Navigating Emma's autism

Is Emma going to a regular school?There is always a reason when an autistic child gets upset or FRUSTATED,and it "blames" itself.Go to church (or to restaurant)beeing confident and no stressed and telling your daughter what it is for.Hope it is understandable...I am from Belgium.Your daugther needs friends coming to your home.

Hi Phil,

Tom K here in WPB. Happened to have cnn on this morning and they mentioned your blog. Just last weekend I did a 3-hour telethon for autism... brought in 250k ... those wealthy palm beachers came through. Tell your wife I said hi. Next time your family is down here, give a call.

Your story sounds so familiar.... I have a 7 years old non verbal autistic daughter. There is always the stress that she cannot tell me exactly what happened or what she feels.... Her nine years old sister is a blessing. The last time she went to the movies, we had to leve earlier because she cuold not tolerate the movie. The tantruming was on and off for hours. At some point I was crying, my daughter asked me why, so I told her " I whish so badly your sister was not Autistic and cuold enjoy movies and kids' stuff like you"and her answer was:
"It does not matter, mommy, she is fine the way she is, and we love her a lot"

Emma does attend a public school, and has an aide in the classroom. She has shown progress outside of school in having less sensitivity to certain places and activities. She freely goes to the grocery store now and likes to swim in an indoor pool at the YMCA, when she previously would only swim outside. She would not be able to sit still through a dinner or church at this point. But as far as Emma having more social contact, you are right. She needs more of that.

Phil,

I can very much relate to your comments and life in general. I have a 3 year old son who is a twin that is on the spectrum. I cry mostly when there is a program on TV, I go to an IEP meeting and generally faced with the realization of it all. The families faced with this need to support one another and therefore we are all supporting you in this journey. I am so very appreciative of CNN for acknowledging a whole day for the awareness of Autism. Even though I will have my box of kleenex next to me, I will be watching tomorrow hoping to learn a little more about how I can help my son.

Hi, your story is to familiar.... we have a 9 yr. boy, Conor. Typical development, regresion started at 18 months and got a diagnosise at 22 months. Advise from one profesional was...... except the fact that you might have to institutionalize your son.

Sorry, not an opption.

Our biggest chalenge now is education and the future of our son. We have done every thing we can on our own up until this point in his life and now we need to intrust our child(children) with an educatioal system that has no idea how to handle children with ASD and all related develomental disorders.

My quest now is to set up scholorships for ASD children to give them an appropriate education. I would not be able to live with my self if did not give my son all the tools that he might need to reach his full potential, what ever that might be.

Keep fighting the fight and never stop loving your kids or your spouse.

Peace, Tony

My daughter Willow never had dairy until right after her second birthday when my son was born. She was a delightful, verbal, affectionate and engaging child. We had no food allergies in the family and no reason to worry. She just hadn't had it up to that point because I nursed for a really long time and just didn't really think the breast milk of another species was the right food for her. When my son was born, my husband and family started to take her out for pizza and ice cream and give Willow her own special time. I decided to lighten up and go along with the idea. Within two weeks she seemed to come unglued – meltdown after meltdown. Inconsolable fits became the norm. Everyone who previously thought she had been a dream now said she was spoiled and suffering from acute sibling rivalry. I was quick to defend her and remind them that it wasn't always so, but was equally confused and wracked with self doubt. When my son was seven months old he had a life threatening reaction to dairy, ambulance and all. We immediately had him tested and found out he has a plethora of severe food allergies. This made me think of Willow with the dairy. We had her tested and she came up completely negative for any food allergies. I must have asked several doctors dozens of times if the behavioral stuff was dairy related and was always told "no way".
Things got worse and worse over the next two years. She was diagnosed with ADHD. Her eyes would roll independently of one another like a drunk person. She could not make or maintain eye contact. She was itchy from head to toe all the time. She suffered from horrible gas pains. She would not hug anyone or be hugged. She became aggressive and lost all sense of compassion for others and accountability. We were losing her. She would hold her and roll on the floor screaming for 5-6 hours at a time. I was pregnant with my third at this point. Part of what I wanted most out of that pregnancy was to share it with Willow who would have been the right age to really get into the whole miracle of the pregnancy thing. Instead I couldn't go near her because she would always be in a rage over something and often tried to kick me in the stomach. We thought we lost her. Our child was there in our home but was gone. It was devastating. I was aware that, more and more, the only thing she would eat was food made up of dairy. Eventually she would consume nothing but milk and would drink it with the fervor of a drug addict. Doctors kept saying that wasn't the answer and had no others. Finally I said to hell with all of them, and took her off dairy completely. In two days, TWO DAYS, she was back. It was like she woke up from a bad dream. It was like something out of a movie I would have scornfully mocked for being unrealistic and corny. The miracle was, it wasn't a movie. It was real and my Willow was back. ALL of the symptoms subsided over the first week. She went through a terrible chemical withdrawal and would wake up in the night screaming and crying for a drink of milk. My husband and I kept waiting for the other shoe to drop but it didn't. She was four and a half then. She is in second grade now and sees a developmental pediatrician now for subtle ADD and possible equally subtle visual processing. In addition, He confirmed for us that she does in fact, have a type of dairy induced autism. He also said that most doctors won't commit to such a diagnosis because there is very little scientific date to support it – mainly because no one out there is all the interested in collecting that data. He also said that he has heard this same story innumerable times in his career. He told me that Willow's acute level of sensitivity to dairy is not that uncommon, definitely exists, and goes misdiagnosed all the time. After all there really is no money to be made on this simple cure.
We have since met many families who have been through the same thing and are equally frustrated by the lack of support in the medical community. I am not saying that removing dairy from the diet will the panacea for all cases of autism. It may not change a thing but it only took us two days to know for sure that dairy was the offending substance. It is worth a try. Dairy was a life changing neurotoxin to our daughter. She was gone, we took her off, and she came back. It is worth a try. Good luck to all of you. Follow your gut instincts and never take anything anyone tells you as absolute when seeking a cure.

Phil -
Please continue getting the message out there...
Our son, Markus, is 4 and struggles with tantrums (among other quirky behaviors and few communciation skills). While the journey is long, we have learned to appreciate the lessons. Wife and I are writing to you from Mexico where we are traveling (Markus is at home with loving grandparents). The toll that the condition takes on your marriage and own personal/professional aspirations is incredible...and a trip for Mommy and Daddy is a welcomed, and needed, respite.

We are not escaping (we miss him so much), we are re-energizing our reserves. Being there for my wife is as much a part of what I am learning from this situation, as the intensive therapies that are reaching our son. My empathy and appreciation for you, as parent, is immense.

Continue the fight.
-eric

Hi, my 6yr old son JJ was diagnosed with Autism when he was 3-4 yrs old. The road is not easy but we believe worth wild. I strongly suggest that you go to church and restaurants. We go to church 3 times a week and eat out regularly. At first JJ, would scream and have other outburst at church until he got use to going. Our fellow believers, also made it easy for us as parents and the entire family to feel welcomed and comfortable. They would reach out to JJ and he is at the point today that he demonstrates affection to some of them. We started to eating out with him, by going to McDonald's or Burger King. We then eat at other restaurants when we knew they weren't crowded. Today, we can practically go anywhere and eat. He even says: Let's go eat. To us this is a huge accomplishment. As far as your other child, we too have an older child, Xavier his 8. It's very hard to be balanced as parents, but always reassure your son that you love him and whenever possible spend alone time with him. My husband and I make it a point to spend time with Xavier and we even do Mommy (Daddy) and Xavier day. On this day, we do whatever Xavier wants to do. This make him feel special. Also, having the children play and work together gives us as parents a break but also helps them build on their relationship. I can't even count how many things JJ has learned from Xavier. My husband and I feel that it's not easy having a family and it's harder having a child with special needs but we would not have it any other ways. It has helped us as individual and as a family in so many ways. Take care and stay focus. Wishing you and your family well.

I have an 18 yr. old son with autism. Until this past school year he was a kind and gentle boy but then he started to have fits of temper that took no time to get to a very destructive level of breaking things and pushing people. After trying to modify his school schedule (which worked sometimes) I found a homeopathic remedy that was specifically designed for children with ASD . It was a miracle. From the very first day of using it the destructive outbursts stopped and he is is old self again. It is from Natural Creations and is called Focus CP. It worked so well we actually took him on a plane for a vacation to Arizona just this month. He was wonderful the whole time even when our plane got delayed an hour. Also for young children- when Sean was 2-3 yrs. old he would not go to sleep at night and/or would wake up in the middle of the night for 1-3 hrs. At that time I found and aromatherapy bath for hyperactive children that had various essential oils and other minerals. It is non-toxic and bio-degradable. It it called Aromasaurus rex and is put out by Abracadabra in California. From the first bath he fell right to sleep when put to bed within 1hr. of the bath and he stayed asleep. I did this every night for a year till eventually he did not need a bath every night. All this when he was 4 yrs. old. Every since bedtime has not been a problem. I hope others may be able to benifit from what we have experienced. I welcome any questions.

Thank all of you for your relating your experiences, suggestions and expressions of faith. Tom-it was terrific to hear from you. Say hi to everybody down there.Elena-your older daughter is wise beyond her years and I'm certain will continue to be a great support for her sibling and you. Lori-thank you for watching. I'm very glad the network has given us extended time on this project. I wrote lead-ins and teases to seven autism stories yesterday and by the end, I, too, was reaching for the Kleenex. Tony-it is tragic that a professional would give you such advice. I am so happy you listened to your heart instead. My prayers are with you for your quest. Eric-it's terrific to hear that you and your wife are getting away. You really need that to recharge and be fully there for Markus when you return. I was shocked to learn today that my colleague, John Dear, whose blog you can also read on this site, has not been out on a date with his wife in 5 years. We're gonna have to do something about that. Madeline-I love the idea about having a sibling's special day, and I agree that kids with special needs learn as much from siblings as they do from parents, teachers and thearpists. Vicki-Thank you for passing on your remedies. Hopefully they will help others.
To all of you, I'll just repeat what the late Jim Valvano said about the fight against cancer: "Don't give up, don't ever give up."

Phil.... "You learn to serve others and not just yourself."

What an incredible impact that statement has that your son Conor made. And what insight he has gained into truling loving someone!

