Guilt, Autism, and Jenny McCarthy
Personally, I agree completely with Julie. Jenny McCarthy and many, many others are intent on getting across the idea parents with children on the autism spectrum are facing a "window of opportunity" that will slam shut at some magical moment. They're convinced that only the "mommy instinct" can help us understand the causes, treatments, and ultimate cures for autism. And they are staunch in their certainty that any mother worth her salt will "fight like a mother lion" for her child's needs - be they doctors' appointments, private educational options, better or different therapists, or even more inclusive communities.I've received a lot of responses - some positive and some not so positive. Many, though, seemed to think that I was trying to suggest that biomedical treatments are ineffective... that parents who try biomedical treatments are wrongheaded... and so forth. In fact, this is what one commenter had to say:Like Julie, I think this approach places the causes, treatment and ultimate outcomes of autism spectrum disorders squarely - and unjustly - in mothers' laps. Worse, it does so with a sort of mystical sensibility that suggests that we, as mothers, "should just know" what the problem was, how to treat it, and how to overcome it. If we are tired, if we are overwhelmed, if we are broke, or if - heaven forbid - we want a life of our own - it is stated or implied that any negative outcomes are our own fault.
Maybe some of you ARENT doing enough with your child/ren. Dietary interventions and other biomedical approaches DO and HAVE benefitted thousands of kids on the spectrum. Maybe its just too hard for you. Assauge your guilt some other way and stop disparaging parents who believe and have seen benefit from it. Maybe if you spent less time trying to defend your choices you'd have more time to try going GFCF and other therapies that take time effort and energy. Signed- Not a martyr or a selfless mother, just a mom that wanted to see her kid out of continual painI am NOT, repeat NOT, suggesting that biomedical interventions are ineffective. I am NOT, repeat NOT, suggesting that parents who implement biomedical interventions are any more or less praiseworthy than those who do not.
What I am trying to say is that our culture is placing more and more blame, guilt, and responsiblity on mothers - and expecting mothers to have semi-magical abilities to "know," through "mommy instinct," what causes and cures their childrens' problems - whatever those problems may be. Mommies are then expected to actually cure those problems - apparently through sheer force of will and mommy power. Jenny is a small - but at this moment potent - part of that culture.
No parent should be presented with the blame for something over which they have no control. No parent should force themselves to choose between, say, their child with autism or their spouse; their child with autism or their other children; their child with autism or their own physical or mental health. Yet every day books, websites, therapists, support groups and articles push the idea that mommy can and should do just that.
In short: I believe that mothers have a huge role to play in the lives of their children with autism. But mothers are not magical beings. Nor can they dedicate every resource at their disposal to their child with autism - and at the same time maintain a healthy marriage, support other children and parents, pay for mortgages, college tuitions and retirement.
Mothers, like their children with autism, deserve the opportunity to live full, happy, creative lives.
Comments
I’m finding that anything and everything anyone says that is not “biomedical treatments cure your kid” is met with hostility. We HAVE tried it, and I’m SORRY it hasn’t worked for my kid,and it would be really cool if it did, but I AM allowed to say that, just as someone whose kid it did work for is allowed to say that!!!! Freedom of speech should still be alive and well!
People do NOT read everything that’s said and respond - they filter out what they dont’ want to hear into “blahblahblah…biomedical is bunk” and completely disregard the fact that that is NOT what the person said in the first place! It damages the very credibility they are trying to establish!
I agree with Julie, We need to respect that what we do as parents for our children is an individual choice for the best interest of that particular child. I feel the hostility that some parents put forth divides the Autism Community, We should be working together and supporting each other and not judge one another.
Let’s leave the infighting to the politicians and realize that we all have our struggles with decisions and choices and we doubt ourselves enough that we don’t need another parent to vehemently roar how great their choice is….I’m pleased it worked for that family, but it worked for “that child”,
that’s why it is called Autism Spectrum Disorder, it’s very broad.
So please tell us your success stories from whatever choice you make, but don’t judge my path, if you have not walked in my shoes.
All I can say is
Right on, Right on.
I decided just this past summer that I can no longer put my son first. He will have to share my time with me, my husband and his sibling.
I thought his condition was for me to run a sprint, I hit the wall … damn it is a marathon. He can’t continue to be my entire focus anymore, others need me too.
