So, here we are on the eve of a holiday that I didn't grow up with, but, I am growing ever more fond of. First off - I LOVE a turkey dinner. I might not be a fan of the dodgy green bean casserole, but, I can eat my body weight in turkey, stuffing and mashed potatoes.
The concept of "being thankful"transcends religion or belief, or lack thereof, race, gender, special needs and none. I am so very very thankful, despite the bumps in the road.
I am thankful for the progress our son has made.
I am thankful for the friends I have made along the way.
I am thankful for the internet! I never would've learned all the things I have without it.
I am thankful for my mum's intuition. It has led me correctly many times.
I am thankful for my husband and family's support.
I am thankful that my parents raised the furthest thing from a shrinking violet I could imagine.
I am thankful for Tom's excellent teachers along our journey.
I am thankful for our amazing therapy team.
I am thankful for our health insurance, without which we could not have learned and treated all that we have.
I am thankful for a husband that trusts my research and reasoning and respects a new protocol.
I am thankful I was able to stay home with Tom to get him to this point.
I am thankful I have been able to help others through our experiences.
This one probably sounds weird, but, I am thankful we have found problems. Problems we could fix and treat.
We have been so very fortunate and this time of year is a good time to remember that.
Here are a few Thanksgiving resources I have found...
A social story for Thankgiving - http://www.autismspeaks.org/sites/default/files/docs/thanksgiving_social_story.pdf
GFCF Thanksgiving Recipes
http://glutenfreegoddess.blogspot.com/2008/11/thanksgiving-recipes-tips-for-gluten.html
http://www.adventuresofaglutenfreemom.com/2011/11/how-to-have-the-best-gluten-free-thanksgiving-and-a-recipe-roundup/
http://www.tacanow.org/family-resources/thanksgiving/
http://www.generationrescue.org/latest-news/nutrition/thanksgiving-dinner-on-a-special-diet/
Happy Thanksgiving All!
Wednesday, November 26, 2014
Tuesday, November 18, 2014
Why Can't The Autism Community Either Get Along, or Just Agree To Disagree?
I posted this originally on our family blog in May 2012, but, the issue still irritates me.
The autism community is as divided as ever. Even us as parents judge those who want 'recovery' or don't. There is no 'right' choice, there is only your choice. But, when someone actually does something and that something helps kids function better, or keeps them safer, or brings some awareness to the possibility that children with autism can, maybe, recover, that should be celebrated in my opinion.
I saw this posted today on someone's FB page and quite frankly it made my blood boil.
Apparently, a mother is less than impressed with Jenny McCarthy's decision to pose for Playboy again.
I was at AutismOne last week and was there for her keynote speech, where she explained her rationale, it being, her son needs some very expensive educational interventions and the rest is going to Generation Rescue. I commend her for this. So what if she is somewhat of an attention-seeker? At least she uses her celebrity to try and make a difference. No-one has to do anything. John Travolta sure as hell didn't do a god damned thing for autism, or ultimately his own son. That to me is the tragedy.
The mum in this blog post says "Because while posing for Playboy may, in fact, garner a truckload of money for your organization, Generation Rescue, it’s not going to do a damn thing for my two kids with autism". I wonder if this mother has any idea what Generation Rescue does with their money. They have a huge family grant program that this mother has the option of applying for, if she would like. Has she ever used their website? Has she ever called a Rescue Angel, a volunteer parent who can support a family?
Also, why does this particular person have it in her head that it's Jenny McCarthy's job to do something for her children? Love her or hate her aside, it is not her responsibility to take care of other people's children. That's our job as parents.
The autism community is fractured enough. Obviously, from the rest of her rants this particular mum is not on the biomed side of the fence, and that's fine, we all make our own choices on what we feel is best for our children, but, I for one, and many of my friends have seen enormous benefits from biomed.
It's not quackery.
