Autistic and Proud

If you missed the piece this morning on Good Morning America, you can find it online here. There were some wonderful moments, both from Ari Ne'eman and Kristina Chew. I was delighted that ABC included the Ransom Notes campaign, and how our community came together and dissolved it. Transcripts from the show are also available on ABCNews.com as well.

Ari Ne'eman said this early on in the interview, when speaking about a cure for autism, and why some parents are upset over this:

"I think that one of the key issues to remember is that anti-cure doesn't mean anti-progress," he said.

That is so important. People hear "acceptance" and they assume ignorance and even laziness. Accepting my child, accepting autism, does not mean I sit around and allow her to struggle through her life. What it means is that first and foremost, I see her and treat her as the unique, beautiful individual she is. I respect her and love her. I have learned so much from her, she is a gift, and I really am lucky. I do all I can to help her, to ensure she has the skills she needs to reach the next step (realizing it may take a long time to get there, and there may be hurdles along the way).

"Where does disability come from? It comes, in many respects, from a society that doesn't provide for an education system that meets our needs. From people who often discriminate or bully or even injure us, and from a society that is largely intolerant," Ne'eman said.

Society is very intolerant, we see that time and time again. I have always thought of my home as refuge from the world--and now for my youngest, refuge from a society that can be very cruel. I see it in stranger's eyes when she is having a meltdown in the store (the "can't you control you child?" or "what is wrong with you?" stares and glares). Or the perplexed look on another child or even parent's face if she is struggling to do something (a milestone achieved by children younger than her) or when she is hyper, spinning in circles or making odd vocal noises. You don't realize how judgmental the world is until those moments. I always had such hope for the world, it's easy to become jaded when you are in my shoes. Judge me, that's one thing. But, I never dreamed society would judge a young child. It's disgusting.

Lenny Shaffer, a writer with an autistic son, says of the movement, "You're a handful of noisy people who get a lot of media attention, but you don't represent a broad swath of the autism community."

Ne'eman believes history is on his side.

"I can't think of the civil rights movement throughout history that hasn't been faced with resistance and misunderstanding on the part of its detractors," he said.

I really have to disagree with Mr. Shaffer's perception of the "Neurodiversity" or autism acceptance or autistic pride (or whatever else one may call it) movement. I see our numbers growing each day. I see it most apparent out in the world, with parents of other children in our community. To be honest, most of the parents who I know who feel as I do, they simply go about their day and their life. They aren't seeking media attention or attending rallies. They have no beef with the government or with vaccines or anything else. They focus on helping their child, dealing with the schools, and just with living life with autism. Those who feel it is wrong for us to "accept" autism, they tend to shout louder and love the camera. But, I honestly feel that we are a rather large, and growing, part of the autism community.

"We really try and understand him on his own terms," she said.

That is her advice for parents dealing with a child's autism diagnosis and feeling hopeless.

I couldn't agree more with Kristina. I'm grateful for having (by coincidence and luck I suppose) known a few parents of older autistic children just prior to and around our diagnosis time. They gave very similar advice. There was always a lot of optimism in their message. I have never forgotten their words. My daughter has made tremendous progress, I credit part of that to the fabulous doctors and therapists we have (and knowing she was delayed and needed help before age 1). The other part, and I strongly believe this, is that she has a loving place of acceptance to live in. We do not force her into how we think she should be. We realize she often finds comfort in rocking, flaps when she is excited, and has her own "brand" of play. We understand that eye contact can make her uncomfortable. We do our best to prepare her for social outings, changes in routine, etc. We follow her lead, in many ways. I don't think she would be where she is today, if we focused on changing behaviors or actions that society perceives as odd. She is so connected to us, and each day opens up more to us. We'll be able to help her so much more, because she will know we are trying and that we respect her.

The interview ends with Kristina saying this, a beautiful message that we all should remember:

"Acceptance, to me, is the beginning of hope," Chew said.

I want to thank Ari Ne'eman and Kristina Chew for their wonderful interviews. I truly feel these messages are what will lead to change for our children and for adult autistics. I applaud ABC, along with Deborah Roberts, Michelle Major, and Jonann Brady for doing this piece. I hope it is only the beginning of many more.

Mother's Day

A mother understands what a child does not say. ~ Jewish Proverb


(Breakfast In Bed ~ Mary Cassatt)

This is from Elaine Hall (aka "Coach E") of The Miracle Project (Autism: The Musical):

My mom used to say that Mother's Day was just another day. She still needed to make the bed, straighten up the house, wash the dishes (especially after we'd made her that fabulous breakfast in bed and turned the kitchen into a splattered mess!) Though my mom didn't always show it, I know those cards we decorated and the little gifts we made in school warmed her heart.

For us "Special Moms" it can be a little different. Our kids can't always express how they feel towards us in traditional ways. They may not be able to verbalize how they feel, or they may not be able to draw or write their name on a card. But know, when you dig down inside of your own soul, you can hear their voices.You can sense their appreciation. You can know that you are their lifeline; their advocate; their way in to the world.

She continues on with a poem and some words of wisdom for other moms. You can read the rest of her Mother's Day message here. I love what she says, about how your child may not be able to verbalize their feelings, make a card, or the other "traditional" ways kids typically say "Happy Mother's Day."

As I've written before, it is a learning process, to "alter your preconceived notions" of what love looks like, how it is expressed. Do not focus on what your child isn't doing (saying "I love you" or hugging you or blowing kisses), but rather what he or she is doing. And, mostly, how in their own unique and special way, they are showing you that love. Those declarations of love and gratitude are often found in the little, simplest of moments. You have to look closely, and again get past all the ways you once thought love was expressed.