I am a single mother of 4 children, all differently-abled, my youngest – a son – with autism. My 16-year old daughter, invited to speak at a public luncheon on life with an autistic sibling, spoke not about our struggles with her brother when he would bang his head into the wall and leave holes, nor about how frustrating, crippling, or tiring living with a severely autistic child is as chaos reigns even on the best of days, but about how her life has been changed for the better by living with and loving her brother. How every small positive step in communication or behavior is a victory for him – and us. How courageous he is for simply getting up in the morning in a world he doesn't understand and his senses won't allow him easy integration into, and how he has taught her so very much in the few short years he's been with us.

I'm not sure about you, but I am grateful that I was blessed not only with my son, but with my teenager who reminds me, when I am at my lowest ebb, just how truly blessed I am to have the children I do... all of them.

As a father of a 2-year old daughter with autism, I have to say thank you to CNN for all of the coverage of Autism that I've seen already these last few days. April is Autism Awareness month...let's keep the momentum building and keep increasing awareness! My daughter was diagnosed just a few months ago, so the reality of what she is facing has only started to settle in. We've seen a lot of ups and downs – from the joy of a new word being learned to the heartbreak when you find out that your insurance will only cover 30 speech therapy visits and occupational therapy visits each year, not to mention the denial of coverage for ABA therapy altogether. So kudos to you, Mr. Riley, and kudos to CNN for keeping the spotlight on autism! Thank you.

Dear Phil and others,

As one can see from this blog, autism is a very diverse problem—the disease itself is a spectrum disorder, with a wide variety of symptoms, and it affects families in many different ways. I am very excited that CNN is doing an entire day-long special about autism tomorrow.

However, there is an ethical issue in the news industry and the media in general that I would like to call attention to. This is the very narrow, limited way that the media portrays such a diverse disorder. For example, it seems that most of the autistic people that are shown in the news and in the movies are very high-functioning (like in the movie Rain Man). I don’t think I have ever seen a nonverbal autistic person in the media or others that are very low-functioning.

Also, the kinds of stories we see about autism seems very restricted. For instance, I have noticed that most news stories are about the vaccine debate and how hard it is to diagnose autism. There are many other complex issues about autism—such as strains on families, hardships in education, and other medical/behavioral problems—that are rarely, or never, addressed.

This issue is an ethical one because it limits the way our society views autism.

Maybe the reason why we see a narrow view of autism in the media is related to news values. Obviously, the vaccine debate makes a good news story because it has the element of “conflict”. For television news, it is probably a lot more visually appealing to show someone very high-functioning than an autistic person who can’t talk.

Despite news values, autism should be portrayed as the diverse spectrum disorder that it is. The media (and CNN in particular) should take action to show the different forms of autism and the many issues that surround it. Also, parents and other family members should write to media-makers to help them understand the complexities of autism.

I have a nonverbal autistic brother. He is one year younger than me and lives in a group home.

Thank you for saying that Brittany- I agree with you 100%. My child is low-functioing. He is 7 and completely nonverbal. I blog at autismspot.com about life with a child like mine.

I dont agree with Brittney, the only autistic people they show in the media are the ones where language is delayed. What about the rest of us? Both my son and I have high functioning aspergers syndrome , we suffer severe social anxiety panic disorder he has Touretts syndrome, epilepsy and opoistional defiant disorder, I have auditory learning disorder right and left temporal epilepsy, right hemisphere brain damage, we both have adhd-c. Wow what a deck of cards huh! The media portrays us as successful and doing so much better than the "low functioning end of autism". Untrue I live off of S.S. disability most of the time we dont have enough food, ever day is a battle to fight with a world that is irrational, lacks logic. There are a hundred if not more organizations who receive money for the education of neurotypical individuals, researchers. There is nothing for those who suffer. My son is lactose intolerent medicaid does not pay for the pills. He refuses to change his diet it is part of his rigity just like "autism". He just learned to ride a bike, he is clumsy, says inappropriate things, cant communicate with others unless it is a topic of intrest to him. He is also brillant creative has the ability to learn at a lightening speed, wont do his homework, gets punished everyday at school. .This world that "WE THE AUTISTIC INCLUDING ASPERGERS IS VERY DIFFICULT TO LIVE IN" The hypocrisy, mind games, hoops that people make you jump through so that you are demoralized. I dont understand this world it is not my world, in my world, you treat people decently humanely. It is a sad observation on society when charieties are set up to help those who do not have the disorder. Where is the logic in that?

Hi Tim, i know what you are going throughi have a grandson with autism. his name is micheal he is 5 with big pretty brown eyes and a great big beautiful smile. he also can not talk. he has lean more since he has been in school this year.he is in a small special education class.he is the only one in his class that has autism and can not talk he is also not potty trained he is scared of the toliet.i wish we had a school her for autisic children someone who would understand micheal needs more and would know more about how to teach him and tell us how to teach him. we try to teach him but dont if we teach him the right way that he understand.the number of children with autism is growing and growing. and it hurts very bad. something is causing this becasue to many children are getting autism.i do not believe it is a gene either. i hope they find out soon.god bless us all

Hi Phil
Thanks for having letting me know a little bit more about Emma.Yes it could be too long for her at the church(or dinner) but you can try to make it by telling her when she needs to go out she just have to tell you...hope you understand what I'm trying to say.Have a nice day!

Have any of the commenters every investigated the product, IMMUNOCAL? It is a glutathione precursor that is the subject of an autism clinical study now at UT Southwestern. Worth the time to research. Lots of great results have been reported.

On World Autism Day, I wanted to share these links to documentaries about my son and our family. Autism is such a HUGE issue for siblings as well, and my oldest son (18) has written a profound poem about when his youngest brother had to live in an institution for four months.

Please click on the links below to see our story, and know that I'M GOING TO FIGHT UNTIL MY LAST BREATH FOR OUR CHILDREN, FOLKS!! Hang in there, and when you think you can't last another moment, just focus on taking your next breath......believe me, I know - and I understand.

TVOntario documentary
http://www.tvo.org/cfmx/tvoorg/tvoparents/ index.cfm?page_id=145&action=article&article_title_url=TheEarlyDaysofAutismMeetParentsLikeYou&article_id=3341

TVOntario documentary and sibling's poem
http://www.tvo.org/cfmx/tvoorg/tvoparents/index.cfm?page_id=145&action=theme&theme_title_url=SpecialKids&theme_id=42&section_id=2

'We're Not Going Anywhere' documentary
http://www.youtube.com/watch?v=YqRM5OGnHIQ

Autism Blog Spot
http://soaringhorse.blogspot.com

The Best to You and Yours! Hang tough!

Susan Fentie, RN
Co-Founder
Ontario Autism Coalition

Two comments: 1) I hear much about genetics being a major identified factor related to autism. This seems like a red herring. Has the gene pool changed that dramatically in the past generation as has the number of autism cases? Extremely doubtful. Granted maybe in the distant future gene therapy may lead to a possible cure. 2) But in the mean time it is hoped that the lion's share of research monies will be applied to finding the enviromental triggers. They might start with looking at the Amish. It is known that their children suffer far less than the 1/150 rate of incidence common among the general population. What enviromental factors do they lack which keep their children from being "triggered" for autsim.

From what you write Emma seems to have made a lot of progress and I am sure she will continue to do so, people on the Autistic spectrum have a tremendous desire to achieve. I hope that your and your wife can stay strong and continue to give Emma and each other the needed support. I have Asperger's and found school to be soul destroying. I needed to learn in a different way. However that has not stopped me from becoming a sucess in the mainstream world and I do wish I could 'come out Aspergers' to my employer. I dare not for fear of misunderstandings. I wish that when Emma reaches my age the world will be a better and more accepting place for people with Autism.

Phil,

Keep fighting the fight for Emma. As exhausted as you are your wife (and Son) might be, you're going to be her best advocate ever..... As parents, there is nothing we wouldn't do for our children.

I have a 6 year old boy with Autism named Max. The crazy thing about all these stories is that all of our ASD children are so different, although there is a common disability. Max's issues are mainly his hyperactivity, EXCESSIVE stimming, and lack of social know-how. In the end, like his ASD peers, it is difficult for Max to be mainstreamed. Luckily for us though, Max is generally a "happy go lucky" child. What I find with Max, unlike his typical peers, is that Max needs to be taught everything. However, once taught, he can do almost anything. My wife and I will not stop giving Max all we can because we know he's so capable of achieving. I know that Max will have life long limitations, and I have come to peace with Max's limitations, but Max still shocks me from time to time. Shocks me in a good way when he does something I didn't think he'd ever do.

My only advice I'd give you since your case is as unique as Max's case is, is to not ever give up on Emma. Bring her to church (I'd expect your church family will be accepting), bring her to restaurants, etc. Emma will eventually learn how to be socially appropriate in these places. It may take some time, but she's going to shock you one day when she understands. If long sit down dining is difficult, start off slowly at a fast food restaurant so that you can be there for 5 minutes, and build on that. Also, we often find that we spend time with other families with ASD children. These families are great to be with because they "get it". This way, when Emma has a tantrum, there will be no ackward looks, questions, etc. They'll do the best thing possible for Emma by ignoring the behavior.

I hope my advice helps in some way. As long as tomorrow gets better than today, you'll know you're on the right track.

Enjoy,
Adam

It is so heartbreaking. I hope products like http://bibadee.com/ continue to make a difference in these kids lives through playdates.

The Floortime Approach (Stanley Greenspan) is really making a difference in many of these kids' lives...and it's something you can do by yourself without a therapist if money is an issue.

I share the same issues with my daughter, she was diagnosed with Autism in 2003, and is also a twin. On top of the Autism, she suffers also with epilepsy. I'm searching for hep from anyone who can help me figure the best plan for my daughter.

Some comments paralleling another article here about a CNN producer who also learned late about Asperger's.

I'm 48, and learned about 7 years ago that I have Asperger's. It's isn't a complete explanation, but this seems typical in anything on the spectrum. There are many symptoms that are in the vicinity, and which set any of us gets seems to be somewhat random. Researching Asperger's, there are characteristics which aren't explained. It is likely that I am Savant as well. For the most part the symptoms I have are not severe, but the place they have the most impact is anything having to do with selling. I cannot sell myself into a job, and I cannot sell myself into a relationship. Perhaps Autism is partly to credit, but I am very seldom lonely. I always have lots of things to do. But being alone is almost constant.

