Cerebral Palsy

Today I am a Special Needs Mother, and It's Hard

For the record, I consider myself just a Mom.  I don't look at my situation with John and say, "I am a special needs Mom."  Handicapped? no, my son is not handicapped, that title is reserved for individuals in much worse mental and physical shape than John.  Today, however reality slapped me in the face, yes I am a special needs Mother, like it or [...]

You Say You Don't Want a Cure? Well I DO!

You say you don’t want a cure.  Well I do. I get why you don’t… this is a part of your child, an imperfect piece perfectly imbedded, merged, marinated, simmered and fused within every nuance of your child.  You can not separate autism, or epilepsy, or down syndrome, or whatever it is from your child without removing what makes him… him.  I completely respect that.  [...]

Half a Recovery is Better Than Nothing

“Do you have the address?” My husband spoke as he drove in blowing rain. We were on our way to meet a Doctor who would either determine our son John qualified to receive SSI benefits or not. I was on edge; when it came to John, years of dealing with judgmental professionals left me hurt, confused and often angry. It was not just that I [...]

Is It Too Much To Ask a Child To Find Strength?

by Gina St. Aubin C relays: When I took J to school, I told Ms. L about the little white car. I said, “It hasn’t left his hands...he took it to the dinner table, to bed, to breakfast...just so you know…” “That’s fine,” she said. “You know my single goal for J...all I want to do is to help hold him together. I just want [...]

Of Eggs and Life

Contributed by Cheryl Bailey I love to cook. I cannot remember when I was not at home in the kitchen. One of my first skills to master was the art of separating an egg. I needed to learn this trick for making meringue topping on cream pies my family ate after Sunday dinner. If you have ever made meringue, you know that the least bit [...]

By | 2012-05-07T09:00:04+00:00 May 7th, 2012|Categories: Cerebral Palsy, Epilepsy|Tags: , , , , , |2 Comments

An "Open Letter" to the General Public by Cheryl Bailey – Letters Series

An Open Letter to the General Public, In every restroom in America you will find a different size stall. It is a bit wider, sometimes a tad longer than the ones near it and the toilet is generally raised a bit. Bars along the sides of the toilet allow individuals the help the need to raise and lower themselves on the toilet. Sometimes, you will [...]

Does Grieving End for Parents of Children With Special Needs?

You don’t prepare for the moment you realize something’s “wrong” with your child. No one expects that their joy from one of the happiest days of their lives will be overshadowed with pain. No one ever tells us, as parents of special children, that one of many the things we will find ourselves doing is grieving….a lot. When discovering our children have disabilities, what “normal” [...]

I don't want this life for your child by Cheryl Bailey – Letters Series

An Open Letter to all who Support the Greater Good Concept, I am labeled a fear monger. I am told I am misguided. I am told the government knows more about how to keep my child safe from illness than I do. I am told to trust in vaccines. I did. They destroyed my son’s life. I found myself in a world where deny the [...]

A Holiday In Pain

Dear… Obscure Relations / Those-Who-Think-They-Know-Us-But-Haven’t-A-Clue / Random Citizen who has the misfortune of crossing my path during the next few days or weeks…. I’m not happy. In fact, I’m f#(&ing pissed. Not positive. I refuse to see the positive side of the “special needs” life at the moment. In particular, I cannot fathom what good is coming from my son’s epilepsy. My son’s INTRACTABLE, UNSTOPPABLE [...]

What You Should Know About Individualized Education Programs (IEPs) by Andrea Erins : Guest Post

The term “IEP” comes up often when discussing special education programs in public schools. If you have a child with a disability who’s about to enter school, or if you think your child may have a learning disability because he or she is struggling in school, you may want to learn more about IEPs if you haven’t already. What is an IEP? An IEP is [...]

Misunderstood – The Parent of a Child with Special Needs (Part II)

Resentment is a strong word... He asked if my other two children resented him. This teenager trying to understand. Do I think they resent him? The attention given, the care received, the considerations made. This was a teenager, less knowledgeable about the ways of the world, of censoring thoughts rather than allowing them to form into words. Not that this is his fault; he is [...]

Change of Plans – Plan A to Plan B and Beyond…Why I'm NOT going to Blogher

Change of plans. Not really something new at this point in our adventure. Some call it a journey, it is...but it’s also an adventure, depending upon where you are and the perspective that’s grown because of it...digressing. For so long, I had plans. A bachelor degree'd woman of mixed descent with a generous abundance of experience to offer any employer, that’s who I once was. [...]

Flashback – It All Started with Cerebral Palsy

He likes to lull them upstairs….not for any reason other than to antagonize them as a good brother would do. “I’m going to your room…” is what you can hear him singsong as he scampers towards the stairs. Whichever sibling is the focus of his present tease has a full-on panic attack as if he’s going to go into their room and wreak havoc rather [...]

By | 2011-06-21T02:44:05+00:00 June 21st, 2011|Categories: Cerebral Palsy, Inspiration / Laughter|Tags: , , , , , |8 Comments

Anti-bullying by Jenny Ford • All About Autism Series 2011

This post is generously submitted for the 2011 All About Autism Series ~ by Jenny Ford: When I was a kid in school I got bullied constantly... Except for one year of public school but that's a subject for another post... One of my first memories of being bullied is when I was in the corner of the school yard. Don't remember how I got [...]

"Inclusive Classrooms" and classroom "havens" for children with special needs

“One excited boy did all that he could before making his way to a swing for comfort. Another boy made it all the way through, enjoying the project and doing an amazing job. Other kiddos were off enjoying the end of the day doing other activities in other rooms. J melted.” I talk about J’s inclusive classroom model and my first experience coming into his [...]

Autism Hurts

It feels good to be back in sweats again. Workout clothes...actually, yoga pants though my body hasn’t seen more than 1 day of yoga...yet. But workout clothes nonetheless. If feel energized, have an extra bounce, and I’m noticing my posture. As much as I’d like to say I’m doing an amazing job taking care of myself, that isn’t so...I just came back from Physical Therapy. [...]

“Do You Want To Play With Me” Doesn’t Always Work by Gina St. Aubin – Friendships: Struggles, Humor, Triumphs and Angels Series

by Gina St. Aubin If I think friendships can be difficult for me, it’s harder for him. J wants to develop friendships. Or at least, he wants to interact. Just as he can spot airplanes far enough away that they only represent flecks companioning the clouds among the blue skies, J spots a potential playmate. He runs to them, as best he can, as fast [...]

A Nearly Empty Pool of Friends-By-Design by Gina St. Aubin – Friendships: Struggles, Humor, Triumphs and Angels Series

by Gina St. Aubin I watch other moms around me develop relationships between them. Seemingly, it comes easily, naturally. I don’t know how much of this is true and how much is my perception of their relationships. It seems they’re almost always speaking of someone picking up another’s child, play dates, gatherings of the moms, birthday parties, this or that. They stand in circles, bonding. [...]

How Do You Discover What Ails?

At the very moment I write this, I have a headache. I’m not sure I ever really felt it coming, so much as finally acknowledged that it’s here. I recognized it. Acknowledged it. I blurted out to C, “I have a headache”. I just took some Tylenol. Then it occurred to me just how easy this minor inconvenience (aka pain that’s now taken over my [...]

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