While I have found that OT,PT, and Speech have been helpful for my son, I have limited it to just that. After a brief stint with ABA, which is the “wonder cure” here in SC, I cancelled therapy after seeing my vivacious boy regress after only two weeks. I had several people take on quite a frigid tone with me when I had to make my rounds of explanations, but I stand my my decision. Speaking as one parent to another… maybe your child thrives on continuous therapy, strict diet, and biomedical treatments. Mine does not. Leave it be. Never mind the fact that some of these treatments sound downright scary. They are not things I would want done to me, why subject my child to that? No, as a family we decided to take a different approach and embrace our son’t autism. We have accepted that there is no cure, just as a parent would accept blindness, Down’s, etc. (I know that the examples are random, I am trying to provide widely accepted examples of conditions met at birth). We do not feel as though we are giving up on our son. In fact, relations have greatly improved because of this acceptance. Sure we meet obstacles, but instead of fretting over it, we deal with them one by one. We observe what sets off meltdowns and we work to avoid that, we set up schedules, we provide examples, we use visuals when we can. We adapt. As a result, I feel more confident as a parent and our boy feels more confident because he is accepted for who he is. I do not expect many of you to agree with me, but I honestly do not care. I refuse to feel guilty for not falling into the therapy trap that dictates so many lives. And if you ever want to know what many autistic people think of this “curebie” mindset, visit some of their blogs and websites. It is sobering in the least but it also provides happiness.
And when the brokenhearted people..
Living in the world agree…
There will be an answer…
Let it be.
Everyone, do your thing. Biomed or not. ABA or not. Do what works for your kid, your family, your life…
Stop judging each other. It gets us nowhere.
Just let it be.
Completely cornball I know, but it’s true!
Well said! Thank you for saying it.
I agree with Elizabeth. Sacrificing the other members of the family is not healthy, either. Hurrah for those people who have only the one child to worry about. Other family members need attention, care, and feeding also. Having “nothing wrong” with them is not a reason to neglect them and create resentment towards the child who has issues.
You are right mother’s should not have to have such a heavy weight on their shoulders. My life is nothing, but autism. This is so because of inadequate negligent Doctors who are nothing but blind slaves to big Pharms. If I had continued to listen to my child’s neurologist, there is no doubt in my mind he would not be alive today. Unfortunately, Doctors (both male and female) do not take mother’s conerns seriously. We have no choice,but to fight for our children. Also, it is a FACT that a child’s brain has “plasticity” up until the age of 6 or 7. This is when interventions are most effective. TIME IS OF THE ESSENCE WITH THESE KIDS.
The notion that “time is running out,” “there’s a window of opportunity,” or “your child’s will be unable to benefit from therapy after age __” just doesn’t seem to fit the evidence.
YES, it’s great to get earlier intervention. It allows you to make strides before public school and all the IEP hassles that that involves. It allows your child to catch up before anyone can say “he’s too old to be doing _______.” And there is research that suggests that very young children have particularly “plastic” brains. But so far as I am aware, there is NO study that compares children with similar symptoms who are treated earlier and later, to see whether earlier intervention actually changed therapeutic outcomes.
To show you what I mean, I’ll cite an article I wrote which included an interview with a researcher who works with young and not-so-young children on the spectrum:
While there are solid practical reasons for early intervention, there are — so far — no research studies that show that earlier intervention offers more hope of improvement than later intervention. In fact, Geraldine Dawson, Ph.D., Professor of Psychology and Director of the University of Washington Autism Center, makes the following point: “For all we know, a child with a developmental delay may have a longer window of opportunity for growth. I think it’s not helpful to alarm parents in that way. I’ve seen kids who start late and quickly catch up — a lot of kids with intensive early intervention who progressed slowly and then took off in elementary schools.”
This is SO important - and so rarely said. As a result, parents are frantically trying to shove every possible therapy in before the magic age of … what? 3? It’s a crazy race, and the poor families that reach age 3 without “recovering” their child from autism feel that they must somehow have left out that one critical therapy… spent one hour too little… or somehow are to blame for the reality that their child is, in fact, autistic.
