When she was tiny

Sometimes I get so caught up in the now of Hailey that I forget that once upon a time...she was so tiny.  Such a little peanut. 

When did she get big?

Oh my, she is going to be ten! 10!!  Double Digits!!  WOW!! 

I guess that I was so hell bent on getting her passed that awful third birthday (that is the age that the geneticist told us that she would most likely make it to ~ ha ha ha...she sure beat that didn't she!! *this is me sticking my tongue out at him*)...that I try hard to only look forward...never look back!

Looking through some old photos today...I came across some around her fifth birthday...5 whole years ago...seems like a lifetime...

At five years old....at her own skating party (*this is me sticking my tongue out at that same geneticist and the pediatrician who announced that she would NEVER walk even if she did make it passed 3*)

And now at almost ten years old...(*this is me sticking my tongue out at that very hateful doctor who suggested that I just put her into an institution or up for adoption for the sake of my other child*)

I'd like to take this opportunity to stick my tongue out at the rest of the people who would like to doubt my child's super powers!!

I can't believe how fast she has grown!! 

Or how much we've all grown because of her!



Reveling in my own AWESOMENESS!!!!

Yep, that's right...It is a day to celebrate.  Another IEP finished...check that b*tch off the list!!

I hate IEPs.  They make me ill.  They make me stressed (more than I already am on most days).

They are horrible...I actually had to say in this one "let's just focus here for a minute...our goal as an IEP team is not to educate my daughter to be an independent functioning adult...She is never going to be independent.  She is always going to be somewhere around a 5 year old level when it comes to safety awareness and independence."...Yep, had to say it...and that is HORRIBLE! 

I hate focusing on the negative and pushing all of her positives to the side...but I do, we all do...year after year...because if there weren't the negatives, she wouldn't get services...she wouldn't NEED them!

So negative...negative...negative...with a few little positives thrown in in order to "cushion" the blow.

Thanks but I can handle it, I PROMISE!

So today, they literally had a TEAM...oh yeah, I said TEAM...of speech therapists, AAC specialists and techs and sign language specialists in the room along with her regular teacher and program manager...they were all there to make a decision that after 9 years of working on her verbal language, they were going to STOP...

STOP??  Really after she was just diagnosed with a moderate hearing loss and received hearing aides 3 months ago?  So after 9 years of not hearing, you want to stop teaching her how to speak when she just began to hear us????

That's awesome...good thinking team...

And so I debated them...brought the research and presented the requests for Independent Education Evaluations for everything...speech therapy, AAC, sign language, ABA therapy...you name it, I had it in my arsenal of request letters.

And I won.  I even took a break for dramatic effect (sort of, I kind of was almost going to cry so it seemed like a good time for a break).

And I won. So she is going to continue a more intensive speech therapy in a clinical setting, continue her AAC services at school, be assessed for ABA therapy, sign language...she is going to have data collection and more sensory choices...You name it, she got it.

A long time ago, a "friend" of mine said she hated when I said "I win" in situations like these...she is long since gone...exit stage left so...I am going to say it!!!

I WIN!!!  So today, I am reveling in my own AWESOMENESS...The kind that you don't have very often when you are the parent of a special needs kiddo...the kind that comes only once in awhile.  Yahoo for ME!  Yahoo for HAILEY!!! (don't worry tomorrow I'll go back to doubting my awesomeness...this only lasts a day around here!!!)

Understanding ignorance is a difficult thing

Ignorance is an ugly thing...It makes people say things that are ridiculous and hateful and hurtful.

But I try to understand it most of the time.

I try to understand that when someone says something like "I've never seen anything like THAT before" when referring to my daughter...they are just ignorant.  I try to calmly tell them that SHE is not a THAT and she has feelings and can HEAR you!

I try to understand that when someone stares at her that they just don't know what else to do or where else to look...they are just ignorant.  I try to calmly tell them that staring is not nice and that she has feelings and EYES!

I try really hard to remember when I was ignorant about the "special needs world".  It is hard to remember...really hard...

I have a vague recollection of being in a park right after Hailey was born...Alright, it is more than a vague recollection.  It is more of a horrible imprint in my brain where I remember it perfectly and it TORTURES me.  Because I was the horrible ignorant ridiculous human being.

