Happy St. Patricks Day!

Happy St. Patricks Day!! Today we will adorn ourselves in various shades of green, serve up plates of warm corned beef and cabbage and wash it down with pitchers of green beer all in celebration of....ummm...wow this is embarrassing, but I really have no clue what the whole idea behind St. Patricks Day is. All I know is I don't want to get pinched and to be on the lookout for a little green man. But nonetheless, we are celebrating today and not just in honor of this Irish holiday. Today is also in need of recognition as it is the third day in a row that Camryn has woke up with a clean pull-up. And maybe I should clarify what I mean by clean. It still weighs in at no less than 5 pounds,completely soaked with urine, BUT there is no number 2, no B.M., plain and simple there is no poop!!! And around here, that is reason to parrrrrtaaayyy!
At seven years old, Camryn is completely potty trained for all practical purposes. If you had asked me last year if we would ever see this day, I wouldn't have hesitated to sigh " I really don't think so." She had the pee-pee part down, for the most part,but the pooping part...not so much. It was nothing for me to throw away five to six pairs of panties away a week because she had pooped in them and you couldn't pay me enough money to stand around and scrub poop out of tiny panties, you just couldn't. So I'd make a trip to Target about twice a month to pick up another bag of brightly colored underwear knowing full well they would be in the trash within a week. But, that's how we roll around here. And you know, as awful as it was to clean up a seven year old un cooperative child who has pooped in their pants, it was nowhere near as bad as changing the pullup of a seven year old child who has not only filled it with pee during the night, but also poop.  And not only was it disgusting, it was nearly impossible to get her clean because we had to change her like you change a baby and she refused to open her legs. She is extremely strong and she can hold those legs together like no child I've ever seen and if that isn't bad enough she also kicks, which now makes it not only totally gross, but dangerous as well. I used to be able to do it relatively easily, all things considered, by laying her on the floor, grabbing her ankles with one hand, lifting her legs up and cleaning her with my free hand. But as she has gotten bigger, so have her ankles and I can no longer get both of them in one hand, which adds a new degree of difficulty. And this was the way we would start almost every morning since we have had children, so for nine years now. Mason and Natalie, like most kids do, eventually learned to use the potty and by age three, were completely independent when it came to toileting. But Cams was a different story. Not only was she delayed for obvious reasons, she also does not have the freedom of using the bathroom in the middle of the night as her sisters do, because for safety reasons, she has a babygate at her door keeping her in her room and unable to get to the toilet if needed. And putting a little potty in her room is not an option because one of Camryns favorite things to do, which is common for children with Autsim, is to pour liquids out of containers, and I think you can see where I'm going with this. So, she has to wear a pullup at night, and if she has to pee or poop, she just goes in her pullup and we change her in the morning. And to make things even more interesting, Cams, like many Autistic children, has some gastrointestinal issues which make her have really loose bowels sometimes, so basically it's just a huge mess and God forbid you don't get to her within minutes of it happening because it's nothing for her to stick her hand in it, do a little tribal painting on herself with it, and then it's on the walls and the gate and the bed and ohhhhh, it's DISGUSTING!!! And then we strip her down, the bed down, put her in the bath, clean her, scrub down the room, wash the sheets, clean her fingernails because, oh yeah, it's under the fingernails and then hose ourselves down. You know, just a typical American morning right? lol And this was a regular happening around here right up until about eight months ago. Thank God we have not had an episode like that in months and if I have to go the rest of my life without scraping poop out from underneath little nails, that will be just fine with me! Now let me just stop here and say I apologize if you find this offensive or disgusting, but this is the reality of our life. And anyone who has kids knows that you may start out referring to bathroom happenings as "voiding" and "bowel movements" but by kid number three come on, it's pee and poop, plain and simple! So anyway, today is a day of celebration and hopefully this pattern will continue. Camryn is still not able to wipe herself when she uses the bathroom, which means Brad and I as well as her teachers will have to continue to do that and while not my favorite thing to do I can handle it. And although I know we are not out of the woods yet, I am really hoping we are coming to the end of changing poopy diapers. I mean good God it's been nine years people, nine years!!! So today, when you sit down to your dinner of corned beef, boiled potatoes and green beer, think not only of St.Patrick and whatever it was that he did to get a holiday named after him, but also remember why I am celebrating. On second thought, maybe you should wait unitl after dinner! lol ;)

"More Michael Bluble please"

