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Melissa Ann Welty The Diagnosis just keep coming

My twins, my husband and myself just got back from the NIH in Bethesda, Maryland middle of last week. We flew there to participate in a twin/sib discordant study that Dr. Lisa Rider is doing for Juvenile Dermatamyostitis patients. Shelby's symptoms had improved so much since starting the prednisone back in March. As we started weaning him off though the symptoms began to come back with a vengeance. The day before yesterday I noticed his hands had turned blue again. He's back in a… Continue

Added by Melissa Ann Welty on August 31, 2010 at 6:53am — No Comments

Gaynell Payne red cars

I thought J said something about “…a pen and cars,” as he passed through the living room excitedly on his way upstairs. Typical busy-mom style I muttered “Uh huh. That’s nice honey.” Maybe he’s going to get some of his cars to play with. I wasn’t sure what a pen had to do with it, but he’s 3.

… Continue

Added by Gaynell Payne on August 25, 2010 at 4:16am — No Comments

Gaynell Payne Grief: Mine Clarified

Mid September last year was the turning point in my life. That’s when we learned what we had grown to suspect; all was not as it should be. That’s when we learned that my son is special needs. Through the course of a year we’ve been on excruciating waiting lists and had various assessments. Some gave answers and some just brought more questions. September was the beginning, and each assessment

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Added by Gaynell Payne on August 21, 2010 at 7:10pm — 1 Comment

Paige First time blogger

Not sure how much time I will have to blog but I will give it my best shot...being a single mom to an 8 year old boy with aspergers and adhd while working full time doesn't leave much "me" time... getting ready tonight to take a trip to Boston tomorrow - about 3 1/2 hr drive -going to the New England Aquarium hope all goes well..... Continue

Added by Paige on August 20, 2010 at 7:20pm — No Comments

Jean Carroll The Scales of Injustice

Who invented the bathroom scales?
Surely they are the work of an evil genius, if not an imp of the devil Himself.… Continue

Added by Jean Carroll on August 20, 2010 at 7:02am — No Comments

Jean Carroll http://planetoutreach-asd.blogspot.com/2010/08/its-cruel-cruel-summer.html

I always knew living with autism was hard but only, it would seem, in an academic kind of way.
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Added by Jean Carroll on August 17, 2010 at 3:56am — No Comments

Carrie Natsia *Princess monkey pants*

For the past few years I have been a volunteer reader and writer for children with special needs sitting their exams.

It has to be one of the most rewarding things I have ever done :)

Over this year and last I have developed a strong bond with one of these children ,I shouldn't call her a child she is 18 now and we are sitting for her trial HSC at the moment (eeeck, HSC it gives me a head ache just thinking about it)

You see I was one of the unfort

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Added by Carrie Natsia on August 6, 2010 at 3:40am — No Comments

Melissa Ann Welty The mother lion

Have you ever hear the expression mother lion or mother bear? Have you ever been called that? I have. I don't want to be a helicopter parent hovering over my kids all of the time. I want them to be capable, competent happy people. There are times when the anger is so huge that it overwhelms me. I had to go back to THE doctors office today. The same doctors office where they basically said there was nothing wrong with my little boy, that he was making up his symptoms. I digress. Anyway I walked i… Continue

Added by Melissa Ann Welty on August 3, 2010 at 7:22pm — No Comments

akbutler Shout

This was going to be a post today about the power of words. About how important it is to choose our words and tone carefully when we speak to each other because you never know what is going on behind that other person’s closed doors. About we should use our words to lift each other up, and not to knock each other down.


But life got in the way today.


Today I finally took my head out of the sand and brought my youngest in to our doctor for a referral for

… Continue

Added by akbutler on July 27, 2010 at 5:47pm — No Comments

Liane Carter The One-Two Punch of Autism

"Your child has autism."

It's a devastating diagnosis for a parent to hear. But it's a one-two punch when your insurance company then refuses to cover the critical, medically necessary therapies your child desperately needs.

When our then-2-year-old son was diagnosed with a developmental disability 16 years ago, a team of medical experts prescribed a rigorou

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Added by Liane Carter on July 26, 2010 at 10:11pm — No Comments

Jennie B What are the chances?

