Good Clean Fun??

Well,they should be here any minute now. Who you say? Well, it could be several people. Let's see, could be the police responding to neighbors reports of blood curdling screams coming from our home. Or it could be child protective services,investigating a slew of anonymous tips from callers alarmed by the excessive crying and screaming, along with spotting Camryn standing in front of her window banging her head against it. Or, it could be the men in white coats finally coming for me (I'm the one who called this time) waiting with my freshly starched jacket,ready to ride me off into the sunset to my padded palace.
Camryn's been home from school for about thirty minutes and already the horror has begun. The reason for all of this mayhem? I have to shower. Yep, I have to take a shower so I can go to a meeting to help raise money for Camryn's summer camp. And while I am in the shower, because she will potentially walk out of the front door and into the street or take a steak knife out of the drawer to open an orange, Camryn must stay in her room and "play" until I am out. I know, terrible right? Well, according to Camryn it is the most torturous, inhumane treatment and she intends to tell the world. And it is never any surprise to me. I know what's coming before I grab her hand and walk her towards her room. And she know's what's coming as well, which is why she immediately starts whining and fussing and desperately trying to get out of my grip. "Come on Cam, go play in your room for a minute while Mommy takes a shower! You can look at your books or go in your tent and play with your piano. Then when Mommy is all finished you can come out." I say it as sweetly as possible with a big grin on my face, but she is not buying it....at all. I have no choice but to drag her in against her will, locking the babygate behind her. It may sound mean, but it's not. In the room right next door Natalie was sitting on her bed feeding plastic food to her baby-doll, content as could be. And down in the family room, Mason sat doing her homework,less than thrilled, but doing it. I have to shower and Camryn cannot roam the house freely unsupervised, so she is just going to have be inconvenienced and that's the way it is.
And it's not like she doesn't have things to do in her room. While it is not like most children's abodes, we have tried to make it as "Cam-friendly" as possible. She doesn't "play" with "toys" but she does like to look at books and press buttons on baby toys to hear the music. We also put a pink hippo tent for her to crawl into and she has several puzzles to do. Most of the time the things that aren't fastened down stay within the confines of her room. But when she is ticked, you better look out because that is when harmless looking objects such as a plastic keyboard or a large colorful book become flying missiles or "Weapons of Mass Destruction" as we like to call  them. Camryn hurls them one at a time over her gate and God be with whoever is in their path. But with Natalie occupied in her room and Mason across the house, I knew no one would be harmed so if she felt the need to practice her throw then so be it. I turned the water on, knowing I would need to make it quick and then realized I should probably let Camryn go potty before I got in the shower because Camryn is famous for waiting until you are all sud's up behind the curtain to let you know she has to poop. I'm on to her though, so I sat her on the toilet to avoid any unpleasant interruptions. She squeezed out a tiny little turd and although my gut told me not so fast, I wiped her, flushed and put her back in her room.
So I get in the shower and what should be a somewhat enjoyable event is totally de-pleasantfied by Camryn's constant screaming. She is so loud that I feel certain the neighbors think I am beating her. But I know she is fine and if someone calls the authorities, I need to be clean before they take me away, so I continue on with my shower. Next she begins "growling" and biting herself. I know this because she is shouting "Did you bite yourself honey!!!!" Meanwhile there I am,scrubbing furiously beneath the spray of water, not enough Calgon in the world! My hair is all lathered up in a thick white foam and my face is covered with creamy exfoliant and then I hear...."Do you need the wipes honey?" O-M-G!!!!! I knew it, I just knew it!!!! Again I heard "Wipes...I need some wipes". I was furious! All I want is to take a f***ing shower!!! Is it too much to ask? Really??!
"Okay Camryn,I'm coming" I yell through the curtain, which only makes her wail louder. I tried to at least rinse my face off, but I knew the longer I waited, the more I risked the mess in her pants making it's way to the floor. Oh f*** it! I scrambled out of the shower, my hair looking like peaks of stiff merengue, grabbed the wipes and led Camryn into the bathroom. Sure enough, there was an orange sized ball of poop in her panties. Uuugghhh! I was dripping all over the floor and she was fidgeting with her pants, trying to get them down while I tried to help her out of them without making further mess. I got her cleaned up, tossed ANOTHER pair of panties in the trash and put her back in her room, where she got right back in her rhythm,screaming and wailing. The girl doesn't miss a beat. I stomped back to the shower, cursing the air. I just wanna take a shower for God's sake!!!!!! I scrubbed my hair like a mad woman and finished up in record time. When I got out, Cams was still at her gate, her face bright red from screaming and her forearm wet and full of teeth marks. And it wasn't going to get any better because before I let her out I needed to get dressed. I walked past her, gave her a kiss and said "Mommy needs to get dressed and then you can come out. Go play!" Words all said in vain. Of course she was ticked that I walked past her to my room and she began her tantrum again. The screams were so loud and grainy that they confirmed my theory that children once thought to be possessed by the devil and needed an exorcism were probably not possessed by demons at all, but rather by Autism. I got dressed as quickly as possible which isn't easy when you haven't had time to properly dry off and your skin is sticking to your clothes. When I finally opened her gate, Cams looked like she had been in a battle, which she had, with herself. Her arms were all bitten up, her cheeks were soaked and and her lip was quivering. Mind you, while all this was going on, my other two kids were just doing their thing, getting more and more used to these outbursts as the years go by. Mason was frustrated of course, but I was impressed with how she held it together. Camryn ran to the kitchen and grabbed a can of peas, the can opener and a sandwich bag and shoved them in my face, chanting "You can have some peas honey". I opened the can, poured them in the bag and sent her down to watch T.V. while I put on my makeup. Nat wandered into my room wearing Camryns backpack. "Look, I'm Camryn. I'm wearing her backpack and I'm even biting my own skin!" she exclaimed. "Don't bite your skin!" I told her. "But Mama, I'm being Camryn!" I wasn't sure should if I laugh at that or sob uncontrollably. I chose laughter, it was pretty funny! With Camryn calmed down, we all piled into the car to head up to the fundraising meeting. I am passionate about this camp for obvious reasons, but after our afternoon I entered that meeting on fire. I would raise money so this camp could continue come hell or high water, both of which I have been through  in the past eight years. The meeting was a success and when we got home, the kids went to bed and it was about 9:30 before I sat down on the couch to breathe. I went over the days events in my head and made myself laugh that the only reason I was in the shower in the first place was to go a meeting so Camryn could go to camp in the summer and I could get a break from outbursts just like that. Ironic.