So, anybody who knows me knows I like Michael Buble. Okay, maybe that is an understatement. I really like Michael Buble. Okay, I am in love with him and God forbid if my marriage ever broke up and I was single and Michael Buble asked me to marry him, I would totally say yes, no I would scream YES!!!, but of course this is all hypothetical! lol  Anyway, what's so funny is that Camryn is really the one who got me hooked on him! I started listening to him about 5 years ago, and I liked his voice and of course I thought he was adorable, but I only played his CD now and then. Camryn was not quite 3 at the time and really not verbal at all, but even at that young age she loved music. She, like many Autistic children as well as kids in general, responded incredibly well to it, and me being a huge music lover, I have some sort of tunes on all the time. I like all kinds, from Phil Collins, George Michael and Lionel Richie, to Pink, Aerosmith, Bon Jovi and everything in between. I do however draw the line at polka! And because we spend alot of time in the car, music is playing in my kids ears constantly. I knew Camryn was listening but I never realized how much she was listening until early one morning. She was 4 and I was on my way to her room to get her up for school. Not quite to her hallway, I heard her making noises. As I got closer, I realized she was singing! I had never heard her sing, so I tiptoed as close to her door as possible without being noticed, to hear  her better. As I stood there listening, I heard her sing "Tell me cuando, cuando, cuando" which is a song on one of my Michael Buble CD's. I could not believe it! I had no idea that my little girl had taken this song in and was now laying in her dark room singing it. Tears filled my eyes. I opened her door and she stopped. "Cam, were you singing?" I asked. She said nothing, which was her usual repsonse to questions.I tried again,"Cam were you singing Michael Buble?" Again, nothing. That little booger! "I heard you! You were singing!" Then I started the song..."Tell me when will you be mine..." I stopped and waited to see if she would finish the line....and she did!!!!! "Tell me cuando, cuando, cuando",it was almost a whisper, but she did it! I could not believe it! I tried another of his songs. "Another summer day..." To which she  whispered back "Has come and gone away in Paris or Rome". OMG!! She knows them! I went through all of his songs."Cause you are not alone, and I am here with you...." and Cam finished "we'll get lost togther". "Yes Cam, yes!! You got it!!" At this point my eyes are filled with tears, and we are sitting on her bed, 5:30 in the morning, the rest of the house still asleep and me and my little girl are having a "conversation" for the very first time. I use the term conversation loosely, but for the first time, I was getting back an appropriate response, she was answering my "question". We covered them all from "Save the Last Dance for Me" to "Me and Mrs. Jones" Not all her words were clear, but I knew what she was saying and the point was, she knew them, she knew them all and before that morning I had totally underestimated my daughter. I decided to see if she knew other artists, so I tried singing Kenny Chesney, whose CD I often played. Nothing. I tried Miranda Lambert. Nothing. Bon Jovi, Pink, Maroon 5. Nothing, nothing, and nothing. It was only Michael Bubles music that she was reacting to. I had no idea why, but I didn't care. This man got through to my daughter when no one else could and for that I loved him no matter how smooth his voice or sexy his smile. From that day on I played his CD"s constantly and when I tried to turn them off Camryn would say "Michael Bluble "putting her hands together signing the word more.WOW! When we were driving and she started to have a meltdown, no matter how bad it got, kicking, screaming, head banging, biting herself,all I had to do was put on Michael and she immediately stopped, becoming silent and lost in the music. And to this day, it is his music and only his music, that can bring her out of a meltdown. Now, 3 years later, she refers to all music as "Michael Buble" (She finally got his name right). At school she would constantly say "I like Michael Buble" " I need Michael Buble please". She said it so much that her teacher went out and bought his CD so Camryn could listen to it at listening center! I have no idea what it is about him that clicks with Cam, but whatever it is, I am so thankful. And now, because he bring out parts of my daughter I didn't know were there, and he's so very easy on the eyes and ears, I am a huge fan! I have been to 2 of his concerts and he is an amazing performer! I am going to his concert in Tampa tomorrow night with my mom and although I am super excited, I really wish I could bring Camryn. Although she has no concept of him as a famous person, or person at all, to see her face when the band starts up and he sings her favorite songs would be priceless. Unfortunately, the same reason that makes her love for his music so special is the same reason she will not be able to join me. Although I know she would totally flip out in joy, she would also flip out in confusion and frustration and I cannot risk that as I would not want to ruin everybody elses time. So instead I will do what I have done the last two times. I will tuck her picture in my purse and when he starts to sing , I will close my eyes and remember that morning we sang together in the dark, and I will smile.

My name is Eve. I am 34, married and mother of 3 daughters. Mason,9, is incredibly creative, an artist, funny, generous and total drama queen. Natalie,3, is the girly girl I have always wanted yet can kick a ball with the best of them, so sweet and totally loveable. Camryn,7, is curious, affectionate, hilarious, and quite often a real challenge, as Camryn is also Autistic.
The day we were told our daughter had autism was the day my rose colored glasses cracked and I threw them away. My "perfect" life was no longer and I had a pity party for myself that made Mardi Gras look lame. Having worked with special needs children before I had married, I knew all about Autism, yet really paid it no mind, because, that was other people's issue, not mine.
