My yearly week off

Every year Hailey goes to her dads for the week after Christmas.

I should be sad...right?  Well I am not. 

Don't get me wrong.  I miss her to the depths of my soul.  I think of her more during these 7 days each year than I ever do the rest of the year.  I have more time to think of her.  The rest of the year, I am busy with her...being with her...handling things.

This week I have nothing to handle.  I just have time.

I have time to catch up on every piece of laundry and bedding in the entire house...to put the holiday decorations away correctly...to find a home for all of the new presents...to have coffee with a friend...to take my littlest one to the movies and skating...to sleep in...to go to the gym...to wander aimlessly around Target (my secret luxury when I get an hour to myself!!)...to wash my face before I go to bed EVERY NIGHT!!...to watch all of my DVRs of General Hospital...to have my hair done (Thursday!!)

I just have time.  It is a gift.  It is a replenishing week for me.

Then I have the energy and the patience to be a better mother for her the rest of the year.

And about 3 days into the week (so yesterday) I start to realize what joy she brings to our house.

Especially when we are skating and the little one looks up at me and says, "Mommy, I don't think we should do anything else fun until Hailey comes home".

All it takes

Lately I've been feeling a little defeated...a little resigned...a little sad.

Things have just been hard.  Hailey has been difficult...Aubrey has been difficult.

I'm missing an important piece of my family this holiday season through no one's fault but my own stubborn pride.

I'm missing old friends who have fallen off because I live in a complicated world.

But all it takes is one day to boost my spirits.  One day where my girls don't fight or bicker or pull each other's hair.  One day where the baby poops in the potty without screaming bloody murder.  One day where Hailey smiles and giggles all day.  One day where the teenager wants to ride in the car with me while I run errands so he can chat with me. One day where my husband comes home early enough to eat dinner with us.

One day where my girls cuddle up in the bed together first thing in the morning and ask me to go away so they can snuggle...

Yesterday was that day...and hopefully yesterday can rub off on tomorrow and the next day and the next day.

Because all it takes is my children smiling at me to turn it all around and remind me of who I am.

When Mommy Cries

I don't cry very often...Hardly ever.  I cried all of my tears almost 10 years ago...my tear ducts are pretty dry and I get mad, not sad.

So when Mommy cries, everyone knows it's something major.

Aubrey had her school Christmas party today and Hailey is out of school, so I had to take her with me to the party.  I actually thought about keeping Aubrey home and hoping she just forgot about it...That's how much of an ordeal it is to take Hailey into the 3 year old classroom.  But then I thought, well that's not fair to Aubrey.  She shouldn't have to miss it...

So I came up with a plan...I put Hailey in her wheelchair and figured I'd just park it out of the way of the other children so she couldn't reach any one's hair or head or arm or shirt or leg or...you get the picture...so she couldn't reach anyone or anything.

And I did...but it didn't matter.

See what I can't control is the other children and they were zipping past her and running about with their cookies in their little hands and she really wanted their hair, and probably their cookie too...So, I moved her back some more out of the running circle of wild 3 year olds.

There was a "book exchange" and the little girl who got Aubrey's book, came up to thank Aubrey.  I didn't even think about the fact that Hailey had seen me wrap that book and probably thought that it was for her...So I'm sure in her mind she was thinking, "WHAT THE HELL ARE YOU DOING WITH MY BOOK THAT MY MOM IS GOING TO GIVE ME ON CHRISTMAS????????"...And I was too late when Hailey leaned over, grabbed the prized book and whacked the little girl over the head with it.



The prized book or shall we say...the latest weapon.


Tons of tears (it wasn't THAT hard of a whack but the girl was shocked)...and the mom says that it's OK but they all move as far to the other side of the room as they can possibly get...I think I muttered something like, "she'll be back to school in January so you won't have to see her anymore".

And I want to yell..."that is why we call her lilly long arms...she can literally make her arms extend to reach anything when she is determined"...and I want to explain that I try to be fast enough all the time and anticipate her every move but sometimes I FAIL...

Normally, I am not embarrassed of Hailey's behavior.  I can usually keep her under control and away from situations like this.  I don't apologize for her flapping or screaming or having to hold her hands as we walk by other children...

But today, I was humiliated.  And I didn't know how to fix it...I couldn't...And Aubrey was crying that Hailey always ruins her party and then I started to cry...in the classroom...in front of 16 sets of parents and grandparents and two very shocked teachers...And I fled...I scooped Aubrey up in one arm and pushed Hailey out of there like a whirlwind...all while hysterically crying.

Sometimes there are times like these when I wish I had that magic pill to fix her...Some type of hocus pocus magic trick to make her stop hurting other children...And then I feel guilty.

Guilty because when you are a special needs parent, you are expected to "embrace" the new life...that is how you get through it.  You accept it and deal with it and move forward...You don't make excuses...You challenge people to look at her so that you can prove you don't care...that it doesn't matter...that she is perfect in your eyes.

The fact of the matter is though that there will always be days like these...unexpected moments that sneak up on you and throw you into the depths of sadness and guilt and embarrassment...just like it was the first time someone looked at her funny...

How she teaches just by being...

I had never heard of cri du chat when I was 14...I didn't really understand what chromosomes were.  I am not really even sure if I grasped anything more complex than who I was going to the next dance with.

My son is different because of his sister.

Because my son is different...so are his friends.

His buddy came over for dinner last night.  His sister just loves this friend of her brothers.  She is always smiling at him and laughing when he is around.  I am normally concerned because when she really likes someone, she leaves them no space.  She is in this poor teenagers face the entire time that he is at our house.  But he doesn't seem to mind.  And if she gets irritating, he is comfortable telling her so!