There are many studies highlighting immune differences in children with ASD. To me, to ignore that science is the quackery, bury-your-head-in-the-sand attitude. Biomed isn't easy, but it can pay off. All children are different. Some respond, some don't.
Also, to question recovery is stupid. Recovery to me means that a child firstly no longer meets diagnostic criteria for autism. Even the NIH I believe has figures that say that a certain percentage of children 'recover' from their diagnosis. The whole world is a spectrum, both typical and ASD and recovery to me means that a child moves onto the typical spectrum. Even 'typical' children can have problems, but they don't impact their daily living to the point of ASD impairment. No-one in the biomed field (including JM) uses the term 'Cure', it's 'Recovery'.
The comments are also utter crap. Here's where you get the whole 'I've not gone down this road, not done any research and I accept my child will not recover' band jumping on the wagon. If you people want to accept this outcome for your children, go right ahead and enjoy. I will not accept that and I will not discount other approaches for my son who continues to thrive. I take a skeptical viewpoint on many of the new 'crazes' that will always be around, as I believe my previous posts have shown. But, I am not closed-minded. I am not anti-vaccine, even though I choose not to further vaccinate my son, since neither I or his doctor feel it's appropriate for him. I don't feel my son should be the sacrificial lamb for one commenter who feels everyone should take that vaccination risk to protect her.
People need to realize they are in control of their child's future, just as Jenny McCarthy is in control of hers. And it's about time people stopped with the bashing. Mind your own business people and focus on your own life, rather than the fact that someone else out there has a better body, more appeal and more drive than you or I will likely ever have.
The autism community is as divided as ever. Even us as parents judge those who want 'recovery' or don't. There is no 'right' choice, there is only your choice. But, when someone actually does something and that something helps kids function better, or keeps them safer, or brings some awareness to the possibility that children with autism can, maybe, recover, that should be celebrated in my opinion.
I saw this posted today on someone's FB page and quite frankly it made my blood boil.
Apparently, a mother is less than impressed with Jenny McCarthy's decision to pose for Playboy again.
I was at AutismOne last week and was there for her keynote speech, where she explained her rationale, it being, her son needs some very expensive educational interventions and the rest is going to Generation Rescue. I commend her for this. So what if she is somewhat of an attention-seeker? At least she uses her celebrity to try and make a difference. No-one has to do anything. John Travolta sure as hell didn't do a god damned thing for autism, or ultimately his own son. That to me is the tragedy.
The mum in this blog post says "Because while posing for Playboy may, in fact, garner a truckload of money for your organization, Generation Rescue, it’s not going to do a damn thing for my two kids with autism". I wonder if this mother has any idea what Generation Rescue does with their money. They have a huge family grant program that this mother has the option of applying for, if she would like. Has she ever used their website? Has she ever called a Rescue Angel, a volunteer parent who can support a family?
Also, why does this particular person have it in her head that it's Jenny McCarthy's job to do something for her children? Love her or hate her aside, it is not her responsibility to take care of other people's children. That's our job as parents.
The autism community is fractured enough. Obviously, from the rest of her rants this particular mum is not on the biomed side of the fence, and that's fine, we all make our own choices on what we feel is best for our children, but, I for one, and many of my friends have seen enormous benefits from biomed.
It's not quackery.
There are many studies highlighting immune differences in children with ASD. To me, to ignore that science is the quackery, bury-your-head-in-the-sand attitude. Biomed isn't easy, but it can pay off. All children are different. Some respond, some don't.
Also, to question recovery is stupid. Recovery to me means that a child firstly no longer meets diagnostic criteria for autism. Even the NIH I believe has figures that say that a certain percentage of children 'recover' from their diagnosis. The whole world is a spectrum, both typical and ASD and recovery to me means that a child moves onto the typical spectrum. Even 'typical' children can have problems, but they don't impact their daily living to the point of ASD impairment. No-one in the biomed field (including JM) uses the term 'Cure', it's 'Recovery'.