I've also written my feelings, on how honored I feel to be my daughter's mother and also of the very real concerns I have for the future. There are far too many "autism moms" in the media who say awful things about the life they have with their child, desperation and fear are the overriding themes. They claim to speak for all of us, all of us moms who are raising autistic children. The public perception is that we are all miserable, we have no hope, and we are fixated on curing our children. The focus remains on how to "cure" their child, not on acceptance or on preparing for their adulthood.

For new "autism moms," the task of figuring out what the diagnosis itself means, what steps they should take, and how to handle "life with autism," is nothing less than confusing. There are a million perspectives out there. As it's stated above, take a breath. Educate yourself, but be sure you know where you are getting your information from. There are also many people who have hopped on the autism boat to make a buck. I have found the greatest support and advice comes from parents who have older autistic children. They have more experience and perspective, they've 'been there, done that.' And--survived to tell about it! My best piece of advice I might give to a mother whose child has recently been diagnosed with autism: always be aware of what you choose to focus on at the end of the day. That can make all the difference, not only for you, but especially for your child.



"My mother had a great deal of trouble with me, but I think she enjoyed it."
~ Mark Twain

On Disablism

Blogging Against Disablism Day
Disablism is something is something new to me. Actually saying that now sounds ridiculous. It is true, I've come to realize, that until disability touches your life, most remain completely unaware of it (and yet many are guilty of it). As a parent of a disabled child, I'm slowly learning and seeing it in the world. I see it at times when other parents look at my child, I see it when some "professionals" give their opinion of her, and I even see it (although they have no clue of it) in the eyes of other kids on the playground. I am very aware that, unfortunately, this is only the beginning of my experiences with disablism. I hear from other parents who deal with it in their lives, with their older disabled children. I hear about it from disabled adults who face it on a daily basis. For those who feel disablism doesn't exist, you are sorely mistaken.


"DON'T STARE!!!"

That is what so many parents teach their children. Children are naturally curious about anyone who is different from them. Even a small infant may seem especially interested in seeing someone with glasses or with a different hair color, anything that is unlike their own parents. It is natural for a child to want to investigate. The first time they see a person in a wheelchair, for example, they are most likely thinking "wow, what is that cool chair with wheels?" Whether it is a walker, a guide dog, a wheelchair, someone flapping their hands--it's all curious to a child. So, they stare and observe. Upon noticing this, well-intentioned parents say those two words, in that tone, "DON'T STARE!!"

Most parents, having been raised with that same mindset, don't bother to explain differences or disabilities. They prefer to simply pull their child along and move on. Such a shame. A valuable life-lesson, lost. This message of don't stare, don't look, don't connect with "people like that" continues. I think often it's "innocent ignorance" on the part of parents, and how they too were raised. They're are afraid of the differences they see between themselves and a disabled person (differences are generally not embraced by society). They fear that if they ask a disabled person questions about their disability, that person will be offended. If we never open up a discussion, how will we ever understand one another? People sometimes seem awkward when my husband and I openly speak about autism, or even seizures and feeding tubes. It's not expected, we're not supposed to be open and honest about that sort of thing. This is not supposed to be dinner conversation. Except, it is. It is our life, and we want to educate you--we want to change your perception.

People have been told it's rude and improper to look, so how can they ever approach a disabled person? Trust me, there's nothing rude or improper to say "hello" to a disabled person, just as you would say "hello" to anyone else. Things like "how are you?" or "wild weather we're having" or "this line is ridiculous" and so on, will not offend a disabled person. I assure you. Granted, depending on the disability, a response may not be possible. But, have you lost anything by not even making the attempt, and by treating your fellow human being as just that--a fellow human being?

I was raised this same way. I do not fault my parents, they simply didn't know any better. They thought what they were doing was right. In middle school, I had major back surgery. I wore a cast that began just under my armpits, down my torso, and down one leg to the knee. After 6 weeks, the cast was replaced by a brace of the same size. About 2 months after that, the leg part of the brace came off. It was a months before I was without a brace. Following surgery, I slept in a hospital bed in our dining room, it had a trapeze on it so I could get myself on and off the bed. I had a commode that had to be kept in the laundry room. Our house was not friendly to me, the doorways and bathrooms were too small, my room was upstairs, getting outside required taking 4-5 steps to the front or back yards. My mother had to bathe me. I had a walker and a wheelchair. I remember being ashamed of it all--the cast, the commode, the walker. Part of it was just normal adolescent stuff. I wanted to be healthy, and to just be doing all the things my friends were doing. The other part, was that I felt I had lost my identity. People wouldn't see me--they'd see the cast (or brace), the walker, or the wheelchair. They would see what was wrong with me.

I learned many valuable lessons from that experience. I valued being able to move freely, like I never would have been capable of before my surgery, and will never lose sight of that. I valued privacy and independence, more than any of my friends could imagine. I valued my family even more, for all the support they gave me. I learned how to roll with life's punches, and make the best of it. I learned discipline, from grueling PT sessions. It took years for me to understand the emotions of that experience. I was too young to really understand it all--why I felt the way I did. As I grew up, I realized what I associated with the wheelchair, the special bed, etc. I saw it as weakness. I felt damaged. It took many years for my self-esteem to recover. Why did I feel those things?

Part of it was just my personality. I am stubborn, and I have a lot of pride. This was a challenge, one that I had little control over. I had to learn patience, and in the middle school years, let's face it--that's a tall order. The other part was, back again, to those early lessons and views on disabilities. I was the one I didn't want anyone to stare at. I didn't have a single friend come visit me--that was my choice. I shut myself in. I didn't want my friends to see the medical equipment, to see me in this big, bulky cast. I didn't want them to stare. It took a while for me to realize I was still the same kid. I still loved watching videos, playing games, and having fun. The cast or the wheelchair or any other equipment didn't change who I was on the inside.