Well I am happy to say that so far, nobody's come by to put me in cuffs or strap me to a gurney, although the idea of being picked up and delivered to my own private room does sound appealing. I really could use a vacation. But, there's always  tomorrow or the next day, the day after that and so on, as this screaming stuff occurs on a daily basis and I don't see it going away anytime soon. It's a part of our life, it's a part of Camryn...it's a part of raising autism.

Note: If you or somebody you know would like to make a donation of ANY amount to Camp COAST, please let me know and I will gladly let you know the procedure. This camp truly changes our lives for seven weeks in the summer. The kids go horseback riding, sailing, bowling, swimming, etc and experience things they normally never would. It is AMAZING!! And us parents, for eight hours a day, well....do I really even need to explain? The camp runs solely on the kindness and generosity of others, and as of right now has not met it's goal for next year. So again, if you or anybody you know would like to donate it would be so,so appreciated! Thanks!  :)

Happy Birthday Camryn!!!

Tomorrow afternoon at 1:15 will mark the eighth anniversary of Camryn's birth also known as her birthday. While some days it seems more like eighty years have passed, others I find it so hard to believe that it has been that long. While the birth of a new baby always changes your life no matter who you are, the birth of Camryn changed mine in ways I never, ever imagined. I know I've told the story before about having Mason and then Camryn, but because it's her birthday tomorrow I am going to tell it again in more detail.
Mason was fifteen months old when I walked into the bathroom and saw that familiar second blue line. Getting pregnant has never been an issue for me and I don't take that for granted because without going into detail, I know the hardships and sorrows of not being able to conceive from someone very close to me. Mason was a dream of a baby. Not in the beginning, there was alot of relux, I'm talking alot, as in projectile. There was gas and crying and the whole first month of life issues many babies have. Once we got her straightened out with her formula, she was an incredibly easy baby to care for. She was happpy, alert, slept like, well like a baby and met her milestones like a pro. I enjoyed her so much and couldn't wait to have another baby and do it all again. When I discovered I was pregnant with Camryn,Brad and I were thrilled! I had hoped we might have a boy this time, but when we found out we were having another girl, I immediately imagined my daughters having tea parties and fashion shows and all the things sisters do together and I could not wait for the years to come.
While pregnant with Mason I had horrible morning sickness and why it is called morning sickness I will never know because well after lunch time I was still sick as a dog. Other than that it was an uneventful nine months until the last two weeks when my blood pressure started to get a little higher than my midwife liked and one week before her due date I was induced and delivered 5 pounds and 14 ounces of pink perfection.
Now my pregancy with Cams was a bit different. Because I had such a good experience with the midwife I used with Mason, we decided to use her with this pregnancy as well. She had been around for years and had a great reputation in the area. When I showed up for my first appointment I was greeted by her as well as an intern she was training. She assured me that while the intern would be in the room at all my appointments and sometimes do the exams, she would be there watching and was still the one making the decisions regarding my pregnancy. I really thought nothing of it.
I still had the lovely morning sickness and spent the first four months nauseous almost all the time. I also had elevated blood sugar and had to do the dreaded three hour glucose test where you have to drink what seems like a gallon of this God awful orange syrup every hour for three hours and then get your blood taken to see if you have gestational diabetes. It was dreadful and I prayed and prayed that my levels would be fine because one of the perks of pregnancy is being able to indulge your sweet tooth without the worry your pant's won't button. But alas, when the midwife called me back I knew from the look on her face I had failed and left the office with a script to see a nutritionist who would help me learn how to eat the rest of my pregnancy. I mourned the loss of my chocolate loves.
I got the diet down, though it wasn't easy. Surprisingly when you are diabetic, you have to be extremely conscious of how often you are eating and the amount of carbs, proteins, starches, etc. you are consuming to maintain a safe blood sugar level. I remember thinking there was no way I could eat as many times as they wanted me to,as I was scheduled to eat every two to three hours and I had certain things I could have at certain times. No fruit before noon, proteins before carbs and when eating grapes, only fifteen per serving. I have a vivid memory of being at my mother-in-laws at Christmas and sitting at the kitchen table late one night counting out grapes for my snack. It was a pain, but I actually ended up losing weight during my pregnancy because of the way my body was processing my new diet and how my metabolism had responded. Of course I loved that part! Other than that, I had no other complications until the last two weeks, when just like with Mason my blood pressure spiked. I was scheduled for induction a week before my estimated delivery date and before Brad and I left that morning to go have our second daughter we kissed Mason ,who was now just shy of two and promised to bring home her baby sister that she had been so excited to meet.
At the hospital I slipped into my gown, put on my socks and settled in to the bed. I hadn't even been there twenty minutes when I turned my head for some reason and pinched a nerve on the left side of my neck! I could not believe it! It was the kind of pinch where it radiates all down the side of your neck and into your shoulder and upper arm. And moving your head? Forget about it! I was going to be delivering a baby in the next few hours with a pinched neck nerve. I was so not happy. Just then my midwife walked in along with her intern. She asked how I was doing, spoke with the nurses and then proceeded to tell me that with her assistance,the intern would be handling the delivery! Now mind you, this was 2003 B.C. (before Camryn) and I was alot less outspoken at that time. I didn't like to go against the grain or ruffle feathers and so although I really wished my midwife was the one who would be delivering me, I just said "O.K." and signed a paper. I really was caught off guard.