The comments are also utter crap. Here's where you get the whole 'I've not gone down this road, not done any research and I accept my child will not recover' band jumping on the wagon. If you people want to accept this outcome for your children, go right ahead and enjoy. I will not accept that and I will not discount other approaches for my son who continues to thrive. I take a skeptical viewpoint on many of the new 'crazes' that will always be around, as I believe my previous posts have shown. But, I am not closed-minded. I am not anti-vaccine, even though I choose not to further vaccinate my son, since neither I or his doctor feel it's appropriate for him. I don't feel my son should be the sacrificial lamb for one commenter who feels everyone should take that vaccination risk to protect her.
People need to realize they are in control of their child's future, just as Jenny McCarthy is in control of hers. And it's about time people stopped with the bashing. Mind your own business people and focus on your own life, rather than the fact that someone else out there has a better body, more appeal and more drive than you or I will likely ever have.
Monday, November 3, 2014
To Medicate Or Not To Medicate.....?
When a child is diagnosed with modern medicine, there always follows the question "is there a medicine that can help?". In the case of autism, the answer is both yes and no. There are medications that can help with some of the symptoms of autism, but there is no medicine for autism.
Some of the symptoms people look to address in autism are aggression, anxiety, hyperactivity, inattention, sleep problems, depression and impulse control. There are medicines that can help with these.
Whether you choose to medicate your child is a decision you alone have to make as a family. Your child's needs are individual. Your family's needs are unique.
We personally have chosen to not medicate. That is not a decision that will change for us. But, we are not you or your family. I have friends who have chosen the medication route with their child and I don't judge them for it. If your 7 yr old child has such anxiety that they are expressing suicidal thoughts, frankly, you need to do whatever you can to help them and if medication does that, go for it.
I would say though, before you consider medication, try other things that are less harmful. Consider melatonin, lavender, bed time routines before sleep medications. Look to the source of the problem. If your child has anxiety, could it be related to sensory difficulties? If so, work with your child's occupational therapist to design sensory strategies to address this, such as a weighted blanket or compression clothing.
If your child has aggression problems, work with an ABA therapist to determine what might be triggering the behaviour - could it be frustration? Where does that frustration come from? Maybe it's something as simple as your child not being able to communicate their needs.
There are many therapeutic professionals that can be a lifeline and address the core problem of a behaviour without ever needing to resort to medication. They might be able to remediate the deficit to where there is not a behaviour anymore, or teach the child to work around or cope with the issue.
If you've exhausted the options out there though and you and your doctor feel it could help, be open to the possibility, but be very mindful about the side effects that could come with medication.
Remember autism is not diagnosed using biomarkers, ie, levels within the body's chemical makeup. You are treating with chemicals that alter those biomarkers with no way to measure what else they might affect. Always educate yourself.
There are a couple of big red flags for me with medication and they should be for you too.
- If a doctor tries to prescribe medication before therapy. ABA is proven to help with autism symptoms and it doesn't have side effects (at least biological ones). If a doctor suggests risperdone before considering what the AAP (American Academy of Pediatrics) recommends, run - do not walk, away from that office.
- If a school suggests your child needs medication. Schools are in the education business, not the medication one. It is beyond their professional scope to suggest ANY medication intervention for your child. A great comeback if ever faced with this in an IEP meeting is to simply ask where that person earned their MD. If they state they don't have one, remind them that they are therefore not qualified to comment on medical issues and that any decision regarding medication is made between yourself and your child's doctor. Schools often like medicated children, they are easier to manage and there is less they will need to do to meet their needs. The cost of course is to the child, if they have long-term irreversible side effects.
Again, the take away from all of this is that your child is an individual - treat their needs, not someone else's.....
Some of the symptoms people look to address in autism are aggression, anxiety, hyperactivity, inattention, sleep problems, depression and impulse control. There are medicines that can help with these.
Whether you choose to medicate your child is a decision you alone have to make as a family. Your child's needs are individual. Your family's needs are unique.