It took that experience for me to realize that neither an ability nor a disability doesn't change who we are at the core. We're all human, we all have our likes and dislikes, we are all far more similar than we often think. It's sad to think that it was only being placed in that situation that changed me. From that moment on, I always felt a silent kinship to the disabled people I would pass on the street. I no longer stared at their equipment, at their differences. I saw a person.

I suppose my that was only part one of this lesson for me. I am now raising a beautiful, amazing, disabled child. As a parent of two children, one disabled, one not, I feel a two-fold responsibility (when it comes to disablism). My first, is to make sure my youngest child is respected, that she has the same rights as any other human being, and that she is appreciated for who she is.

For my eldest, it is to make sure I never say "DON'T STARE!" and end any communication about disability with that. I also make it my job that she learns to look past a disability. She has been "exposed" to more disabled kids than her peers, I would bet. From hospital visits, to doctors' appointments, to coming to some therapy sessions with us, she has seen many different disabled kids. I tell her that it's not nice to stare at someone, jut because they are different. Would she like it if in this world, people with blue eyes were considered "not normal" and so people often didn't talk to blue-eyed people like her, and most just stared? How would that make her feel? We are all different, I explain. Just like your sister's feeding tube, someone else may need a walker, or equipment to help them breathe, etc. That doesn't change who they are--they are just like you and I. Like your sister, they may have more challenges. But, it doesn't mean we can't be friends with them. And it certainly doesn't mean we can't be friendly toward them. You can say "hi" or wave, and you can look at a disabled child just like you would any other kid, but don't just stare, as that's rude. You wouldn't like it if someone was just staring at your sister because she is different, would you?

Growing up with a sister who has worn AFO's and has a feeding tube ("equipment," visual signs of disability) is a good starting point for my child to look past the disability. Living day in and day out with autism and seizures, offers a perspective and understanding like nothing else in the world. She and I have discussed many kinds of disabilities, with openness and honesty. This discussion will continue. I see the compassion my daughter has for her younger sister. I have no doubt that when she is an adult, she will not discriminate against disabled persons. She will see them for who they are, and value them, as she would any other individual.

I would ask every parent, next time you see your child staring at a disabled person, not to say "DON'T STARE!" If they are old enough, use that opportunity to open their minds. Don't be afraid, parents, of disabled persons. Whatever the disability that you see on the outside, look past it. They were born to this earth, same as you. Accept disabled persons, give them the respect and dignity you expect for yourself, and without hesitation, ensure that every person be afforded their human rights. Each and every human being has a gift. How sad if ignorance kept you from seeing all those gifts. Autism is referred to as a spectrum. I see the world quite similarly. It is an amazing collage, and all you need to is an open mind and willing heart to embrace all of its beauty.

Doctors & Scents

I brought my youngest to the doctor the other day. Her regular physician was not available, so we met with a nurse practitioner. Most everyone at the pediatrician's office knows my daughter, and more importantly, how to make her feel comfortable. This NP, just our luck, was new and one we'd never met. The NP was really sweet, I think she must have gotten a primer on how to approach my daughter by the nurse (I'm not kidding!). I have to say, my little one did great, despite having never met her.

What wasn't so great, was the overpowering smell of the NP's perfume. It was very strong. I will never understand why someone in the field of medicine would wear any scent, or at least not a very strong one. I'm not sick, and it made me feel like I needed to cough.

Now, I will admit, I may be a bit biased to begin with. I have never really enjoyed heavy scents. When I do wear perfume, it is a very light scent. I myself do not wear any perfume or scented lotion if we are headed to a doctor's office.I do this generally because I consider those with asthma and other breathing difficulties, allergies, colds, nausea, etc. who are more than likely sitting in the waiting room. Another reason, is because I consider those who may be extra-sensitive to such smells, like my child.

My daughter is very much affected by smell (a super smeller and taster here!). She will gag in the grocery store, pick up on odors I never even catch, and refuses to sit by us if we are eating certain foods (plain lettuce for one, believe it or not). So, in our home, we've all taken note of that and try our best not to insult her delicate olfactory system. And also, to not be insulted ourselves should she gag or scrunch up her nose at us or our food.

I realize I can't create some bubble around her to prevent her from smelling odors. There's far too many people, food varieties, buses, and so on in this world! I do hope that one day she is able to tolerate at least some of the day to day smells--like various foods. But, it would be nice if those in the medical profession would take into account their patients' needs (and not just my sensory-sensitive kiddo, the patients with the ailments I listed above too). One would think, that those who work in hospitals and doctor's offices, would take that into consideration.

That's just my two scents...

Moved & Inspired

I watched the ABC special last night on Randy Pausch, a truly amazing human being. I typically don't watch these types of programs, but this one sparked my interest. I am so glad I watched it. To be honest, I don't think I've ever been so inspired by someone on television. I've spoken before on how the different challenges my daughter has faced, has given me tremendous perspective on our daily life, and on autism. Dr. Pausch has a perspective and a view on life, that is very rare (although, he says he's "not unique"). I was so moved by this program, by his lecture, and on this family's life.

I think for anyone dealing with any challenges in life (and that would be the majority of people in this world, I suspect), this is crucial to read or see. A lecture like this, these words of wisdom, really challenges you to look at your life in ways you may not have before. I know that raising an autistic child or a child with disabilities, is not easy. There are sleepless nights, doctors' and therapy appointments, meltdowns, etc. When you hear a man who is dying of pancreatic cancer, telling you he is happy and to not pity him, it really makes you think. I speak of "choosing" to focus on the positive, with my daughter and autism. For Dr. Pausch, that would translate into my being a Tigger versus an Eeyore. I love that!

For more information on pancreatic cancer, please visit the Lustgarten Foundation for Pancreatic Cancer Research. They are giving away 5,000 copies of "The Last Lecture" from 4/9 - 4/11 (as supplies last).

