Vaccines: At Some Point You Have to Trust Somebody
Former CDC Head Makes Millions On Merck Stock

Patience and Progress

Flag heartBy Kim Stagliano

On Saturday, I was at my Okinawan weapons class when a student, another adult, said to me, "You know what? There is a video channel devoted to complaining about you!"   He was shocked. I laughed. He was kind of shocked that I laughed.  But you aren't, are you?

We all know the sites and commenters and bloggers who love to claim that we don't love our kids. We don't  even like our kids. We are bad, bad, bad parents because we want to "change" our kids.    Can I have a "get real!"?

Every parent I know with a child who is a toddler or  in his or her late teens or an adult works non-stop to make life better, safer, healthier and dare I say it, more "normal."  Doesn't matter what they think in terms of causation, vaccination, education; autism parents make James Brown look like a slacker.

Later on Saturday, Bella, my youngest, brought me her shoe.  She sat down and expected me to put it on her foot and tie it. I did not. (Oh dear, maybe I am a bad mother after all!)  No indeed. I sat in front of her, dead silent. No expression on my face. I waited. Tick tock tick tock.  In about 45 seconds she bent down and put the shoe on her own foot.  Step 1 accomplished.  I kept quiet. Stared at her.   Another 45 seconds passed and then she said, "Puh."  Doesn't sound like much does it? But I knew that "puh" is the last sound in the word help. Bella was asking me for help. 

Yesterday, she came to me again with her shoe. Here, I'll show you what happened. (Sorry, I never remember to turn my iPhone sideways.)




More communication! She brought me her GoTalk and told me what she needed. Imagine a world where you have to work so hard to tell someone something so basic. Frustrating, yes?  This is the world my girls live in every day.  This is autism in our home. Perhaps it's similar in your home. 

Do I want to change life for my kids?

Go Talk Yes

House of Cards 200 pixelsKim Stagliano is Managing Editor of Age of Autism. Her new novel,  House of Cards; A All I Can Handle 50 pixel Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book. Her newest book, co-written by Tony Lyons, 101 Tip For Parents of Girls with Autism is available now.

Comments

Mary Podlesak

Bella, as her name implies, is a beautiful girl. I hope you consider making a movie about your girls, their challenges and their achievements. The world needs that documentary.

Gayle

Kim, you are a wonderful mother and an inspiration to all of us autism parents! I always look forward to reading your posts.

Shannon

You are an awesome mom. Best kind of cheerleader. Just what Bella needs.

Trust is gone

You can have a million "get reals" Kim. I'm sorry too that so many sociopaths and soulless types try to reframe what you are about which is simply a parent who wants the best for their children and a chance at a relatively normal, comfortable life.

Elsie R.

Well done Bella! Our kids are soooo smart!

Patience (Eileen Nicole) Simon

Bella is a beautiful young woman, and her cry for help goes way beyond getting her shoes on.

More such videos of our children should be out there. What an outrage for anyone or any group to chide us that we need to be more accepting! Awareness is totally lacking among those who promote the sickeningly sweet idea of neurodiversity.

My son is higher functioning than any of these loudmouths, but he remains severely disabled by autism. Last summer at Spectacle Island in the Boston Harbor, my son got on the boat back to Boston, then the cable went up in front of me and the boat departed.

"My mother's not on the boat!" he screamed, jumping up and down.

I was quickly put on a small boat with a few others. I called on my cell phone. How lucky that he is able to use a phone, which is impossible for most autistic people.

"I see you, I see you!" He exclaimed.

The woman sitting next to me told me, "Your middle name must be Patience."

I thanked her and said, "Patience is my new first name!"

I remembered this yesterday as we went out on Boston harbor for the first time of the coming season.

Susan

Bob, Sears always seems to have a lot of sneakers with velcro . Here's a link to their website.
http://www.sears.com/search=velcro%20sneakers?QParsing=0&s_tnt=62651:0:0

Hera

Kim , you are a wonderful Mom. Your patience and kind voice are inspiring when you talk with your beautiful Bella.

Bob Moffit; we just celebrated our youngest being able to tie his shoes himself for the first time at almost 13. It was a slow process that started years ago with him having to do the very first cross of the two laces while we did the rest. He recently surprised us all by being able to do it completely .

I don't think much of any teacher that would insist on pupils not being able to wear the types of shoes that accomodate their disabilities.

In good news though, there are "no tie shoelaces" out there which come in a variety of different styles and colours that you can thread through regular shoes; you can find them on google. Also if you are in the U.S. Payless has some plain black Velcro closing sneakers in men's sizes..

Denise Anderstrom Douglass

Wonderful, thank you!

Vicki Hill

Bravo, Kim, for all you do for your daughters as well as for others in the autism community.

Several people here have mentioned the problem with shoe-tying. My son is 27 and still has this problem (plus BIG feet). Our solution: we order his shoes from HealthyFeetStore.com. For younger kids, Google "velcro kids shoes" and you will find quite a few choices, including plenty via Amazon. Sometimes it is simply easier to find a solution to work around a problem than to insist that our kids have to do everything the conventional way.