Lisa Rudy
YAAHOOOO. Finally someone in the press that is willing to state the obvious. Dietary schemes and manipulative therapy do not make you non autistic. They simply give the caregivers the ability to recognize how to address the autistic persons issues.
At sixteen, my daughter suddenly learned how to tell us how she feels. She is learning to cook for herself, and a whole bunch of other issues. If we had followed the FEAT attitudes, or if the local service providers had followed the FEAT recommendations we would have abandoned our children long ago.
I take my son to this Doc, I have seen so many recovered kids there I first thought I was in the wrong place. He believes this epidemic is immune based causing shut down of blood flow on Spect
most likely a virus . Anyway my son is making progress, he can now put on his own shoes (big deal for us)and is saying a few words. Guess I’m just saying if your child has this virus it doesn’t hurt to find out I could’t believe the lack of blood flow on Spect in the crtical areas of the limbic system and especialy the temporal lobes(speech)I had strep as a kid and nobody treated it, it’s given me a life long heart issue. What if these children really have this virus what long term effect could it have?
As a teacher of children with Autism who come from low income, low educational families, I can tell you, there is hope for your child to improve. With the right support coming from at least one part of your child’s day, you will see improvement. My students have learned to fend for themselves when at home, and survive missed meals, and neglect. They thrive in school. Some parents love their children but don’t have the resources to get outside therapy for them or to give them a special diet. They also are improving in the classroom. Yes it would help if the parents are supportive, could get outside therapy, could try a different diet. But from what I see, these children are improving daily and might actually be a productive participant in society one day.
My mother told me,”Don’t have children until you are ready to give up everything that you have and everything that you are.” She was right.
Luckily, we were ready and willing; we are mortgaging our future and in doing so, giving our eldest daughter an independent future. Her younger siblings are learning important life lessons about the importance of love and tolerance and encouragement and compassion and the value of things vs the value of people.
Likely, our kids will have to work their way through college, buy their own cars, and wear clothes minus the designer logos. Possibly, we will lose our home and make a new one in an apartment.
Ultimately, we have our love and respect for one-another; and each of our children will have the freedom to choose what, where and how they want to be.
They did not ask to be born; it is our job to provide them whatever it takes to allow them full, happy, and healthy lives. When I decided to bring children into this world, my “right” to freedom, fun, and selfishness was relinquished and I was given the joy of something much more important in its place — being “mommy” for three beautiful little people.
Maybe in another 18 years, I can reclaim MY independence; until then, I will give everything that I am and everything that I have (and can borrow) to ensure the best future for each of my children.
Just my $0.02…If you choose to parent from another point of view, that is your right. Please do not condemn me for wanting to leave no stone unturned in my quest to help my children reach their fullest potential. Hopefully, each of us (parents) is taking the time to teach our children one common lesson — the Golden Rule. Let’s teach them by example.
This is a great thread. I love Elizabeth’s comment, and it closely matches the same viewpoint I have with my own son.
I feel sorry for commenter Lisa Miller on so many levels, none of which have anything to do with the fact that she has an autistic child.
Biomed did work for us to help chelate out some heavy metals that our adopted child accumulated from Russia. However, now that we have moved on from there we battle issues like yeast from his heavy antibiotic use from the orphanage. Although he is not genetically autistic he presents as so because of his institutionalization and gut issues (from bacterial infections). We have found that our experience is so similar to all of yours…that doctors don’t listen to what is really going on and we have had to really fight for our son’s treatments.
Thankfully he is finally coming out of his shell (except for the underline yeast and bacteria issues we continue to battle) but we know that there is hope.
We recently met an adoption neuropsch (sp). who adamantly proposes parenting our children the way they NEED to be parented and not the way the norm does it or the way society tells us to. It makes a lot of sense for our kiddos.
You said it. As a working mom with 3 busy boys, one of whom has autism, we mustlook after our own mental and physical health to be of any use to our children.
WHEN ARE WE GOING TO BAND TOGETHER TO HOLD THE PEOPLE ACTUALLY RESPONSIBLE FOR OUR CHILDRENS’ DISORDERS ACCOUNTABLE? 17 years from the start of this epidemic, the Am Academy of Pediatrics announces intent to “teach” pediatricians the signs of autism for screening. Instead of dismissing and ridiculing parents - they are now going to HELP us? Are we waiting for this class of people to PREVENT OR CURE AUTISM? What a laugh. Pediatricians are responsible for the state of children’s health in the US - and it is worse than ever. Moms BAND TOGETHER and point toward those actually responsible - the ones profiting from this nightmare!