Here is the "Last Lecture," if you missed it:



We've been painting our home the last couple of weeks. After our master bedroom, it's time for the girls' rooms to be painted. We have been talking to them about choosing a color (for the older, it's between a light blue or lavender, for the youngest, it's yellow or red). I had planned on painting a mural or some fun designs on the wall. But, after being so moved last night, I think we will let the girls paint the pictures on their walls, if they want. I promise, Dr. Pausch (and I will post pictures here when they're done).

"If you lead your life the right way, the Karma will take care of itself, the dreams will come to you. And anybody who is out there who's a parent - if your kids want to paint the bedroom - as a favor to me, let them do it. It will be OK. Don't worry about the resale value of the house."

Thank you, to Dr. Pausch and his beautiful family for sharing their life, their story, and his lecture with the world.

This Whole Mito Thing (My Final Vent...Hopefully!)

This began on AutismVox when comments began rolling in here over the supposed autism-vaccine case that the Government conceded on. Truth is, it was a mito-vaccine case, and people who feel vaccines caused their child's autism have no reason to celebrate over this. The government is not declaring that vaccines cause autism, or mito, or anything. While I disagree with the government's decision on this one, I also see how very different it is from the autism-vaccine cases. For one, this one could actually prove that vaccines MAY have done harm BECAUSE of the mitochondrial disease. I still don't feel there was a case here, I think this child would have been diagnosed with mito vaccines or not.

Here is my comment I posted on AutismVox:

FYI...vaccines ARE recommended for children with mito!!!! Some are advised to avoid a shot, ONLY if a history of bad reactions exists (which holds true for the general population). My friends whose children have mito ALL vaccinate their children and are mortified by people who opt to not give shots to their kids because of quack science (vaccines=autism). Those un-vaccinated children put my child and my friend's children at risk for contracting serious diseases. Diseases that most certainly would land a child with mito in the ICU & possibly kill them.

Go here: http://www.umdf.org/site/c.dnJEKLNqFoG/b.3616911/apps/s/content.asp?ct=4211851 and read. I will also add, it is HIGHLY unlikely that a child with autism has mito, especially if that child has never been hospitalized, doesn't have severe health issues, eats on their own, there is no muscle-wasting, vision impairment, heart defects, etc. Read more about mito at umdf.org & see how autism doesn't equal mito, and how this case has nada to do with what Kirby is fighting for!

From a "mito mom" on a message board:

"For mito kids with no history of reaction, no family history of reaction, etc... the general agreement is that vaccines are not only reccomended but htey are more critical, as viruses are so dangerous for mito kids."

And, from actual doctors who work with mito patients:

To our understanding - it is not the immunizations themselves that are harmful in mitochondrial disease - but rather the potential for associated fever after the injection, since a fever might precipitate a "metabolic crisis."

In regards to immunizations and autism, medical authorities on the matter world-wide feel that there is nothing about the vaccines or the mercury in them that cause autism. There may potentially be a subset of children inherently at risk of autism that have their symptoms become more noticeable after any illness - including the fever brought on by immunizations. However, there is no good medical evidence to support such a theory either.

Your son seems to have had both, an allergic reaction (splotches) and regression (autistic behavior) correlating with the time he received the MMR vaccine.

If you have a concern that he will have another allergic reaction to the immunizations, I recommend that your pediatrician consult an allergist, to ensure that such a reaction is avoided. The allergic reaction might have been enough of a 'catabolic' reaction to bring out metabolic symptoms in him. For the vast majority of children and adults, the benefits of the vaccines do outweigh their risks - but in case your child is one of a few individuals who is more sensitive to the body's changes that occur after an immunization - I agree with approaching this matter with caution. In such a case, holding off on a 'booster' vaccine until he is older or more developmentally stable, is a reasonable decision.

There are no other specific guidelines or precautions that I can provide - except that any post-vaccine fever should be treated, and that he should be kept well-hydrated afterwards.

Answered by: Sumit Parikh, MD

And:

The medical literature has absolutely no articles on immunizations/vaccinations in individuals with mitochondrial disease. In the absence of any studies, there is only clinical experience and opinion. Personally, I know a few cases of severe complications following routine immunizations in children with mitochondrial disease, generally in those who were later diagnosed as such. However, in almost all of these cases the child stopped eating because of feeling ill, and I believe that most of the complications were actually provoked by fasting. Fever may be more common following immunizations in mito kids than in children in general, possibly because abnormal autonomic nervous system responses (dysautonomia) are very common in mito disease. Of course, febrile children are fussy and may not want to eat much. Since immunizations protect against serious diseases that could really cause complications if a mito kid were to get them, and because of my own clinical experience in that over a hundred mito kids safely received immunizations when certain precautions were taken, with my own patients my practice is as follows:

Immunizations act like common viral infections in that they can cause a child to have fever, nausea, poor appetite, and/or malaise (generally feeling bad). At these times, pay extra attention that your child is getting adequate calories. Fruit juices are one option to get quick calories in a child who is eating poorly. Fever increases energy demand, and should be treated with the proper amount of acetaminophen (Tylenol, etc.) or ibuprofen (Advil, Motrin, etc.). Seek prompt medical attention for continued vomiting, inability to take almost any calories for over 24 hours, and especially for lethargy (excessive tiredness) or an otherwise altered behavior (including excessive fussiness, confusion, etc.). Occasionally, IV fluid with D10 (10% sugar) may need to be given.
Any mito kid with a severe immunization reaction in the past should probably avoid immunizations altogether.

Answered by: Richard G. Boles, MD

To read the questions for the answers, please go here.


I'm going to just let it all go now, after I say these next few things. And, hopefully this will be the last time I post on this. This has got me so angered because of what mito is versus what autism is. Mito kills many children each year. A friend of mine lost her daughter at the age of 2. That is not autism. Trust me, anti-vax parents, you do not want mito. And, should it come out your child does indeed have mito, you'll wish you had gotten those vaccines.

