Sad Words

Lauren had a meltdown at ballet which is nothing unusual. However, during the middle of it she cried and said "I don't want to be that girl with Autism. I want to be that normal girl. No one else my family is girl with Autism. I want to be like all of other people."

I knew it was coming, it didn't make it easier, but I knew it was coming.

And it sucks just as much as I thought it would.

Normal behavior

One of the things that sucks about Autism is the signs or symptoms. Some of the signs and and symptoms of Autism are also normal typical 2-3 year old behavior. No wonder are parents are so scared.

Shannon did this. She's as typical as they come.

Nothing nice

I'm sure we've all heard it before. "If you don't have anything nice to say, don't say anything at all." I've heard it since I was little and now have said it more times than I can count.

Lauren got her one of her numerous report cards (it's special education, we don't do anything halfway). The report card from her regular 1st grade teacher really, really bothered me.

I can't remember exactly what was said on it but I know that it said that Lauren was "peforming well below grade level" and is "extremely unfocused". The narrative also wished her well this summer and told her to have fun in second grade.

There was not one postivite thing said about her. Her teacher could not come up with anything posistive just some generic remarks. And that bothered me a lot. So much that I'm writing about it over three months later.

I get that Lauren is delayed. I know that she is behind. I know that she can't focused. I go home with her everyday and live with her well beyond the 9-4 school day. I see her 365 days a year. I'm not stupid nor naive. I'm not turning a blind eye to the issues that she has. But when they write about what she is not doing, it doesn't surprise me.

But, there is something great about Lauren. There's a lot of great things about Lauren. I fail to see how after having her in a class for 9 months that you couldn't come up with something. I'm not really picky. "Lauren has a great smile." "Lauren has a great memory." Anything would do! This is especially important because at age 7, it is more about me than her.

I did speak to her principal about it. I know that her teacher didn't mean to hurt me. She didn't set out to make me sad about it but she didn't think. The principal did thank me and said he wants his staff to be aware of issues like this.

My friend, Leslie at www.mymommysplace.com, summed it up the best in her back to school haiku. "she may be the dark spot in your day, but she is the bright spot in mine". And that is my Lauren.

Crying

Lauren is currentlly upstairs in her bed crying that she doesn't want to go to college. She doesn't want to leave her family because we will miss her so much. Goodness kid, you are 7!

I just told her about colleges she could go to and still live at home. She's now excited that she could be a Buckeye.

I also told her that this is her home and she doesn't ever have to leave. There will always be a spot for her in our home and house.

We've decided to live our life and assume Lauren will never be capable of living independently.

But on the other hand we're hoping that she will.

Making the Ordinary Extraordinary

Autism and other special needs can be life altering and life consuming. It makes what should be no big deal turn into a big deal. It can make a simple trip to the grocery store something that needs to be well thought out and well planned.

I've seen my two typical toddlers learn to speak. I've seen Ellie learn to write her name with ease. I've seen them meet developmental milestones and I've been proud.

Since having Lauren, I've stopped caring about when my children did something. I've learned to rejoice that they've done it. But I've always assumed that the would do it.

With Lauren, I make no assumptions. I do not assume that she will learn to read. I'm just happy if she does. I will jump for joy if she learns to write her name because I no longer assume she will. I'm not pessimistic, I'm realistic. I no longer look at normal child development as a given. I know it is a gift.

So, that's why this week my heart leaped with joy.

Lauren was invited to a birthday part and I am so extremely happy.

No picture of Santa

Santa we like you. We don't go all into you like many households but we do like you. You are a fond Christmas memory for me and my husband. You also give us the chance to discuss the One who does "see us when we're sleeping, and knows when we're awake". You give us a chance to talk about the One who gives good and perfect gifts to His children.

I hauled three children to the mall last night with the assistance with my husband. You know the 2 year old and the 4 year old who just had a Christmas party and the 6 year old who babbled on about the Winter break. They were kind of excited.