At dinner, we are chatting about all of our days and this friend of my son says that his teacher was giving a lecture today on abnormal chromosomes (which seems a little advanced to me for 14 year olds but they are in a Bio Tech Academy so I guess that explains it)...so he goes on to say that, "my teacher totally butchered Hailey's disorder"...I asked him what he meant and he says, "she called it cry do chat not cri du chat"...then he goes on to explain that he made sure that he let her know that she had butchered it and gave her my name in case she wanted to check with someone and that he knew what he was talking about!

I was so amazed at him...This teenager who is so understanding and nice to her...who is not uncomfortable when she touches him or laughs at him...who is comfortable enough around her to tell her to back off if she is driving him crazy...Who would stand up and explain to a high school teacher that she didn't pronounce it correctly and educate her.

I know that she has taught our family a new way of looking at things, compassion, understanding and a whole new meaning of love...What I had failed to see until then was how far her teaching really goes and how it fans out into our community...

It left me happy and smiling to know that this teenager is exceptional and we are lucky to know him...Also to know that this rare genetic disorder is being discussed and talked about in our community high school because of her...

We got behind...But our hero is saving the day.

A few months ago someone stole a lot of money from our home.  Not a break in but someone who was invited into our house.  We have never been able to figure out who it was but it pretty much put an end to my blind trust of people.

We weren't really caught up financially from the business disaster of 2008 but we were close...

That theft put us back in the hole...It also cancelled our family vacation to Disneyland for the year.

It was sad...I was angry...and felt beaten.  But we stood back up and started catching up again.

Then our car needed to be repaired or replaced and we had to dump all of the new catch up money into a new car...GEEZ were we ever going to catch a break?

So we figured that we would be caught up again in a few months and we scaled back on the Christmas gifts...and we budgeted and started to save again...

Last week we got our big break (or at least a financial break)  Hubby has been asked to work double overtime with no days off...it sounded great & we'd be out of the hole within 3 weeks instead of 3 months...

But here's the catch...Hubby has been working for 12 days with no break...Drives 2 hours to work, works 12-13 hours then drives 2 hours home...Then he eats dinner, sleeps for 6 hours or so and starts again.  The kiddos haven't seen him except when he kisses them while they are asleep for 2 weeks...and I'm normally asleep when he walks in and barely awake when he leaves.

You'd think he'd be cranky or irritated or angry that he has to do this...but he's not.  He just called me to ask me if we were on our way to the Polar Express Train Ride downtown...tickets that he bought us with all of his hard work...and asked me to call him and tell him how much fun the girls had.  This morning when he kissed me goodbye, I asked him if he was exhausted...he said no, he was glad that he was able to support us.  He also called me to apologize that he wasn't able to put the Christmas lights up yet and offered to do it tonight when he got off work.

My hubby is literally the best man that I have ever known.  That he would marry me and accept my two children (one having cri du chat/autism/hearing loss/strabismus/sensory disorder etc etc etc) as his own, astounds me...

That he would then work 90 hours in a week and drive 28 hours on top of that to and from work just so that I can stay home and take care of the children...so that we can catch up and not be behind on anything...so that sometime in the next few months the kids can have their vacation....

WOW...he amazes me...I am one lucky girl...And our hero is saving the day.

Speech Therapy...Again...

We started speech therapy today, again...

She originally started at 1 year old. The school district terminated traditional speech therapy last year.  The team decided (yes, I was there) that we should be focusing on her Dynavox.  And so I agreed.

So over the year, she became more and more agitated...This "Dynavox" or "Talker" or "Speech Computer" or "Augmentative Communication Device" just wasn't working for her.  She can't carry it because it is too heavy....It is complicated and hard to navigate...she ends up throwing it or just plain not using it at all.  I am sure it works fine at school but in a little less structured environment...IT IS A PAIN IN HER BUTT!!  She would rather sign or point or grab your hand and show you what she wants.  She just hates the stupid thing at home.

We also noticed that she began backsliding in her speech altogether...She wasn't making sounds anymore, not even saying Mama or BoBo (brother) like she used to...

So I requested a new evaluation...blah blah blah...evaluation, IEP, arguing, debating and BOOM...she is back in speech therapy.  We have 6 months to prove that she can make some strides now that she has her hearing aides...6 months????  Jeez it took her 4 years to utter a sound...6 months is closing in on us and we have barely even started.

So we started speech therapy...again...I am really hoping that she will begin to speak...I think this is our last shot...I don't give up easily and I am not giving up on her.

So this is my plea to GOD or whoever is listening...Please Please Please let her speak...She has so many challenges...so many frustrations...Just let her speak a little bit...Just the basic stuff...Please Please...

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!

Visiting Italy while I live in Holland

I scheduled my trip to Nashville so that it wouldn't affect Hailey at all...I scoured the calendar looking for that 4 day window when she'd be with her dad...where there weren't any activities, no field trips, no therapies or doctor's appointments that I would miss.  I thought I did a great job and booked the trip...

The best laid plans...you can usually count on those not working out.

Just like when I planned to have a perfect little baby...I planned to have a perfect little girl who loved ballet and girl scouts and would get married to a very handsome young man after she finished up her college life at Yale and became a brilliant lawyer...I am a planner...I plan everything.  I write it down, list it out, calendar it...I planned to live in the same home in the same town with the same husband and the same friends, near my same family...I PLANNED IT!!  (note divorced, 4 homes since then, barely any of the same friends and a split family...)

I am not sure why I continue to be surprised when my best laid plans...BOMBBBBB!!!  I am not sure why I plan anything at all anymore.  I guess it is in my DNA...my obsessive compulsive behavior to have to list it all and cross it off.

Now the trip was FANTASTIC...the most fun that I've had in years.  I literally did every adult activity that you can not do when you have 3 children hanging on your leg...