I do feel Kirby perhaps brought to the attention of many one important thing: that in some cases, autistic symptoms can be attributed to a genetic, metabolic, or mitochondrial disorder. So, if you have an autistic child, it is worthwhile to do some screening for that. With regard to mitochondrial disease, I would only recommend testing IF a child had autism accompanied with feeding difficulties, hypotonia, movement disorders, organ defects, lactic acidosis, elevated liver enzymes, multiple hospitalizations, etc. If my child had autism that began with a true regression, I would more than likely look into mito as well. More advice, seek out the top doctors in the field. We had to hop on an airplane for our daughter's testing. It was all very expensive also, even with insurance coverage. Also, keep in mind that testing for mito includes having your child be sedated while getting a skin & muscle biopsy, a spinal tap, catheter for urine sample, as well as blood drawn. There is also substantial pre-op workup as well. This is not something to be taken lightly.

Lastly, I might add, with hesitation, something about these parents who are now jumping at the bits about mitochondrial disease. Hope beyond hope that your child does NOT have it. If your child has never been hospitalized, has never had surgery, is able to walk, doesn't need a tube in order to receive nutrition, be grateful. The injury you feel your child received--autism--from a vaccine, and I don't mean to be rude, pales in comparison to what most families who battle mitochondrial disease have to contend with.

I am so glad my child's results for mito came back negative. The period of testing & waiting was a nightmare, I was so scared. I wouldn't wish mito on my worst enemy. I pray that a real treament for mito is found SOON. My child has autism, and she also has a long list of other diagnoses and medical issues. She was born with heart and kidney (requiring surgery) defects, shd has a feeding tube with which she gets most of her liquid intake through, she has had various GI problems, many neurological issues, as well as breathing problems, the list goes on. The first 1-2 years of her life was filled with doctors visits, tests, and procedures. We have boxes, BOXES for her medical records. She's been hospitalized for rotavirus, RSV, and surgeries. She ended up in the PICU following one surgery. She has had 2 PICC lines. She's had MRSA four times.

I have incredible discontent for people who do not vaccinate their children. I read a mom's comment one time about when her children had one of those diseases (she doesn't vaccinate her kids), and how it was no big deal. Okay, maybe for your kid--but not for mine. My child, along with thousands of other special-needs kids would most likely be hospitalized, and be at far greater risk than her child. Kids like mine typically catch more germs when they are in a hospital. During an illness, things can literally be touch & go. My daughter has already contracted chicken pox (thankfully, she had receive the vaccine, so it was fairly mild, although she did have seizures during the illness), I cringe knowing the number of kids she is in contact with who are not vaccinated grows each day.

Each time my daughter gets sick, even with the "common cold," our reality is waking up every 2-3 hours to give her medicine and push fluids through her feeding tube, as well as monitor her for seizure activity, all of this to keep her out of the hospital. Often, her colds require breathing treatments as well. For her protection, and again with an end-goal of keeping her out of hospitals, our doctor prefers we call to receive medical advice (& even prescriptions) or in the event we have to come in, they immediately put us in a room. Her specialists whose offices are inside of a children's hospital ensure her follow-up appointments are not during the winter (flu season) months. We've been lucky that with each year, her overall health improves. I'm so thankful for her doctors who have been proactive and helped her overcome such odds.

To see her, you may not even realize how hard she's had to fight. But I remember, I will never forget the truly heart-wrenching times. I've said it before, the "worst" day with autism is the brightest most wonderful day compared to 5 seconds in the PICU with your child.

I truly hope that all these parents who are now chatting on and on (and in a sick way, getting excited) about mito realize how lucky they are. If they've not been touched personally by a disease like mito, or if their child has never been in the intensive care unit, or if other than autism, their child is pretty healthy, they have no idea. For the majority of them, they have no clue what it's truly like to see their child suffer.

David Kirby Asks Now What?? I'll Tell You...

Nothing, Mr. Kirby, now nothing. This case has done nothing for your "cause." This will not change nor does it declare that vaccines somehow cause autism. Read the facts! Perhaps educate yourself on mitochondrial disease. Oh, and Mr. Kirby--it is Rett Syndrome not Rhett (it was not named after Gone With The Wind), once again, get your facts straight!

Once again, he's at it, and he's pretending to be a balanced journalist by blurring all the facts. He almost entirely dismissed the MAJOR fact here that this child had a mitochondrial disorder (verified by a test, a gene identified). Having been through mito testing for my own child, and having a few friends whose children have a mito disorder, it's comparing apples to oranges (autistic children to those who have a mitochondrial disorder, along with or presenting as ASD). A child with mito cannot handle certain vaccinations, or need to use extreme caution with them. Likewise, these children have fragile immune systems, and often will be hospitalized for illnesses (ones that most children would never be so sick or be in the hospital).

Our daughter has several physical & developmental diagnoses. For some time, the basket of names included "autism-like symptoms" or "atypical autism." After age 3, she received the diagnosis of autism. This was after all (for the most part) genetic and mitochondrial disorders were ruled out. There are MANY disorders that can either have autism as part of it or in which the child's symptoms are similar to ASD. Children who are "mildly" affected by their genetic or mitochondrial disorder can sometimes go years before diagnosis. Because of my daughter's many physical health issues, the doctors still feel we have eventually have an "umbrella" diagnosis (i.e. genetic, mito, or metabolic identified disorder) in which all of her symptoms fall under.