When Mason was born, she was all I could have hoped for and more. A bright, social baby, everyone noticed her wherever we went. As a new mother, I loved the attention. She was ahead of almost every milestone and at fifteen months of age, when I discovered I was pregnant again, I could not wait for the repeat performance.
Little did I know, that second time around would be nothing like the first.
When Camryn was born, she was 6lbs.8 oz., she scored well on APGAR and all appeared fine. She did all the things newborns do....cry, sleep, eat, poop, repeat. As a young mother with a not quite two year old and a new baby, I was exhausted and overwhelmed, but managing. As the months went by I paid no mind to Camryns lack of head control. She was still very young and her head seemed kind of big for her still, so I just chalked it up to that. My best friend Anna, who is like a mother to my kids, took notice of Camryns neck and suggested I ask the doctor about it. Next day I had a diagnosis of Torticollis. I had never heard of it either. Basically it's a tight sternocleido-mastoid muscle (try saying that fast) which causes the head to tilt to one side and can cause that side of the face to appear more flat than the other, but with physical therapy can usually be completely cured. Whew!! No biggie. Three times a week we visited All Childrens Hospital for 45 minutes of physical therapy. It turned out Camryn had a pretty severe case and ended up having to wear a "Tot collar" which is kind of like a clear tubing "choker" that holds the head up and is to be worn two hours a day. Camryn hated it and I hated making her wear it, but when I looked around the hospital at all the other things that could be wrong with my child, I thanked God for her health and fastened her collar. I remember telling the therapist that I really hoped we could get her face evened out because I didn't want her to be 5 years old, looking in the mirror and thinking she was different than the other kids. Little did I know that it wouldn't matter how she looked.
As the months went by, I noticed that Camryn wasn't reaching her milestones as she should. At 5 months she still wasn't rolling over. At 8 months no signs of crawling or sitting up. She also did not want to be held close and would arch her back at the first sign of any cuddling, something I knew from my earlier days was a huge red flag. I took these concerns to her pediatrican as well as her therapist who both relentlessly assured me it was completely normal for a child with torticollis to be delayed in meeting physical developmental milestones and that in time she would catch up. And the arching? Probably because everybody was stretching her neck and messing with her and she just didn't want to be touched. Okayyyyy. Still young and naieve I went along, but a mother knows and my gut would not stop twisting. I nagged her pediatrician for referrals to specialists " just to be sure" and he sent me every time, but I think it was just to shut me up. With each vist, whether it was the orthopaedic surgeon, the genetic specialist, or the neurologist, it was agreed that something wasn't right, but they all had their own theories and tests and at the end of the day, none of them had an answer.
Finally at 15 months, we were referred for an evaluation by Early Intervention. After more than a year of me telling doctors, therapists, specialists that something was wrong, there it was on a piece of paper, ink still wet from the printer.....Severe Developmental Delay in ALL areas. At 15 months of age, Camryn was functioning at a 5 month level at best. Although I knew it in my mind, print always makes it worse. I scooped up Camryn, who was still not walking, took the paper and sat in my car and cried. I looked back at Camryn, completely oblivious, and my heart ached.
A home teacher came out to the house twice a week to work with Cam. She sang her songs and read her books and truth be told, basically just gave me a break for a half hour. Cam wasn't progressing and two months later, at 18 months old, she started attending a center for developmentally disabled children 5 days a week. The first day I sobbed uncontrollably. Not so much for leaving her at a school for the first time, but for the reality that I had a child at this school. Not only was it in my face and on a paper, now it was official. My baby was "different" and here she was at this school for "different" children. I know it sounds so ugly, but that's where I was at that point in my life and I could do no more than cry all the way to the parking lot and then all the way home, grieving the loss of innocence.
It would be another year of living under the very large umbrella known as "Developmental Delay" before a new neurologist moved us to a slightly smaller umbrella known as PDD (Pervasive Developmental Disorder). And 6 months after that, our permanent location under umbrella number 3, Autism. The word rang in my ears, pounded in my head and just about stopped my heart. And after he delivered that news, the neurologist proceeded with " her future looks grim" and as if I were in a canyon the phrase echoed through my head "future looks grim, future looks grim, future looks grim..." Obviously this guy was not going to take home "Sugar Coater of the Year", which I can appreciate, but DAMN! A glimmer of hope would be nice.
I am happy to say that on a return visit three years later, the doctor changed his prognosis and said that Camryn had come a lot further than he expected, although he poured salt in my very open wound of " You know she will never be able to live on her own". Yeah, I know.
So here we are, 7 years, another child and even a television show later (we were featured on Discovery Health in a series titled "Truth Be Told I Have a Child With Special Needs" in December of 2009). Life is....well..interesting. As with everything, there is good and bad, challenges and triumphs, ours are just a little different than the average family's. Hope you enjoy the ride!!