Then I returned to reality.  The reality that Hailey doesn't do well when she knows I am gone (thus the scouring of the calendar before I booked it...).  So the last minute field trip and 2 half school days (yes last minute that her teachers didn't tell me about) that her father couldn't accommodate in his schedule made it so that she had to know I was gone. 

My mom had to take her to her field trip and so she had to come with us to drop me off at the airport.  Added to the fact that she had a half day on Monday so I wasn't quite home when she got home from school and my suitcase was on the floor of the kitchen and I hadn't made our house look like I hadn't just gotten home...and you have my mini monster...

God I love her...every day. Even when she is a mini monster but WOW...she exploded...We have had the most tantrum filled 2 days of my life.  I literally thought that she was going to pull Aubrey's hair out of her head and get us into a car accident yesterday.  She actually GRABBED the wheel!  (We call her lilly long arms...this child can extend her arms to reach ANYTHING when she is pissed)!!

I think that today she has finally accepted that I am not going anywhere and she doesn't have to be made anymore so the tantrums have subsided...

Despite of all this, I will continue to plan...because I am a planner, a lister, a write it downer, check it twice, cross it off when it's done type of planner...That is who I am...So I'll just have to accept that my best laid plans...well you know!

Back to reality...back to life...but I do dream of living in that land where there are only adult things to do...I'll have to settle for visiting and having my wonderful vacations with my very best friend and all of the wonderful adults! 

I'll settle for visiting Italy while I live in Holland...

And off I go...

It isn't easy for me to leave...anywhere...Even for a day or for a few hours or for a night...So imagine me leaving for 5 days!!

I'm certainly not saying that I don't want to go on vacation and leave for 5 days of utter bliss hanging out with my very best friend in the world...doing adult things...having adult conversations....with no children in sight...for the entire 5 days!

Because, oh yes...I DO want to go.

But it isn't easy.

It means a 7 file folders of directions, emergency numbers, medical cards and information...Lists of allergies, doctor's numbers, homework information...Instructions for feeding, for field trips, for medication, for sleep. 

It means packing and hiding the suitcase so that she won't know that I'm actually leaving somewhere...which would send her into a tailspin that no one wants to see.

It means figuring out who is watching which child and where...Who is taking which child to which field trip, which school...Who is making sure that the teenager gets up on time and to school on time....Not to mention, making sure the laundry is done so that he has his gym clothes since I won't be here tomorrow...

Making sure that there is food in the house so that when hubby comes home late from work, he can eat (although he'll probably eat out anyways)...making sure the dish washer is clean and empty and the garbage is out (because no one will do those things when I'm gone and it will be all stinky and gross when I get back).

It is a lot of work this leaving thing....But I'm doing it!!  And I'm excited...and I can feel it and taste it...I'm even looking forward to the flying part (even though I hate to fly) because it means 5 hours of uninterrupted nothingness (is that even a word???)...

I will miss the little ones and the hubby...

But...

I'm leaving on a jet plane...I hope the house doesn't burn down while I'm gone and that the children are all in one piece when I get back!!!

A Choice

Betcha thought this was going to be some serious post about some serious subject...Well it is serious to me but let me warn you...It is not some political topic!

A shower or an extra hour of sleep...that is the choice I made today and believe me, I am paying for making the choice that I made!

I chose the extra sleep.  I haven't been sleeping well lately.  Hubby has been working a lot and I have been alone a lot (technically not actually alone but alone in the sense that the only people that I have conversations with are 14, 9 and 3...and the 14 year old rarely says more than a few words...Oh and a couple of therapists, teachers and maybe the grocery clerk...I'm pretty sure those don't count as stimulating social conversations though!).  So my sleep has been less than restful...I mean, I am tired but mentally, socially I am STAGNANT...I am bored...

So last night, I fell asleep at around 9:00, then woke up at 11:00 then fell asleep around 1:00 am then woke up at 3:00 am and then fell asleep at 4:15 am to dream wonderful dreams and sleep soundly for my alarm to wake me up at 5:45 am...and I wasn't ready of course.

Now I know it is Saturday and most people get to be lazy or sleep in a little but here is where the choice comes in...I can sleep in an extra hour because of course my little ladies normally wake up around 6:15 or 6:30 and I could sleep until then but then I can't take a shower in peace.  I mean have you ever tried to take a shower while two little girls run around the bathroom screaming or banging on the shower door or pulling all of the towels out of the cabinet or smearing lotion around the floor or whatever it is that the two of them decide is going to make me get out of the shower as soon as humanly possible so that they can receive my undivided attention!!  Believe me, it is not fun!!

So I usually get up early so that I am put together before they wake up...So that I'm ready for the day and for giving them my undivided attention! 

But today, I chose to sleep...chose to finish my dream...I was woken up to Hailey rocking in her bed...banging it against the wall as she does...and to Aubrey screaming...mom...I am hungry...And then the whining (to which I said, it is 6:30 am...too early for whining...to which Aubrey says, can I whine at 7?)

Now it is 9:13 and I have put off the showering madness for too long.  Everyone is fed, everyone is clean and bathed, dressed...everyone is happy and playing...except for me...I am dreading the 4 minute shower that I am going to have to make do with so that complete and utter chaos doesn't ensue in our house, then the quick 2 minute blow dry of the hair and a quick ponytail...then trying to get a little make up on before the girls decide that they want to make up their faces too and clamor for the mascara!...So Now I'm stalling...

Yep...this is how we all look when Mommy chooses sleep over getting ready!

The upside is that next week I am flying to Nashville to visit my best friend in the world for 4 days...I plan on getting ready in peace every day and not having to make this little silly choice that seems to come up every Saturday!!  But until then...here goes nothing!!