It seems that my life has been driven down Materials Science and Engineering, anything and everything related to that field. Even things which may not seem like materials, such as cooking. I started cooking at age 5. I am willing to attempt anything I see on the FoodTV network, and it will usually work out. I am able to grasp all kinds of things related to the physics and chemistry of materials. I recognize that either from a pure chemistry or pure physics point of view, there are problems I do not see and would rather someone else deal with. I am capable of making use of their results in trying to produce materials that engineers use to make "stuff".

What is kind of strange, is that most people employed in this field, are much more specialized than I am. It doesn't matter to me that something is a steel, or not steel, or a ceramic, or a polymer. I grasp them all.

Diagnosis is no help that I can see, in an adult, it is only confirmation. The problems you've been experiencing are not a statistical fluke, there is a real reason for them.

I can agree with having a sense of humour, but I describe it as persistent. In me, it is almost always close to the surface. It also tends to be a bit strange. I've spent so much of my life involved in math and science, that I find lots of things in math and science amusing.

I don't form images in my head. Remembering people is baffling. I cannot describe people to save my life, but somehow I can recognize their image most of the time if I see it. If you change the surroundings the person is in, I may not recognize them. I can sort of feel equations. Being in engineering, this is useful. I see two emotions in people, happy (upwards parabola) and not happy (everything else). However, how I interpret not-happy tends to change from person to person. One person I asked about this, always appeared to be angry as the not-happy emotion. She said that she was seldom angry. I guess I just confuse things that are "not happy". I navigate by landmarks, and in drawing maps, something I am good at, I will list landmarks. But I don't see the image at any time.

Eye contact is supposed to be a problem, I've never run across any reference to light intensity. In my case, it fluctuates and is dependent on light intensity. In a brightly lit room, eye contact is hard. Lower light levels make eye contact easier. In any given environment, I can force myself to maintain eye contact longer, but at some point I still have to look away.

I don't know if my senses are any better. Too much time in chemistry labs has damaged my ability to smell. As a youngster, I had above 20/20 vision. By grade 10, I needed glasses. At times, I can feel if electricity is flowing in some object. As a youngster, I preferred very bland food. These days I have a pretty high tolerance for garlic, chilis, ginger and many other spices. I am not crazy about licorice.

Although I am very capable, finding employment has been a terrible problem. I could very easily be among the best materials engineer/scientistist's in the world, but instead I have been unable to impress anyone in my field of expertice that I am actually worth having around. I have always known that I am capable of making a great deal of money for a potential employer, but I have no way to find work.

To me, current efforts in helping people on the spectrum (and other
learning disabled people) find employment look to be functionally like, "If we give you some money, will you hire this learning disabled person?". For 4 extended periods in my adult life, I have been involved in studying the employment process. I never knew how I got drawn into this, or why I had problems, until this last time. I am a terrific scientist and know lots of math. The problems the learning disabled have in finding employment are not some side effect of being learning disabled! We just happen to be more sensitive to problems endemic to the entire employment process. Fixing the problems for us, makes the system better for everyone.

What can a very good engineer/scientist come up with studying employment for 6 months? The advice about selling yourself to someone who has special training (HR) may be accurate, but it actually makes problems worse. The employer does not want the best salesperson who knows something about X, they want the best person who knows X. Experience can be acquired by purely cognitive means: people on the spectrum often spend more time in heavy cognition than others. Experience cannot be measured by a duration of exposure to an environment. Job applications (resumes and CVs) are semi-quantitative at best. In general, there is no quantitative data in a job application. We need to reduce the importance of the job interview. There is entirely too much opportunity to practice discrimination of all kinds in a job interview. Testing of qualifications and various industrial psychological measures is a way to introduce more quantitative data into the quest to rank applicants in the employment process.

Maintaining optimism has been a struggle. Although I technically do not come from a single parent family, functionally it has been the same. My Mom has been a saint! I wish I could do more to thank her.

My prayers are with all the parents on this blog. I ran across this video with another parent who has successfully treated his son from autism. Hope this helps.

This looks like a promising therapy! http://youtube.com/watch?v=yXwScWrYBUU

This focus on Autism is really incredible. I find interacting and sharing experiences with other parents on a regular basis really helpful. We can all learn from each other. One place that I go online to find other people like me dealing with Autism is Trusera: http://www.trusera.com/collections/Autism

My 10-year old daughter has autism too. Her younger sister has a disabiliity completely different from hers that makes her medically fragile as well as extremely delayed. There is never enough time, energy, or resources. We live in a small rural community that does the best it can to help us. My husband's and my marriage is not about us at all as we have no time for each other. We love our children.

I'm glad all the organizations are out there to search for a cure, and the therapies that are being developed sound good. But they mostly aren't in rural areas and the urban programs aren't accessible for lower income families in rural areas. My school district does the best it can and we have been very blessed in the special education teacher at our elementary school, who loves our children and does everything she can and learns all the time how to help our daughter with autism, who has made a lot of progress with her help.

I wish one of these foundations would specifically target helping rural school districts with children with autism in getting extra equipment and resources. I can't travel the distances required to get my daughter the extra services that might make the difference. The needs and requirements of my other daughter make that impossible. I can't get her everything she needs either.

The most distressing thing someone ever told me was that I would have to move in order to get services. It's bad enough to be told there are no services in my area without being told everything my daughter has ever known is worth nothing to her well-being. I'm glad people with money can do all these special things, but we can't.

My prayers are with all those who live with autism, and those who know both the blessings and the difficulties that come with caring for a child with autism.

Dear CNN,

Your dedication of the hour 12 noon to 1 PM (EDT) to the enlightenment of the public regarding Autism is the most outstanding piece I have ever seen on Television. BRAVO to all those in your company who had a hand in this fabulous presentation.

THANK YOU so very, very much!

Tom Paul

Just finished writing on CNN's Newsroom AM show, and feeling gratified in helping to bring so many stories of inspiring people to a wide audience. In addition to the pieces we ran, our guest bookings crew did a super job bringing in people like Suzanne Wright from Autism Speaks and Doctor Roy Sanders from the Marcus Institute (he's treated Emma). His message of parent empowerment is a great one to hear. Being a parent of an autistic child and having had his own disagreements with his son's pediatrician lends so much weight to his idea that parents usually know what's better for kids than professionals do. Also, the sweet story of autistic film director Taylor Cross and his mom Keri Cross. When her dreams of his life died, his were born and continue to develop. A loving family.
Thank you again for all your responses.. Marnie-I do fell blessed by both of my children as you do by your four. Thank you for sharing what your 16-year-old said. Dave–We appreciate you watching. Keep us on throughout the month of April and beyond. I'm sitting next to the head of our medical unit, and she says we'll be doing more stories thoughout Autism Awareness Month and beyond. As far as Newsroom AM , I know we'll have new stories on autism tomorrow and Friday and Sanjay's House Call Saturday and Sunday morning is debuting a piece. Brittany-your critcism about media coverage has valid points. I agree that too much focus on vaccines takes away from other important issues.As a parent of a child with serious speech delays, I also feel we need to do stories on more than just higher-functioning kids. I'm watching our noon (et) special now and I think we are focusing on more kids of all ranges of the spectrum. Dawn-I also understand your criticism about the media simplification of higher-functioning people somehow having it "easier" than others on the spectrum. I will pass on your concerns to our medical unit. You and your son are very courageous. Cynthia-we have some autism links on our cnn.com autism page of various institutes that may have information about special needs schools. We all know that finding the right school is a challenge.
Joelle-I understand what you said and that is a good tip. Karen-I have not heard of that particular product. Susan-thanks for sharing your link and your words of support. Horace-Two very good points I wil pass on here. DJ-your few words touched me deeply. We have a blog on this site from an employee who wishes to go anonymous (if you do a search for "alien" you may be able to find it-that is how she titled it) who has Asperger's and has some of the same concerns you do. I just spoke with the medical unit head and this "coming out" issue could turn into a story for us. Thank you for being expressing yourself. Adam: That is great advice. We'll work on it.

My sister is now 51 and still struggles with autism,she depends on her family which is my other sister and myself for support. We are from the caribbean where autism is not treated but is known as having a disability .My mom who was her problem solver has since past .
I always remember my mom complained about the vaccine which caused my sister's autism. At that time it was not known as autism, but referred to as being retarded.
I believe that there is really a link to vaccine causing autism. My sister was 2 when my mom notice the changes days after her shot. I hope that some day we in the caribbean will recognize the disease and like the U.S
will set aside that day as world autism day. Cnn has provided me with much information about the disease which will help both my sister and myself in the future.Thank you CNN.

my prayers are with you..my grandson Dominic is turning 8 on April 7..he is Autistic...and aince the day he was diagnostic with autism almost five and half years ago...my daughter a school teacher start her fight against autism...she read and research everything about autism...she look for help and thanks God after his doctor tell us that he never can talk...now he talk he is and look like normal kid...my daughter quit her job to dedicate 24/7 to Dominic...his sister is 10 years old....and she too help alot with her brother...The only problem Dominic ishaving his behavior and until today trying different medication went he want somthing he destroy anithing is his way ...he allready break 8 television different size....Dominic is at special school..doing great he is very smart....he read ,write, draw, search the web incredible he goes to searching different countrys...well is amaizing...but his behavior is incontrolable....and my daughter has 3 nervous breakdown...she is a single mother and i admire her for her patience and super love....i dont know what medicine he can take to control his behavior...he is taking respidol....and he is overweight...because he dont stop eating..all he want is Mac Donalds....Burger King...after dinner and if his mom said no...he start trowing and destroying ...this an every single battle with Dominic he is very strong....and my dauhter is afraid for me because he can push me easy...i love him so much and I know how hard is this for you my daughter and all the parents of austistic kids...but they are here for a reason ...and my God Bless you all for your patience and love...keep the fight for the cure...

I've read all the stories, and my heart goes out to all the families that are dealing with this. I also have a two year old on the spectrum and I can relate to many of you, but apart from all the heartache I feel like I need to ask: What is being done to change the laws governing the developmental disability area? Our children are receiving therapy ( if the insurance is available!!) until they reach 21, but what is supposed to happen to them at that point?
We need to make our voices heard, so keep fighting and keep supporting each other.