I know you like to hang out at the mall. I guess you don't realize, Santa, that the mall is not a good place for my family. See, my 6 year old has Autism. There is so much stimulation at the mall. The lights, the sounds, the smell, the 1 million people there. It's kind of crazy. I mean, I get overstiumlated there and I'm considered to be neurotypical. I still don't think I've recovered from loosing Lauren at the mall in Christmas of 2007.

My kids have not always been fans of yours. You probably remember but I have photographic proof. Santa pictures in 2005 and 2006 didn't go so well. I no longer drag my kids up to see you. Very simply, what's fun and amusing when your kid is 2 or 3, just isn't as funny when your kid is 6.

You know Santa, I'm desperately trying to live with one leg in the typical world and one leg in the special needs world. It is a difficult balance to make and one that I fall off of frquently. So, when my 4 year old requests to go see you, we do. It's what typical families do. However, when your 6 year old starts screaming in agony you make promises that she won't have to have anything to do with you. That's what special needs parents do.

We arrive at the mall last night and stand in line. I walk my 4 year old up to you and watch my 6 year old wave to you at a distance. That's what parents of both types of children do.

We were doing well Santa, living in this dual world last night. But, Santa, you made one fatal mistake that I fear has put a damper on our relationship. You, pointed at my 6 year old and said "What's wrong with her? She doesn't want to come see me. A big girl like that?"

It took everything in me to say "Nothing is wrong with her. What's wrong with you?" She's 6 and she has Autism. End of story. Nothing is wrong with her.

I'm think Santa, you may need to sign up for a class in how to interact with people with disabilities. My daughter is among a large and growing group. Kids who look totally typical on the outside but aren't on the inside.

OT issues

Lauren needs OT services. What are OT services? Good question! Everyone knows what a physical therapist does and what a speech therapist does. Occupational therapy remains a mystery. My best friend, Cathy, from college is an OT and I had some idea of what she was studying to be but I never really got it until I had a child who desperately needed those services.

Cathy has explained it to me this way and it is a simple explanation but it's the one I've found that makes the most sense. She says "We help people get back to doing their job--- whatever their job is at that moment in time". My job is to go to work, type on a computer, do housework (sooo wish that wasn't my job), and care for my job. Lauren's job is to play, write, do school work, and be a 6 year old.

Lauren has been going to this OT since around the 4th of July. I've never met her but I have to be at work at 7:30 on Fridays and OT starts at 7:15. I was going to go in February, one of the many things I'm going to do on materinity leave. I rarely take time off because I'm saving all my leave for when I have Omega.

All is going well, so I thought until today.

The private OT (Holly) has been working with Lauren has come to the conclusion that Lauren has a processing problem in her brain which is why she has such difficulty writing. She is able to draw straight (relatively) lines but gets confused when she has to switch directions. Since there is only one letter (I) that you can make and go only one direction, she doesn't think Lauren will ever be able to write or even form basic letters.

Problems with this: Lauren is still considered a VERY young child in regards to writing. I will admit that next to her focus/attention problems her fine motor skills are her absolute weakest skill (she scored at age 6 in the 2 y ear level on the VMI (visual motor index). Lauren has never been diagnosed with an underlying neurological disorder which would lend it self to such as statement. Now, I'm still not convinced that Lauren doesn't have an underlying neurological disorder besides Autism. We just haven't found one as of now.

Anyway, when I heard this I decided to not sit at my desk and cry which was my first response but I called her OT at school who has been working with her since 9/08. She does not agree at all with that assessment. Teri (school OT) even said that even if she believed that it is still way too early to make that type of assessment. They do a lot of Hand over Hand( HOH) exercises with Lauren. Teri has noticed a difference in her this year as Lauren is now attempting to force her hand to go a certain way making letters. She knows which way an F is suppopsed to go, she may not be able to make it go that way independently but she knows which way it is supposed to go. Secondarily, she can now make an L. It is readable and legible. Not on a 1st grade level but it's there.