Like with Mason, my mom, my best friend Anna, my sister-in-law Jackie and of course Brad were in the delivery room. While a bag of pitocin dripped into my I.V., I laughed and joked with everyone while Brad tried to work the kink out of my neck with no success. About an hour after my induction began, the anesthesiologist came in to administer my epidural,or as I like to call it "wonder drug". It didn't take long for my legs to get completely numb and then my midsection. I was wondering if he could shoot just a tad of that stuff into my neck, but it didn't happen. It only took about two hours for me to fully dialate and when the intern told me the baby was in the birth canal and I could start pushing I began to cry. I didn't even know why, but I was scared and I was so tired and let's face it, giving birth is not easy! She told me I could rest for a little bit if I wanted to before I began pushing, so for thirty minutes I laid there trying to relax myself and gear up for the job of a lifetime. I remember thinking to myself "Is it really okay to let the baby sit in the birth canal like that? Isn't she under pressure in there? Is she getting enough oxygen?" I thought for sure I had heard a story somewhere that babies left in the birth canal too long can suffer long term effects. I convinced myself that I had made that up and that this woman was a medical student who knew what she was doing, Why else would my highly qualified midwife let her handle this delivery if she weren't capable? Just then my brother entered the room and it couldn't have been at a better time because I was in serious need of comic relief, which is his specialty. He had bought a Snickers at the vending machine and was dangling it at the foot of the bed as inspiration to push. "As soon as you have this baby, this Snickers is yours." The midwife came in as he was dangling it and overheard my mom tell him I couldn't eat that because of the gestational diabetes to which the midwife responded "She doesn't have gestational diabetes!" What? WHAT???? "What do you mean? What about the glucose test and the diet and pricking my finger every f-ing day to test my sugar???? Wasn't that because I had gestational diabetes?" I was so confused. "Oh no" she replied, "You were just in danger of developing it so I decided to have you continue on as if you did." Oh I was pissed!! I wished I had those frickin' fifteen grapes I had counted out for the past 120 days so I could throw them at her one by one.
 Just then the intern came back in the room and asked if I was ready to start. I nodded and with several good pushes and grunts, Camryn Faith Walker appeared to the world. With her head out, the intern began twisting and tugging to get the rest of her out. I was in a labor daze, but I distinctly remember hearing the midwife say sternly "Do not turn the babys head like that!!" She eventually got Camryn out, we heard a cry, I started crying, Brad was crying, my mom was crying, Anna, Jackie, everybody was crying. The nurse took the baby to the warming table and began suctioning her and doing all the post-birth procedures. Now if you've ever given birth you know after the baby is out, you still have to push out the placenta. That's what I was doing while everyone ooohed and aaahed over Camryn. I was still pretty numb, though the epidural was beginning to wear off so imagine my dismay when the intern informed me there had been quite a bit of tearing "down there" and I would need an episiotomy. Not only would I need an episiotomy,but she would be performing the episiotomy, her first one might I add, while my midwife instructed her how to do it.  Mmmm, hmmmm, yep, you heard me right. There was going to be a sewing class on my vagina while my entire family was present and my epidural continued to fade. I just was speechless, I mean really, what do you say at a time like that? Now mind you, at this time my neck is still stiff as a board, but I was so distratcted by the obvious that I didn't notice. Once I was stitched up and Camryn was diapered and swaddled they placed her in the crook of my left arm and immediately my neck began to pain. I switched her to my right arm but that was the arm my I.V. was in so it wasn't easy to hold her like that. The nurse brought me some Tylenol hoping it might help. I moved into a recovery room and Brad and I began bonding with our youngest daughter. She was much different looking than Mason when she was born. Mason had huge eyes that were wide open and bright. She was bald and so,so tiny. Camryn however had a mess of brown hair and her eyes not nearly as big or alert. She weighed in at 6lbs. 8.oz.,ten ounces bigger than her older sister. It was love at first sight though for Brad and I and we were so happy that we were now Mommy and Daddy to two little girls. I wanted to hold Camryn, but my neck and arm were hurting so bad. Brad was smitten and he took over, changing her diapers, feeding her, etc. I tried to nurse her, but she wouldn't latch on. We had the lactation specialist come in to help, but for some reason it wasn't working so we decided to suplement with formula to keep her blood sugar from crashing. So while I kept trying to stretch my neck so I could hold my newborn daughter, Brad would cradle her or let her sleep in the bassinet in the room. The nurse came in every hour to check on us and the baby,then jot down some notes on my chart at the end of the bed. After a few hours of this I became curious about what exactly she was writing so I snuck a peek and was shocked to see "Mother does not seem to be bonding with baby. Either Dad is holing baby or baby is in bassinet. Mom is never holding baby." I was mortified! These people thought I didn't want to hold my daughter! I made sure to clear that up with the nurse as soon as she came back in. After a day and a half in recovery we were able to go home with our newest member of the family in tow. Mason was so excited to have a baby in the house and she adjusted amazingly well. Camryn had reflux issues like Mace but nowhere near as bad. She wasn't quite the sleeper Mason was and seemed congested alot. But she had a perfect APGAR and just the right amount of digits, so I didn't have any concerns. It wasn't until that fateful day four months later when Anna voiced her concern for Camryn's tilted head that I began to notice that Camryn was not like Mason in ways more than just different hair and eyes. And of course, you all know the story from there. I look back on the irony of it all that as I was delivering her the left side of my neck was so tight and painful, only to discover that she herself had a tight muscle on the left side of her neck known as Torticollis, causing her head to hang to one side and her face to develop assymetry. I couldn't help but think back to the midwife's comment about how the intern had turned Camryns head at delivery. Did she do this to my baby? For the longest time I felt she had. I even sought legal advice so angry that this woman was allowed to perform a delivery when she clearly wasn't capable. Later on when it became obvious that Camryn's issues went well beyond her neck, I had so much anger for mysef for not objecting to an intern delivering Camryn. I just knew that was why she wasn't speaking or rolling over. Surely the reason she arched her back and started at us with blank eyes was due to her lengthy stay in the birth canal. I was so mad!!! It took me several years to stop talking about the delivery whenever we saw a doctor. It was always the first thing I mentioned at every new specialist appointment. And every time the doctor woud listen and then dismiss that it could have anything to do with my daughter's delay. I always assumed they were just sticking with their medical community and continued to believe that my daughter was "broken" because of somebody's malpractice. It took me a long time to accept that this was the way my daughter was, there was no cure and there was nobody to blame.
So here we are, eight years later and wow, so much has changed. Me, my husband, our marriage, our attitudes, our outlooks, everything. Everything has changed. I am a stronger, better woman. My husband is more patient and accepting, knowing he can't "fix" this and that's okay. Our marriage has been tested by the pure hell of Autism and I'm glad to say is coming out stronger than ever. I approach the world with a new attitude and outlook and try my very hardest to take nothing for granted as I once so carelessly did. While raising this child we call Camryn Faith, we still wonder why, why us? When there's screaming and tantrums and aggression I cry and I bargain with God a hundred different things I'll do if he makes this go away. And when I see Camryn tweak so much she can hardly stay still because she is so excited to see me after school I tell God never mind, why would I ever want this to go away?