Hi
My name is Maureen Kelly from the island of Aruba
My daughter has been diagnosed with Autism
She has been getting the CARD therapy, speech therapy and she is doing very well. I have cried a lot when she was being discriminated and here in Aruba autism is very rarely talked about. But now I feel that all has happened for a reaso. Today I am more patient , for sure I am more understanding for everyone( including families, co-workers etc). We are all not the same. And the best i liked today of the show when they were interviewing someone with autism and they asked him what he thinks of normal people and he replied:" what's normal anyway"?
I am happy to have been in this autism world. Would love to open a school here in Aruba with the right therapists etc. Take care you all..Maureen Kelly..Palm-Beach Aruba

Phil, your blog about Emma and the family is fabulous. You are doing so much to not only bring up and care for a beautiful, wonderfully happy child who we all love, but also to shed much needed light and attention on this mysterious condition that is affecting so many around the world. Thank you for all your efforts and hard work and most of all thank you and Margie for bringing such a wonderful child into the world.
Emma's aunt.

Phil I think it is great that you are able to do so much for your child. But like alot of parents are in a position of wealth thank heaven for Emma. I have been watching CNN all day, I have not seen one story or organization on to discuss helping those who dont have the funds. I am about to fight the school district in Massachusetts so my son can go to a school for chidlren with Aspergers sydrome. I want them to pay for it. I like my son have the same neurological disorders as I mentioned in a previous blog when meds had worn off and it was not written with to much logic and was all over the place. I live off of $1989.00 dollars a month, any therapists in massachusettts only accept cash. After I pay bills, we have to go to foodpantries for food. I really think its critical that this side of autism be addressed, it is my inkling that most with autistic children are professionals and can afford to support a huge financial undertaking. I do not mean to lessen there loss and hard work. I am intrested about what you think, I want to send Ryan to pathways academy in Belmond mass its affilated with McClean Hospital and Harvard University. It costs 85k a year. Ryan has such difficulty in public school he comes home now and says he is depressed.

Sorry Dave correction Belmont mass

I have a daughter that is now 8 years old. In November 2006 she was in diapers, unable to speak, or even make eye contact with anyone or anything. She was in need of eyeglasses but unable to tolerate them on her face. At that time we found a clinic in Costa Rica that was willing to take the chance in treating her with Adult Stem Cells. She was the first child treated, and with great success. The first day that she got treated was the first night that she had ever slept through the night, and the last night that she ever wore diapers again. She has had two full treatments and continues to inprove. She is now in a regular private school in second grade. She is now able to read, write and even do math. She has complete eye contact and is able to carry on a conversation with anyone. her eye sight is now 20/20. Thank God we found our lost little girl.

Your daughter is beautiful. So is mine. Katie is 29 years old. We moved to NC because of that wonderful gift to parents of chidlren with autism, Eric Schopler and his TEACCH program at UNC. We were desperate as so many parents of older children are. We, meaning Katie too, got us through those so difficult adolescent years. She is verbal and funny and full of life but so autistic and will never be able to live without help, 24/7 love. And so as we aged and our own deaths became a reality (65 and 73) we had to do something. We founded a nonprofit ( web site aci-nc.org) that condensed our understanding of what a person with autism needed to live a life withour anxiety and fear. a lift in which happiness is possible. We found over 100 families who were is the same boat and now we sturggle to make this a reality for at least some adults with autism. Our daughter ran to our car as we left her at her group home for the first time. She said , Don't get old. What could we say. Shie is a beautiful spirit and how can we leave her in a world like this? Genie

Hello Phil,
I remember years ago before Emma was diagnosed...we were on the playground talking about the kids ...the doctor just kept telling you not to worry about Emma's lack of words....I told you the same thing. Then you looked at Emma and said "she's in her own world." Who knew how telling that observation would be. I'm so proud you are doing this awareness day so parents and friends and doctors will know more so children with autism can get an early diagnosis. You and your family are a treasure!
xo
meg

Wow. You have walked our walk. Our daughter is 15 and started having a hard time like your describing when she was about 10. Before that she was simply moderately to severely autistic but had been normalized to some degree through intensive in home ABA and preschool in a specialized classroom. She did well in kindergarten because of the intesive training but wasn't able to thrive past first grade. She wasn't able to deal with things. Then we figured out she was actually having auditory and visual hallucinations. It took quite a while to figure that out. LIke she was entering 4th grade when we figured it out. The first doctor to see it couldn't believe it..."My God she is hallucinating" the doctor said. So after years of refusing meds for her we had to try because she was becoming injurious to herself and then others if they tried to protect her from her hallucinations that were causing her to hurt herself. Those meds didn't work...for several years the med trials did not work. But we kept her at home anyway because she is part of us. We went through years of her hell with her instead of placing her in an institution. It was my husband, myself and a sister and brother who had the journey with her. It got to the point (after four years) that I felt like she was dying. She never had a spare minute away from her torment. It was constant hallucinating, or repetitive behavior. She was absolutely out of her mind. A doctor who had followed her well for the many years agreed to try one last thing...that was after all others had said it is time to give up. She has been on lithium and risperdal. Lithium controlled the hallucintions and risperdal has controlled the aggression. Also, while my daughter was having the extreme battle with psychosis she came to have an understanding about Jesus because all she could listen to was Christian radio. Any other station brought about violence due to the beat of the music and perhaps the lack of meaningful message. One day as she and my husband went on a drive to kill some time they drove by a chuch and our daughter said "look it Jesus house". He just said Amen. We love our daughter and accept the journey. She has taught the whole family a whole lot. We have been grateful that we have been sustained enough to have the grace to go through it all with her. You, my friend, keep up the good fight.

Take Care,
V Bruce

Thanks for sharing your story!

Be Aware, Show You Care.

Join my rainbow of friends...
Joanna K-V
http://www.AisForAutism.net
http://www.aisforautism.net/videos

I worked for a woman who had 3 boys. The oldest one, was what I think was autistic. He had a habit of rubbing spit on everything. He wanted everyone to hug him. The next oldest was on a strict diet to prevent him from becoming the same way. The youngest was OK. the woman told me that the oldest boy was OK for several years but slowly changed. The doctors said he had something wrong which prevented his systen from processing protien which burned his brain.
The first two boys had the problem which was the reason for the diet.
Perhaps it's something to consider.

Hi Phill , God bless your Angel,that is what I think our children are, becouse they are pure from our out side world,some times we think that it is bad but think longer and you realized that it may be a blessing. I hope my point of view can help some parents to easse their feelings, I was very ungry,depressed, frustrated and in denial after my son's diagnosis and always looking for some body to blame,I was so focus on my own feelings that I wasted my son's pressious time,but I think we all need to heal and little by little God showed to me the way to get to my son ,and it was accepting and loving him for what he is not for what I expected him to be,it was a process but I realized that praying every day for the people and the way to help my son was the key,and God sends his Angels every day to do so, in this way I can focus on my son's strengths and let the therapist to help him on his weak areas,then we can work as a team. Alex was diagnosed at 20 months of age with severe PDD (NOS) what when he turned 3 years old changed to very low funcionig Autism, after he regressed, he lost all his fine motor skill,so he was fisting like a newborn for about a year,he also lost all his verbal and socila skills, that means he needed one to one assistence all the time but all that is turning arround Alex is 6 years old and he is swimming,he rides his bike without training wheels and skates since he was 4, at 5 he started agressive skating (they skate in ramps) He's skate at parks like Brian Piccolo (Broward),Kona (Jacksonville), Treat (San Agusting)and Vasn (Orlando),all this are proffesional parks it is amazing I still can believe it, but it's real our kids are "very especial children" I want to encourage every parent who reads this note to work hard on your child strengths you'll be amazed! Our Alex still has verbal limitations,but the words are coming along,his reading , writing and math skills are at K level for general ed.Our son is being an inspiration to us and he teaches us every day about patiens,tolerance,understanding and courage because every time that we think how difficult is to be Autistic all the schedules and commands to follow, all the rules and the coartation to the expontaneous thiking and acting that he goes thrugh every day makes as to respect him more ,we are sure we could not do that every day. God bless you all
Norma and Alex

hello Phil, I had tought about something.If Emma can sent e-mails, she can do it to me,just to "talk"....Hope you understand..
Go to church sunday and make it as a "family day".Hope you understand(haha).God bless you and your family.

My son has not officially been diagnosed with autism yet – however after viewing so many cases on CNN I am quite convinced that our bundle of joy (2years 9months) displays 90% of the behavioural signs.
Unfortunately our marriage has not withheld pressures from constant hospital visits and the "expectation" of having a "normal" child.
Our son Jaydon is "my hero" – the best thing that has happened to me and my wife.
What a great feeling when I realised that I'm not alone in this unsure world of autism – I think it's fantastic that CNN has taken the initiative and brought so much information forward.
Thank you very much.
Andre van Tonder (South Africa)

I have read many people's reports about how school seem to be soul-destroying of children wiht ASD. I also have found this to be true. It seems the schools just want to get through the day. Also they want children to conform to the norm–so much for multiculturalism and diversity. I am an art teacher and not only have an autistic son but a niece as well and taught at an alternative school where many of the children (grades 7-12) had "slipped through the cracks" and hadn't acquired the skills of children their own age. Many of them could not cut with a scissors, could not draw a line using a ruler, suffered from many visual perception problems and yet they were not held to be special needs. In order for them to get the art credit they needed I had to adapt the district's art curriculum and get it approved. I did and have since been developing an adapted curriculum for autistic high schoolers. My own son has said he wants to be an artist. He creates things out of objects he finds at school and elsewhere. He has done this entirely on his own, which we find amazing as he is not copying anything he has seen. If there is anyone out there who is interested in this same topic I would be glad to hear from them. It is so important to capitalize on our children's strenghts and let them be seen by others. I am in the process of having an art show of Sean's works at his school. Students and teachers have seen him picking things up off the floor-now they can see there is a method to his "maddness".

I have been watching and on the computer trying to seeas much of the cnn day with autism as I can get. I have a 5year old grandson that has been diagnosed with autism since he was about 3. Caleb is a blue eyed blonde who is speaking, but not always clearly, he smiles and hugs and kisses...he also cries, has meltdowns, and is easily frustrated. We all live in Northern NH where there are no vaciities, no one with any expertise in Autism. no workshops , nothing to train our staff in the public schools. All we hear from the school was Caleb tries to get out of his work, he is in a power struggle,he needs to change his behavior, and on and on!!!!I could just scream..Doesn't anyone get it? Help Please. I work in the public school system and I feel like I am on a crusade by myself..Caleb is not alone, we have several children all diagnoised on the spectrum!!!! Isn't there some one out there who can help us up north?