We personally have chosen to not medicate. That is not a decision that will change for us. But, we are not you or your family. I have friends who have chosen the medication route with their child and I don't judge them for it. If your 7 yr old child has such anxiety that they are expressing suicidal thoughts, frankly, you need to do whatever you can to help them and if medication does that, go for it.
I would say though, before you consider medication, try other things that are less harmful. Consider melatonin, lavender, bed time routines before sleep medications. Look to the source of the problem. If your child has anxiety, could it be related to sensory difficulties? If so, work with your child's occupational therapist to design sensory strategies to address this, such as a weighted blanket or compression clothing.
If your child has aggression problems, work with an ABA therapist to determine what might be triggering the behaviour - could it be frustration? Where does that frustration come from? Maybe it's something as simple as your child not being able to communicate their needs.
There are many therapeutic professionals that can be a lifeline and address the core problem of a behaviour without ever needing to resort to medication. They might be able to remediate the deficit to where there is not a behaviour anymore, or teach the child to work around or cope with the issue.
If you've exhausted the options out there though and you and your doctor feel it could help, be open to the possibility, but be very mindful about the side effects that could come with medication.
Remember autism is not diagnosed using biomarkers, ie, levels within the body's chemical makeup. You are treating with chemicals that alter those biomarkers with no way to measure what else they might affect. Always educate yourself.
There are a couple of big red flags for me with medication and they should be for you too.
- If a doctor tries to prescribe medication before therapy. ABA is proven to help with autism symptoms and it doesn't have side effects (at least biological ones). If a doctor suggests risperdone before considering what the AAP (American Academy of Pediatrics) recommends, run - do not walk, away from that office.
- If a school suggests your child needs medication. Schools are in the education business, not the medication one. It is beyond their professional scope to suggest ANY medication intervention for your child. A great comeback if ever faced with this in an IEP meeting is to simply ask where that person earned their MD. If they state they don't have one, remind them that they are therefore not qualified to comment on medical issues and that any decision regarding medication is made between yourself and your child's doctor. Schools often like medicated children, they are easier to manage and there is less they will need to do to meet their needs. The cost of course is to the child, if they have long-term irreversible side effects.
Again, the take away from all of this is that your child is an individual - treat their needs, not someone else's.....
Sunday, November 2, 2014
Zinc...
Our son's zinc level is low and he appears to be just the same as his mum - zinc supplements make him nauseous. The problem seems to be that zinc supplements in capsule or powder form are so concentrated that the dosage is just too high. It's apparently a common problem with zinc.
We've tried giving it to him at bed time, after dinner, but, again, anything more than a 50% RDA (recommended daily amount) makes him nauseous. I often wonder if there is such a thing as the more deficient you are, the more nauseous you become when you try to replace it. Add to this that zinc is best absorbed on an empty stomach, which is clearly not an option.
Zinc is needed for so many immune functions - not rebuilding his stores is simply not an option.
I think I finally found a solution though - Ionic Zinc, from New Beginnings. It's a liquid form where 1 drop = 10% of the daily amount. No, I'm not paid to recommend this, but, I wanted to share a solution that we have found. Now I can supplement very easily, in drinks throughout the day. Perfect!
We've tried giving it to him at bed time, after dinner, but, again, anything more than a 50% RDA (recommended daily amount) makes him nauseous. I often wonder if there is such a thing as the more deficient you are, the more nauseous you become when you try to replace it. Add to this that zinc is best absorbed on an empty stomach, which is clearly not an option.
Zinc is needed for so many immune functions - not rebuilding his stores is simply not an option.
I think I finally found a solution though - Ionic Zinc, from New Beginnings. It's a liquid form where 1 drop = 10% of the daily amount. No, I'm not paid to recommend this, but, I wanted to share a solution that we have found. Now I can supplement very easily, in drinks throughout the day. Perfect!
Subscribe to:
Posts (Atom)