Saturday, 28 May 2011
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Oxygen Treatment for Autism: To Do or Not To Do?
It would be great if someone could give me some great advice on this issue. My three year old daughter is developmentally behind. She has not been diagnosed with anything yet. She goes to speech therapy, O.T, special education therapy, and adaptive P.E. therapy. She shows some signs of autism, but the signs she shows could just be because she is behind. Her therapists said I could have her tested, but that for right now they don't see a real need for it. After all the signs she shows could just be from her being behind. Now here comes the fun part...
I have a very obsessed mother-in-law. My daughter, who is the oldest of my kids (I have a two year old and a 9 month old), is by far her favorite. She gives my daughter special treatment and spoils her rotten. I know this is what grandmothers are known for, but it goes beyond that. She doesn't respect me as an adult or parent and basically tosses whatever I say aside and does what she thinks is best. For example, for a few months we lived with them and every night after we went to sleep she would take my daughter out of the crib and put her in her and her husband's bed. Their reason: the crib was in the living room and they were afraid someone would kidnap her. But now she doesn't like to sleep alone, and that's a problem. At first they dismissed the idea of her having some kind of disorder, but then all of a sudden they decided that not only is it a possibility...but yes, she has autism. So they did research and started telling me to put her on a certain diet, and once we moved out they would constantly ask if we were getting her "special diet" food. If we didn't they would start a big fuss and say we were starving her. I've done research myself and I understand what they're saying but here's the thing: SHE'S NOT DIAGNOSED WITH ANYTHING. They can't seem to get that through their heads. And now they've heard about this oxygen chamber therapy that is supposed to help children with significant cases of autism. (Doctors have told me that even if my daughter is diagnosed with autism it would be a very slight form.) Now they are constantly telling my husband and me that my daughter needs this therapy and we are denying her treatment if we don't do it. Keep in mind, she hasn't been diagnosed with anything. I'm getting tired of fighting with them over this. This procedure is still being researched, and I'm not comfortable with putting my daughter through something if she really doesn't need it.
Has anyone heard or tried this oxygen chamber treatment? Should I look into it or wait to see if she is even diagnosed with anything? Any advice on dealing with the in-laws?
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About the Author
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- From: lemons_to_lemonade@xanga
- Name: lemons_to_lemonade
- Location: New Orleans, Louisiana, United States
- About Me: I say what I mean, and I mean what I say. I'm usually for the most part pretty honest. If you want to know something then ask, but don't get mad if you don't like the answer. Life is too short to go through it unhappy, and if you figure out how to do that please let me know. I'm sarcastic and sometimes upfront and rude, but every question deserves an answer. I'm tired of giving people what they want. I'm constantly searching for an answer when I'm not even quite sure what the question is. I firmly believe that if you don't stand for something, you'll fall for anything. And I don't think I should be the one to have to change to make someone else happy. This is me, take it or leave it.
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Comments (18)
Just curious...why haven't you gotten your daughter tested? I know she is already getting lots of therapy, but ABA is the best for early intervention (even mild cases), and insurance will only cover it if the child has an autism spectrum diagnosis. IMO, it is always better to get the evaluation done, so if there is a diagnosis, you can have it in hand in order to get proper treatment.
As for your in-laws, they are pushy, but just trying to help. They see that their first grandchild has special needs, and they are desperate to cure her. Maybe you could try buying them a book about it? A really good one is called Quirky Kids, about kids who might not fall on the spectrum, but have some issues. It talks about therapies and how to decide what is best. I don't think there is much research out there on oxygen therapy. ABA by far has the best track record for success.
Ok, first off. Get a diagnosis. Depending on where you live, that diagnosis will give you funding for treatment or therapy. Don't think of it as a label, think of it as an answer.
Second off, fire her therapist. Like seriously. I am a firm believer that if you can't find people on the same page as you, then it's time to find someone who knows how to read. You are the biggest advocate for your child and you should NEVER listen to anyone but yourself. You can take advice, by all means, but listen to yourself first.
Ok, now that that is out of the way, on to the fun part you mentioned. My only suggestion (and I hope you don't take it the wrong way) is to be the parent. Like, BE the parent. It is not disrespectful to tell your mother-in-law, "I am the mom, you are the grandmother." You're just gonna have to grow some you-know-what's ;) I hope your spouse is on the same page as you and if they aren't, get them some you-know-what's too hehe
We are in the middle of 60 sessions of Hyperbaric Oxygen Therapy (HBOT) for our son (that's why I'm replying to this post, hehe). While autism is a spectrum disorder and varies from mild to severe, any amount of autism ('very slight form' or not) is STILL autism and is treatable regardless of what anyone wants to argue. Any therapy is good therapy (as long as you are behind it.)