Hi...

I have twin boys with autism..they will be 18 in a couple of days.
We have the same worries as you do with Emma. Friends, being accepted for whom they are, what will happen to my boys in our old age etc...

It is a struggle for every parent with a child with autism.
I just try to live new everyday...laugh Alot because if you don't laugh you will end up crying. Be thankful.

Suzann

When my son was born by motherly instinct I knew there was something that was going to be different about my seventh child. I want my world to surround him more than anything. After birth I held him in my arms and I told him in my loving but strong and sincere heart "be strong, I love you." My voice calmed his cry. As soon as the nurses took him my only thought was I need to tell him more and I want to talk to him with the holy people and the great father sky. My newborn at 5lbs. 1.5oz. At first I refused the first injection, but accepted, and that was the last I heard my baby cry.
I never heard of Autism nor did I have the faintest clue as to what I would face as a mother. But, I did notice a difference from my other children. If I had not been blessed with other beyond average children, and had this experience as a first, "my new born baby would have been the best baby, good baby, no colic, just unbelievably observant."
Finally, he's in my arms. Days of his life went by and I told him often that he needs to make noise and he needs to cry for now until he can speak or make sounds like talking voices do. The only hope I had at his times as a new born was to follow my culture in touching him, messaging him, singing to him, swadling him in his security blankets, constantly interacting with him and teaching & telling him about the world, earth, people and his family. Much of it was to show strength as a baby–looking around, watching, and just learn about what is happening.
Soon, about 10 month's his first words "cup" and pointing to the kitchen sink. I stated to him, "you want water?" and the response was giggling and clapping, ' FOR THE FIRST TIME!" I cried and laughed, we rewarded each other, and that was when I got my first hug. I thought my other children's accomplishments were great, but this took all 'encore's' from the world. Later, at 3 or close to four my child was speaking or gibberish words, which later turned out to be spanish. "WHAT?" "Spanish?" But, we're Native American Indians. At the later 4 years it was a mixture of Spanish, Dine', and English–and making sentences here and there. At times when swinging, activity, or out of the blue. It was a wonder of confusion, but as MOM, I loved my child for this uniqueness. "IT WAS SUCCESS!" This kid is intellegent after all!
My worst night mare was when headstart began. All the other children were professional speakers, I didn't mind I taught him alot over the five years, and the only thing I had in mind was–social groups, "yes!". Well, after getting beat up by other bullies, and my child couldn't speak out and didn't know how to tell what happened, yet alone in the Autistic world to hurry and speak all three languages at once. The turn out 'we always got the blame.' Later, bruises on the cheeks, legs, and a deep laceration kept getting reported. Nothing ever was done, these ignorant non-certified teachers focused on baby sitting not education or re-directing. Soon, I pulled him and began to continue to teach my child at home again. he blossomed even more, and I kept researching the internet for "types of disabilities". Finally, I thought to myself that I wasn't finding anything that fits this unique child and this time I typed in 'the latest un-named disability', lowing behold, "AUTISM."
I couldn't stay away from my computer. I read everything over and over. I observed and was ecstatic to know that I was elected to reach out to my own child. And? "I did it!"
I am fully aware and kept up with the update of Autism. I remained anonymous–why? Because Headstart showed me how little people are pushed around and set aside and often they get shut out of the environment even more. So, it was a trust issue. No one knew my child but me! Finally, in 2008 I met up with a trusting teacher, a trusting school psychologist, and it was the big test analysis–diagnosis? "Autism", to me, no gig deal I knew it, now its just lets get some more resources and allow the "experts" help.
So much for that! After all ll the years I worked with my child he began to regress at school. It was as if my child was in 'quick dry sand and was getting burried by the movement around the Autistic world'. I took all measures–resigned from my "new first job" since I don't remember, and began my first fight with the school system and began to re-teach at home–PROGRESS and SUCCESS again! To NO surprise he advanced even more.
There's more, and I left out alot of other issues that led me to silently research this Autism a bit more. I have been yelled at and asked how many years of experience have I had with Autism, and that I never been with Autistic kids, or that I am NOT an educator–. Ignored it all, and focused on what I was doing for the community, working with Autistic children. In my mind, who better than me. I've seen writings from the majority to the parents stating that their child was not capable of learning with the groups of the "norm" and watched parents advocate for their child and quietly I knew what i would be up against in the future with my own child.
But, for now I will leave you all with this basic experience with Autism. I want to reach out more, I want to help research because these kids and some now adults are "absolutely phenominal!"

My husband was diagnosed with Asperger's at the age of 57. He doesn't want to deal with it in any way.

He cannot make eye contact. He can't empathize with anyone or show compassion. Physical affection makes him uncomfortable. If I hug him his arms hang at his sides or barely touch me. He's never hugged our kids or grandchild. He told me that the fact that he married me showed he loved me and I should be content with that. He didn't need to say "I love you".

He's an engineer and is very good at his job. He works long hours, especially after most people have left. He admits that he doesn't like people. He doesn't know what to say to anyone. His social skills are worse than our granddaughter's.

He doesn't grasp concepts. When we watch a movie, he asks questions non-stop. When the movie is over, he has no idea what it was about or what happened. Stupid comedies are the only exception. He thinks The Three Amigos is Oscar caliber.

We've been married for 38 years. When we found out he had Asperger's it didn't change anything but it did explain a lot. When he does something or doesn't do something, I know it's Asperger's at work. I did a lot of research and at his age, very little can be done. But, he could learn ways to behave that are closer to the norm.

As I said in the beginning, he won't even talk about it so he'll always be the way he is. I'm the one who has to change my way of thinking and my expectations. Most of the time, I can do this. Other times, I'm dealing with health issues and don't have the energy to make this marriage work.

He said he doesn't like being around me when I'm not happy. When I'm unhappy, he's unhappy. Not from sympathy but because my emotions become his. I have Chronic Fatigue Syndrome and breast cancer plus a lot of orthopedic issues. I need him to lean on but if I tried, he'd keel over.

I was glad to see that a man with Asperger's responded. You rarely hear about Asperger's in adults in any type of medical reporting. There are a lot of them out there both male and female and a lot of spouses trying to get through the day. I dread weekends. I love my husband and he is a good person but what I want he is incapable of giving me.

Thanks for providing a place to read and write about this.

Dear Mr. Riley,
Reading your story the part about what will happen to Emma if you can't take care of her anymore caught my eyes. I have 2 girls ages 9 and 10yrs. who is also autistic and was diagnosed at the age of 2 and 3yrs old. We were also thinking the same thing that you thought for the longest time but didnt know what to do. Then one year when we were doing the Walk for Autism, We met Kirk Barth from New England Financial. Working with him we got insurance for our 2 girls. They can now be taken care of even if we're gone till the age of 100. There's lots more things you can ask Mr. Barth about. You can e-mail him at kbarth@hawaii.nef.com. Good Luck .

It has been a revelation reading your comments. Gordon-you expressed yourself well and gave me insight into the life of an adult with Asperger's I hadn't had before. Jeannette-I feel your dilemma. We have thought to move at some point to a rural area with a close-knit community. But you can struggle to find the right services and schools. You're blessed to have a good teacher for your daughter, though. I think parents seeking services in rural areas is a good story idea and I will pass it on. Carolyn & Meg-thank you for your great support. We love you and wish we could see you. Dawn-I can't speak specifically about your case, but I do know from experience there are law firms out there that take the cases of special needs students who are not getting appropriate educations. And many of those do pro bono work. I assume if the school is in Belmont, you live in the Boston area, and you would have more chances to find a suitable firm than if you lived in a rural area (back to the urban-rural inequality). You just need to make some calls. Don't give up and don't let your son give up.

Homeopathic remedies will immunized as effectively as the drugs without the side effects. They just take longer but I'm sure many parents would want to know about them. It's too bad your TV program and this website has not looked into this alternative.

Phil, thanks so much for "going public" with your family's story. I felt compelled to watch all day yesterday, but at the same time, it left me exhausted. I'm sure everyone reading knows this feeling.

Our younger daughter, Zoe is 2 1/2. She was dx'd with ASD, high-functioning last spring. I just want to share a quick story that hopefully you'll get a chuckle out of. She's been in speech therapy for a year now, and will occasionally say a random word, but then it disappears for weeks, or months, or not to be heard again.

We were driving our older daughter, Andi to swim team practice a few weeks ago.

Andi was asking us how to send a card to someone who was sick at our church, and I said, "we'll send it to his house". Zoe said "house", and actually pointed to a house. Andi said, "Mom did you hear her?" I said, "I know, I can't believe it, I've been trying to get her to ask for her binky for 6 mths!" Then Zoe said "binky". Andi was like, "what else can we get her to say?" We both started looking out the window. Andi said, "Zoe, can you say "sky"? Sure enough, Zoe did.

Andi said, "Zoe can you say tree?" Zoe looked at her, and in her very flat little voice said, "No". And that was it. She hasn't said any of those words again, naturally. But it's these little glimpses of hope, lucidity, and maybe even humor that help us get through the day. Thanks again for helping promote knowledge about autism.