Doreen - are you saying that you believe pediatricians are to blame for autism, and that they deliberately caused an epidemic in order to make money? Just making sure I understand…
Lisa Rudy
Excuse me, but if I may point out the subtitle of the book is “A Mother’s Journey in Healing Autism”. I don’t see where it says “What should be every Mother’s Journey in Healing Autism”.
Every parent has an absolute right to do whatever they feel is necessary for their child.
And I agree that it IS unfair that this disorder is thrown into the laps of parents because the medical establishment has failed children with Autism.
But to blame parents who persevere and try every therapy, and share their experiences for setting “impossible standards,” is just incorrect!
No one is shoving BioMed down your throat, no one is saying you haven’t done enough. They’re simply presenting what has worked for their child!
If YOU CHOOSE to feel guilty from that, because you HAVEN’T tried everything that they have - then that is YOUR problem.
And NO ONE has said or even implied that there’s a magical “mommy instinct” that has cured their child! That’s what you want to hear so that you can say, “I just don’t have this magical instinct! It is not my fault!”
The truth is there are parents who have willingly chosen to sacrafice parts of their lives in the quest to better understand their child’s disorder and to help them. Their “mommy instinct” is blood, sweat, and tears. It is research, and therapies, and diets, and doctor’s appointments.
It is THIS “mommy instinct” that YOU do not wish to participate in. AND THAT IS ENTIRELY YOUR RIGHT.
It sounds to me, that you really need to find the peace that Elizabeth has found.
At the risk of repeating myself - I am NOT suggesting in any way that parents who choose biomedical treatments for their children are superior, inferior, or otherwise more or less praiseworthy than anyone else! And of COURSE parents change their lives, make sacrifices and trade-offs because they choose to have children. We have done just that - I work at 6 a.m. and 10 at night, on weekends and vacations, so that I can be there for and with my two kids and husband.
BUT.
I still stand by this statement: Mothers, like their children with autism, deserve the opportunity to live full, happy, creative lives.
If you wish to see Jenny as a model, then perhaps you will also see her as a model of a mother who cares, is involved, does what she can - but ALSO finds time, energy and creativity for her career, her lovelife, and her friends.
Lisa Rudy
No one has told you that you couldn’t live a full, happy, creative life! No one has said that to any parent of a child with autism! How on Earth are you reading that from Jenny McCarthy’s story? And where are these articles, books, support groups who have created this culture that mom can and must do absolutely everything for their children, sacrificing her entire being? In my research, I’ve actually encountered the opposite; many books recommend Moms take time out for themselves, take time away from “Autism” and just enjoy life and the beautiful child they’ve been given.
In your blog you put blame on Jenny McCarthy for perpetuating such a “culture” and then in a comment, you commend her for being a well-balanced, working woman and mother who can do it all. Well, which is she? A perpetrator or a role-model?
Early intervention is good. But it is not a cure for autism. Neither are dietary or biomedical intervention. Autism is a life-long disability. However, improvements can be made every day. This includes after the “window of opportunity” after the ages of 5,6, and 7 . Children with autism DO improve with age. also, autism is a spectrum, all childrenvary in degrees of severity. My child is more severe but making progress. Do no panic yourselves about early intervention, Children and adults are lifelong learners.I also believe the families needs are just important as the child with autism’s needs.
I agree with Elizabeth 100%! My son gets speech and OT therapy at school and that’s about it. And he’s doing very well in all aspects of life. I chose to simply enjoy him instead of bombarding him with therapies in hopes of fixing him. And it seem to be working well for all of us. God bless us all and best of luck!
My son is 17 with autism, Unlike Jenny, the average parent or family has neither the money nor the insurance to get their child the best help available. Many parents have to uses medicaid. Which means your child is not getting the best care available. The vitamins that are recommended are very costly. The special diets can be as well, most of the organic or health foods cost more than the stuff with gluten.
My son is set in his ways, if I tried to change his diet at this point I would have some problems.
