad, or even say your name while looking in your eyes. Then that all stops. They stop talking. They stop looking in your eyes. Everything goes dark.
Your child does not physically disappear but the child you knew does. It is probably one of the most disturbing events a parent can experience. It is no surprise that it is estimated over 80% of families with an ASD child are divorced. If your relationship with your spouse is not solid before, it will most like crumble under the stress of this experience.
After I finished feeling sorry for myself I realized that my son will likely outlive me. What then? If I have not provided for him he will be institutionalized.
I quickly decided I had to do the best I could for my son before he was left alone in this world to fend for him self.
This is now my mission in life. Heaven help those who get in my way.
Introductions
I am a father of two boys. One is over a year old and the other is three and half. The eldest was recently diagnosed with ASD at Sunny Hill in Vancouver, BC, Canada.
I have found the entire adventure to be much different than I could have imagined. Before the diagnosis I knew nothing about Autism or ASD. I did not even know what the words meant.
I have found the government is almost useless and makes you beg for funding. The diagnosis process is slow and painful. The snake oil salespeople are everywhere preying on the easy target parents who will sell their houses for that miracle fix. Thank god the parents are so helpful. This has been what's kept me sane. Good honest people who are in a similar situation and take time out of their busy day to help me. This blog is my way of returning the favor. I hope it is useful and helps other newly diagnosed parents.
This blog is my story but I welcome comments if it is helpful to others.
Thank you,
Dad
I have found the entire adventure to be much different than I could have imagined. Before the diagnosis I knew nothing about Autism or ASD. I did not even know what the words meant.
I have found the government is almost useless and makes you beg for funding. The diagnosis process is slow and painful. The snake oil salespeople are everywhere preying on the easy target parents who will sell their houses for that miracle fix. Thank god the parents are so helpful. This has been what's kept me sane. Good honest people who are in a similar situation and take time out of their busy day to help me. This blog is my way of returning the favor. I hope it is useful and helps other newly diagnosed parents.
This blog is my story but I welcome comments if it is helpful to others.
Thank you,
Dad
Subscribe to:
Posts (Atom)