Well at least there's that!!

Oh the pity...Really can people just stop already?  Hailey had an assessment today which meant I had to take her with me to drop Aubrey off at preschool...UGGGG...

Twenty four 3 year olds running into class is actually more like...."ooooohhhhhh look at all that beautiful hair I can pull and all the kids I can make scream while mommy tries to sign sissy in on the sheet and hold both of my hands at the same time"...in Hailey's mind.  I try so hard to be positive...to not expect the worst of her in this situation but the fact is...IT IS LOUD at drop off time for a 3 year old preschool class...Hailey does not do loud, she does not do chaos, she does not do tons of other children.  It freaks her out.  And I have to sign Aubrey in, I have to walk her into the class and they do not have a wheelchair ramp into the classroom (I know...drives me crazy) so I have no other option to walk Hailey in with me and hope for the best...HA HA HA...

First little guy that came into her reach while I was signing Aubrey in and boom...hair is pulled...CRAP.  I apologized to him and to the mommy...Hailey signed sorry (all while giving him that "I'm going to sign that I'm sorry so that my mom believes me but really I meant it and I am absolutely not sorry" look)...but the damage was done. 

So then I start to get the pity looks...I HATE THE PITY LOOKS!  My life is not perfect but it's mine and I love it and I'm happy and I don't have anything for you to pity...

Guess I'm not making any other "mommy" friends in this class...I could hardly run out of there fast enough...

So I picked Aubrey up a few hours later after finishing Hailey's assessment and dropping her off at her school and Aubrey says this..."Mom, my friend says it's ok that sissy pulled his hair"...and I said, "oh that's good...did you guys talk about it?" and she said "yes mommy but he didn't care...his sister pulls his hair all the time"...well at least there is that!

Amsterdam International...Love it!

I have received the poem "Welcome to Holland" many times over the years from well meaning people.  It is an ok poem but usually just bothers me because I always think it is so "simple"and in no way describes what I was going through...Here is an updated version from a blogger.  My fellow cri du chat mommy, Tiffany posted it from another blog.  The author's name is at the bottom with her information. 

I hope that this helps people understand that there is much more going on inside a mother who first receives a diagnosis for their child than a simple cliche can fix or comfort...The depths of your soul hurt...It is unexplainable, unimaginable but here is a pretty good explanation...

Thank you Dana for writing this and Tiffany for posting!

 

Amsterdam International

To fully get this post, please read (or re-read) Welcome to Holland before starting.  Thanks.

In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland."  It is supposed to explain what it's like to have a child with special needs.  It's short and sweet. 

It skips everything.

While "Welcome to Holland" has a place, I used to hate it.  It skipped over all of the agony of having a child with special needs and went right to the happy ending. 

The raw, painful, confusing entry into Holland was just glossed over.  And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.

If I had written "Welcome to Holland", I would have included the terrible entry time.  And it would sound like this:


Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.


And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

(copyright -me, Dana Nieder, 10/2010.  I would make the cool little symbol, but I can't figure out how to)
Please feel free to forward this, blog about it, post it places, etc.  My intent in writing it was to reach families in the early stages of processing having a child with special needs and to let them know that they are not alone.   If you do blog about it, post it on a website, forward it, etc, please link back to this blog (or cite my name, Dana Nieder) and include my email address (uncommonfeedback@gmail.com) so that I could be contacted if anyone wants to reach out. 

Also, if you blog about it or post to a website, please email me to let me know, because I think that's pretty cool :) 

Thanks for reading :)

My definition...My identity.

Aubrey goes to preschool.  A school filled with normal little three year olds.  With two older siblings she couldn't wait to start going to school and so I found one for her, two days a week for a few hours.  I was so excited for her...and for me...other mothers to meet! 

I've been sort of a recluse in the friend department.  Over the years, I have discovered that other mothers as a general rule don't want to visit very often...I can't blame them, for Hailey pulls their children's hair and doesn't play well with their children so they get bored.  Oh they still visit...just not often.  And plus, I worked a lot and didn't have the time to cultivate new friendships.  Many of my childhood friends disappeared when Hailey was born.  I was an emotional wreck and all I spoke about was her disorder, her therapies, her doctors, my sadness.  I was self absorbed and they all just faded away...and I let them.  I wanted to be alone back then, in my sadness, in my new role as the mother of a special needs child...With my new identity.

Since I've been a "stay at home mother" for a little over a year, I found that I am lonely.  I have a couple of wonderful friends who I love and cherish...but they work hard and have families or live far away and so I don't see them very often...don't talk to them as much as I'd like.

So I went to this school excited to meet other mothers...potential friends...so I wouldn't be so lonely...so I could connect with other women who stayed home too...to see how they staved off the loneliness...

But I found that I have a problem.  I have defined myself with Hailey.  With her disorder.  With her therapies.  With her doctors.  I guess I had to...have to, whatever.  But I'd like to not be defined by it. 

I began to think and realized that everyone I meet, I tell that I have a nine year old with a severe genetic disorder...I dare them to ask me what it is...and for that question (which always comes) I have a standard well rehearsed answer...I could say it in my sleep.  It is an "elevator" speech...It is her disorder in a nutshell, in a 60 second explanation...And so I am defined by it.

I try so hard not to do it.  Wonder why I can't just say I have a 14 year old, a 9 year old and a 3 year old.  But no matter how hard I try, I can't stop adding Hailey's disorder after her age.

She is certainly not defined by it.  She is Hailey.  Beautiful.  Stubborn.  Loving.  Sweet.  Nine.  She is her.  She is not Cri du Chat.  She is not 5 P Minus syndrome.  She is not Autism or auditory processing disorder or sensory disorder.  She is simply Hailey. 

