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Author Archives: Janis

Birds of a Feather: The Special Needs Lunch & More BlogHer highlights

Written on August 12, 2010 by Janis

I left my 2yo medically fragile son for five days…count ’em five days AND nights, to attend BlogHer’10 in New York City. It was business, it was pleasure, it was exhausting…you name it – I felt it. Mostly I felt terribly guilty about going, but given the awesome opportunity I just felt I could not pass it…

in Me Time, Rare Diseases, Stuff We Love

- 1 Comment

Help Wanted

Written on July 29, 2010 by Janis

7 Comments

Complex –adjective 1. composed of many interconnected parts; compound; composite: a complex highway system. 2. characterized by a very complicated or involved arrangement of parts, units, etc.: complex machinery. 3. so complicated or intricate as to be hard to understand or deal with: a complex problem. A friend of mine mentioned to me the other…

in Raising Awareness

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Tiptoeing Around

Written on July 22, 2010 by Janis

7 Comments

You know how you know “something” is not quite right, call it your “mommy gut” kicking in. But all around you doctors and therapists purse their lips together and shake their heads. They have been shaking their heads about this one for about 2 years.

Finally this week his OT is admitting, well he “might” have a “slight” problem. To me thats like being “a little pregnant”…either you are or you are not. There is no room for middle ground.

in Conditions and Diseases, Therapy

- 7 Comments

Letting down your guard

Written on July 15, 2010 by Janis

1 Comment

I was having a discussion with my friend Sarah the other day about her daughter, Mila 3 1/2, and about how getting a bad cough meant she needed an MRI to check for a brain bleed. Now we all know that may seem extreme, as most kids with a cough don’t need to go through…

in Day In And Day Out

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What do you do when your family doesn’t accept your special needs child?

Written on July 8, 2010 by Janis

11 Comments

I have been very lucky that my immediate family is very loving and accepting of Austin. At home he is not treated any different than any of the other grandkids. When we venture out into the world well, there it is a different story. But home is our soft place to fall. Maybe it’s because,…

in Family Life

- 11 Comments

I’m different too!

Written on July 1, 2010 by Janis

6 Comments

I feel like I no longer have to pretend that I am the same as any other mom walking down the street. Because to be honest, I have spent an awful lot of time trying to convince myself of that. “Hey, I’m the same as you. I’m no different. I want the same thing for my son as you do for your children.”

in Dealing With Public Perceptions

- 6 Comments

I’m just like every other mom, right?

Written on June 17, 2010 by Janis

0 Comments

Last Sunday we had a rough experience, or at least *I* did. Whenever something like this happens it really highlights to me how different we are from other families. It seems like in between these moments (because there are lots of them) I tend to forget how different we are. Crazy me, I just go…

in Family Life

- 0 Comments

Any words of wisdom for the IEP?

Written on June 10, 2010 by Janis

7 Comments

I thought I had a fairly good grasp of what type of school and support he needed fir the IEP. But where I find myself lacking is what kind of supports the school can and will offer for a medically fragile child.

I’m quickly finding out they don’t “offer” much. It seems I need to ask for every possible thing under the sun and then somehow prove why he needs what I am asking for. Has anyone else had that experience?

in Advocacy, Individual Educational Plans

- 7 Comments

Words to describe Special Needs parents

Written on June 3, 2010 by Janis

4 Comments

I’m not a limelight sort of gal. I usually shy away from building myself up unnecessarily, that’s just me. The other day someone asked me for 5 words to describe my job as Austin’s mom. Before I knew it a list was developing, a list that could be used to describe many parents, but especially…

in Raising Awareness

- 4 Comments

Getting by with a little help from my friends

Written on May 27, 2010 by Janis

0 Comments

Let’s face it, a Mother’s work is never DONE. There will always be laundry, dishes and last minute book reports that need to be done. Or in my case, there will more than likely always be pharmacies to call, doctors to email and insurance folks to fight with.

That’s called life.

in Day In And Day Out

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