My brother died of a brain tumor in 2002. This March marked the eighth anniversary of his death. Sometimes it feels like he was here just yesterday. Other times it seems like a lifetime ago; in many ways it was. Since his death, I’ve worked at three companies, met and married my husband, got a dog, bought a house and had two children, one of whom has special needs. Today, I identify more with “mom” than with the person I was when he died: recent MBA grad, focused and serious but willing and a

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Added by Jennie B on July 21, 2010 at 11:27am — No Comments

akbutler You've Got A Friend

When I became a parent for the first time, I sought out many different mothers who had been there before, learning all I could from them in an attempt to become a better mother myself.


When I became a parent of a special needs child, I only sought out one.


Let me tell you about this friend of mine.


And even though I have chosen to share our story publicly, she has not. So for the purposes of this post, I will call her “Hope”.

… Continue

Added by akbutler on July 19, 2010 at 5:28am — No Comments

akbutler Taking Chances

t was another one of those nights when I couldn’t sleep. By 2am, one kid had woken up once, another twice, and I was wide awake from my efforts to get everyone back to sleep again. So, as I usually do, I just laid there in bed thinking. Sometimes I think about what to pack the kids for snacks for camp. Or I wonder if I forgot to put the laundry in the dryer. Sometimes I think about the long list of things I haven’t been able to get to. This was one of those nights.

But instead of the thoughts

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Added by akbutler on July 13, 2010 at 12:47pm — No Comments

Carrie Natsia Inspirational!!

http://carriemumof2withasd.wordpress.com/2010/07/11/inspirational/ Continue

Added by Carrie Natsia on July 11, 2010 at 6:54am — No Comments

Carrie Natsia Is sitting in public a crime for those with Autism?

This is very upsetting! I feel it need to be shared!

http://carriemumof2withasd.wordpress.com/2010/07/11/is-sitting-in-public-a-crime-for-those-with-autism-via-punaunis-blog/

Continue

Added by Carrie Natsia on July 11, 2010 at 6:19am — No Comments

akbutler Our Lips Are Sealed

I’m a pretty private person.

I know that seems weird to say, considering I write this blog now, but in the non-virtual world I’m pretty good at keeping things about me to myself, only sharing with close family and a few select friends.

This need for privacy is certainly something I learned from my parents, and especially my father. Despite his very public political life, our family life was kept behind closed doors. Nothing illustrated this more than when he got sick with pancre

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Added by akbutler on July 5, 2010 at 7:41am — No Comments

Carrie Natsia "ONE AT A TIME"

http://carriemumof2withasd.wordpress.com/2010/07/05/one-at-a-time/ Continue

Added by Carrie Natsia on July 4, 2010 at 9:28pm — No Comments

Susan Levy The Teen Years are Tough

Taken from my blog, Taking the Awe Out of Autism http://aweoutofautism.blogspot.com

One of the interesting things to emerge from my blog is that parents are emailing asking for advice on what to do with their own teens with Autism Spectrum Disorders (ASD). There are many families in crisis, and they all want to do what’s best for their children. They just have no idea what to do. Their child’s school isn’t equipped to hel

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Added by Susan Levy on July 3, 2010 at 3:30pm — No Comments

akbutler Ray of Light

The scene: Two days after school has ended. It is hot and humid outside – too hot to be out. It’s almost 10 am, and the kids have all been up for 4 hours already (you know, because there’s no school). Hot Wheels cars and trucks cover every room in the house, making it almost impossible to make coffee without tripping. Howie is in full blown out of control mode, running laps in the house and smashing himself into me and anything else he can find. Lewis is moaning like Chewbacca, doing his best

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Added by akbutler on June 29, 2010 at 2:53pm — No Comments

Susan Levy What I Think & What I Know

This is from my blog, Taking the Awe out of Autism: http://aweoutofautism.blogspot.com/

I had a really great time being a Mom when Jacob was a small child. When he was really young, I was fortunate that I was able to run a successful business from home. This allowed me enough time to taxi Jacob to his various therapies and doctor's appointments. This changed starting when he was 7, and the business star

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Added by Susan Levy on June 29, 2010 at 9:00am — No Comments

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