Grace Green

Kim, and Bob, I think here in the UK you can get slip-on sneakers, or gym shoes as I still call them, with a section of strong elastic on the top to hold them on. Keep looking. Good luck!

nonnymouse

About shoelaces.

Of course, the point here was much much bigger, and more important than the shoelaces.

Some years back, a discussion among Parkinson's patients and caregivers brought up the same issue. Shoelaces. Because of their increasing motor difficulties.

Answer (for some) was elastic shoelaces. Once tied, they stay tied -- not forever, but long enough to pull shoe on and off several times. Perhaps many times.

If they are hard to find, I wonder if there is some kind of small-diameter bungee cord type of cording that could be a substitute?

Would get around the no-Velcro rule, anyway.

Ann Dunn

@Bob New Balance makes shoes with velcro. I got them thru JCPenney.com last year for my daughter.

Not an MD

Bella is so beautiful, Kim. Her obvious frustration in trying to express herself verbally is upsetting to watch for everyone who either has a child on the spectrum or has a heart.

I am sorry that you face so many heartless, soulless, nasty people in your path as you advocate for your precious children. There are way too many sociopaths in the world.

Jeannette Bishop

Thank you, Kim! Great work Bella!

On the topic of higher altitude, higher SIDS...doesn't higher altitude mean higher oxidative stress, lower cellular energy ...which IMO points again towards the environmental culprits which includes cellular pollutants via injection. I guess I have to be grateful we were vaccinating my injured daughter at near sea level at least in her first year or maybe she wouldn't be with us today...

Beth

Picture the ending of the movie Dangerous Liaisons where all the people of the town at an elegant gathering start tapping their chairs and boo'ing Glenn Close's evil character. Her behavior was appalling and when it was exposed for all to see, she was shunned and shamed by all the people around her.

This too will happen to the autism mom haters. In time.

Shame on anyone who's hellbent with an agenda and paycheck such that they purposely inflict pain on any mom who is struggling to try and find creative ways to help their children with special needs.

KFuller

One word at a time. Our kids work harder than anyone.

Laura Hayes

Thank you, Kim, for sharing your family so that others can better understand what a day in our "shoes" is like, and hopefully find some compassion in their hearts for our children and for our family situations.

Your video clips are always so effective at giving a real-life glimpse of what vaccines do to our once-healthy-and-normally-developing children.

My new mantra has become:

Vaccine Injury is real, and it isn't rare!

Never, Never, Never Give Up!

@ Bob M.

I had just about given up hope for my children to learn how to tie their shoelaces (they are both lefties), when something quite miraculous happened. A sympathetic, left-handed boy taught my son how to do it one day at school, just a couple of years ago, when the school bus was delayed due to a breakdown, and all the kids on that bus were just sitting around in the gym waiting for an alternate bus to arrive. I am so grateful for that boy, whomever he is. My son didn't even know his name, so the boy was a stranger to him. I had a terrible time getting my children motivated to learn this task, and then, there was the problem with coordination and muscle tone.

Then, another wonderful thing happened, one day about a month later, my son helped my daughter learn how to tie her shoelaces. It took her longer to master the task-- about a few weeks of concerted effort, but there was that competition thing between them, and that then served as her motivation to succeed. Good old sibling rivalry to the rescue. I think that sometimes it helps much more when one of their peers gets involved. Perhaps we are all pre-disposed to ignore our parents, relatives, and teachers on occasion, when it comes to certain things.

My fingers are crossed for your grandson, Bob. He can still learn this difficult task. It never really is too late to learn anything. Perhaps given just the right motivation and just the right teacher, he will come to master it. I sure hope he will.

You are right. I haven't seen many velcro sneakers or shoes at shoe stores lately. I don't know why that would be.

go Rand

BREAKING NEWS news today from a sister organization, the SIDS people. As we all know SIDS (sudden inoculation death syndrome) is NOT caused by vaccines either.

In a population study, there is NOW a LINK to ALTITUDE and SIDS. Higher rates at higher altitudes. As you might guess, MORE STUDY and MORE FUNDS are needed. There are about 2000 SIDS deaths a year in the US, peaks at about 2-4 months of age. We probably lead the world in this statistic also.

NO EFFORT was made in this study... to investigate any individual child... to attempt to locate the real reason they might have died.

Bob Moffitt

@ Jenny

"My 'Wakefield Babe' autistic grandson is 22 now and just cannot tie his shoelaces. The answer? VELCRO, which he has no trouble with at all. Most of all, these days it's cool!! Distressingly, the head teacher of his former high school has banned velcro shoe fastenings. This teacher needs some education!!"

I have been using VELCRO tie sneakers long before our grandson "regressed" .. and .. having VELCRO for him has proven to be a blessing as I don't think he even likes the "feel" of shoe laces on his feet.. let alone having to tie them everyday.