If my child was found to have a mitochondrial disorder, there would be several immediate changes:
*Review of vaccine schedule, depending on the disorder, she may not have been able to receive further shots or have a unique shot schedule with multiple precautions
*Extreme precautions with anesthesia
*A letter outlying the steps for emergency personnel to manage the child's health during illness and/or emergencies
*A "mito cocktail" would be started, things like CoQ10 & L-Carnitine have been found to help those with mito disease
*We would have seen multiple specialists to rule out other signs or problems related to mito (a cardiologist, endocrinologist, nutritionist, etc.)

From the U.M.D.F.'s website:

Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.

Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.

Also from their site, the U.M.D.F. lists these symptoms: developmental delays, seizures, mental retardation, neuro-psychiatric disturbances, migraines, (OH AND) autistic features. So, if David Kirby took anytime to read up on mito, he'd be well aware that is nothing new. Many children either first diagnosed with mito go on to present with autistic features or that children diagnosed with autism may then go on to be found to have a mitochondrial disorder. This is true for other diagnoses too--how many kids are first diagnosed with speech delay, sensory processing disorder, atypical cerebral palsy, seizures, or static encephalopathy who go on to receive an autism diagnosis? I know of many.

There's this KEY piece of Mr. Kirby's "article" in which he, again, adds his own two-cents as fact:

Seven months after vaccination, the patient was diagnosed by Dr. Andrew Zimmerman, a leading neurologist at the Kennedy Krieger Children’s Hospital Neurology Clinic, with ‘regressive encephalopathy (brain disease) with features consistent with autistic spectrum disorder, following normal development.’ The girl also met the Diagnostic and Statistical Manual for Mental Disorders (DSM-IV) official criteria for autism.

Yes, that last sentence is Mr. Kirby's own. My child had the diagnosis of "static encephalopathy with features consistent with autism spectrum disorder" for a time. At that point, the doctors were quick to point out that didn't necessarily mean she had autism, or that in time, she would still exhibit those features. Of course, in time, she was diagnosed with Autism officially. If you were to research "encephalopathy" one would see that there again, PDD is a feature of, along with seizures, sensory issues, etc. Static Encephalopathy is my daughter's umbrella neurological diagnosis, encompassing her many neurological symptoms.

It is a shame that in this particular case, the child was not earlier diagnosed with mito, so that precautions could have been taken. However, I don't see anyone being at fault here. The only reason why I would think someone would be held accountable here would be if a doctor determined this child had mito disease, but failed to let the parents know (& then the child went on to have vaccines, bringing on more severe autistic features). The fact is, while it may be likely these vaccines affected this child and brought on the autistic features, children with mitochondrial disorder can often suffer regressions. Simple colds for you or I can land these children in the ICU. Illness can also cause them to lose previously achieved skills. So, even in this case and with the court's judgement, I do not think it can be said 100% that is was solely the vaccine at fault.

The silver lining is that the form of mito that she has, is one that does not immediately threaten to shorten her life. There are children with mitochondrial disease, who if they make it to their eighth birthday, it would be a miracle. A close friend lost their child at 2 years of age from mito. There are children who are never able to walk, to attend school, etc.

The real tragedy here has nothing to do with vaccines, mercury, thimerosal, or even autism. No, the tragedy is that this child has mitochondrial disease, and that it is something she'll have to deal with for the rest of her life. The silver lining is that the form of mito that she has, is one that does not immediately threaten to shorten her life. There are children with mitochondrial disease, who if they make it to their eighth birthday, it would be a miracle. A close friend lost their child at 2 years of age from mito. This child is now receiving the medical care she needs and will need for the rest of her life. Someone left this comment for Mr. Kirby's article, I have not verified it:

Now 6 years old, our patient has been treated with vitamin supplements since 2�����years of age. Even before starting supplementation, the patient began speaking again at 23 months old and had a four-word vocabulary of "bubbles," "ball," "drink," and "cracker." Levocarnitine 250 mg and thiamine 50 mg three times per day were initiated when the patient was 29 months old. Coenzyme Q 10 was added at age 33 months. Although she still exhibits mild autistic behaviors, our patient has continued to improve in language functions and sociability such that she now attends a regular kindergarten with an aide. There have been slow yet steady improvements in muscle tone, motor coordination, and gastrointestinal symptoms with occupational therapy, applied behavioral analysis interventions, and mitochondrial enzyme cofactor supplements. After the age of 2 years, growth trajectory has continued along the 75th percentile for both height and weight. Laboratory tests were repeated at ages 2 years and 10 months (aspartate aminotransferase 47 IU/L, normal <>

So, essentially this child no longer has the "Autism" diagnosis. But rather, she requires help for manifestations of her mitochondrial disease. So, once again, Mr. Kirby--what does this have to do with your "followers" whose (as far as they know) children do NOT have mitochondrial disease? Nothing.

If you read the facts, Mr. Kirby, it should be clear to even you that this case stands alone. I would perhaps suggest that if a child has autism or "autistic features," along with any physical issues, that the parents ask their pediatrician or neurologist about mitochondrial or genetic disorders. The treatments that may be available for those diagnoses, may help their child. Aside from that, there is nothing in this case to help "your side" or your ongoing anti-science declaration that vaccines cause autism.

To ready Kirby's "article," go here: http://www.huffingtonpost.com/david-kirby/government-concedes-vacci_b_88323.html#postComment

About The Artist & About What We Leave For Our Children

Being an artist myself, the information gained regarding that picture from my last entry peaked my interest. Glen Angus was a very talented artist, and he died tragically young. He describes the picture of his son here. It is worthwhile to read it, at least for me it was.

I think, if nothing else, a painting like this and the comments left by cs, should remind us all about the legacy we are leaving for our children. We are all human, and emotions can often take control of our words and actions. Parenting is a hard job, parenting an autistic child can sometimes be very emotional. It can be therapeutic to blog, "vent" on a message board, or paint, to better express our feelings and to "take a load off." But, I think we must always remember, first and foremost, that our children are beautiful human beings, full of life and with futures ahead of them.