I don’t agree with the mommy instinct, God is the creator of everyone and only He knows the cause or root of autism. I dare not take God’s credit. I believe that in His time our childrens’ healing or deliverance will be manifested some sooner than others, whether it be through diet change, medication, or vitamins. My faith and trust is in God not man and surely not in my instincts.
Instead of insulting each other let look at the real problems facing parents with autism.
Where is the help for the ones who become physically agressive?
Where is the respite for the child/family in crisis?
All of the things that are suppose to be in place aren’t they sound real good on paper, and may this is because the ones writing it don’t have a child with Autism or any disability.
More and more children are being diagonised with Autism, where are the resources to meet the needs of these children and the existing families.
I can’t attest to any advantages/disadvantages to treatments yet because my daughter is a new diagnosis. I CAN however, state that I haven’t had a life since my daughter was born. My new phrase is, “I am robot.” I have learned to turn off my reactions, my needs, my emotions until I am a walking dictionary of trying to stay “in tune” to my 13 year old daughter. It has been like this since she was born.
I no longer have dreams. I fear that if I allow myself to dream that I will fall in love with that dream and resent my daughter. Therefore I just ignore all that life can offer. I think of retirement age and long ahead into the future when I can RUN!
All that negative to say, my daughter is so precious to me. I love her with all of my heart and unfortunately loving her requires all of my soul as well. She is beautiful and smart, but has the logic of a 6 year old.
What is my point? There is no need to state the obvious to a parent with an Autistic Spectrum child. As moms, we know that these kids require our instinct, our patience, our kindness, our LIVES. We really never had a choice…
It’s interesting that there’s an emphasis that moms ‘know’ what caused their kids’ problems… I spent nearly three years with several different agencies telling me that I know nothing about my kids, and any problems they have were all of my causing.
I didn’t know all of my son’s issues; I just knew how much I had to dance around his triggers, to keep him from being overwhelmed. My daughter is younger, and I’m learning what I have to do to keep her life on a mostly even keel. That’s all I can do - I can try to guide them some, I can look at suggested diet information and therapies (neither are autistic), and I can try to use some and see if it helps.
But it is on my shoulders, to research these things on my own, to find them on my own, to see that nobody in the system will try doing any of it, to try to do it all on my own. I didn’t go to school for this. Don’t people go to school to learn how to produce and implement programs for kids who aren’t like other kids? Maybe they’re all busy with their own children, maybe they’re just writing books about what I’m doing wrong.
The present conversation is fascinating because it represents facets of the whole problem, yet most will only focus on the facets. It is unfortunate that many professionals do not see their projection of their fear of incompetency onto parents…and vice versa with parents projecting onto doctors, educators, other parents, etc. And of course then there is the parent “guilt” that maybe more could be done…which is really a function of a disjointed, poorly coordinated medical, educational, political, legal, community and family system. There has been no integrated services…the medical doctors still hold themselves to be the experts, and yet are extremely underinformed and behind in what we who live with autism already do know about the biomedical aspects of the so called neurological condition. Parents trying to help the situation may very well “assume” the mantle of having to know more and do more simply because so many of us have been given so little to work with. Until just the past year, I truly believed Autism was the one diagnosis you could get for your kid that came with no treatment plan - other than call the EI provider or sue the School district (several parents were told this by developmental pediatricians). Cancer, diabetes, bipolar - they have plans, despite the prognosis. The doctors didn’t think anything could really help autism…the mental health community believes in drugs…ABA fought with floor time…diets are a waste of time and money the pediatricians say…Speech therapy gets funding easier than OT…Sensory Integration is still in dispute…etc etc…And YET many of us do know that this system can be better. And we will not wait until the docs figure it all out, simply because profit prohibits prophetic movement when it comes to these types of matters.
Cure may not happen. Those who I have met through our group who are “cured” were actually food allergy kids developmentally delayed…or Sensory Integration Dysfunction kids. They placed on the Spectrum but as the underlying causes were addressed they came off. My son is still Autistic but all agree he is different from others given the biomedical, sensory and behavioral approaches we used. Jenny is not about instinct as much as she is about intuition…we do each have that. We can use intuition to lead us on a knowledgeable and reasonable search for possible supports. Cure was not what I sought…healing was.