I find all of your comments very helpfull. Some give me encouragement some, teach me to be careful. I wish we could do more. I wish every child with autism could have the same attention, the same care, could be given the same chance. I know they would still be different, but they all deserve the same and defenitelly much more than the society is giving them these days.
I also would like to ask for some opinions. I am really interested to learn about any parents that have been attachment parenting their children with autism.
I have been practicing attachment parenting and I find it ,especially
now, after my son's diagnosis, very thriving. I am just trying to keep
a balance now between my parenting style and some of the approaches to autism. Like the ABA theraphy for example. I think my son will benefit both, but I am still searching for a confortable balance between the two.
I wish you all strength and love and withdom!
Thanks

I have not been able to get Genie's story out of my mind. Her 29-year-old daughter pleading with her "Don't get old," as the daughter is left at a group home. I know Donna left a suggestion about filling the financial gap for a special needs child's future, and that's very important, but what about the emotional gap? After doing so much for an autistic child, but being unable to prepare him for independent living, how does a couple feel when they drive away from a group home? Or what does a surviving spouse say to an autisic son or daughter about why Mom or Dad won't be around any more? Tough, very tough.
Andre's comment reminds me that as important as it is for the media to bring awareness, parents must be proactive. Please get your son "officially" diagnosed. I don't know what it's like in South Africa, but that diagnosis opens the door to services in most countries.
Norma, I am with you on focusing on a child's strengths. We do that. Victoria-Thank you for bring so open and so specific about the struggles your husband and you are going through. I hope your words will help others dealing with spectrum diagnoses as adults. What do you do when you know a loved one would benefit from joining a support group, as an example, but he or she won't talk to you, let alone to strangers? Cyndee, I hear your outrage. As I wrote earlier, I'm going to push for us to do a story on services gaps in small towns.
Suzann-you're absolutely right, you have to laugh sometimes, no matter how bleak things get. On the topic of struggling toward success, the stories of Valery, VBruce, Vicki and Flagstaff Mom are so compelling. My favorite stories are the "glimpses" that Kirsten wrote about. The moments that seem minor to typical families, but shoot down like lightning bolts to families like us. Emma loves doing math, and she's a whiz at it. But I remember a few years back when she was struggling to do simple addition. And she just wasn't getting it. I was writing out the numbers and using models and trying different ways to get through. And, all of a sudden, she grabbed the pencil from me, took the paper and did all the problems perfectly. SHE GOT IT! Emma was beaming and I was screaming. Conor ran downstairs, not knowing what was happening, and he joined in our joy. And when I heard my wife's car, I ran outside yelling and at first scared the heck out of her, too, and dragged her inside to witness. What a time we had! I wish all of you some breakthroughs. Let me know of them.

Hi Phil
May I ask you what are the interests of Emma(Hobbies,Sports..) and what are those of her camrades?
Also,I am making a "study" about autism(haven't tell you that my nefew is autistic,he is 13y.old and started high school last Sep.We've been VERY CLOSE between his age of 1 to 6y.I was his "nanny".His autism started at 2 and an half.)
I would like to know if your wife had a stressed pregnancy,a bad delivery and a c-section.That happened to my sister.

For the past 6 months, we have been helping our 8 y.o. daughter to recover from autism. The first step we took was to find a DAN! (Defeat Autism Now) Doctor. These doctors go to DAN! conferences and learn about biomedical treatments to help children with autism. Olivia has been tested for food allergies/sensitivities, yeast overgrowth, nutritional deficiencies, and toxins. We were shocked by the results! She is allergic to gluten which is found in wheat, oats, rye, barley, as well as a few other grains. Many, many, many, foods have hidden sources of gluten! I have become a detective in reading labels. Casein, which is found in dairy, is another food protein which she must now avoid, along with soy because it is very similar to casein. And the one food that I never would have thought that she'd be allergic to is PEANUTS! She had eaten peanut butter and jelly sandwiches almost every day of her life. That is probably why she developed a sensitivity to it. I did not believe that she had food allergies until I saw the results of the test. An IGG test shows the foods that your child may be sensitive to and what should be avoided. We never noticed an allergic reaction after she ate something. The difference between a food allergy and a food sensitivity is that a sensitivity is not immediate, but delayed. The reaction can be from 1 to 3 days later and results in behavior problems. One problem may be that some sights and sounds are unbearable to them at times, but can be tolerated when they are on a strict diet. Other problems may be aggression, hyperactivity, uncontrollable laughter or crying, stimming. Lots of children with autism benefit from a Gluten Free/Casein Free diet. Many foods even list on their label GLUTEN FREE. If you are interested in learning more, there are lots of different Gluten Free websites, products, recipes, and books out there. All kinds of alternatives that they can eat, so please don't feel too bad for them. Olivia still enjoys pancakes, waffles, pizza, rolls, cheese, yogurt, milk, chocolate chips, and especially ice cream. It is better that they avoid the foods that give them problems so that they can feel better both inside and out. A great website to learn more about this special diet and other ways to help children with autism is http://www.talkaboutcuringautism.org.

Olivia also had very high yeast overgrowth in her body. Antibiotics, carbohydrates, and sugar can all contribute to the amount of yeast in your body. Olivia had lived on carbs and fruit; two things that yeast thrives on. All the antibiotics that she took as a baby and toddler with frequent colds helped to kill the bad bacteria but also the good bacteria. Then that allowed her body's yeast to overgrow. She has been on antifungals to kill the yeast, now eats a more balanced diet with meat and vegetables, and takes a probiotic to put the good bacteria back into her body which helps her to fight off colds.

Supplements are also part of her life now. Many children with autism are deficient in certain nutrients. Partly because their bodies can't absorb these nutrients and partly because they are picky eaters, avoiding foods that have a different texture or funny smell to them. Once you start replacing the vitamins and minerals that they lack, foods taste better to them, their immune system is healthier, and their brain functions better. Olivia now eats almost anything we put in front of her. She has only had one cold all winter. And her teachers say that she is more focused at school, making her able to better learn new things. She used to be way behind in Reading and Math, but now her vocabulary is close to that of other typical 2nd graders and she can even read some 3rd grade books. Her receptive language has greatly improved. She understands most anything that we ask her to do and does it. Her expressive language is coming along. She is trying, but you can tell that she still tries hard to search her brain to find the words that she wants to use. Next week we will find out the results of her toxin test. If she has a buildup of toxins in her body that she can't excrete like most people, she will need to start detox. That along with the Methyl-B12 shots that she is currently taking, will hopefully help her to find the words that she so frequently has trouble finding.

If your head is spinning from all this information, well ours were too, six months ago. We have a much better grasp on it now. The reason I'm telling everyone is because there are ways to help children with autism. Keys to unlock what causes autism. A way for them to recover. We first started this quest after I read Jenny McCarthy's book Louder Than Words, A Mother's Journey in Healing Autism. Jenny McCarthy is a famous actress whose son Evan was diagnosed with autism in 2005. After doing tons of research on the computer, she found websites about helping children recover from autism. She applied the information that she found, talked with the best autism specialists, and documented the process that helped Evan to recover from autism. Now parents have the steps to take to help their children. The most frustrating thing before was not knowing where to go, what to do, what information to believe. With Jenny's celebrity status, she has been on many talk shows, has told her son's story, and has shown the videos to prove that Evan was autistic and now has recovered from autism. You can find out more about Jenny and her book on the TACA website listed above. She is now a spokesperson for TACA (Talk About Curing Autism). Both Jenny and her boyfriend actor Jim Carrey are speaking out about Evan's recovery from autism and trying to help other autistic families to have HOPE!

I want to be able to help other families who feel that they are stuck and have no where to go and nothing that they can do. There is a lot that they can do. All they need is HOPE!

Olivia goes to a public school in rural Maryland where she is in a small classroom with other kids who have autism. I also know that Delaware has great public schools for kids with autism.

I also want to urge families to try church. My church started a nursery for kids during the church service and Olivia watches videos while we listen to the sermon. She stays for some of the singing and then goes to the back room to play, color, etc. after awhile. An adult or teenager always goes along to supervise. Olivia loves music. She often asks me to sing church songs to her at bedtime or to calm her when she's upset. I don't know how much she understands about God and Jesus, but she likes going to church. I also make sure that she wears comfortable clothes and not scratchy dresses and tight shoes that can annoy her. My church is very casual and family oriented and I know that Olivia feels loved when she's there.

This comment is not directly to the article Emma's Autism. I watched CNN's piece about Autism (I am not sure what it was exactly called), and I have to say that Autism doesn't seem to me like a hard thing to fight. I am not exactly aware of all the symptoms or the causes of Autism, however, I feel that a mild case of Autism can be easily cured. If there is a medical difficulty resulting in the symptoms of Autism, that is unfortunate and I give my blessing to the families. However, as I was reading some comments, it's really disappointing to me that some parents just state that after watching the CNN piece that they are convinced that their children have the symptoms, and therefore they have Autism. Why would you convince yourself that?

The symptoms of Autism are: have extreme difficulty developing normal relationships with others. They tend not to share in the interests their peers have. In many cases these children are not able to interpret non-verbal cues of communication like facial expressions. Most people with autism have some impairment in language and many never speak at all.
How are these a disease? Parents should not have their children stop communicating with others because they state that their children have "autism." Parents should encourage their children to build relationships with others. Anyone can learn to build relationships, that is the part of growing up as a person. Also, people say Autism usually comes around at age three. How do you know that your child has communication issues at such a young age? That's when they just begin communicating, and some are shy than others. This is not a disease or a disorder.

So I urge parents to not settle for their child having "autism." Instead, work at it because I think it can easily be fixed. While your child grows up, encourage them to communicate with others. Parents should always communicate with their children. What really disappoints me is when I hear parents keep their children away from the public because they have Autism. Also, it worries me when parents say that they feel bad for their children's mental state. It seem that that one word "autism" just gives up all hope. No, it does not. I do not think Autism is any type of disorder or disease.

I hate doctors who tell us that children can not help how they behave because they are autistic! First of all, it's called building their personality, self- esteem, and mind while they are growing up. Secondly, it's never too late to help someone build self-esteem. Thirdly, what gives them the right to label a person as having a disease because they are less communicative than others? Discipline your kids and teach them to grow.

Paul,

Thank you for sharing. Your entire story resonates. Our children are much younger, but I share the same concerns, including those for my "typical" son. Are we spending enough time with him? Will he feel his brother is a burden or a gift to treasure when we are no longer here to look out for them? We only hope that cultivating that love for one another will be enough when we are gone.

Oh, and Conor for President! To have a world full of people who learn that important message...

“You learn to serve others and not just yourself.”

My comment is directed towards autism (specifically the ignorant comments and perspectives being voiced by mccarthy and mccain). HELLO, has anyone thought about the possibility that since this is a developmental disorder its potentially caused by either (A) the use of fertility drugs or (B) babies being created from eggs that have been rotting away in the ovaries for 50 years combined with fertility drugs. If these ovum would under normal circumstances not become fertilized, perhaps older women should realize they will be creating trouble for their offspring, and not be seduced by the lure of fertility drugs. It is odd that people like jenny wouldn't look at what she did to cause this disorder to develop. Honestly, if it were as simple and as causative as vaccination we would all be autistic. SERIOUSLY PEOPLE NEED TO START TO LOOK AT FERTILITY DRUGS AND MOTHERS HAVING BABIES OVER THE AGE OF 35 (AFTER THAT IF YOUR NOT NATURALLY FERTILE, YOUR BEAT)

To Sara Lee WELL SEEN
PS: what helped Jenny's son is that Jenny felt better with Jim Carey.When a mother feels good ,her child feels good too.