I am only human, and I'm sure I may have said something at some point regarding my child that I'd prefer her not hear in 10 years from now. I remember crying to my husband one time about the future, and feeling so sad for my daughter. This was at a very emotional time, we had just received the autism diagnosis (on top of several others). We were on a roller coaster of physical health issues, and I was caught off guard (as most of us are!) at first for the meltdowns and other behaviors. I felt like a terrible mother, and mostly, I felt bad for my child who was having such a difficult time.

So, I get that. I've had those moments. I'm sure I'll continue to feel those natural pangs in my heart from time to time (albeit much briefer, as I'm now better prepared for our life & I have a greater understanding of autism). But, I'm a different person than I was when we first heard "autism." I know so much more, I know my daughter so much more. Just as I suspect Glen Angus would have felt if he were still here. I'm certain he'd have delighted in the strides his son was making, and feel much more hopeful.

This should remind us all to be careful of how and what we say regarding all of our children, autistic or not. In this day in age, with all of us blogging, hitting message boards, having MySpace pages, etc., our children will have an enormous internet catalog of our life. Our thoughts and feelings about them will be right there out in the open, should they be curious and able to investigate. I can say without a doubt that I would share this blog with my daughters without a thought. There may be some posts I would feel I'd want to further discuss and explain with them. I am honest here on my blog, and more than anything, I take into account the very real possibility of my children growing up and reading what I've written. We all need to be cognizant of what we say, in the real world, online, and most importantly in front of our children. I want to reiterate that the last part may serve as a very crucial reminder to parents on nonverbal children.

I am going to take the picture off. If you missed it and are curious, you can see it here, along with the artist's description.

About The Artist & About What We Leave For Our Children

Being an artist myself, the information gained regarding that picture from my last entry peaked my interest. Glen Angus was a very talented artist, and he died tragically young. He describes the picture of his son here. It is worthwhile to read it, at least for me it was.

I think, if nothing else, a painting like this and the comments left by Anonymous, should remind us all about the legacy we are leaving for our children. We are all human, and emotions can often take control of our words and actions. Parenting is a hard job, parenting an autistic child can sometimes be very emotional. It can be therapeutic to blog, "vent" on a message board, or paint, to better express our feelings and to "take a load off." But, I think we must always remember, first and foremost, that our children are beautiful human beings, full of life and with futures ahead of them.

I am only human, and I'm sure I may have said something at some point regarding my child that I'd prefer her not hear in 10 years from now. I remember crying to my husband one time about the future, and feeling so sad for my daughter. This was at a very emotional time, we had just received the autism diagnosis (on top of several others). We were on a roller coaster of physical health issues, and I was caught off guard (as most of us are!) at first for the meltdowns and other behaviors. I felt like a terrible mother, and mostly, I felt bad for my child who was having such a difficult time.

So, I get that. I've had those moments. I'm sure I'll continue to feel those natural pangs in my heart from time to time (albeit much briefer, as I'm now better prepared for our life & I have a greater understanding of autism). But, I'm a different person than I was when we first heard "autism." I know so much more, I know my daughter so much more. Just as I suspect Glen Angus would have felt if he were still here. I'm certain he'd have delighted in the strides his son was making, and feel much more hopeful.

This should remind us all to be careful of how and what we say regarding all of our children, autistic or not. In this day in age, with all of us blogging, hitting message boards, having MySpace pages, etc., our children will have an enormous internet catalog of our life. Our thoughts and feelings about them will be right there out in the open, should they be curious and able to investigate. I can say without a doubt that I would share this blog with my daughters without a thought. There may be some posts I would feel I'd want to further discuss and explain with them. I am honest here on my blog, and more than anything, I take into account the very real possibility of my children growing up and reading what I've written. We all need to be cognizant of what we say, in the real world, online, and most importantly in front of our children. I want to reiterate that the last part may serve as a very crucial reminder to parents on nonverbal children.

I am going to take the picture off. If you missed it and are curious, you can see it here, along with the artist's description.

A Letter Worth Learning From...

Must be the day, I seem to keep coming across worthwhile stuff, from parents:

This is a great letter, from a parent to her autistic daughter's kindergarten teacher. It's helpful for other parents, full of ideas on how to help a child through their school day. It is inspiring because you can tell this mom cares about & believes in her child, and is willing to offer any help and support for her child. These are easy accommodations, and I think the general public could stand to learn a bit from this type of letter as well.

Bending A Little...Gaining A Lot

I've learned a lot in this life. The most important lessons I've learned come from my children. I've come to realize that being a parent is, by far, the hardest job in the world. I've learned that hearing your child cry in pain can literally break your heart. I know now that much of what you read in parenting books and magazines won't always mesh with your life or your child. It's not the end of the world if your child is not potty-trained by a certain age. The supposed "experts" do not have all the answers. The biggest thing I've learned, is that sometimes, you have to bend a little.

We've had to alter our preconceived notions, the ideas we had about much of life. We've realized that hearing the words "Mommy" or "I love you" are not the most important thing in life. Seeing your child sign those words, or point to a picture card to express those sentiments, is simply beautiful. I've literally had to remind myself early on that my child is not rejecting me or disconnected from me because she doesn't want to hold her mother's hand, or give a hug, or play pat-a-cake. As an infant, my daughter would just stare off toward the windows, or just off into an abyss. To be honest, there were times it did hurt me. I felt I must be doing something wrong. How could my baby not laugh at me doing a silly dance? Why won't she react to me playing peek-a-boo? What does it mean when your baby never stares longingly in her mother's eyes?

We had wonderful doctors, and so our education and understanding into developmental disabilities began at our daughter's 6 month well-baby visit. We knew very early that our daughter had delays. I knew instinctively that my child was different, before any professional told us. I would read notes from doctor's appointments, see test results, and go over her diagnoses. I understood them. But, when you are a mom, and especially when you've had those early bonding experiences with another child, the day to day things affect you. All those 'missed' moments can bring you down.