So today, one day before we celebrate the birth of Camryn, I say this to God - Thank you for blessing me with this child. Thank you for showing me through Camryn's differences that beauty exists in all forms. Thank you for showing me with her frustrations and tantrums that just because she cannot speak like the rest doesn't mean she has nothing to say, a lesson I pass on every chance I get. Thank you for giving my other daughters the role of Camryn's sister as I know they will grow into beautiful, amazing women because of it. Thank you for helping me see to never take even the smallest things for granted and to live life to the fullest despite the challenges it presents. Thank you for showing me through Camryn's laughter that life is beautiful. And thank you for helping me to see that just because my life is not at all how I planned it to be, it is exactly as you had. And when times are tough, the reasons escape us and darkness is all we can see, the light will shine again as long as we hold on, as long as we believe, as long as we have faith. And I do...her name is Camryn.
Happy Birthday Camryn Faith....I love you!

American Autism Foundation

As I write this I am listening to Little Richard screech out "Rubber Ducky" as Cams spins around with her eyes closed, throwing in a clap or snap every now and then. Oh wow, now it's Bob Dylan singing "This Old Man" and Cams is moving her fingers around in reference to the numbers in the song and doing the "rolling home" motion. These songs are bad, I mean really bad, but they are keeping Camryn quiet and busy on this very wet and rainy day so I will keep 'em coming. It's just the two of us today. Brad is at work, Mason and Nat spent the night with my mom on account of today being MLK day so no school.So it's just me and Cam's.
Ok...I am going to apologize in advance for the pure and utter grossness (is that evean a word?) of what I am about to write but one of the things I do is keep it real and this is about as real as it gets. So as I was just typing the above text Cam managed to disappear like a vapor. One minute she was dancing, the next she was gone. I jumped up off the couch to find her and saw the bathroom light on. Oh no. I turned the corner and found her pulling some wipes out of the container talking about poop. I felt her bottom and sure enough there was a big ball of poo in her panties. She started pulling her pajama bottoms down and stepping out of her underwear and thank God the poop was not runny. Just a solid glob about the size of an orange. I ripped her panties from her hand and shook the poop into the toilet. It landed with a thud on the side of the bowl. I flushed the toilet and nothing. I flushed it again and the damn thing still stuck to the bowl like a suckerfish on a glass wall. You have got to be kidding me!!!! Meanwhile Cams is screaming "She needs a big bath!! She needs a big bath!!" So I put her in the tub and try to figure out a solution to this sticky situation. I spied the cotton swabs sticking out of the container on the sink. I could not believe I was actually doing it as I was, but I grabbed a swab, reached into the toilet and dislodged the poo, all the while in complete disgust and nausea. Cams watched from the bath as she turned the water to scaldin hot and let it run down on her legs. Oh my goodness, how did I get here???
I got her bathed, dried and dressed. She has become obsessed with wearing my bra. She loves things that hug her body, so I guess that's why she has developed such an affection for wearing a bra. Of course it's way too big for her and looks ridiculous, but rather than hear her scream about wearing a bra, I gladly slip it over her arms and fasten it on the tighest hooks. Oh and she wears it on the outside of her clothes. You know Cams is a rule-breaker. I put her in her room to play for a bit so I can write this and she is screaming from behind her gate "I need help!! Mommy!!!! Mama!!! Aaaaaggggghhhh!!!!!" Despite all her crying and begging I will not open her gate. She needs to learn how to "play" by herself and we have learned that if we ignore her cries after about ten minutes she will give up and find something in her room to amuse herself.
So I am going to do this as best I can and hope to God that she will quiet down soon. Like I said Mace and Nat are at my mom's. They spent the night while Cams stayed home. Brad and I had a sitter come watch Camryn so we could go to a movie. Getting in dinner and a movie is not always easy, so with two of the girls gone we felt better about our sitter having only Camryn and with no time limit we decided to throw caution to the wind and do a double feature. Actually, we saw "The Fighter", which was very good, went across the lot to Chili's, grabbed a quick dinner and then went back to the theater and saw "Black Swan", which was......interesting....very, very interesting. In fact, I could do a whole blog just analyzing that movie. I enjoyed it, but Brad was casting me dirty looks about every thirty seconds. It was definitely not a feel good film, nor a lighthearted one. I guess you could say it was a dark, artsy thriller of sorts. And sexual. Very sexual, definitely not for the easily offended. Anyway, my point is we got out and it was wonderful!!! And that leads me to the focus of this entry. Last week some of you know that Mason and I were guests on a web t.v. show put on by the American Autism Foundation. The founder, Michael Tucson and his co-host Rebecca Gononwich go before the cameras every week and discuss topics relevant to Autism, it's struggles, possible treatments, people's personal experiences, etc. We were on to talk about siblings of Autistic children and how having a sibling on the spectrum affects them. Mason spoke about the hardships and joys of having an Autistic sister and she did a great job! I only recently met Michael Tucson and had never heard of the AAF before. He and his wife Beth started the foundation after a dear friend of theirs discovered her son was Autistic. Not having an Autistic child themselves, but seeing their friend deal with the diagnosis and struggles that come along with it, they felt the need to do something to help and so the foundation was formed, with hopes of being able to help not only their friend, but the thousands of others like her. There are many organizations out there with Autism as their focus, but what I like about this foundation in particular is that one of their primary goals is to help families living with Autism now, as in right now, with whatever needs they are having at this time. Their main objective is not to raise money to find a cure, but to give families of the spectrum help and hope for the future. As a mother of an autistic child as well as her sisters and the spouse of a father of an autistic child I know all too well the needs of these families and it has always been my desire in life to help families like mine. But I am only one person and though I have tried in the past to start up a non-profit, it has never come to fruition. So meeting Mr. Tucson and learning about his foundation was such a pleasant surprise because his visions are very similar to mine. His hope is to be able to provide families of autism services such as marriage counseling due to the statistics that over 80% of parents of disabled children divorce. He wants to provide activities for the siblings of Autistic kids, focusing on them and only them,something they all need and deserve. He also wants to build a learning center for Autistic children where they could receive all kinds of therapies and educational services. And eventually be able to provide "Autism Angels" or people who would provide respite for parents, coming and helping in the home or watching the autistic child while the parents take some much needed time together. These are exactly the things I wanted to do with my own organization but because I have yet to get that going, I want to become involved with the AAF and work with them to provide these things. With our hearts in the right place, the one thing missing is the funds. As with many charities in todays economy, donations are hard to come by with people tightening their purse strings and less apt to give to others when they can harldy provide for themselves. But what alot of people don't understand is that there are ways to donate other than doling out cash. Giving time can be just as valuable as money. Many foundations raise money through fundraisers, but without volunteers helping at these events, they are often unable to do them. Also, donating materials or services such as food, paper goods, talent for events, etc. is priceless, as without these things the events cannot happen. And if money is all people can think of to give but can't due to their finances, even a dollar would help. It is not the amount of money people give but the amount of people giving money. If a hundred people donated a dollar a month, well you can do the math, but my point is, you only need to give a little to help alot. I know this is sounding like a solicitation for money and I guess in a way it is. What I am trying to convey is that no matter where you choose to help in society, it is important to help. If you can't give in monetary form, then maybe lend an hour of volunteer time or go through your pantry and grab a thing or two for a foodbank. There are so many ways to help and so many organizations in need. And most of us are motivated to help a cause close to us and because I am about as close to Autism as I can get without being Autistic myself, of course I support foundations helping those affected by it. I know as Camryns mom that I would LOVE to be able to call a number and have the person on the other end of the line say "I understand and we can help.Someone is on their way to your home right now to help with your daughter. And tomorrow night there is a skating party for your other two daughters so they can meet other kids in their position. And then this weekend you and your husband get four hours to do whatever you want while we watch your children." I can only imagine how that would be. But hopefully one day soon, I won't have to imagine because it will be a reality and our world will get a little bit easier to bear because of the kindness of others.