Some people have no clue about autism. I was 26 when I had my daughter. No one ever noticed the obvious signs that she had as a baby that were signs of autism. No eye contact, not pointing to things, not responding to her name. I never had fertility drugs, as I and all the other autistic moms that I know who were in their 20's when they had their autistic children did. In light of the Poling Vaccine Injury case, vaccinations along with a mitochondrial disorder (problem with cells being able to process proteins and therefore absorb nutrients) that many kids with autism have can be the cause of autism. Putting a ton of vaccines into our babies who have an immature immune system is hurting many of our children, not all of them. Why can't we wait until our kids are 3 or 4 to vaccinate them or give them 1 shot at a time instead of pumping them full of vaccines when they are BABIES! As Jenny pointed out, 15-20 years ago there were 10 vaccines, now that has increased to 30+! Kids with autism have all kinds of underlying problems, such as sensitivities to certain proteins in foods like wheat and dairy, (my daughter also has a huge sensitivity to peanuts), yeast overgrowth in their bodies, toxic metals being stuck in their bodies, etc. I have seen her test results and I wouldn't have believed it otherwise. Jenny and other parents are helping their children to RECOVER from autism everyday b/c they have tested them and are taking the necessary steps to help them get better. That may include putting them on a strict diet, giving them supplements, getting rid of their yeast and toxins. I am seeing it happen before my own eyes! Her teachers, school staff, family, and friends are all noticing changes in her behavior and ability to communicate. There is a whole bunch of people trying to Defeat Autism Now! There are doctors and parents being educated in these biomedical treatments of autism and sharing this information at DAN conferences. It is hard work and can be expensive but kids are RECOVERING. To find out more, visit http://www.talkaboutcuringautism.org. The TACA website is full of information about the GFCF Diet and finding a DAN doctor and other things that parents can do.
I urge parents to go to this website, find a DAN doctor who are experts in treating autism, and think about the foods and medications and vaccines that are going into your child's body. We are not a healthy society and all the things that are going into our children did not go into our bodies 15, 20, 30 years ago.
And if you don't know anything about autism, find out more before you spout your mouth off saying offensive things about a subject that you haven't researched! It has nothing to do with fertility drugs, older women, socioeconomic status, drugs or anything else to do with the mother. So don't go blaming moms! Read Jenny's book, "Louder Than Words". It will open your eyes to what she went through and how she became determined to help her son DEFEAT AUTISM!

My son who is 14 also has autism. We are having a terrible time with the schools. They call the police when he has a meltdown and then the police taser him multiple times. The most recent incident two weeks ago caused him to be rushed to the hospital because he couldn't breathe. I am so scared that they will kill him after this incident. I don't know what to do.

Phil,

What a beautiful girl Emma is! Now for my advice...please watch the web-seminar tomorrow at noon by the boy (now a man) whose parents started Son-Rise...go to autismtreatmentcenter.org please! The most change will be for you and your wife but it will change your life and Emma's too! Most of all it will restore your hope. I did not read where you live but I have two more suggestions. Public school is great if you are getting the support and understanding you need for Emma – if not, I urge you to investigate full-time programs specifically for ASD kids (I'm not a big ABA person but at least they understand our kids) or a private school for autistic children (hard to get into but often worth it). Even more important – please take Emma to a DAN (defeat autism now) doctor (NOT A REGULAR PEDIATRICIAN). There are so many biomedical treatments that can help with the self-injury and sensory overload. also, take a good look at emma's diet...is she eating only organic, chemical-free foods? can you try the dairy-free & gluten-free diet? can you limit her sugar & carb intake? these suggestions are good for any age person – there is so much support out there to help you navigate the nutritional/bio-med approad to ASD.
My son was diagnosed at a little past 2...we have tried everything except swimming with the dolphins...most things have worked to some extent, a few things have not...nothing has been a magic bullet but now, at 7.5 years old (and for the last few years), my son can go anywhere and do anything and is verbal (but not conversational, yet). He loves going to all his favorite playgrounds in Manhattan, and is mostly a regular boy. He still flaps and noises and I wonder and pray every day who and what will be there for him when he gets older. But help is still on the way. and the son-rise program is a miracle! Best of luck!

Keep Emma in public school,Phil,she needs contact with "normal" kids.Do you have contacts with the parents of the school?

hi phil
what is good for autistic children is equitation,horsemanship.

I agree, Joelle, that horse riding can be great therapy for kids with special needs. When she was younger, Emma was in such a program. But after a time, we felt her progress had leveled and we wanted to try her in other activities. Our first choice as far as education is concerned would be public school, the contact with typical kids being very important. We're hoping in our IEP this spring to set up a good classroom situation for Emma for the fall. Best of luck with your study. My wife had a nornal preganancy and delivery with Emma. Emma's hobbies include computer games; outdoor, physical activities (though not organzied sports), watching videos. Like many autistic kids, she loves water, whether going to the beach, the pool or a small creek.
Nancy-thanks for your suggestion about Son-Rise. I have read about the program and I will check out the online seminar. I wish for continuing advances for your son.
Dianne-Your son's plight appears to be a tragic one. I cannot comment on the specifics of the case, but generally speaking, I feel an advocate can help parents in their dealings with schools, especially in heading off potentially explosive situations.
Tara- thank you for sharing your family's journey with your daughter. She sounds like she's making great progress.
And Joey-I think you're on the right track. Keep developing that love between your boys and they will only grow closer.

Dear Phil

We have a problem in Georgia with schools criminalizing the kids with Autism. Please see this story:

http://www.tiftongazette.com/archivesearch/local_story_088221520.html

This is an 8 year old autistic charged. Because kids are misunderstood at the school level, the schools are finding every whcih way not to educate them. We have a very big problem with this in Georgia.

Also, many Autistic children have medical problems and we have zero understanding from Georgia Public Schools. When the kids have to be taken out of school because of medical issues, then often the families are getting charged with truancy because of our Compulsory Attendance Laws. We had one mom arrested for truancy when her child had to be kept out of school for medical reasons–Houston County, Georgia. This is one of many stories that parents ahve to put up with all the while fighting the constant misperceptions that the school establishment has about these kids. Parents are meeting resistance in educating children with Autism. They are told their kids are 'uneducable' or 'untrainable' when we all know given the right tools, the right timing the right interventions, these kids can learn and be productive.

Here is the Betsy Loiacono Story:
http://www.associatedcontent.com/article/253099/mother_of_autistic_child_arrested_for.html

Thanks Phil.

I commend the family unit that at times maybe very trying for you and your child. having worked with mental challenged, autistic, and haveing a mentally impaired brother. Educatable to the age of 6 as they classify.
I learned many things from these human beings. Beyond the response of vibration and how it so seems to effect them. In either a postiive way or negative. A suggestion to those who may not understand the concept of the brain and how they need to control thier world.
A movie years ago, of genius within a child, may shine a light that they have not seen. It was called The House of Cards. Its a good movie of belief, and the idea that they have all they links we do within our brain. Its merely how they get to the next bridge of thought.
Sometimes they get stuck on the bridge.
Thank you for being whom you are.

I know what your feeling. I to have a 5 year old son who is diagnosed with autism and I ask myself the same question about the future. I also wonder how will it be for him in school, right now he is in headstart and it is only a half day class. When he goes to kinder is what worries me. I want to be with him in school to help him adjust and feel comfortable but the school will not allow it.. Here on the small island (Guam- Territory of the United States), we do not have much to help us out with autistic children. The numbers are growing here and it scares me. My son is doing well though, he can finally speak and tell us what he wants but it a long journey ahead of us. I am happy that I am not alone in this fight and I pray that one day there will be a cure so that we can have our kids back and letting us know how they feel and what they want.. Thank you for reading, I just needed to let this out..

Arlene
Guam-USA

Phil,may I ask you one more question.Did Emma sleep well between her age of 0 to 2 ? My nefew didn't.

Hi Joelle-Emma had typical sleep behavior for the first two years of her life. As she got older, she developed more irregular sleep patterns, and, still today, she will wake up in the middle of the night and not go back to sleep at least once a week. She'll stay in her room and play so she doesn't need the overnight monitoring she needed when she was younger. Still, we feel sorry when she has to approach a new day (especially a school day) with insufficient sleep. I know sleep issues are a concern for many families strugling with autism.

Hi Phil-Thanks again for your answer.
About church,I would like to mention you a web site of a friend of mine.His name is Donnie Sumner.Hope you will enjoy it (in family?).
About horse riding,could it be a sport to do for Emma,individual but in contact with other kids aside the school.
Have a nice day.

Thanks for sharing your story. My 7 year old daughter seems very much like your daughter. She only attends school for 2 hours a day. We barely leave the house to even go to a park. I have 3 other children, 2 of whom have Asperger's syndrome. We have the same worries about the future. What happens if were no longer able to take care of her? Will her siblings take over? Our other worry IS the emotional state of her brothers and sister. My daughter tantrums a lot and sometimes hits and spits. Her younger sister is Neuro Typical and seems to understand and just comes to mommy instead of fighting with her. My boys who have Asperger's have a harder time and see it as her being mean. Although, we try to divide time between the four of them my daughter with Autism always seems to be the center of attention and the cause for their lack of fun and the reason they can't do all the things their friends had done. (going to the zoo, park, pool, etc.) We do occasionally take them places without their sister but we are always overwhelmed with guilt over leaving her out of the fun. She knows when she's left behind too, because after we all come home she had spent most of the day crying and continues to do so until she falls asleep that night.

Sorry I just had to vent. I really got tired of seeing all of the stories about Autism on CNN being stories about Savants and giving the public the wrong idea about MOST kids with Autism. This is the other side.

Dawn-you say that 2 of your other children have Asperger's syndrome,does it mean they have communication problems too!
I have tears in my eyes when I read that your daughter is sad not sharing fun with family.I wish I could help you.

Hi Phil,how is Emma doing?