Cure does not always happen, but healing can. Healing is a holistic perspective that allows us to each embrace what we must endure. I am part of a support group that addresses the emotional and spiritual aspects of the Spectrum journey…we look for whole person ways to create self care models to rejuvenate the moms and dads and siblings. When we are more peaceful and centered, then love flows easily and days flow better. Relationships with service providers are easier. And most importantly, when we stop trying to fix the child and choose to see them as complete loving persons…when we stop hating the disorder, since the child can not distinguish our hatred of “it” from possible resentment of them…then healing happens. When we honor the bereavement and grief cycle of watching some of our dreams shatter with the prism of Autism, then we can reconcile and see in a new “light” what gifts the autistic person brings. If parents, and all the people tending to their condition would work well together to honor and respect each other, then we would see the improved, integrated, holistic services the Spectrum person deserves. Autism teaches us much about how our systems do not work. Let’s have it lead us to a better way of living as a community.
Don’t you know, you all are lousy parents because you didn’t spend $3000 or so on Fast ForWord? *I* did, and my son can talk now. OH and you HAVE to do it at the providers’ office, which will triple the cost from what you spend at home. But you see, if you monitor it, you won’t be doing all you can.
Do you see how HORRIBLE that attitude is?
OR how about this….I can get on the parents who homeschool instead of FORCING the school districts to comply, thereby helping ALL kids on the spectrum and enabling them all to have FAPE. Try being an advocate instead of being SELFISH and worrying only about your own. If you want the village to take care of your kid, you gotta help take care of theirs.
Yeah, I could say that, but wouldn’t that be disgusting?
It is not a question of people who don’t do GFCF doing all they can for their kids. Most of us end up trying GFCF at one time or other. It did not do a THING for my kid. And chicken nuggets have been banned from our house for years.
Many of us found out WAY too late about our kids’ Dx, and biomed options are OUT. Been to the holistic doctors, found that out. What are people supposed to do that get the official Dx at age 10, instead of age 3? Back when my son was young, they knew NOTHING. So don’t even be quick to judge.
It is a question of DOING, period. You do what WORKS, you do what is APPROPRIATE, and Most of us do what we CAN. You try this, you try that. Not all kids are affected the same, and they don’t all respond the same.
Fast ForWord DID work for us. That doesn’t mean it will work for you, and I would never DARE tell someone that if they didn’t do it, they were lousy parents, or not doing everything they could for their kid.
The attitude is just as low as it gets. If that’s the Jenny McCarthy philosophy, consider her persona non grata in my book. Sorry if you don’t like that.
And if you don’t, go spend $6000 on both installments of Fast ForWord. I look forward to hearing that it works for you, too.
I’m sad to see that the pain we all feel for our children has turned into anger towards eachother. I wish that blame were not at issue here. Shouldn’t we just try to get our children out of the pain and disconnection that they suffer from?
Referring to the first day of comments: I doubt any of us really knew what to do when we saw our children suffer or what to do when we received the diagnosis.
Our son was diagnosed at age 4 1/2yrs. We were in shock but not surprised. We just didn’t know what to do with ‘autism’ and neither did the doctors. Doctors offered drugs for our son and marital therapy to help us keep the family unit together during this challenge…this unending challenge.
This simply was not an acceptable answer to me. There had to be more!! I found the biomedical approach on my own and against the approval of our allopathic doctors. Well, they’re not my son’s mother. I am. Unfortunately, I was alone and had to do this on my own. I spent this last year reading and studying the medical research papers that are available and pertinent to my son’s symptoms. Can I explain the stress and distress that I’ve suffered through this year? I couldn’t put it in words. I’ve been admitted to the hospital several times because I’ve just been broken down, exhausted and sickened. I’m not giving up though. I’m financially challenged so the burden is great. Giving up because this is uncomfortable for me is not an option. I couldn’t live with myself if I gave up on my son’s chance to have a better life because I’m uncomfortable.