As far as HBOT goes, it's not harmful and has been used for a very long time for all sorts of things, like TONS, and again depending on where you live, it can be FREE, or very, very (trust me on this) VERY expensive. I looked at it as, if there is no harm, there is no foul. I mean, you can't really put a price on something that may help your child. At least I couldn't.
Before you do anything though, get a diagnosis!! Get new doctors or therapists, or anyone whose on the same side as you. While you can't get new in-laws (which I'd recommend lol, but I'm assuming you love your spouse ;) then you just have to 'man up' and be the parent and don't let them do anything that is a "slap to your face" as a parent to your own child. I know that sounds easier said than done, but you really just need to be the stronger one. They may 'hate' you for it, but in the end, in the long run, it's alot better for you, and your family. I disagree with the comment about that they are just trying to help. People who are trying to help you usually are on the same side of the fence as you and not trying to push you over, ya know what I mean?
Once you get the diagnosis, go from there. Do your research. YOU DO IT. When you have questions, then get answers and suggestions. If you don't like those answers and suggestions, find someone whose on the 'same page as you'. Like I said, you are the parent, you are the biggest advocate for your child. Don't let ANYONE stand in the way of that, regardless if your child has autism or not.
I hope that helps and we wish you the best!
Please feel free to follow our blog as we share our lives with you and our experiences as people who love someone with autism. And like I mentioned before, we're in the middle of doing HBOT sessions just to see if it'll help our son in anyway, and we're documenting as much as we can of that on our blog. Keep in mind, and this goes without saying really, that not every diagnosis is the same and every child 'reacts' differently to different therapies. What works for one person may not work for others.
I do agree with the comment above saying that ABA just has the best track record but that's just because people usually just try ABA only... Good luck! :)
@Tanaya - I'm sorry, but HBOT actually does come with some risks. This is taken from Wikipedia:
There are risks associated with HBOT,
similar to some diving disorders. Pressure changes can cause a "squeeze"
or barotrauma in the tissues surrounding trapped air inside the body,
such as the lungs, behind the eardrum, inside paranasal sinuses, or
trapped underneath dental fillings. Breathing high-pressure oxygen may
cause oxygen toxicity. Temporarily blurred vision can be caused by
swelling of the lens, which usually resolves in two to four weeks.
There are reports that cataract may
progress following HBOT. Also a rare side effect has been blindness
secondary to optic neuritis (inflammation of the optic nerve).
Many times, these "treatments" are offered by people hoping to make
money, not actual licensed doctors. Meaning they just sign you up and
get you in, rather than running any type of physical or ensuring proper
safety medically.
Like all things that you intend on doing, you really should check with
your doctor first. Especially if your child already has other
pre-existing conditions.
Other than that one thing, I agree with all the rest. Get a diagnosis, get all the information you can find and make the best decisions for you and your own children that you can.
@stuartduncan - I didn't say there weren't risks, everything has risks, I said it wasn't harmful. The rare side effects that you have listed are in the very, very, small percentile and even if any of those things did happen, none of them will kill you, nor harm you, or is only temporary and treatable IF it did happen. I'm not about to put my own child at risk without researching myself.
And yes I agree, everyone's in it for the money... not just doctors. We were paying $800-$1000 a month for a Behavioural Consultant to come to our house ONCE a month to update our sons workload for the Behavioural Interventionist that we had to hire for around $15-$20 bucks an hour, 5 days a week, a couple hours a day. Hiring these people for ABA therapy was required to be able to get the governement funding. ANY and ALL types of therapies will cost money, nothing is free. Someone has to pay for it, and no one does it for the good of mankind, I don't care what they say, they're lying.
That is why I said and emphasized to research your options, to be the one that makes the decision in the end, and not listen to anyone but herself. Don't even listen to me! :)
Good Morning ~ As a mother of a 17 year old Autistic son, and a teacher of early childhood education/special needs, please have your child tested. Thank goodness the medical world is not how it was 20 years ago. I took my son to his 12 month-old check-up and was told by the pediatrician that I was just comparing him to his older sister(Jon has a sister Katie who is just 18 months older than he). Obviously, I did not listen, demanded an evaluation by a specialist, and, yes, my son received his diagnosis of Autism. And I do agree with the above comment, please don't think of it as a label, but an answer to so many of your problems. Your daughter will always be your daughter, no matter what! My son is also non-verbal, and with the onset of puberty a few years ago, his Autism brought many challenging behavior. Follow your heart. People give examples of what has worked for them. It does not work for all children, as you will find out all children with autism are different. Listen to what they have to say, read about it, research, but follow your heart, it will never fail you. Do what you are comfortable with in regards to therapy. And, yes, you will have to find and change many therapists along the way. Don't settle! Some of the therapists, doctors, teachers, do not have the best interest of your child in mind. Don't stop until you are comfortable with the one you have. They are there for YOU, not the other way around. A final note regarding your in-laws ~ have patience. I know it is hard to do, but be respectful in your words and actions, but make a statement to them telling them that you appreciate all their love and concern for their granddaughter, but you, as parents, have the final decision. Sometimes, especially with the older generation, all they want is for their opinion to be acknowledged. Autism is hard for a family, but you need each other! Along the way, as your other children grow, you will also have sibling issues. Trust me, I know :) But they will grow to have the compassion and understanding in life that the world does not revolve around them. There are other people who are different than we are. It will make them much better adults in our society.