I also called Cathy. We had a quick conversation as there were six young children screaming in the background. Three of mine and three of hers. She always makes me feel normal. She's never woked with Lauren on a clinical level but also indicates that based on Lauren's diagnosis and test scores and age, she would not be able to make that type of assessment at age 6. She said she would feel uncomfortable making that assessment at age 10-12 let alone 6.

Anyway, I have Lauren's school OT calling her private OT. Maybe I'm missing something. Holly also said she doesn't think OT should continue due to the above reason. Teri (school OT) also said if we are going to jump to this conclusion we absolutely need to get her neurologist involved. That's not something Holly has suggested either.

It boils down to us needing someone convinced that Lauren can succeede despite her limitations. Lauren doesn't know what she not able to do and she doesn't know that there is anything wrong with her. I don't ned someone working with Lauren who has come to this conclusion at such an early age.

Bob also asked multiple times if she felt that Lauren was going to have a hard time writing and she stated that she was never going to be able to write.

I remember when Lauren was under 1 and had been diagnosed with Failure to Thrive. There was one doctor at our practice that made me feel horrible. I kept going to see him until I was a crying mess. I then made new appointments with a new docotr within the practice. I was so scared to say something to him or to switch right away when I felt uncomfortable with him. That's not the case anymore. It's amazing how mcuh more confident I feel advocating for Lauren at age 6 then I did at age 1.

A realization

I love to read blogs. It's my hobby or past time.

I specifically love to read blogs about kids and happy normal boring families.

I also like to read blogs about kids with medical or developmental issues. I'm drawn to them and can blog hop to find them. I like reading about different treatments and different therapies and how people change and grow in spite of life altering news.

In reading these blogs, I've realized that there are families and moms that are totally at ease of who their child is and what their child's abilities are. Sadly and honestly, I'm not just one of them. I also don't know when or actually if I ever will be.

It is a constant and daily struggle for me and little things can set of my tears of sadness. Ellie was recently invited to a birthday party. She was so excited and I was so sad. Lauren's never been invited to a birthday party or even over to play. I'm not sure if she ever will be.

I love taking my girly girls to ballet. They've talked about ballet for so long and we've been unable to let them go until now. With my recent raise and the plethora of overtime now offered to me, it is now within our grasp to given them this. They love it. I love watching them get dressed and love hearing them ask "is today ballet?". However, my heart breaks a little everytime I see Lauren in the class. Lauren towers over everyone as she should. It is afterall, a class for 3-4 year olds. Lauren is 6 and this is the best fit for her.

Everytime I go to an appointment, my heart carries a secret wish. See, I don't want any therapy to make her better, I want it to make her normal, just like everyone. I know that despite everything we do, Lauren is never going to be like everyone else. Things are never going to be easy for her.

At the end of the day, it's my issue. It's not Lauren's issue and that's a good thing. Lauren is happy and thriving. She loves her sisters and she loves us. She loves school and could go everyday. She comes home with great stories about what happened at school. She fights with her sisters just like any other 6 year old.

I work very hard to find peace and acceptance and I hope I will.

The beginning (for someone else)

On February 2nd 2007, I sat at a meeting with all these professionals. Besides the principal and a special education teacher, eveyone else had some type of initial behind their names.
I listened to them speak and my life as I knew it on that day stopped. It was Lauren's first IEP meeting and they were going over the results of her MFE. I fully expected to hear about her speech and language delays as that is what I had called about it. The big problem was they kept going. I heard gross motor delay scattered scores mostly in the 20 month range (she was 47 months old) with some scattered up to 27 months. Deficits in social development. Significant fine motor delays. Seriously, it was the end of my world.

Yesterday, my husband relayed a conversation he had with our neighbor. Her son is about 6 weeks younger than Ellie so almost 4 1/2. She has started having signficant concerns about her son's development and she afraid almost terrified that he may have that dreaded disorder, the one that starts with an A, Autism.

There is so much I would love to tell my neighbor. So much that goes beyond the practical what to expect at an evluation and what the letters in MFE and IEP. But I don't know if she would believe me. I know I wouldn't believe me.