The biomedical approach HAS helped my son. It’s not the magic pill. It IS the reason why he’s verbal now. I’ve taken these supplements away and voila! He loses his ability to express himself verbally…kind of obvious that these supplements work. He gets ABA therapy also. He gets help at school. He responds well to speech and occupational therapy. Sensory integration techniques are very useful. The GFCF Diet didn’t work for us at first. In fact it was kind of a disaster. I learned alot more about it and tried again. It takes three weeks to clear the casein from the body, three months to clear the glutein out. It worked the second time. Alone, the GFCF Diet didn’t give us the results we wanted but my son was much more easily reached, not a zombie. I encorporated the Feingold Diet. It took two weeks for the first results to show. Our bedwetting problem disappeared. Definitely a GOOD result. If we stray from the diet he wets the bed and has emotional outbursts….makes sense to stay on the diet. It works. All of this together works. Alone, each single method is not enough.
This is a constant effort. I’m tired. I cry. I gather myself together again and keep going forward. There is no other option.
I have found moms who don’t put themselves out and disagree with the methods. I don’t understand them. They seem to disconnect themselves from the suffering of their children. I can’t do that.
Moms, please don’t be bitter. Every child on the spectrum IS different from the next. That’s the difficulty we face. Some methods DO NOT WORK for some children but DO WORK for others. It’s up to us to work harder than we have ever worked before to find the key to our own children’s autism if that’s what you want to do. Allopathic Doctors cannot do this, will not do this, because they don’t have the tools nor the motivation to do so…. AT THIS TIME, THIS UNFORTUNATE TIME IN MEDICAL HISTORY IT IS UP TO THE PARENTS TO MAKE A DIFFERENCE FOR THEIR CHILDREN. There are doctors who can help but they are few and far apart.
Good luck to you, Moms and Dads.
Maybe we should look at adults with autism and talk to them about what worked for them. I’m a mother of a child with autism and I’m getting a little tired of people talking about something that they really can’t ever understand. Sure, I think I know my son, and what works for him, but there are many adults that have lived with it their whole lives and have a lot to say.
I have read most of the comments on this thread and am surprised at how offended some sound. One person said that Early intervention, dietary changes and biomedical treatments are not a cure for autism, but they are options that help, and when they come together in the right order, sequence, and amount, you can see some terrific changes in a child.
Autism has been likened to a puzzle, only pieces are missing that lead us to a cause and a cure…well, IMO, for what it’s worth, I believe my child w/ autism and many others if not all of them are their own puzzle within the puzzle…they each need a unique approach that is customized to their needs and problems. No two children respond to the same thing the same way. It is not unlike coming up with an IEP for the school only this is more like an individualized dietary, therapy, and supplement approach.
We started w/ the conventional therapies, speech, OT, and PT…and he made some progress, we have relied on the so-called experts to help our child, only to realize they have not a clue as to how to help our son. The doctors and therapist want ME to tell them what is going on w/ my son, and what I feel are the areas he needs to improve in. We did ABA for a year, and he made tremendous progress, but we weren’t able to keep that up. I finally realized that my son had more issues pertaining to diet and GI problems…we began making changes in that area and saw some improvement, we added in supplements or biomedical treatment and we are seeing more changes and it is making the conventional therapies we still do w/ him MORE EFFECTIVE because he feels better.
I don’t know what will work for your child, or my friend’s on or the receptionist’s daughter at the dentist my NT kids go to, but I will offer up what I know and hope that it will help in some way. No two children who are on biomedical treatments are getting the same program…there is NO COOKIE CUTTER approach to this problem.
In the end, it is up to the moms, mostly, who know their children best, what they eat, don’t eat, how they feel, what they react to, what causes problems, to use that info and be able to get them the help they need.
I rely on my ability to do research on what may help my son, the ability of my friends who are doing biomed to help me figure it out, and MY INSTINCTS which are God-given, I believe to direct the treatment for my son.
I think it is up to each mom to choose to do the same or NOT. I don’t judge anyone for what they choose to do or not do for their child, whether they have autism or not, we all choose what works best for us.
Here we go again. Why must we cling so tenaciously to “blame”. There is not a single medical issue in our lives that requires less than our full attention.
Whether it be our aging parents or our children, we must consider our gut, and then simply trust an unbiased professional.
I worry about Jenny McCarthy as a spokeswoman when she finalizes her Larry King interview by cooing that he is “cuter in person”. Her reality seems to be about career as well as her son. This is serious business, and given that she has put herself out there, circumstances propel her into accountability status. I do agree with Lisa Jo in that Ms.McCarthy is a potent part of the “mommy instinct” autism culture.