The first signs or autism are usually delays or regression in speech communication. Another early sign is abnormal behaviour in group play situations and other social situations. The first step to diagnosing autism is a thorough physical examination as well as a review of family history by a specialist. Although your regular paediatrician will be able to spot unusual behaviour, you'll want your child to be examined by a professional who specializes in autism and other similar diseases to make sure your child is properly diagnosed.
@Tanaya - "Any therapy is good therapy"
So you'd advocate electro shock therapy if I believed in it, even though there's not scientific proof proving its use one way or another?
Anyway, I agree with the rest of your post. It's especially important with children who are a bit "behind" to know who their parents are and what sort of order their lives should have. Being consistent is important and having rules and boundaries set by their parents is even moreso.
@Mangonese@xanga - I said any therapy is good therapy if you are behind it. If you want to do shock therapy and you believe in it, who am I to say you shouldn't? It's up to you to do the research to see what works for you, what you want to do for your child or for yourself, or whatever.
@Tanaya - Are you kidding me? So you're actually saying you believe it's okay for people to do potentially harmful, untested procedures that any ol' quack has put a label of "therapy" on?
I hope that everyone realizes that there is no magic cure for autism and spectrum type disorders. All these therapies and various diets and things can possibly "appear" to help your child at the time, because you want so badly for something to help your child - believe me, we tried them all. Some things actually do help, but nothing is going to "make it go away" in most cases. It is how your child is, and you have to learn to work around their disability, do what works best, and accept them for who they are. My Aspie, NLD son is now 24, and I think after all these years, what I've finally realized, now that I'm not "in the thick of it" anymore (he is now semi-independent and out of the house) is that all the things we tried, all the therapies, all the special education and methods, medical interventions...yes, they may have helped him as he was growing up, but he's still the same person, with the same quirks and difficulties, and nothing we did really changed him or made his "differences" go away. You basically love and care for your child the best you can, help him all you can, and even while you're railing against whatever caused her to have these challenges, you can't change them, you can't compare them to your other children, and you must accept them as they are - and love them fiercely, while still making time for your other children and the rest of the family. Don't let the other, "typical" children suffer or lack too much while you're pouring everything into the disabled child. It's hard to strike a balance. Everyone learns so much. My "typical" children at times were resentful and felt neglected, while at the same time, over the years, they gained a compassion for those with difficulties, because they understood it firsthand from living with it.
I'm glad you have a mother-in-law that cares so much, although maybe she is going overboard, huh? I had the opposite - they didn't believe there was anything wrong for years and harshly judged us all the time for everything we were trying to do for our son, guided by doctors and therapists. Thank goodness they were hundreds of miles away, although if they had actually lived our reality, they may have been more understanding. I hope you can strike a good balance with your in-laws, and that they can focus on your other two children, as well!
@Mangonese@xanga - You are clearly missing the point.
Some therapies might help depending on the need of the child, I worked with children with more severe cases and it helped thier quality of life tremendously (and thier parents too). Early internvention can help the child extensively - or if not needed, show no signs of improvement at all.. Not attacking you or anything.
Please have your child tested as soon as possible to:
1.) Ensure you get a head start with her if you need one.
2.) Get your In-Laws off your back if she doesnt need the help
This is YOUR child, do NOT these Grandparents rule your life.
When I was 8 a teacher told my mother to put me in special ed classes because I was behind. I was tested for everything under the sun (privately, not through the school) and the only thing that came up was a mild form of dyslexia. I was very advanced in language but extremely behind in math. My mother protested and fought the "system" to keep me out of Special Ed my entire school life.
I'm 24 and I have an amazing career in HR for a University. I'm well adjusted, live on my own in San Francisco, have a great social life and in my spare time I run marathons. DO NOT let anyone tell YOU how to raise YOUR child. It would have crippled my self esteem had I been forced into Special Ed classes I didn't need.