First of all, high functioning Autism is not the end of the world. I can't speak for classic Autism but high functioning Autism can make your world a lot harder but it does need to be life ending or defining. It takes advance planning to live your life but it can be done.

Second, there is relief in finding that professionals agree with you. I can't recall how many times I looked at Lauren and thought "There is just something wrong with this kid" but nobody listened. As difficult as that MFE meeting was, there was a relief in knowing someone else saw it to and that I was not crazy.

Third, the people you meet on this journey are amazing. I've met doctors that would give the world for my child. I've met doctors whose deisire to help different kids shine through their words. I've met therapists who shout with joy when Lauren cut a straight line.

Fourth, it gives you perspective about the world around you. I used to think that everyone was like me. I never realized the how much some struggle to do what comes so easily for me. I've learned that there are special hearts in minds and bodys that don't work exactly like they are supposed.

So, Neighbor, welcome to the journey. I hope you are ready for it.

Since I haven't talked about Meds in forever

I figured I should now.

We took Lauren back to the neurologist on 10/5 and we decided to dramatically change her medication. This is what she was on prior to that appointment.

Morning:
10 mg of Ritalin (works for hyperactivity but is not a long acting drug. I believe it stays in your system for 4 hours)
40 mg of Straterra (works to improve focus)

Afternoon:
5 mg of Ritalin

Bedtime:
0.2 mg of Clonidine
6 mg of Melatonin (not actually a drug but a supplement)

Ritalin is a stimulant and can wreck havoc on a child's sleep cycle. We were the lucky winner of that. She had been on 5 mg in the afternoon for a while and we bumped it up to 10 mg. She then slept for 1 hour in a twenty four hour period for several days. We went back to the 5 mg dose but her sleep never returned to normal. Normal for Lauren is about 5 to 6 hours a day. Normal for a 6 year old is about 10-11 hours.

Clonidine is actually a very old high blood pressure meds that help some kids with impulse control and makes the tired. I never noticed any difference in impulse control but

On October 5th, we switched to this regiment.

Morning:
5 mg of Adderall XR
40 mg of Straterra

Evening:
50 mg of Trazadone (Trazadone is a very old, very cheap anti-depressant that is used primarily for slep now)

The results almost 2 weeks later. Trazadone good, very, very good. She is now sleeping 10-11 hours a night on a consistent basis. I don't think she has had this much consistent sleep since she was 2. I feel safe to care for my children and operate a car.

Adderall XR bad, very bad. She is falling apart at school and almost every note says that she cannot focus and cannot pay attention. She is struggling to do things that she did last year with ease. This suddenly started when we gave her the Adderall. We have even given her 10 mg the last two days with no improvement.

I've left a call for the neurologist and I'm waiting for him to get back to me. This really is trial and error.

My big ultrasound

It was a few weeks ago. I had the big, middle of the pregnancy ultrasound. It is now the 4th time of had this ultrasound. In scientific, doctor and insurance type terms, it is an anatomical ultrasound. That's why most insurance companies pay for it.

But it's not why most people have it. Most people are concerned with finding out what type of baby they are having: a boy baby or a girl baby.

We've chosen not to find out so I was only concerned with how healthy the baby appeared to be. I've learned much since I had Lauren and I can see that health is a relative term. I've seen that disabilities are on a spectrum, some disabilities simply make life harder (which is where, on a good day, I consider Lauren's to fall) and others are life altering and sadly life ending which my friend Joy has experience first handed.

I've learned that the health of my baby is something that I took for granted at one time. I never expected to have a child with issues. My perfect child was going to follow those developmental milestones to the T. It was going to sit up at exactly 6 months, walk at on it's first birthday. It would do this all, on its own without any intervention from anyone let alone me. I was only going to clap and beam in admiration as my perfect child did what it was supposed to do when it was supposed to do it. And that's generally what happens. I have two typically developing children and they have done that.