The American Autism Foundation Inc. is a 501C-3 charitable organization.
Their American Autism Show is broadcast live every Tuesday at 10AM EST and features authors, doctors, self-advocates, therapies and other resources.
Their website is http://www.americanautismfoundation.org/
Email AMERAUTISMFND@aol.com
American Autism Foundation,Inc.
P.O. Box 2285
Tarpon Springs, Florida USA 34689

Keeping an Eye on Autism

Yesterday Camryn had an appointment with a new neurologist. An appointment that has been a pain in the behind to shedule with all the hoops insurance had us jumping through just to get permission to go. We have been to three other neurologists in the past, two that I loved and one not so much. Our most recent one, Dr. Morales in Fort Myers was a wonderful woman who expressed true care and concern for not only Camryn but for me and Brad as well. I never felt rushed in her office, she always took the time to let me talk and when I would break down in tears, which I often did, she would take my hand and tell me she understood. I really liked her. But even living in Port Charlotte, going to Fort Myers was a drive, sometimes taking an hour to get there. So now that we are in St. Petersburg, there was no way I was going to drive over two hours to see a neurologist when we have so many credible ones to pick from in the area. I wanted to go to All Childrens but our lovely insurance didn't agree. I ended up with a pediatric neurology and seizure disorder clinic in Tampa who oddly enough turned out to be the office Camryn's first neurologist referred his patients to when he moved out of state! I really liked him as well and was glad to hear that he was affiliated with this office. Brad and I have been eagerly awaiting this appointment anxious to get someone elses opinion and experience into the mix. With Brad's work schedule I am ususally the one to take the kids to their doctor appointments, as most moms do. Brad has managed to make it to a few of Camryn's neurology visits, but I am always her "Speaker of the House", spouting out her birthweight, APGAR score, and date of her first step without a moments hesitation. And like most Dad's out there, Brad mostly listens, asks a few questions and prays to God the doctor won't ask him if Camryn's birthday is the 21st or 22nd ,although this year I think he finally got it. So Wednesday night I was all pumped up to go and see if this doctor had anything new to say or had any ideas on how to stop the aggressive behavior. I ran through Cams eight year history of doctors, therapies, medications,etc in my head ready to answer whatever questions they threw at me. Then Thursday morning I woke up to a very red and extremely painful left eye. It had been hurting the ngiht before but I wear contacts and it is not uncommon for my eyes to get irritated from them. I usually just take them out overnight and by the next morning my eye is better. But my eye was worse, much worse, in fact it hurt to keep it open, but it also hurt to keep it shut. It was swollen and bloodshot and dripping like a faucet. I could not believe it. Not on Camryn's appointment day! Luckily Brad had taken the day off, so he and I were going to go the appointment together. My plan was to take Mason and Nat to school and then Brad and I would take Cam to the doctor, but halfway to Sawgrass Elementary my eye was in so much pain I thought for sure  somebody had fashioned  a voodoo doll in my resemblance and was sticking a pushpin deep in my retina. I managed to drop both girls off but by the time I got home I knew I had to get to an eye doctor ASAP. Brad and Cam were ready to go when I walked through the door. I looked at Brad and said "I can't go. You're gonna have to do it alone." Brad is a very good Dad and he puts our girls on a pedastal so of course he had no problem taking Camryn by himself. He did have a concern about how he would answer all the questions I normally address and I told him no worries I would text all the info. to him. He and Cams headed out and I got on the phone pronto with an opthamoligst. The office manager told me to come in right away and they would work me in. I got in the car hoping that there would be little traffic and even less sun as my eyes are extrememly sensitive to light and because I rarely wear my glasses I dont' have any prescription sunglasses. Squinting made me want to rip my eyeball out of it's socket it hurt so bad, but despite my numerous prayers for clouds, the sun shone brightly in my face as I drove to the eye doctor cursing like a sailor and really hoping the doctor would give me some drugs.
While I was in the waiting room I began texting Brad Camryn's entire medical history while my eye burned like hell and was soaking my cheek with it's constant tearing. I made sure to include her birthweight, length, list of doctors, dosages of medicines, surgeries she had when she was a toddler, etc. Anything I could think of that may be on the paperwork. I'm texting like a madwoman and my eye is throbbing and tearing and I stopped for a moment to recognize the humor of the situation. I then got a text back from Brad that read.... "Cams bday is jan21 2002?sorry" I laughed out loud in the waiting room! It was 2003, but at least he got the day right! I then got a text that read "Her name is Ry-Ry". Again I laughed out loud. I knew this meant that someone had asked Camryn her name and she answered "Ry-Ry" The girl cracks me up!