So who am I?  What defines me now?

I don't mind...

All of the meetings are getting to me...the IEP prep is getting to me...the conversations about out of compliance IEPs is getting to me...the assessments are getting to me...This is what I'd like to tell all of the "experts"...

I don’t mind...

I don’t mind if you tell me what to do...I do mind if you don’t listen to my response.

I don’t mind if you tell me it’s my fault...I do mind if you don’t take responsibility when it is yours.

I don’t mind helping if you need help...I do mind if you take advantage of me.

I don’t mind if you tell me that you don’t like me...I do mind if you don’t know why.

I don’t mind if you don’t agree with me...I do mind if you can’t give me the chance to disagree with you.

I don’t mind if you criticize me...I do mind if you do can’t do it to my face.

I don’t mind if you need a break...I do mind if you can’t give me one.

I don’t mind if you don’t listen to me...I do mind if you blame me afterwards.

I don’t mind taking consequences...I do mind if you can’t take yours.

I don’t mind doing things for you...I do mind if you fail to appreciate it.

I don’t mind if you’re cranky...I do mind if I can’t be.

There...I feel better!

A special kids event...

An amazing event put on by the Active 20/30 Club in Sacramento...All Sacramento area special kids and families were invited to a fantastic day of fun at Fairytale town.  Thank you Active 20/30 Club for such a wonderful day...

Mommy needs a time out

An ear infection...a crazy day...a crazy night...doctor's office times two...fight with the pharmacist...I hate when she is sick.  Not only because she is sick but because when she is sick, it makes her crazy!  We made it through almost the whole day and the whole night.  Every crisis averted, every thrown toy and scream from the little sister, we got over it.  I was thinking as we were cuddling on the couch, just the three of us girls, wow...we made it through the day.  Then I said, let's go brush our teeth and read stories.   All hell broke loose.  Long story short, she got a hold of my new fancy $4 oil reed thingy...You know, the little thing with the smelly oil and the reeds sticking out.  I bought it the other day on sale and hubby said, really?  You know she is going to flock to this and throw it right?  And I said, no she won't...she's doing much better.  I was wrong, he was right.  Smelly oil everywhere...GRRRR...I yelled at her.  I hardly ever yell at her but I did and she is sick and I feel horrible but I yelled.  I needed a time out.  I cleaned it all up with minimal damage to the book case, only a warped area or two, threw the hallway rug in the washer...Had my little one get her own jammies on and went into Hailey's room.  She signed sorry and I cried and told her I was sorry too...I knew she didn't feel well and I yelled at her.  It was horrible.  So I brushed their teeth, read their stories, gave her her meds and ushered both the girls into bed...Kisses to both then I closed their doors...Then I snuck back into Hailey's room and climbed in her bed and told her again that I was sorry...That sometimes mommies need time outs too...She kissed my cheek.

Then my son comes out of his room and says, wow mom...it smells GREAT in here, what did you do?  I just started laughing...

The Villain & Two Years Ago

It's been 2 years...to the date.  I'm still bitter but a little less than last year.  I imagine it will continue to be less and less each year.

I used to own a business, have a job, be an executive in a big fat million dollar company.  I used to own a million dollar house, have a house keeper, shop to my hearts content...I use to have a huge retirement account and two fancy cars, two yachts, medical insurance for my family, money to vacation wherever we wanted.

I use to have a business partner, who was also my father. 

I now have none of those things...including the father.  He went on a tirade.  Really I can't recall the details anymore.  It was so shocking, so emotional.  Because he was my father, I acted like...well...a spoiled fit throwing daughter instead of like an intelligent vice president.  I didn't handle it "professionally".  I tried and failed.  Would you handle it professionally if your father changed the locks on the business (including the yachts) and decided that you had no place there anymore...If he decided that 90 hours a week of work was not good enough...If he cancelled your children's (yes, including Hailey's) medical insurance...You had to do more, be more in order to be a part of the business.

So now I have none of those fancy things.  I do not own a million dollar home, I do not own a fancy car...I do not shop, I do not eat out, I do not vacation.  I do not have a retirement account...I don't have more than a hundred bucks in the bank right now.

But what I gained is huge.  So what I do have is a home that I love, close to my family...I do have self respect and the time to drive and pick up my children from school, I have time to cook, time for friends, I have a life beyond work.  I have a renewed sense of who to trust and who to turn away from.  I have strength and the knowledge that my husband and I will overcome any obstacle that is put in front of us...I'm a survivor and I gained pride in that.

So I'm bitter yes because he stole my choice but beginning to be thankful that I was shoved into the life and role that I have always wanted to be in.

Day 1 Prep for IEP

On this, the first day of preparation for Hailey's IEP...I have hit a road block.  The IEP has been cancelled, the speech assessments haven't been completed (supposed to be done by tomorrow) and I am tired.  I have been researching online and talking with other parents and advocates all day...I am going in circles.  I have left messages and sent emails...Nothing.  I have gotten nowhere...no progress at all.  Now I just looked down and it is 2:00.  Minus the hour that I took Aubrey to the library program, I have been working on this since 8:30 am...five and a half hours....and nothing but a bunch of print outs of laws and articles that I have read a million times.

And so I wonder, how do they expect parents to do this...Run in circles, hope for a lucky break, a great program manager...but most of the time, we do the research and forge the battle to prevail for a year and then at the next IEP...slam they do it again and you start all over again....like the saying goes, you may have won the battle, but you haven't won the war...

I was counting them as I was getting everything in order this morning and we have had 12 IEP meetings in the last 6 years and 9 IFSP meetings...all that we have had to prepare for, get ready for, research, fight...There has got to be an easier way.  It takes me about 16 hours on average to prepare for an IEP meeting...It takes me about 40 to 50 hours in addition to that if we don't agree on something and I have to go to serious advocate mode...