I was at a football game that her dad was playing in and we were sitting on the sidelines...a "perfect" little family before anyone mentioned the words microcephaly or simean crease or cri du chat or brain damage or seizures...Just my 4 year old boy, my 2 week old little girl and I...just sitting there...enjoying the game...watching the man in all of our lives & sitting with all of my "friends"...Oooooing and Awwwwwing over the baby and having a wonderful time.

Then he appeared.  I am sure that we all watched him walk up and I am pretty sure that we probably discussed him in some horribly ignorant way before he actually just appeared...but in my memory, he just APPEARED.  A special needs boy...Probably CP or Down Syndrome...although that is not what I thought at the time.  And he was there and he TOUCHED my BABY....and I was IGNORANT and horrified and all of the things that I hate about people who are ignorant towards Hailey now. 

He was alone.  He didn't have a caregiver with him or a parent or a friend.  Looking back, I have no idea why he was alone in a park with no supervision.  If I was in the same position now, I would have found out where they were and why he was wandering around in a park alone.  But not then, then I was IGNORANT.

I must have gasped and stared and been in shock.  I had never been around someone with special needs and I really just didn't want him to touch her.  I didn't really want him to look at her and I didn't want to have to talk to him.

Now, I wasn't mean and I know that I didn't act mean but I was SCARED & UNCOMFORTABLE...How ridiculous is that?  He just touched her face and her little sock and said she was pretty and then he walked away.  I am pretty sure that I said nothing...except for that horrible gasp that I am sure that he heard...because he had ears and eyes...and I was horrible.

So when I encounter all of this ignorance in the world towards my little lady or any ignorance at all...I try to remember that day, those feelings and how I wasn't a bad person...I wasn't educated and I was scared and I WAS THE IGNORANT ONE.

If I could go back I would say this to that boy..."She is beautiful isn't she...would you like to sit down in my chair and I can help you hold her?"...I can imagine his smile sitting in the chair with his blue jacket on while I helped him hold the little baby who would soon grow up to be just like him...I can imagine his feelings of happiness that a stranger didn't gasp at him...

All I can hope is that everyone that Hailey and I come in contact with can shed a little of their ignorance...and lose their fear...and maybe I will be forgiven for this horrible moment in my life where I was filled with all of the things I loathe in people now.

Gearing Up

Hailey's school has changed it's schedule this year to what they call "Modified Traditional" which basically means longer breaks...Which also means that she will be out of school from November 19 to January 3...REALLY??  You are kidding me right?

I have to gear up and figure out what we are going to do...I have to redo the picture schedules for her so she will know what to expect.

I have to gear up and prepare myself for the fact that I will not have a moments peace for half of November and ALL of December!!

I will miss going to the bathroom alone...Those are the things that I think about!

I am also excited.  I think we will go to San Francisco and check out the Exploratorium.  I think we will go to the zoo if it's not raining and to the snow.  I am so excited...but I have to prepare!

During this preparation, I have realized that her wheelchair has a flat...no I guess it's not really a flat...it's more like a catastrophic event...a hole that cannot be repaired....And that HAS to be fixed because without the wheelchair, we can't go anywhere in public!  Because without the wheelchair, she gets tired and she has no where to go when she needs a break...She is too big to carry anymore...

I am excited for this break from school and a little nervous because just as soon as she gets used to being out of school, she will go back and we will start all over again...she doesn't do change...

Here's to a month and a half of craziness!

Very few people can say that they have walked in the shoes I wear...

I wrote this on my facebook page last year about this time...I think it deserves a re-post on my blog.

 

My daughter was born with cri du chat syndrome. I delivered her, I watched her turn blue. I sat through all of the geneticist appointments, the GI appointments, the neurology appointments. I went to all of the therapists and all of the doctors, all the medical professionals...I have never missed an IEP, an IPP, a DHS meeting or an evaluation. I did not walk out on her during her diagnosis. I have been with her ever step of the way. I have fed her, taken her to the dentist, sat in the waiting room during surgery. I witnessed that first cat cry...her first ear infection, her first bout with constipation. I have made sure that she has had everything that she has needed for the last 8 years....YES, I have needed a break at times but I have taken it when everything else had been done. I do not sit, I sometimes do not sleep...I do not wait until the last minute to bring her to the doctors or get her treatment. I AM HER ADVOCATE AND HER MOTHER!!!!!!