The nurse called me back and I had to put my phone away. I hoped he had everything he needed and I really wished I could have been there. I hated not being able to talk to the doctor myself. The opthamologist came in and examined me and turns out there was no voodoo doll, although it might have been less painful, but an ulcer on my eyeball! Isn't that fun? Actually, an ulcer on your eye is extremely serious, as you can lose your sight to one, so I was very alarmed and also very glad I came in. The doctor gave me a very small, very expensive bottle of eyedrops and instructed me to put them in every hour, even at night. Every hour at night?? Oh this was not going to be good! I was then to come back in the morning for him to check the progress. I asked if there was anything I could take for the pain to which he replied "No". Uggghh, I was so hoping for drugs!
I left the office and called Brad. They had been at the neurologists since 9:45 and it was now 11:00 so I assumed they were finished. Nope, still there! Brad asked if I wanted to talk to the doctor, but I felt like that would be undermining him and questioning his ability to handle this on his own so I said no and for him to call me when they left. Meanwhile I was at home with my ulcerated eyeball contemplating just gouging it out stop the pain. I rationalized that would only cause more pain and laid down on the couch in agony.
Twenty minutes later Brad called with the report. First things first the neurologist put Camryn on a new medication for her aggression. I had mixed feelings about it because on the one hand I hate putting her on a drug when she cannot tell me how she is feeling. And knowing that Abilify, which is the medication she will be on, can cause dizziness, nausea, suicidal thoughts, etc I feel absolutely horrible putting that in her system. But on the other hand, I know that nothing else is working to curb her aggressive tendencies. I know that her sisters are continuing to get assaulted on a daily basis as well as her classmates and that she injures herself, banging her head against the wall and biting her hands and feet. That makes me feel horrible as well and when I weigh the pros and cons of it all, the medicine comes out on top, so we will try it. The doctor she saw was not only a pediatric neurologist but also specialized in seizure disorders. Many Autistic children suffer from seizures and several have died as a result. It has been theorized that John Travolta's son may have had a seizure which made him fall and hit his head, ultimatley killing him. And although it had always been kept hush- hush, the Travolta family finally admitted that Jett was in fact autistic. There have also been stories of Autistic children passing in their sleep from a seizure and in some instances the parents were not even aware their child was having them. It has always been a question for Brad and I if Camryn was having seizures. She often stares out in space for about a minute or two which can be what is referred to as a "staring seizure". Her prior neurologist wanted to look into it more and had ordered tests but insurance wouldn't pay because she was no longer in network. This new doctor told Brad that she would like to do an overnight study of Camryn's brainwaves while she is sleeping and that she would need to hospitalize Cam for at least one night, possibly two and have her put under anesthesia to do an EEG as well as some other tests. I was horrifed and ecstatic at the same time. Scared of course at the thought that Camryn could be having seizures. Worried about her going uder any kind of anesthesia and thrilled that this doctor was not just scribbling out another script for meds and pushing us out the door. They were going to do further testing with her and that is what we have always wanted. I asked how she did with the exam and he said she did well. When the doctor asked Brad if Camryn was currently on any medications Camryn shouted out " I need my Risperidone!! I need my Clonidine!!" Nothing like your kid yelling out they need their anti-psychotic! He then said the doctor asked Cam how old she was and Cam's answered "Poo-Poooooshz". This is something she says ALL THE TIME at home. She will say "Poo-Pooooshz, I shaid a Poo-Poooooshz". I don't know where this came from but it is hilarious, which is one thing about Camryn, she will keep you laughing even as she brings you to tears. So that was it, a new medicine and a brain wave study. It was a success and I worried all for nothing. Brad did it! He answered all their questions, he pursued further testing, although he did confess that when the nurse would ask a question he would say "Oh I have that on my blackberry",then try to find my text with the info.When the nurse asked if Camryn had any surgeries, he scanned the texts but wasn't sure how to pronounce "frontillectomy" (having her tongue clipped underneath) so the nurse grabbed his phone and took the information herself! LOL
So last night we gave Cams her first Abilify. I hated giving it to her at night because I would rather she be awake so I could monitor her better, but the doctor said nightime was best. I was on the phone with my mom before I gave it to her and I was telling my mom my concerns about giving at bedtime and my mom pointed out there coudn't have been a better night to start since I would be up every hour anyway with my eyeball! She had a good point. I gave Cam her pill and today she woke up just as she had the morning before. It takes a while for these meds to take effect and she didn't seem woozy or out of it. She took another before school, so I sent a note to her teacher to keep an eye on her.
I went back to the doctor today and was told my eye was looking alot better but I wasn't out of the woods yet, whatever that means. I now have to do the drops every two hours instead of one and I don't have to get up at night to do them, thank God!!! I go back on Wednesday to see how it's healing. So I am on the mend and hopefully so is Cams. Not that she is broken, but wow would I love to see her aggression leave town. I know it won't take away all of it, but any little bit would help. So we will wait and see as we always do. No matter what we will continue to love our daughter and cherish the things that make her her. It is hard to believe she will be turning 8 next week.Time goes by so fast! Seems like just yesterday our little "Ry-Ry" turned "Pooooo-pooooshz". I love that girl!!!!!

Happy Holidays??

Ok I am going to try this again! I spent several hours working on a blog last week, taking breaks out of the day to type a sentence here and a paragraph there, even snuck in a few lines while the kids were home. I pushed the save button but for some reason it didn't work and when I went back later that night to finish it was gone! I was so disgusted that I couldn't bring myself to do it again until today,so one more time I am going to try and recap the very busy, very emotional month of December.....
In my last entry I told about our "Sensitive Santa" visit and touched briefly on Christmas with Autism. But now that the holidays are over and I can actually take a breath, looking back I can see that it is not just Christmas that is challenged, but the entire month of December as there seemed to be something nearly every day that had us dodging curveballs (or should I say snowballs?) and making me wonder if we would even make it to Christmas!
December 2nd we decided to get our Christmas tree. Although it is an ordeal, we always bring Camryn along because she is our child and we are trying to maintain some sort of normalness when it comes to things like that. In years past it has always been either me or Brad entertaining, containing, or restraining Camryn while the other one walks Mason and Nat through the maze of trees in search of the perfect pine. There is screaming, there is sweating and there is even some swearing, but at the end of the trip there is also a full, fragrant, Christmas tree tied to the roof of the car and headed home for adornment.