My kitchen table is covered in papers, research, files and notes...My desk is covered in sticky notes, phone numbers, notes from calls, paperclips...etc etc etc...Hailey gets off the bus in an hour which means I need to button it all up so that she doesn't walk into a "mess" which sends her into a downward spiral...And Aubrey has basically been ignored all day (Oh she's been fed, playing and coloring next to me...but I haven't really heard anything that she's said and that is sad).

I think that I will button it up an hour early and sit outside with Aubrey...maybe some chalk or cuddling or reading before Hailey gets home...Then it will be back at it again when the girls go to bed...Yawn...I'm already tired.

A Great Life

I have a great life.  I complain and bitch and whine about the negatives a little too often...So here are my positives...

1.  I have three medically healthy children.  Although Hailey has a genetic disorder and a multitude of other challenges, she is medically healthy most of the time...

2.  I have a wonderful husband who works his rear end off every day so that I can stay at home and take care of my three beautiful children...who he loves with all of his heart.

3.  I have food in the cupboard and refrigerator...OK so I keep the grocery bill down to $100 a week but I am good at budgeting and shopping cheap so we have healthy food in the cupboard and refrigerator!

4.  I have wonderful friends...They are few but precious and love me all the time, no matter if I am bitching and whining or on cloud nine.

Does there need to be anything else?  I am happy with my great life and today I am reminding myself just how wonderful that life is!!

Although having a child with a rare genetic disorder is inexplicably complicated and difficult, it is also beautiful.  I would not know half of my friends if it wasn't for the challenges that I have been through...I don't think that people who live the fairy tale can possibly live as rich and rewarding a life as I have...

Don't worry...I have Hailey's IEP next week & will be preparing beginning tomorrow...I am sure that I will be back to my complaining self by then!!

A little anger to get you going...

When we moved to Sacramento County from Marin County, Hailey had to be "reevaluated" for all of her services.  Most of them went smoothly...One did not.  After the social worker did her reevaluation and presented her report, Hailey's services were cut almost in half...This is after a one hour assessment by someone we have never met before...a stranger.  I am still not sure how she evaluated her at all since Hailey sat on my lap through the entire meeting...

During the initial phone call to the social worker I was asking all of the right questions in order to see how she came to her conclusions in the report...One was that Hailey had independent and safe movement...I asked the social worker if she met my child, if she maybe had Hailey mixed up with one of her other cases.  You see, Hailey can walk and she can run and she is fast.  She can go up and down the stairs holding the rail...but she is DANGEROUS to herself.  She has no idea that she could fall and if someone is not next to her, she would trip and fall hundreds of times a day. 

So the social worker says to me...WAIT FOR IT..."look my friend, would you rather that she was immobile, in a wheelchair or bed because that is how some of my cases are"  And I was enraged... I think I actually lost my mind at that moment because that is the most unprofessional question that I have ever been asked by all of the hundreds of therapist, social and case workers I have met over the last 9 years.  All I could think is, you don't know me or how my life is or what I wish for or what I do every day to keep all of the balls in the air.  Don't ask me what I wish for or what I would rather because first it is none of your business and second it doesn't really matter what I would rather because this is what IS...

In retrospect, I think that I was so angry for a variety of reasons...

One I hate focusing on all of the negative aspects of Hailey's disorder.  I choose to see her beautiful smile and hear her infectious laugh.  I choose to marvel in how she walks at all, how she writes her own H, how she uses the potty most of the time, how independent she is becoming in her own little world...I try hard every day not to see that she is 9 and can't write her whole name, how she can only really approximate about 6 words, how she falls all the time if someone is not right next to her, how she still wears a diaper at night.  During these reevaluations and assesments and IEP meetings and IPP meetings, the focus is on what she CAN'T do not what she CAN do. So after going through about 6 of the meetings right after losing my home and business and relocating 100 miles away...I had reached my limit for tolerating other people's ignorance, questions, judgement.

Two I hate when people ask me ridiculous questions.  They infuriate me.  Sometimes do I wish she was in a wheelchair and immobile?...another loaded questions but...yes, sometimes...That way I wouldn't have to worry about her falling and hitting her head and going to the hospital for stitches if I let her out of my sight or even further than arms length away...I wouldn't have to worry about her chasing her sister and attacking her and hitting her and pulling her hair...Does that make me a terrible person, mother...maybe but I think that most of the time it just makes me human...I don't really wish she was in a wheelchair, only in little blinks...In the backs of our minds, I think we have all kinds of little blinking thoughts that aren't truly wishes but rather contemplations. 

So I wrote a complaint letter about the behavior and unprofessional comments from the social worker and I filed a fair hearing and we won.  I am not sure if I needed to be so upset and enraged to win...and I'll never know.  What I do know is that one comment from a horrible social worker gave me enough energy and enough drive to research every day, consult attorney after attorney, file a fair hearing, prove that my daughter required 24 hour supervision...and win...until the next reevaluation or assessment or IEP or IPP....and the next time my daughter needs someone to advocate for her...

A Private Language

While driving my little lady to school today, her little sister says, "I speak word English, Hailey speaks sign English". 

So I say, "yes, that's right"

and she continues..."That is why she has to hit me and pull my hair and bite me sometimes because she doesn't know word English, right Mommy?" 

And I say, "Well, no matter what she shouldn't hit or bite you or pull your hair." 