Obviously, that's not what happened with Lauren. She didn't do what she was supposed to do. She did meet those milestones but on the late end. I always joked at 15 months that she waited for the last hour to be in the normal range. It was funny at 15 months but at 4 not so much. There was just something off with Lauren, something that I couldn't quite put my finger on but it was there. I closed my eyes and shut my ears. But I couldn't do that forever.

Eventually, I ran face to face with the fact that Lauren had obvious (to everyone but me) delays. I can vividly remember her first IEP (Individualized Educational Plan- a lay out of special education services a child will receive) I sat at that meeting and waited to hear about her significant speech delays. They talked about her speech delays of course but they just kept going. She had significant fine motor skills delays, gross motor delays. She was socially where she was supposed to be.

I still remember leaving that meeting and feel like I wanted to jump off a bridge. I hadn't signed up for this and I was suddenly thrust in a strange world that I wasn't exactly sure I belonged. I desperately tried to explain that this was all a mistake. I mean, she just had speech delays.

That was just about 3 years ago now. Lauren has made dramatic improvements. We've made choices that I never thought I would have made. I never would have dreamed I would have put my just turned four year old a narcotic. I never would have thought that my life would be ruled by therapy schedules. I never would have thought that I would have put her in a dance class for kids 2-3 years younger than her and just been happy that she's dancing and now what her ability is.

Anway, when I stared at Omega on that screen, I thought about all of this. I simply sighed and was thankful that his or her brain appeared normal, its heart appeared normal, and all its vital where there and in the righ places. Seven years later and that's enough for me.

Normal

I'm sitting on the couch listening to Shannon tuck in her babies and singing "twink, twink leetle star, how i wonder what you are, up above the stars twink twink little star"

I don't think you can really appreciate typical or normal development until you witnessed development that veers off course or stalls all together.

Seriously, looking back, how could I have not known when Lauren was 2 1/2 and had a vocuabulary of 20 words with no word combination, that there was someting wrong? I spent my entire working career evaluating children. How did I not know? I guess the answer is simple, I didn't want to know. I couldn't face it in my own child.

The more important questions is when am I going to get over it?

Just for a moment

I was looking at Lauren the other day and was transfixed by her. She's a wonderful kid that I wouldn't trade for 100 other kids but life with her is hard. Really hard. Just for that moment I thought about what life would have been like if she hadn't been born with "enhanced" chromosomes.

I would still have very little idea what an OT does. (My best friend is an OT but it wasn't until Lauren that I got what she did).

I wouldn't be up for the day at 1:00 am because she can't sleep.

If I had a question about development, I could go to a child development book and have some point of reference.

I wouldn't have to translate Laurenese to English.

I could just send her on to 1st grade without agonizing over that decision.

I wouldn't have to go to MFE/IEP meetings.

Bob wouldn't be driving her to summer school this week.

I would lack the compassion that I now have. I never assume that a child throwing a temper tantrum is just being a "brat". I realize that just like the world doesn't know my entire story, I don't know the world's story.

I wouldn't be able to fight the insurance company like my life depends on it because in many ways it does.

I wouldn't be able to "fire" a doctor who is not a good match for us.

I would still be assuming that special needs kids happen to "other" people.

I would be watching Lauren read and write.

I could relax at Girl Scouts, playing with other kids, interacting with other kids. I have this constant need to explain Lauren so people don't think I'm a bad mom.

I wouldn't rejoice that my other kids did something; I would be fixated on when they did it.

I wouldn't agonize over my choice of drugs for Lauren. It never fails to shock me that I was giving my child a narcotic at 4 years old. I would do it again in a heartbeat.

I wouldn't have a 6 year old that bites her sister.

I would be able to think of her future in a clear linear path. She'll graduate, go to college, get married. Now I wonder if she'll be 30 years old living with me. Is a group home our biggest goal?

I wouldn't have met so many fascinating people in this community of special needs.

I would be able to let Lauren go to a birthday party without panicking.

I wouldn't have the compassionate girl I have.

Just for a moment, I look and I wonder. I've come to accept and love the life I have but just for a moment, I wonder about the life I might have had.

