WARRIOR MOM_S AND DAD_S

[Guest guest]

Thoughts From A Recovered Parent

Going it Alone... but Never Lonely

By Kendra Pettengill

K & K

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Last Tuesday, McCarthy took the couch on The Oprah Winfrey Show,

declaring the truth that autism is treatable, and that there is recovery for

some families. And I felt vindication and joy - at last. My favorite moment

was at the end when Oprah leaned in and whispered to and Holly

Peete, " You are Warrior Moms. "

I thought to myself, " Yes, we really are. "

But it occurs to me that 's ardent declaration might bring little

comfort to the parents who write to us here at ARI asking, " What about us,

the have-nots? " Just like the rest of us, was given no guidebook to

autism. She experienced the same bewilderment and felt marginalized by

detached pediatricians and other experts, just as we did. And despite fame,

beauty, and financial means, had to learn how to help her son in the

same trenches as the rest of us, with messy hair and no makeup, in front of

her computer in the middle of the night. When she called it " the University

of Google, " I realized we were kindred spirits.

Once got the information, she had access to resources that many of us

could never afford. I am more typical: as a single mom, I work 40+ hours a

week, and I make around $30,000.00 a year.

But here's the good news: I recovered my daughter.

Recovery on a Shoestring

I did it alone. I did it without a doctor. I did it without any professional

help and without assistance from any government agency. I did it alone, but

I was never lonely. I did it with the " University of Google, " and Oprah's

" Warrior Mom " mentality. I did it with dogged determination, sacrifice,

intense research, and the personality and mental state of a grizzly bear

protecting her cub. In effect I became a medical expert, a nutritionist, a

biochemist, an ABA therapist, a special-education attorney, a mediator, an

advocate, and a courageous communicator. Without fear or hesitation, I

called authors and experts I came across in books and on the internet, and

found that many answer their phones just like you and I do.

Our founder, Dr. Rimland, was one of the easiest people to talk to on the

phone, and one of my biggest cheerleaders and supporters for going it alone.

One of his greatest fears was that parents would get the message that they

couldn't do most of the treatments on their own, while it was his firm

belief that they could, and should when possible.

I was never lonely, because of fellow parents. My angels and saviors were

the many amazing people I met online. Some formed shoestring non-profits

just to help other parents. Some hosted internet groups aimed at

facilitating the autism conversation - help, advice, and support for

parents. From clarifying intricate technical questions to providing

shoulders to cry on, we carried each other through our journey to recovery,

for no pay, fighting together for our children's health and dignity.

My daughter's diagnosis was " severe autism. " I was told she would never

speak and that she was mentally retarded. She spent her time rocking,

flapping her hands, pulling her hair out, biting her arms and hands until

she bled, and banging her head on the floor, the furniture--or even a

concrete sidewalk--while having one of her hundreds of meltdowns. I was told

that as she got older she would turn her rages against me. The advice I was

given was, " Take her home and love her until you have to put her in an

institution. " I was advised to contact a lawyer to set up a " life plan " to

care for her for life. This is when parents are typically provided the " no

known cause, no cure " information by " acknowledged experts, " or are told to

" Just have another child, " as if the ones we already have are disposable.

Instead of giving up on my precious child, I decided to fight back, and the

truths I uncovered are astounding. I have read more books, studied more

scientific research, examined more policies, cried tears of sadness and joy,

and reveled in the amazing return and recovery of my beautiful daughter, the

greatest love of my life. I endured clueless criticism from those who

claimed to understand my motives as well as my emotions.

Why Me?

So what led to recovery? It's clear that while I did everything I could

think of, I did not recover my daughter because I was more determined than

other mothers I know. I did not recover my daughter because I spent more

money than others. I did not recover my daughter because I made more

sacrifices, or because I'm smarter, or a better researcher, or made better

connections than other moms.

My daughter recovered because she happened to be a " nuclear reactor. " That

is, just as my daughter was pre-programmed or susceptible to be damaged in

the first place, she was for some unknown reason " susceptible " to recovery.

I feel lucky, but I also feel something like guilt. The initial " Why me? "

when my daughter was diagnosed with severe autism has been replaced with a

new one: " Why should it be my child that recovers, when others don't? "

So I've dedicated myself to this cause: I want to see every child make

progress, whether that means full recovery or just being healthier and able

to live free of physical pain, because treatment is not only about recovery.

'Haves' and 'Have-Nots' are useless labels

In most ways, I was a " Have-Not. " Denied professional assistance and unable

to afford treatments, travel, and conferences, my daughter seemed a hopeless

candidate for the biomedical approach. What I did " Have " : A loving and

supportive family. All the money in the world can't buy a spouse's support

for your biomedical endeavors, or stop relatives entrenched in the

allopathic medical paradigm from attacking you for your views and efforts.

Those parents who are not abandoned by family and friends after the

diagnosis are in many ways the best equipped for this difficult journey.

Paired with that kind of support, the little money it takes to correspond

with other parents on websites and chat boards will go far.

Take-away Message: You Can do This

1. You can do most treatments for your child on your own!

2. No, it is not easy.

3. It takes a lot of self-education.

4. The diet and supplements take a little more money out of your

budget, but you can do it.

5. Understand that there are thousands of other parents out there who

understand your mission is the ultimate act of love for your child, and

ignore those that say otherwise.

6. Educate yourself on special education law, and become an advocate

for your child.

7. Use whatever resources are available to you, without guilt.

8. Take care of yourself as well as your child, because you need to be

present for the long haul.

9. Don't be bullied by anyone into doing something you don't feel

comfortable with, or your " mommy instinct " tells you isn't good for your

child.

10. Never lose faith.

11. Pay it Forward. Help another family to find the truth that autism

is treatable.

12. Support ARI and Defeat Autism Now! because they are

forward-thinking national organizations dedicated to supporting individuals

living with autism today.

Support ARI and Defeat Autism Now! as they are transparent, forward-thinking

national organizations dedicated to supporting individuals living with

autism. ARI conducts research and openly shares information that makes a

difference now - not next year or in 10 years. ARI's research is not

compromised or affected by conflicts of interest from pharmaceutical

companies, or by any governing body. ARI listens to parents, and honors our

stories as eyewitness testimony. Parents and organizations that have

benefited from ARI's aid have joined forces with ARI to help forward

research that makes a difference. Its integrity is why I work on ARI's

newsletter, and mentor families.

So, to all Warrior Moms and Dads out there wondering if it can be done, let

me offer you the encouragement you need: Autism is treatable, even for

regular people like us