So Aubrey says, "Well that's why she does it you know...If she knew how to speak word English then she wouldn't have to hit me, pull my hair or bite me in the car because then she could talk to you without me screaming for her"

WOW...my 3 year old just figured out what it took me 2 behaviorists to figure out.  The car is a challenging place for Hailey because she communicates using sign.  I can't watch her hands and signs in the back seat while I am driving so she has to get my attention...So she attacks her sister so her sister will scream and then I will look back.  I think growing up with a sister with cri du chat has made Aubrey wise beyond her years...

So I say, "Well honey, maybe we should have Hailey start riding in the front seat" (Hailey is almost 60 pounds and is already tall enough to sit in the passenger seat)...And Hailey CLAPS and CLAPS and laughs and laughs....

Then Aubrey claps and laughs and says, "See sissy, I told you I'd tell her"...

I think that they have a private language that I'm not privileged to know and that makes me Clap and Laugh!

A Fashionista Melt Down!

My little lady is a fashionista.  She loves to pick out her own clothes and decide what she is going to wear and when.  A glimpse into the norm, for don't all 9 year olds love to pick out their own clothes?  That's wear the norm ends...On a regular morning, the girls get wake up, pick out their clothes, head to the bathroom to bathe and get ready...Only today, the sweater that Hailey wanted to wear was...wait for it...DIRTY!!  Oh no, I thought.  Crap...What to do?  Let me just tell you that looking back, I made the wrong decision.  Because by dirty, I don't mean that it was in the dirty clothes hamper...I mean that someone accidentally hung it up while unloading the backpack instead of putting it in the hamper (that would be me by the way...ut oh).  So she was adamant that she was wearing that sweater...And I was adamant that she was NOT wearing a dirty sweater to school...And so the mother daughter power struggle.  She pulled her sister's hair, threw her hearing aides on the ground, refused to eat breakfast, hit me, tried to bite me...I am talking about the MOTHER of all MELT DOWNS!  I could go on and on...How in the world was I going to get her back under control and in the car to get to school on time?  I bribed her.  I know it's horrible.  I'll pay for it later I am sure...I let her go into my closet and pick whatever sweater that she wanted...Then as the sobbing subsided she decided that was a pretty good deal...She picked out a lovely pink sweater...I pulled it over her head, rolled up the sleeves, dried her tears, replaced her hearing aides, cleaned up the breakfast on the floor, redid her sister's hair, and out the door we went.  We made it to school with a minute to spare and she had a huge smile on her face...

So here's the deal...I should have just let her wear the stupid dirty sweater to school.  Then we never would have had to start our lovely Friday with madness and craziness and huge tears...But that's the thing...It is easy to look back and say 'I should have'...I'll just have to remember this lesson for next time, or maybe I'll just be more careful about what gets hung up and what goes in the hamper!  I just have to hope that by bribing her, it doesn't encourage her to repeat the episode again so that she can wear my clothes...Silly Fashionista!

The Magic Pill

I think about it often...this elusive magic pill that I've heard about.  The question we've all asked ourselves and feel pretty passionate about...'If someone handed me a magic pill to "fix" her, would you give it to her?'. 

It's a trick question.  Nothing you say when it comes up is right, the looks you get from the questioner no matter how carefully you answer will freeze you in your place.  It is a horrible question.

I first heard it when Hailey was just a few months old and we travelled to the annual 5 p minus conference.  We were excited to meet other families who were experiencing what we were...Families who lived in a world that we now lived in.  We sat in a great big conference room with our baby girl in the stroller and listened to the speaker...and he said, 'If someone gave me a magic pill to correct this disorder, I wouldn't give it to my child.'  He went on to say that the child was who they were because of the disorder, to "fix" it would be to take away who they really were....

Seriously???  You have to be kidding me, I thought.  If someone handed me a magic pill to take this life that we didn't choose away...to take her pain away...to "fix" her...I would give it to Hailey without a thought or a question.

Now it has been over 9 years since the question was first brought up and I think a little differently.  I would take pause and see that fixing that broken chromosome would take away some of who she is.  It would change the way she looked, the way she thought, the way she laughed, the way she walked...It would take away the experiences that we have had, the people we have met, the road that we have travelled.  If I never heard the word cri du chat, five p minus, cat cry syndrome...It would change me.

So the question...Would I give her the magic pill???  YES...I would.  I would give anything to hear her voice and to hear everything that she has stored in her head over the last 9 years.  I would give anything to see her run through the playground, meet friends, go to birthday parties.  I would give anything...

It's not possible though, there is no magic pill...So I'm thinking that it would really help if people stopped asking me the question.  It's a hard one to answer and an even harder one to have to think about.

I'm doing something right

There are nights like last night that I feel like I am doing everything wrong.  Hailey has a new friend at school who has some pretty major behavioral problems...in typical Hailey fashion, she has been picking them up and trying them on at home...What will happen if I pull my sister's hair so hard that she screams?  What will mom do if I pinch my sister's arm and draw blood?  What will happen if I throw my hearing aides at mom while she's trying to cook dinner?  I'm just hoping that I can wait them out and not give her much attention for them...that way, they won't last long and become a problem.

Well last night was one of those nights where I was watching the clock, waiting for 8:30 so I could put the girls to bed...I even thought of skipping their night time stories and just sending them to bed early.  I was literally coming apart at the seams and just barely holding on to my patience.  So I thought, I'm just doing this all wrong...My girls fight all of the time, I can't even listen to my 14 year old son for one second before the two of them are screaming at the top of their lungs...

Then this morning, I go to walk out to my car and find this note taped to the door for me...From my 14 year old son...Be prepared, you might cry...I know I did...