Evolution

I believe that the Bible is God breathed and in infalliable. I believe that in Gensis, when creation is discussed, that the world was created in 7 24 hour days. I don't believe in macro evolution. Macro evolution is the evolution from species to species.

One of the premises of evolution is that mutations help create change. It is mutations that created a variation in the species. That variation usually helps the members effected adapt in some way. The ones without the mutation die out. They pass that mutation on to their offspring and in multiple generations you eventually have only that mutations displayed. That's the real short version of a complicated theory.

I believe the theory is faulty. It is based upon the belief that mutations are good things. It is based on the belief that a mutation is helpful.

Cysic Fibrosis is a mutation. In that mutation, the body does not produce one enzyme. It ends up being catastrophic for the person effected. It causes decreased lung function and digestive problems. All because the mucus that coats the lungs and digestive tract of a non-effected person, chokes the lungs and digestive tract of an effective person.

Lauren's chromosomes are mutated. She has a mutation on two chromosome. Because of those mutations, she was diagnosed with FTT at 5 months, she has decreased gross motor skills, she has fine motor skills that are delayed over 4 years. She has no impulse control and has extreme attention problems. She is also diagnosed with Autism.

Tell me again how this mutation is helpful?

Results are in

We went to Lauren's neuro appointment. She has now has a new diagnosis. Chromosomal abnormality.

She has extra genetic materian, not a duplication, on chromosomes 5 and 22. The preliminary test showed that chromosome 2 was also effected. However, the FSH test showed that it was a false positive. It's not like Down Syndrome. She has the same amount of chromosomes as everyone else, there just happens to be more stuff on two of them.

It simply reaffirms what we have always felt. She does not have Autism in the traditional sense. Her neurologist has always felt that it's not just Autism. This proves that he is right.

He firmly believes that this explains everything from day 1. It explains the severe reflux, the severe ADHD, the total lack of impulse control, the autistic characteristics, the hypotonia, and dyspraxia.

As for what we do next, my neurologist will start researching in the journals. He's looking for descriptions of kids with similar disorders and a similar genetic profile. He may not find it. I joked that Lauren may be diagnosed with Krueger disorder.

I've looked at a little bit of information. However, it appears that we are very blessed. Some abnormalities on chromosome 5 include cru di chat syndrome and Treacher Colllins syndrome.

It is also likely that many with these genetic disorder are miscarried. I always knew Lauren has been determined to beat the odds.

I've decided I don't fit in

I really don't. I've never made friends easily and as an adult it is even worse.

I work full time so I'm not included with the stay at home moms. Then I get home and my husband rushes off to work (OK I lie, we meet in the parking lot and then I drive the herd home). We are definetely an odd family.

But the thing that bothers me. I don't fit in with other families that have been effected by Autism.

Lauren is very high functioning kid on the Autism spectrum. She can speak not clearly but understandably. She can interact with others, not like I do or even what is socially acceptable but she can fake it for awhile. She loves to be with others. She may not know how to be with other kids her age but she wants to be with them.

I feel odd when I refer to her having Autism especially around someone else who chld's Autism has effected their family even more. I just feel out of place.

She is definetely not a normal child. I see that at Girl Scouts twice a month. She does not know how to iniate conversations with others. She'll say something and then will just keep repeating it.

I know kids try but she's just odd. We played Duck, Duck, Goose and she just ran around flapping her arms because she was so excited. No one would pick her. I was so sad but I didn't know what to do. I would have known exactly what to do, if she had been some other kid. But she's my kid! Luckily for me, my co-leader stepped in.

She doesn't get social cues. In her world and in her life, it is totally accceptable to stand nose to nose with someone. Not every other 6 year old agrees. She also still throws horrible fits if she doesn't get her way. I know this must scare the kids in her class off. They are now 6, not 2. They've moved on and can deal with disspaointment in a different way. Lauren can't.

I just wish she could have a friend or be invitied to a birthday party. I would consider the year a success then.