People complain about the schools not having appropriate education for autistic students but they seem to forget that the diagnosis of autism doesn't come easily in many cases and the condition was not recognized as a medical condition until 20-30 years ago. How can you expect the education community to come up with a treatment quickly when the medical and scientific communities are debating about what should be included within the autism spectrum? I work with the teachers of autistic students and I see them spend their own money to get the best training available only to have the student's parents berate them for not using the LOVAAS method, the HALO method or whatever method the most recent Hollywood interview has touted. Naturally, these are also very expensive methods to get trained in but I never hear the parents or their lawyers offer to provide finances for this training. With this lack of understanding on the part of the parents and the underlying threat of a lawsuit if the parents don't get what they want immediately, it is not surprising that teachers and teaching assistants often leave the autistic classroom for the general education classroom after a few years. These teachers and their assistants are often treated as if they are glorified babysitters or servants. At times, I have felt that the parents of these students should have to help in the classroom on a weekly basis to experience the challenge of trying handle 9 non-verbal, diapered 1st and 2nd graders who bite others and throw things with only two adults in the classroom.

If, at the age of 2/3 y.old,when "diagnostic is made",the child is kept in typical gardenschool,with knowledges of the problem(parents and teachers),there would NEVER be severe autistic chidren or autistic adults.

My 10 year old son has aspergers syndrome. I am a teacher and have to work so I could not get him from the bus. The day before the last day of school, someone told me that kids were hitting my son. He wen through the entire school year suffering in silence. He is in a normal classroom with no special help, and usually he did very well. But he could not tell me about the abuse because he was unable to speak when he thouoght about it. I have never been so angry and heart broken in my life. God only knows how a person who can't speak up when someone does something bad to him is going to survive in this world. I wish I could hire him a body guard. I can't believe the lady took a year to tell me. I got all the kids suspended, but nothing will restore my son's dignity. Even when he knew I knew he would not speak about it, so it was hard to get a "conviction", it was all based on hearsay. Autism sucks!!@!!

Hi Laurie-Your son will not speak to you about suffering because he doesn't want you to worry or to have pain for him .That is part of autism.Autistic children have empathy.(wish I could help).

Hi Phil,

I wrote fron Argentina, my son Dinko (12 years old) is autist, he can speak, but is impossible for him read or write. I believe that your fear is common for all parents "who care for my children when I no longer this here", is cruel to give this responsibility to our other children (me are two, olders Dinko), because do deserve a life free to problems.I believe that our work is to teach them the best people possible, strongs and prepare as best they can for self-sufficiency, and and expect them to always have people who love them. If we are strong they are stong,

Has anyone heard of the expensive and dangerous method of chelation therapy for autism? Well it does help dislodge some of the possible toxic culprits like mercury and other toxins that may encourage the disease in those sensitive but it does not take it out of the body. It merely displaces it to another part of the body. Who knows what that could do later. It is expensive and dangerous and not as effective as a product called Natural Cellular Defense that is safe with a patented method to clean out zeolite in a slightly acidic solution that is stable and pure. Many immitators have tried to jump on board of this revolution but are failing so far. Recognized by FDA with graf status for safety and purity it is non toxic. Many Autisic kids are getting results with the metals trapped in the zeolite cage and leaving the body through urination for good. See websites for more info: sharethecause.com/globalheath and healthytogo.com. Also view mywaiora.com/709134.

I have two little silent angels..no they are not twins. Although they weren't diagonsed with Autism, they were diagnosed with Retts Syndrome, it's within the same spectrum. Please log on to IRSF for more information. Your typical Retts Syndrome girl is on a wheel chair. Right when I found out what they had, I decided to pump my girls with lots of vitamins and calcium magnesium (helps to calm them the down, if they are hyper), gave them lots of physical therapy, and I did a glueten free diet for 6 months when they were young. They are now 16 and 14 years old and they both walk. We take them everywhere, camping, swimming, movies, and theme parks. I have two boys 18 and 12 and they are also a blessing in my life. They love the girls and are very proud to have them as their sisters. God intrusted me with two little angels and they completely changed my life, but for the better. We all have worries and battles everyday, for me is double. I have learned to accepted and believe it or not, I love to take care of them. Yes, I would love to hear them talk. I hear them talk in my dreams. In my dreams, they tell me that they understand everything I say. Of course, I believe that is so true. They speak to me with their eyes. I pray that God gives all of you comfort and peace of mind. That you embrace this child as a gift from God and thay you learned from them. Remember, is okay to take a break from our children, just as we do from our so called "normal" children. I am very proud of my girls, Alex and Amanda. Praying helps me to deal with the challenges that our angels bring to our lives. I pray that one day SOON we find a cure for our children.

Blanca

Hi Phil
How is Emma doing?at school?(church,restaurant..?)

oh my goodness, my heart goes out to this family, for i am a very big representitive on the autistic community. i believe in them, and my heart goes out to all of them. if i won the lottery, you can bet i would give it to the autistic. ive been this way my whole life. i hope you guys are at least happy, take pride in your daughter, she could change the world and she is a beautiful person. you and your family will go far!

I have a 24 year old son who is autistic. He graduated at 21, and there is nothing available after they graduate. We tried one place and they had no idea how to handle an autistic person. We checked out two other place's, but between being dirty and in industrial area's they where not acceptable for a day program. My son is at home and we are looking for a day program. People don't realize that after the public school system,
there is nothing out there for them. You know your children will grow up and there is nothing available for them later on. I 'm saying this to you so you are able to prepare many year's in advance and be ready. I know that most of your children are young right know but before you know it they will grow up and you will understand what I'm talking about. I think society has to do something now for these children before they grow up and have something available for them as adults
because the alarming rate of autism is growing and they will be adult's someday. As far as my son, he was 3 month's old and got his vaccination and got a high fever and never was the same. If I had known I would have waited until he was much older. His fever was so high that he got a medical for the rest of them.

my grandson is 6 years old, and was diagnosed with autism/ASD 2 years ago.
he was also diagnosed with type 1 diabetes at age 14 months.
it's been very challenging – autism as well as diabetes.
we learned to watch his body language and tested him religiously in order to keep his blood sugar level.
i watch him now, when i tell him it;s time for a shot – he lifts his shirt up, and says: ok grandma, ready for my shot.
but it took a long time to get there, and i had to keep telling him that this (insulin) was 'important'. when he wants something special, like chocolate cake, i tell him he will need insulin to 'cover' it, and he agrees with me that chocolate cake and a little insulin is ok.
he says : my name is Isaiah
he counts to 50
he loves birds, and carries different colored straws around to symbolize the birds he loves: blue ones are blue parrots, orange ones are flamingos...
and he can name almost every bird known to man.
recently, he learned the meaning of "i love you" and must have told me 100 times that first day that he loved me. he;d ocme into the kitchen, put his hands on his hips and say "grandma, i love you" and blow me a kiss and then he;s off to watch his favorite movie.
ever since he's been born, we've spent a lot of time together. when he was diangosed with diabetes, i learned how to deal with it and took him overnights to give my daughter a break.
we have lunch every saturday, and if i have not called him by 10:30am, he'll be on the phone with his mom asking me where i am.
it wasn;t always like this.
he was the screaming, flailing, frustrated child all parents and family of autistic kids have dealt with.
we finally got him into a great school, he's thriving.
at the same time, i got him into a pool when he was 6 months, and we've kept swimming every summer to the point he could float and enjoy it – and was ready for real swimming lessons last summer.
he still wears a diaper.
he only eats chicken nuggets, carrot juice, capri suns, french fries, strawberry bars from trader joes and sometimes pizza and jelly sandwiches. he doesn't know that some of the treats i give him are actually health foods, packed with vitamins.
i honor his sense of order and routine, but i also intentionally mix it up – and most of the time he allows himself to see the humor in what i am doing and plays along with me. the times when mixing it up are not the best for him, i ask him what he would prefer, and he usually tells me to go back to something familiar. and i do, but we try the new thing again the next time i see him.
he tells me jokes, and remembers how to get to my house from anywhere in the town we live in, by telling me to turn right, left, or to go forward.
i could keep going here, but it;s nice to have this blog, i will keep reading and keep in touch and turn my daughter on to this blog as well.

I am Grandma Dee. I have two "typical" gandchildren and one, very autistic grandson named Alex. Alex is a beautiful 7-year-old boy who lives with me, Grandpa, and most special of all, his Daddy. Alex does not use words to communicate, is still in pull ups. Even so he has came a very long way. Instead of waking up at 3:00 am and going full blast, with the help of his medicine he can now sleep. He is making progress using a picture exchange communication book to communicate. He still has awful melt downs but now they are very selective and mostly limited to not being able to go outside. He goes to winter and summer school in an Autism classroom. I don't think that Jenny McCarthy or any other star can help us unlock why this happens or when it does happen how we can help these children. I strongly believe the answer lies in working with the older children with autism that can communicate to help us understanding our autistic children. This is spring break, Alex is out of school, I am off work and we are going to try for the bazillionth time to potty train! Enjoyed your posting. Very true, without all the drama. Thank you

My eight year old grand-daughter was diagnosed with autism at eighteen months old. It was IMMEDIATELY after having the MMR shot! She now has seizures and yeast infections. The videos of her prior to the shot shows an animated, responsive child. That child was taken AWAY. She cannot read, write or tell you what she is afraid of when she cries for no apparent reason. Her identical twin is fine!!! If there wasn't for the greed of the pharmaceutical companies and the government perhaps there would be a drop in this epidemic. The doctors denied, at first, that there was anything wrong with her. It was our own perseverance through a family friend doing an evaluation that we learned the TRUTH. You MUST be your child's advocate.

This is for Bonnie, about the yeast infections. You need to reduce the amount of sugar and simple carbs that your grandaughter consumes, and replace those with more fruits, veggies, whole grains and plain yogurt. It's not easy to change the diet of a person with ASD, but it can be done. Sugar feeds the yeast, so reduce the sugar! Yogurt helps restore the balance.

I so feel for parents of children on the spectrum. I work with those students but it is only 8 hours a day. The children have such complex needs that our parents need support because their emotional, physical, financial and marital situations are stressed.
Cindy
http://www.omacconsulting.blogspot.com

It really should be compulsory to try a gluten, casein and salicylate free diet for any ASD kid/ adult. Did you try this for Emma?