Unfortunately, my wife tells me it has become harder and harder to find VELCRO tied sneakers for myself let along our grand son. Why would they stop making VELCRO ties for sneakers ... for any age?

Never, Never, Never Give Up!

Thank you for sharing Bella's experience. It reminds me of a time when my son refused to eat with a fork. He was lacking some motor skills and muscle tone needed to truly control the fork, and knowing it would be difficult to eat with a fork, he refused to use one. He used his hands instead. The school OT at the time told us at our first IEP meeting that my son would "never" eat with a fork, as "the window of opportunity" had closed. Quite the ballsy proclamation considering my son was only four years old at the time. What a devastating comment that was, coming from a supposed "expert." You know how we are told to trust the experts.

Using the tough love approach, the very next morning, with a plate full of gluten free waffles, we threatened to throw out his favorite toy, Thomas The Tank Engine, if he did not eat his waffles with a fork. After a stormy 1 1/2 hour standoff, my son picked up that fork, and ate his cut up pieces of waffle using it. Thankfully, that horrible OT left the school to go to another state. If she had stayed, I wonder what, if anything, my son would have accomplished having such a negative and closed minded "role model". Only people who believe that our children can be encouraged and taught to accomplish tasks, no matter what they are, should be working with them. Sadly, sometimes only the tough love approach can motivate our children to push themselves to achieve certain cumbersome goals that require physical coordination and effort.

And yes, I was one of those mothers who did everything I could for my children, before coming to the important conclusion that I was hurting, not helping them, by doing so. Fast forwarding many years, my son sometimes asks me for help to cut a tough piece of food on his plate. I now refuse, telling him he needs to build up his muscles, so he can do it himself.

Stagmom

Benedetta - thanks. He was shocked and horrifed and coming to my defense. He is very understanding and interested in the girls and how we function as a household.

Benedetta

Kim; I am sorry that you were in a class blowing off steam and you have one of the great masses of the propagandized uninformed come tell you about a nasty website But then again; I suppose we all must be made aware from time to tome just how uninformed those around us really are about the whole subject of vaccines and vaccine safety. They all are so blissfully ignorant of the corruption at the CDC, HHS, NIH, NIMH - our government when it comes to medical stuff.

I saw my best friend in high school this week end decorating her parents' graves. She became a nurse later on in life and she is now suffering from spring allergies - even to the point she lost her voice. That is new! It was always me in my youth that had spring allergies not her.

She said she took a Hep B series and they were terrible, then she did as they said and took a flu shot and she said she was never so sick in her life. That she will not be taking another one - she will wear the mask if she has too.

Her main concern is her worry over her her younger brother who lost his son a year ago. Her nephew was only 23. She had advised him and he was doing it - going to become a statistician. I think my friend feels like she wasted her talent in math and was making sure he like his family was very gifted in math was going to use it. He had his BS in Math and had one more semester to go and he would have had his masters at only 24 years old.

The family found him dead in their game room one weekend. He had an arrhythmia (they think) of the heart and died suddenly.

I told my friend that the first vaccine reaction my daughter had - and I did not know cause it was 7-8 weeks after her fourth DPT shot was Kawasakis and one of the long term outcomes is such stuff as that. That my son's first reaction to his first DPT shot - was a heart murmur and a swollen left ventricular. That I had lived in constant fear that the same thing that happened to that young man would happen to our family.

There are a lot of things like this - a lot of names like this that will go on the wall of shame some day.

Blood is on the hands of the very ones writing this website. And I am getting tired of the blissful ignorance, from everyone!

.

Susan Senator

Kim, I love you and I love Bella! Nice work on both your parts!

Jenny Allan

Well done Kim and Bella. It's very important parents of special needs children resist the temptation to do everything for them. One day you will not be here to put on their shoes and help with everyday dressing, washing and other tasks. Many years ago I was told by an occupational therapist, to find ways of making such tasks achievable, by making them as simple as possible. These days the computer technology helps, but should not be completely relied on.

My 'Wakefield Babe' autistic grandson is 22 now and just cannot tie his shoelaces. The answer? VELCRO, which he has no trouble with at all. Most of all, these days it's cool!! Distressingly, the head teacher of his former high school has banned velcro shoe fastenings. This teacher needs some education!!

Like you I laughed about the 'video channel devoted to complaining about you'. When Brian Deer called me a 'belching sow' on an IS comment thread, following a comment I made on AoA. I KNEW my MMR vaccine campaigning was 'hitting home', otherwise why would they bother?

Bob Moffitt

I find myself telling my wife on occasion .. that our little guy (now fifteen and far from little anymore) can be stubborn and cleverly manipulative when he doesn't want to do something he "can" do .. but .. simply prefers "not" do.

Recognizing the difference between his "problems" and his stubborn "personality" can be humorous at times .. as we sometimes marvel at how creative he can get while trying to manipulate us into doing something for him.

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