For some time, I had to constantly tell myself that this was not a personal insult. I was not a bad mom. My child was not a bad egg. I just had to try more, try better, try differently. My daughter liked fans, I bought a small toy fan. My daughter liked lights, I bought toys that lit up and spun. She then liked what I had. Little by little, I learned what steps to take to get involved with my child. I never expected her to just "snap out of it" and be like her sister. I knew I had to approach this entire experience, raising our youngest, in a whole new light.

Those early lessons and realizations have continued. They change, and as my daughter gets older, I know they will continue to do so. But it's still about meeting my daughter somewhere in the middle. Not trying to alter her or force her into something that would make her uncomfortable. No, it's about finding what works for her, and trying new things. I still feel at times, that my parenting "bag of tricks" that I had for my older daughter just doesn't work with her sister.

When you learn to throw out the ideas you may have previously had, your life will get better. When you start to bend a little, the gains just may be huge. My daughter usually does not enjoy being kissed. Sometimes, she may give you a real kiss. But, often, she'd prefer neither. So, we've come up with alternatives. Of course, high-fives and thumbs-up are big ways for us to "kiss" in our own way. Lately, she'll enjoy our lips brushing her cheeks. A new "kiss" is simply pressing (unpuckered) your lips against her head. This works. It's great. It's a kiss. It's a unique kiss, and it's wonderful.

We have never made our child look us in the eyes. When she talks, we try to have her toward us, simply so we can hear. We do this by asking her "can you turn to me?" just as I would her sister. We often crunch down to her level, so we can hear her. I will never forcefully pull her chin up or demand she look me in the eyes. I do not think she would ever speak, if we treated her in this manner. We don't force her to wear very fancy clothes, lace and frills drive her crazy. Most outfits are soft cotton, nice & comfy.

We don't scold her for stimming, rolling around, jumping, or screeching. We have found ways for her to ease her sensory system and ways to work out some extra energy. We encourage her to use a sit & spin, her spinning chair, slide, trampoline, bouncy ball, etc. We have sensory toys, beanbag chairs, a tent, all sorts of things around the house. To us, there is no other way. I can't imagine anything other than accepting my child, and giving her a loving, caring, & fun environment that suits her needs. I'm not being a super-mom, I'm not a saint, I'm not doing anything above and beyond the call of duty (in this case, being a parent). I'm being a mom, I'm loving my child. It's simple.

I wish, above all, that other parents will see that this is Autism everyday. And it is a beautiful...

My Life, My Child

Life with autism is not a bowl full of cherries (neither for the parent or the child). It is stressful. Days are long. Nights are often longer. There is screaming. There is crying. There are IEP's and school issues to contend with. There may be therapy and doctor appointments. Yes, life with autism can be difficult. But autistic children do have souls and they have not been kidnapped. They will not die from autism, and no one should ever announce repeatedly in public that they have considered ending their autistic child's life. Autistic individuals deserve the same respect and rights afforded to every other human being.

The most important thing I feel I've done on this leg of my journey (autism that is) was to reach out to adult autistics. Today, with online communities, autism blogs, and published books, reaching out to autistic adults is rather easy. These adults have given me valuable insight into my daughter. They tell me their own personal stories, what they have gone through, what helped them growing up. Mostly, they gave me a whole new view of autism. Their stories and advice are priceless, and have changed our family and our outlook so much. I would suggest to any other parent to connect with the adult autism community. You will feel empowered and hopeful, for sure.

As a parent, especially when your child is first diagnosed, you pick up nearly every book on the the subject and then (of course!) you Google autism. Without fail, Autism Speaks is one of the first you will come across. I remember visiting it early on and reading their material. I watched a movie they had produced, Autism Everyday. I saw lives out of control. I saw children out of control. I saw horrible tantrums, parents who were desperate. I saw so much of my life in that film. I cried as I watched it. I could relate to a lot of it. For most parents, the next step is trying to find a cause, and therefore a blame.

For me, our daughter has had health issues since birth. She never had a regression. So, for me, it's apparent our daughter's autism is genetic. I feel she was autistic in the womb. Now, whether all cases of autism are genetic, I do not know for sure. I do think it's possible some children have an immune response to vaccines (I don't think it's mercury) and I don't think it would hurt to look at how we vaccinate our children (perhaps less shots at once, maybe). I believe the children who make almost overnight progress by dietary changes, probably did not have the same type of autism that my daughter has. It is possible that these children experienced behavioral and psychological changes due to allergies and intolerances. I never needed to find something that I could point to and say "YOU did this to my child!" For me, I just don't think that would be helpful.

Trust me, I have felt sadness. I have felt bitterness. I have felt desperate. I have felt heartbroken. I have those moments. I cry. I allow myself pity parties from time to time. I will cry, I sit and talk to my husband, I speak to other parents, I journal, I blog, I listen to music. I let myself feel those emotions, I identify them, and I deal with them. And then, and most importantly, I move on. I have chosen to focus on the positive. I truly don't think those experiences and the emotions I feel are unique to me, my situation, or to autism.

Life with autism has joy. There is hope. There is laughter and smiles. There is music and dancing. I made a choice to accept my daughter--all of her. I can't even say it was a choice, it was natural, she is my child, my flesh and blood. No matter what, I would love her and always will. Autism, or any other label or diagnosis, would never, could never change that! Making peace with autism sets you free to enjoy your life and your child. I do not feel like I've been cheated, not at all. My daughter has changed me, I find such beauty in the details. The little things, in life with autism, they are so significant and endearing. My children are both unique gifts and truly the greatest of all blessings. I would not change my life for anything.