READ THIS TO THE FAMILY BEFORE THE GIRLS GO TO SCHOOL

I LOVE YOU ALL

I just wanted to let you know how great my family is.  You always help me when I need help and you always provide me with the things I need.  It takes an outstanding mom to take care of a 14 year old kid, a 3 year old girl and a disabled 9 year old.  We have all been through a lot, moves, divorces, crazy grandpas, ha ha and a financial disaster.  Even when we are in a hole, you always find a way to provide for us.  Tim and I have created a great relationship and I am glad he is my step dad.  My sisters are awesome, sometimes they are a hassle but I will always love them.  I love you so much along with the rest of the family.  Sometimes I feel that I am unfair to my sisters, sometimes I am super snappy towards them and a lot of the time I pick sides.  I know you have been stressed out a bit because we never really know when Tim will be home, and on top of that the girls are little monsters sometimes.  I appreciate you so much mom, I love you!!!!!!!!!!!!!!!!!!!!!!  Love, UR BOY

The best big brother and son EVER!

So apparently, I am doing something right...I am raising a loving respectful intelligent young man who I am so proud of.  I am raising a son who protects and loves his family and has the sensitivity to write a note like that to his mama...So to my boy...I LOVE YOU RIGHT BACK!!  You are definitely the BEST teenage boy that a mother could ever ask for.

It was just a cookie...with some Rainbow Tears

From November 2007...

Rainbow Tears...That is what my emotions feel like today. An array of colors, tones and hues. A mixture of sadness and joy.


My little one ate a cookie last night. I know, doesn't seem significant does it...Well it is. She is 8 months old and like any other normal child she tried, held and succeeded in eating her own cookie. It was a mess but sheer and utter bliss for her. She was happy and pleased with herself and we were all happy and pleased for her. We clapped and ooed and awed.

And here come the rainbows. My other little lady, who is 6 sat in her booster seat at the dinner table struggling to eat her burrito, cheese and beans herself. STRUGGLED...while we all ooed and awed at the babies success...I was happy for the baby and sad for my 6 year old.

Sad that everyday she tries so hard but that she didn't even begin to eat anything by herself until age 3. Cookies, fishy crackers all just a different world away for her. I am sad that no matter how hard she tries she will never simply do things so easily as the baby does.

But happy all in another minute that she can even struggle to eat her food. Happy that she can walk and laugh and play and giggle and put her own boots on at times. Happy that she can use the potty by herself sometimes, that she can sometimes get into the carseat all by herself, put on her jacket all by herself and RUN RUN all by herself. Pink parts of my rainbow where I get to rejoice in the things that she can do, that she tries to do and the successes that she has.

The baby is pulling to stand now. She just decided one day that she wanted something on the coffee table and she just stood up. She made it so easy. It took my other lady 3 years to do that...3 years of physical and occupational therapy to simply stand up with support. And even then it was akward and sad and happy all at one time. So those tears are black...and frustrated and angry. but happy and pink and yellow that she did it at all.

This is how I am destined to cry forever...Happy tears for everything that she can do and that the baby can do and that my son can do and Sad tears for what she will never do, that the baby and my son will do with ease.

Tears of rainbows, mixtures of sadness and hapiness.

The first of what I hope to be many

I've been thinking about doing this for a long time...starting a blog.  I have journals that are busting at the seams and sitting unread.  I picked up a magazine last month and saw an award for a blog written by another special needs mother.  It has been so wonderful to follow her blog and see what she experiences...in another state, so far away, surrounded by different people of different backgrounds and yet we have the same feelings...many of the same experiences.  This isn't the first blog about a child with a disability, a genetic disorder, or cri du chat but I hope that it will help people to understand what it is like for a family, for the child, for the mother of a child with cri du chat.

The reasons why I didn't start before are many...I had a full time job while balancing the care of my children and running a household...I didn't want other people to see my weaknesses, my pain and misunderstand it or mistake it for me not loving my daughter completely...I didn't want to admit that I needed support in this new world (not so new now, it's been 9 years!)...my family raised me to think that privacy was the best policy.  Forget all of that now...I'm taking the plunge.

She was born 9, almost 10 years ago to a happy and excited Mommy and Daddy and a proud big brother...She came into the world small, not breathing, with a little tiny head and moles all over her ears.  Mommy and Daddy didn't really understand the words coming out of the doctor's and nurses mouths...microcephaly...What in the world is that??? they said out loud...ear tags...What are those???...Genetic counseling, a neonatal specialist, specialty nurses...It went on and on.  The next few days are a blur of feelings and crying and worrying and measuring other people's heads.  You see the geneticist informed Mommy and Daddy that small heads (microcephaly) can run in families and doesn't necessarily mean that there is anything to be worried about....he would see them all in 3 months to see how she did...So they walked around for 3 months, measuring every family member's head...charted them and brought it in to the geneticists office at that 3 month appointment.  The appointment went well.  The little girl was growing steadily, if not quickly, she was developing, if not quite to the normal standards...etc etc etc...Mommy and Daddy and big brother packed up their things from the geneticist office, with the little girl given a clean bill of health and started out the door...But stopped when the doctor asked "HOW DOES SHE CRY?"...Mommy turned and said, "like a kitten...everyone says so"..."SIT BACK DOWN PLEASE" says the doctor and began explaining about a "disorder" where the babies "cry like kittens"...You are kidding me thought Mommy but couldn't make anything come out of her mouth....Besides sobs...and there it is, the little girl was tested and found to have Cri du Chat Syndrome...

As I sit here now and think about it, 9 years later, I still sob thinking back to that moment...the moment that my life changed, that my family's life change, that my son's life changed, that my marriage changed, that I changed.  I had to become smarter in order to navigate the strange new world and learn this new language, I had to become stronger in order to get out of bed each day and face the questions, the concern, the pity, the whispers in the corner, I had to become softer for my son so that he wouldn't notice that I was becoming harder to everyone else.  I had to protect myself, my daughter and my son...It all came down to change.