I believe that the more people around to love her the better. I relish the opportunity for her to meet people and touch their lives as she touches mine every day...I will not push new people or opportunities away. I thank GOD for the respite and assistance that I receive in order to be able to care for her, revitalize myself and be a wonderful mother for her.

If you do not know about her disorder because you have just come into her life, take the time to read and learn. She will forever suffer from constipation...Because she has it does not constitute neglect on my part. She will forever struggle with severe behavioral issues...Because she has them does not constitute neglect on my part. She will always struggle with instability and clumsiness...BECAUSE SHE HAS A SEVERE GENETIC DISORDER.

I have experienced things within the last 8 years that most can only imagine...I would hope that you would sympathize rather than judge me. I have entered a land that I had never thought to go...I have come out changed, for the better.

No one can make me question what I have done and what I do every day in order to support and raise my disabled child, nor can they make me question the way I raise my two normal developing children.

You can call me a lot of things but a negligent mother is NOT ONE OF THEM...and never will be.

If you care to learn more about her disorder, read below...or just ask me...I have become somewhat of an expert in the last 8 years.

History: The following may be noted in patients with cri-du-chat syndrome:

Characteristic cry: Subtle dysmorphism with neonatal complications and a high-pitched cry typically prompt diagnostic evaluation using cytogenetic studies. Many infants with cri-du-chat syndrome have this distinctive cry, but it is not associated with other aneuploidies. About one third of children no longer exhibit the catlike cry by age 2 years.

Developmental history: Early feeding problems are present because of swallowing difficulties; poor suck; failure to thrive; early ear infections; and severe cognitive, speech, and motor delays. Almost all affected individuals have these problems.

Behavioral history: Behavioral profile includes hyperactivity, aggression, tantrums, stereotypic and self-injurious behavior, repetitive movements, hypersensitivity to sound, clumsiness, and obsessive attachments to objects. Some of these problems are more pronounced in individuals with lower cognitive-adaptive levels and with histories of previous medication trials.

Features similar to those of autism and social withdrawal may be more characteristic of individuals who have a 5p deletion due to an unbalanced segregation of a parental translocation. However, children with cri-du-chat syndrome are able to communicate their needs, socially interact with others, and have some degree of mobility.

Cornish and Pigram consider an auditory behavioral phenotype, hyperacusis, as a characteristic trait. 6 Hyperacusis is a condition characterized by a hypersensitivity to sound, which causes auditory discomfort, and is reported to be one of the main characteristics of the syndrome.

Childhood findings include the following:
Severe mental retardation
Developmental delay
Microcephaly
Hypertonicity
Premature graying of the hair
Small, narrow, and often asymmetric face
Dropped-jaw, open-mouth expression secondary to facial laxity
Short philtrum
Malocclusion of the teeth
Scoliosis
Short third-fifth metacarpals
Children with cri-du-chat syndrome also have chronic medical problems such as upper respiratory tract infections, otitis media, severe constipation, and hyperactivity.

R is not for retarded...

Don't say that word around me.  It may earn you a punch...It will at least earn you a lecture.  Don't call it the R word or anything else.  Expel it from your vocabulary.  Just stop using it.  Friends of mine have long ago learned that a stern lecture is not what you want from me.  It offends me.  It just does.  I shouldn't have to explain myself.  It would be like me using your name or hair color or race to describe someone who was acting ignorant or ridiculous.

My daughter has mental retardation.  That is true.  That is the medical definition.  The words written on her IEP, in her medical charts.  Accompanied by Cri du Chat, Autism, Sensory Processing Disorder, 50 D Hearing Loss...etc etc etc. 

Don't say that word or use one of her diagnosis in order to insult your friends or describe something ridiculous.  It is not cool.  It makes you sound horrible.  I cringe.  Do you not see me?  Do you not see my son cringe?  Do you not hear me say that I don't appreciate it?

Stop it...Don't use that word around me.  Don't say that word at all.  It shouldn't even be in your vocabulary unless you are using it correctly. 

R is for RARE
R is for RADIANT
R is for REYANN
R is for RED
R is for RADICAL

R is for lots of things...it is NOT for retarded...get rid of it from your vocabulary...it doesn't belong there.

Wonderful Holiday

It was a wonderful holiday...

Full of Ballet Princesses

And even a Where's Waldo??

The girls even made it two blocks and 15 houses! 

The boy went with his buddies for the first time unsupervised...a little scary for Mommy.

I have wonderful children and we all had a wonderful holiday!