This year was a little different because we are back in St. Petersburg now, so we had options...you'll see what I mean in a minute. We decided to make a night of it and took the girls to dinner first. After we ate we went to Home Depot to let them pick out some holiday inflatables for the yard. We put Cam in the cart and the other two girls ran off towards big blown up Santas and snowmen. Brad supervised Mace and Nat as they argued over who would grace our front lawn, Rudolph or Snoopy and I kept a close eye on Cams. Even though she was in the cart, she still has the armspan of a condor and with several other families picking out yard decorations as well, I had to be on high alert so noone got assaulted. It's our own version of "Homeland Security". Twice as Brad and the girls pondered over their decision Cams tried to attack. Once on a small boy who walked past the cart and once on two kids who took me by surprise coming around the corner as we were headed towards it. I somehow managed to maneuver the cart into a sort of wheelie and saved them without them so much as knowing they were even in danger. I saw Brad out of the corner of my eye and he gave me a thumbs up on my fancy footwork. Mason and Nat were getting nowhere on picking a blow up and I didn't know how much longer I could keep the peace so we decided to get Rudolph and Snoopy and get on to the tree lot. Merry Christmas!
Even before we got out of the car, I knew there was going to be trouble. Seems someone thought it would be festive to bring their dogs with them to pick out their tree! Now, you all know by now Camryn's adoration for four legged furballs and as soon as she looked out her window and saw them she began to tweak. "I wanna see Bud Bud (my brothers dog is Buddy and these dogs looked like him)! I wanna give him licky face! I wanna be gentle with him!!!" She was going off and we hadn't even gotten out of the car. I could not believe it! Brad took Mace and Nat and I grabbed Cam. She only wants to be with me so it doesn't make any sense to try and have someone else hold her hand. It would only add to the commotion, so Cams and I headed toward the trees. The dogs were running loose because it would have been way too easy to have them on a leash, and of course they ran right up to us because come on, it wouldn't be Christmas if Cams didn't pull a few dog jowels. I didn't know these dogs and although they were goldens, which are mild mannered, they were big and I knew Cams wasn't going to play nice so I veered her away. She was screaming and digging her heels into the ground and I was clenching my teeth, thinking "I cannot believe this! Can we not even get a f*#%ing Christmas tree without Autism in our face?!" People were staring, Mason and Nat were getting upset and I was about to lose it. I finally said " I'm calling my mom!" Because she lived just down the street and I knew she was home, I was going to drop Cam off while we picked out the tree. Camryn had no interest in the trees whatsoever and I still had two other little girls who would remember this outing for the rest of their life so I was going to try and make it as pleasant as possible. We piled back in the car, dropped Camryn off for twenty minutes and went back to the lot where we wandered around lost in the scent of pine and the chatter of the girls deciding on the perfect tree and basked in the light of normalcy, it was so wonderful.
With Brad's work schedule so hectic, it was often me and the girls until about 8:00 every night. With so much time to fill and most nights it being too chilly to play outside I would take them to look at Christmas lights. We would put on holiday music, drive downtown and admire all the twinkling lights and decorations. Cams always has to sit up front when we all go in the car because no matter how you sit them, she can always reach her sisters and hurt them unless she is up front with me. Apparently unless we purchase a bus that's the way it's going to be. And because she is up front she always has access to the sun visor and the lighted vanity mirror.And for some reason only her Autism knows, the visor must always be down and the mirror always open, light on so she can watch herself move her tongue around or chew gum. In her time up front she has managed to outsmart the window lock system and repeatedly rolls the window up and then down and then up and then down for the length of the ride. So while we're out looking at lights the front seat is lit up like the sun and the sound of the automatic window hums over the Christmas Carols. It makes for a very interesting ride.
Every year we bake cookies for Santa. I did it as a child and have such fond memories of it and I want my girls to have the same. What we have done in the past is because we lived an hour and a half away I would leave Camryn with Brad and take Mace and Nat up to my moms and we would spend the day baking cookies. Now that we live by my mom again I decided to bring Camryn along to make cookies, knowing I could just take her home if it didn't work. Mace and Nat were excited to bake and we showed up at my moms with three rolls of dough. We sat at dining room table, floured it up and gave each of the girls a ball of dough. Camryn thought it was playdough and began making a snake out of it. Mace and Nat took turns using the rolling pin and as soon as they would get a piece neatly pressed, Camryn would reach over and tear off a piece shouting " Can I have more Playdough please?" Of course Mason and Nat would scream at her and start crying and then I would step in and fix their dough, get it rolled out again, they would cut out a shape and then Camryn would reach over again and rip it to pieces. At one point she threw the wooden rolling pin across the table and that was when I said " Okay we are done!" We gathered the deformed snowmen and mis-shapened Santas and put them in the oven where they baked into crunchy, golden blobs. Mace and Nat were crying, Camryn was screaming and tweaking and I was covered in flour, fighting back tears and so hating Autism! My mom had just Mason and Nat back the next day to try it again while I stayed home with Cam and ate the golden blobs.
Every year the local botanical gardens transforms into a lighted wonderland and invites the public to walk through. There is live music, hot chocolate and a few vendors. We have never gone but decided to try it this year.We were not the only ones with the idea and the park was packed, which was good for them but bad for us as that meant all the more potential victims for Camryn. Brad had to work so it was my mom, my aunt and her partner, me and the girls. I made sure to have Camryn by the hand at all times and then everyone else took turns keeping her other hand. It's the only way to do these things so no kids passing by get hurt. The lights were pretty and the night was beautiful. We stopped to hear the man singing, which Camryn loved! He was keeping the beat with his foot and Camryn kept shouting " He's tapping the ground!! He's tapping the ground!" Mason and Nat started dancing in the courtyard and I knew Camryn wanted to also but there were several toddlers dancing too and I couldn't risk them getting hurt, so I held Cams hand and let her jump to the music. After about fifteen minutes that wasn't enough and she started to try and get out of my hold. And then it just turned ugly and she was screaming and biting her hand and grimacing. There were so many people I knew someone was going to get hurt if we didn't leave so that's what we did. As we loaded into the car I felt defeated and not very Christmas-y at all.