What’s interesting for me is that I wrote 3 blogs regarding Jenny McCarthy, first thanking her for bringing autism into the news, then following with disappointment in her rash statements. Her “Universtiy of Google” degree has encouraged a riot, which might do more harm than good, albeit unintentional.
Our biomedical has made a great deal of difference. We use B12 shots, TMG, Folinic Acid, VSL, Fish oil (pure), elimination of gluten and casein and all sugar except fruit, fresh foods, not processed at all!, Nystatin(yeast med made major difference.) As a mom, or dad a child with autism has to be put FIRST> The other children have to made aware of this in a loving way. Think of it as a child with cancer getting treatments….would you put other “things” or people first? The younger the child the better, so that other therapies can be effective. Biomedical takes months sometimes to be effective and different things have to be tried. Do NOT give up! Jenny McCarthy was a brave woman. She put herself on the line to help others despite the fact she would be questioned, and ridiculed. Give her a break. She is excited about her son’s recovery and wants to help. She just may not be as polished/moral as some would like.
I’m Rosa Diaz grandmother of Raul Granado who has Autisum, since he was in pre-school. The only thing with that is that the school district would shuffle him by kicking him out of school and sending him to different schools with children with different disabilities, and they would pick on Raul. Once Raul gets mad hi get violent. We as a family and helping my daughter Rosa Granado are helping her in every evening at 5pm. We retreave his PSP or Box games. Because if we do not, he will end up playing with thim in the wee hours of the morning. Yesterday at about 6:20 or so. I took away his box game from his room before he came home from a doctors appointment. He noticed the box out of his room and he was really upset. I to him to let him know that I had his box game, not my other daughter, Monica. He was yelling that he wanted the box, and now. I told him,he new the rules and I walked away. But to my surpise, I could hear him right behind me, then he grabed my neck and started to squeese, I yelled out to my daughter Rosi and Rosi and my husband started to restle with him to take him off of me. I would not breath. My throat hurts to swallow. My daughter and I have tried everything to get him to the Inland Regional Center for help. They provide a social worker and other programs. We all would appreciate if some how you Jenny McCarthy can help my grandson and our family. I do not want to seen Raul in a different situation like Jail for a moment of anger!
Our address is 1801 East “N” St, Colton, CA 92324- phone# 909-825-7088-Rosa Granado cell 909-835-8454 and my Rosa Diaz cell#909-835-8449.
I hope you as an advocate can HELP US!
Thank you,
Rosa Diaz, grandmother to Raul Granado.
I have a little boy who is almost 4. I have not had him dx yet. He has speech delays and major sensory problems. Low muscle tone, poor coordination and sometimes follow direction. Due to the sensory issues, he has had a poor diet. he is in OT/ST and feed therapy. He can say about 250 words, but only uses 50-60 regularly. I want him in wit “normal kids” when he starts k-school. I have been told that I shoulg be ready for that not to happen. I am sick, can he ever live a normal life??? Is he doomed?? Will he ever be able to go to college, get married have a job??? I really feel like I will not be able to handle this or go on! Does life ever get normal!!!
I agree with Liz Parker and Kathryn. You CHOOSE to be a Mother. When you sign up for motherhood you are faced with the possibility that you may not have a perfect little baby. I was prepared for whatever God decided to give me. He gave me a beautiful daughter with Bipolar disorder and a beautiful son with Autism. I will go to the ends of the earth for my children. This includes any and all treatments available. I do believe there is a “window of opportunity” and I will do everything in my power to get to it. My son is only three years old. My goals, dreams and plans ARE HIM. If you signed up for parenthood expecting something else, then you are a disappointment not only to yourself, but to your children that desperately need you.
I prayed before I ever had kids that god would give me children that have no mental or social problems. I believe that god ruined him. What if the best my child can do is work as a greeter at Wal-mart, how does one accept your child is doomed, ruined, a waste of human life? I just am begging someone to help me understand this.
Joan,
I understand your pain. I’ve had similar thoughts. But I look into my sons eyes and I see a beautiful happy boy. I’m going to do what I can to help him be the best he can be…and accept him, and love him for who he is. Accept. Love.