These grandparents are putting her into a label, one she diagnostically hasn't been tested for. Don't allow them to pigeon hole her into this label.
DO get your child tested. For the childs sake. When my tests came back clean and clear the tension was off me and my parents. I was put into private tutoring for math that taught my tricks to overcome my dyslexia and that was that.
Just my two cents..
You seem to be asking many questions other than the oxygen treatment. Although agree that a formal medical diagnosis of ASD is not what you want on her records for many reasons right now given you don't know if she is slightly behind or ADS you need to think why is it hard for you to get the test done? I know my reasons I haven't myself formalised on record but I still went private to know how provide the best I could. Maybe think about a private test so you can put that behind you.
I don't know where you live and how if goes on record if you pay for it yourself but here we can then decide to treat ASD without having anything go on record. It depends if you need funding we didn't and yes you will need it on record when she starts school (if you go public) in some countries for support regardless of funding.
Early intervention is her best shot if she is diagnosed with ASD. ASD has no cure, it's managing and minimising and the earlier the better. Rather than to take advice from non-experts on forums or blogs go to an expert not someone who wants to delay diagnosis. In the end it will give you peace of mind to move onto real solutions knowing her real problems plus the in-laws will be shut down because you have evidence in hand from the experts.
As for diets (gluten, dairy free etc), supplements ect (can't comment on oxygen sorry) yes they do work but ASD is such a wide spectrum it depends on where she is or weather she has ADD (or both). We are not the experts you need to seek a real diagnosis and advice regardless of whether it's on or off her record. The earlier the better.
As for the in-laws agree how annoying they are but you will need their support if she does get diagnosed with ASD. ASD is a life time commitment but not a sentence. You as much as her will need all the support. Best of luck.
I have a 14y son with ASD, three girls , two older one younger. Two thing I can tell you first - like everyone has said get her tested and learn about what ever it may be, It will help you and her. second - I now see how my girls were pushed back and did not get the time they needed from me and thier dad, make sure you take time out for your other children.
@a2z - I will add my child looked behind at that age too and the experts said to me hold off a diagnosis cause my child was just behind given the environment in which they grew up. Maybe ask why you should hold off the assessment.
ASD is pretty obvious if you have been socialising her she does not show interest in other people or things that other kids do (kids not adults), or maybe she does but can't give the same response (not speech more eye contact and interest in the same type of play) but still she might be ADD? Read up then make your decision prior to testing so you can ask these questions because alot of what 'you' say is the diagnosis given her age.
Regardless a private assessment won't hurt but yes the test is very subjective especially given her age. I just don't think you should be going down the Oxygen path, it seems desperate there are so many other options out there like ABA along with social methods that are proven to deliver. If you want to take this on yourself I would suggest you read and read widely not just a blog with limited contact on treatment and then look at the results. Really if she is ASD nothing with cure her, just assist her.
There is no way to self-diagnosis your child with autism. There are a LOT of diseases and conditions that present themselves as autism, or have autism-like characteristics, but are not autism at all. Seriously, get a professional answer.
First, you need to get your daughter tested ASAP to find out if she has or doesn't have autism. It doesn't matter what kind of therapy she is getting right now. Waiting to get her therapy for autism if she is autistic could be very detrimental. Autism responds best to autism specific therapy, like ABA, and is most affective the earlier it is done. If she is showing ANY signs of autism DO NOT WAIT to have her tested. This only decreases the chances the therapy will be received in its most effective form. I know some people might argue that its never too late, which is true, but it has also been shown that the earlier the better.
Second, I would highly recommend at least trying a gluten free, casein free and soy free diet. Because the diet has been so effective for so many people and it is not harmful if they are getting the proper amount of nutrients, I don't see why you would not try it if she is autistic. My daughter greatly benefited from us changing her diet. She wasn't talking at all and three days after we changed her diet, she said 13 words. That's dramatic if you ask me. We couldn't get her to imitate anything prior. Now if she gets a hold of milk she acts off for weeks. The diet doesn't work for everyone though. I think only a certain subgroup of kids are diet responders, but I say its worth a try.
In regards to hyperbaric oxygen therapy, I personally have decided this is not the route I want to take until there is more research out there. I feel really torn on the subject. But that's the way autism is, there aren't a lot of clear answers. I have decided to not even think about that therapy until I have addressed and gotten her therapy that is more widely accepted (she currently has speech and ABA, but I'm working on getting OT). If I were you, oxygen therapy would not be my first stop. There are so many other things that I would try first or that I would consider more of a priority to focus on. Supplements can help a lot too, like probiotics and a good multivitamin high in B vitamins.