Last Day of School for Lauren

Lauren's last day of school was today. I stand in amazement at what she has acomplished this year.

She is so much more social. I know that joining Girl Scouts was a wonderful idea for her. She actually initiates conversations with kids instead of simply repeating phrases. The other kids undestand her and respond to her with friendship (for the most part).

She met or made progress in most of her IEP goals except for writing. She is reading below grade level but she has come far. She was able to identify 0 letters on her 1st day of kindergarten. Today, she came name all upper and lower case letters. She can identify 43 sight words. Her goal was 27.

She is making slow, very slow progress with writing and fine motor skills.

Bob and I agonized over this descision on when to send her to kindergarten. Should we send her with her age group? Or should we do another year of preshcool? You would have thought we were sending the kid to college. When I went to her first IEP meeting, in 2/09, what we needed to do was so clear. I needed to unenroll her from her preschool and put her in a 50/50 class at the public preschool. Anything else would have been wrong. This descision was not clear; it was very, very grey. But it was the right descision. I can't imagine her still being in preschool now.


All ready for the last day of kindergarten!

I'm nervous

It's almost June, that means it's almost June 11th which means it's almost Lauren's neurologist appontment. I've been pushing it out of my head for the last month but it creeps closer and closer and closer.

I'm afraid I will leave once again with no direction, no step closer to where she is, and what is wrong. However, I'm equally as afraid that I will leave with an answer. An answer that maybe I'm not sure I want.

I go through stages depending on the moment and the second of the day. In one moment, the doctor can announce she has X (not Autism) and I can leave knowing for once what is wrong with this kid. I can go on to tell my insurance company where to shove Lauren's supposed Learning Disorder and they can start whipping out the funds to pay for her neurolgist appontments.

In another stage, maybe the doctor announces she has Q. Q allows children to develop normally until age 10 and then we'll see dramatic loss of skills, loss of speech, etc. I'm not ready for this.

And maybe, just maybe the doctor will say "her genetic profile is abnormal, but we still don't know what she has. No one has something like this. (this is what I secretly believe). Maybe eventually we'll find out but technology is not there yet. I'd say that they'd name it after Lauren but they never name it after the patient, it's always named after the doctor.

Maybe this is why I've concentrated on posting poems that other people have written. If I focus on other people's issues, I don't have to worry about my own. I wish I could sum up Lauren in a few paragraphs but I can't.

However, if there is one thing that Lauren does well. And there are many things that Lauren does well. Lauren lives in the moment. She focuses on the then and know. She is blissfully unaware of her limitations. So for the next twelve days, I'm going to try that out. I'm going to live with Lauren, in the moment.

Mothers Lie

I have always liked this one. Thanks Joy. I promise I will be back soon--- with original thoughts.

By Lori Borgman

Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more.
She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.
She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).
Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.
She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.
Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close.
The doctor's words took your breath away.
It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.
It didn't seem possible.
That didn't run in your family.
Could this really be happening in your lifetime?

There's no such thing as a perfect body.
Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.
Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it.
Sometimes you mothers scare me.
How you lift that kid in and out of the wheelchair twenty times a day.
How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.
You snap, you bark, you bite.
You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling,"Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you.
From where I sit, you're way ahead of the pack.
You've developed the strength of the draft horse while holding onto the delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.
You're a neighbor, a friend, a woman I pass at church and my sister-in-law.
You're a wonder.

Lori Borgman is a syndicated columnist and author. Web reference unavailable. (Thanks to Andera K. on the EOHarm discussion list

Welcome to Holland

Now that I've welcome everyone to several countries, I'd figured I'd post the original. To me it has, and always been, very, very hoky and way too simplistic. They seemed to get a guidebook to their disability. When I showed up in this strange country, I must have walked past the person giving out the guidebooks. Also, the rest of the world knows they went to Holland. They don't expect them to live like they went to Italy. I believe this was written about a chlld with Down Syndrome. Such is one of the many differences between a child with an obvious disability versus a hidden disability.

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.