Before the kids got out for winter break I tried to finish up all the Christmas shopping. I did alot of it online, which was very convenient. Mason's big ticket item this year was a Nintendo DSi. She has been wanting one forever and was hoping and praying Santa was gonna come through. She also wanted another outdoor playhouse, plastic animals to play with, a lava lamp, Zhu-Zhu pets, etc. Natalie wanted a play kitchen, a baby doll that eats, Zhu-Zhu pets, Weebles, dress up clothes and much more. And Cams, well when we asked Cams what she wanted she said as she says every year "Playdough". I am not even sure she understands what Santa is all about, but we still talk to her about it as we do her sisters. It is in vain though as we buy her toys because many Autistic children do not play with conventional toys. But I am her mommy and it's Christmas and I want her to have presents from "Santa" under the tree. So while I picked out Mason's DSi and Natalies ballerina dress, I also picked out Cams toys, only a little differently. Actually I went to several consignment stores and bought baby toys. Yep, baby toys or toddler toys. Things like cloth books, a plastic dash board with a steering wheel that when you turned it sang the alphabet and a green piano shaped like an alligator that we actually had a few years back when Camryn was three. They were not age appropriate but they were developmentally appropriate and I knew she would like them. And every time I would bring them to the counter to pay, the clerk would ask "How old is your baby?" To which I would answer "Seven."
Christmas Eve my aunt always has an open house. Friends and family come by and bring delicious food and everyone visits and socializes into the night. We go every year and every year it is a challenge because my aunt's house is like a china shop and Camryn is the bull. Because my aunt and her partner have no children their home may as well be a museum. And while everyone there is so kind and aware of Camryns needs, they don't know how to handle her and so Brad and I end up chasing her around the whole night, keeping her away from the open flame of the chimnea and out of the koi pond. We give a quick hello to friends as we fly past, but there is not much socializing or relaxing. We try to stay as long as we can but this year we only made it an hour and a half before we were exhausted and wished everyone a Merry Christmas as we hurried out the door.
Christmas morning was great. The kids tore into their gifts and were quite happy with their haul. That Santa, he's quite a guy! Everyone comes to our house on the holidays because...you guessed it, it's easier for Camryn. I would love to be able to head over to my moms for Christmas Dinner, but if Cam has a meltdown there is no area set up for just her, and my mom has two very small dogs that cause an issue as Camryn is constantly trying to get to them and we are constantly trying to keep her away. It's fine though, we have everyone over and open gifts and eat wonderful food. It is always a good time.
So with a month of hellish festivities under our belt, we only had one more night of the month or for that matter the year to get through...New Years Eve. And we could have just stayed home and rang in the new year with some sparklers and a pizza but why when we could just as easily get in one more hellish outing before the clock struck twelve? Yes, we decided to go to Busch Gardens for New Years Eve. It was the last day to use our annual pass and the park was open until 1:00 a.m., so our family along with my brother, his girlfriend Jackie and a family friend Pam headed off to the jungle. Camryn loves Busch Gardens, but I think we now know that she thinks the Sesame Street attraction at BG is all it's about. We told her we were going that morning and she immediately started tweaking and talking about Big Bird. We decided to stop at Burger King before we entered the park and as soon as we pulled into the parking lot Camryn started wailing " I wanna go to Busch Gardens"! We went inside and sat down to eat but Camryn shoved her chicken tenders in my face and just kept shouting out "Big Bird!! I wanna see Big Bird!!" I ended up taking her and my food out to the car while everyone finished up inside because she was creating quite a scene. I really should have let her know first we would be stopping at Burger King but I didn't and I will not be making that mistake again.
So we get to Busch Gardens and it is packed! The normal attendance is about 5,000 and that day they were expecting 30,000! I was very scared! We probably could have just stayed on the tram all day and Cam would have been happy. She loves and it and shouts "Woooooo!! Hold on!!" as it travels at a brisk 10mph through the parking lot. As soon as we entered the park I made sure to get our paper gold that allows us to go to the front of the line to avoid a meltdown and then we were off to Sesame Street. Camryn was so excited and happy and that is why we bring her, because she absolutely loves it! Because of the high attendance that day the lines were much longer than usual for the rides. As we approached the flying elephant ride I saw the line of moms and dads waiting with their ancy children. I also saw the looks we got as I exchanged my piece of paper for an immediate seat on the ride, but as I always say "I will gladly wait in line with your child while you go ahead with mine!" As the elephants went up in the air and spun around Cams bit her hand in excitement and squealed. She did really well when it came time to get off and we did a few more rides in Sesame Street before we moved on to another part of the park. But like I said before, Camryn thinks Sesame Street and Busch Gardens are one in the same, so leaving Sesame Street to Cams meant we were leaving Busch Gardens and so the whole walk through the park she kept shouting out "I wanna go to Busch Gardens!!!!"  She was not happy about leaving Big Bird and was having a hard time. I got her out of the stroller thinking that may help, but it didn't. She was gnawing on her fingers and arching her back as I led her to Jungala, the area where the White Tigers were. People were staring and kids were pointing as Camryn had a walking temper tantrum through the park. We finally made it to the tigers and she was temporarily satisifed. She pressed her face up to the glass and shouted "My name is White Tiger!! Nice to meet you! I wanna give him a hug!" The crowd laughed. After leaving the tigers we decided to ride Rhino Rally, which you may remember from a previous BG blog as the ride where we had to wait for about twenty minutes even with our special pass and it was horrendous. Well, we were assured up at Guest Services that it would be different this time and that we would be given a time to board the ride and just show up at that time. They lied. We got to the ride, showed our pass and were directed to a special holding area, like before. I felt nauseous. And just like before as soon as Camryn saw the jeeps that we would eventually be boarding she flipped out. I kept waiting for the man to get a clue and put us on immediately but he didn't. So there we were in a very unpleasantly familiar scenario waiting in a shorter but still lengthy line to board this ride while Camryn thrashed uncontrollably, bit her hand, screamed and all we could do is stand there for all the crowd to see. Actually though, I felt bad for the strangers among us because it was plain to see by the look on their faces that they were extremely uncomfortable and unsure of what to think. Camryn was still clinging to me to even though the rest of our group tried to console her, she wanted nothing to do with them and continued to meltdown in my arms. It was pure and utter hell. I told Brad this was the last time I was bringing her to Busch Gardens, I had had it! We finally were able to board and I vocally praised Jesus before we set out on the two minute ride.
After that the day went downhill for quite a while. Camryn continued to be in a funk. She didn't want to sit in the stroller but when I tried to hold her hand and walk with her she arched her back, bit her wrist and screamed. We were headed to the opposite side of the park to eat dinner so we had about a twenty minute walk with Camryn fighting me the entire way. I was so close to crying, but kept it together. We made it to the restaurant and Jackie managed to pry Camryn away from me while I got the food. Once she sat down and started eating she immediately calmed down. By that time it was about 6:30 and getting dark. We stayed until 9:30 and the last three hours were much calmer than earlier in the day. By the time we got home it was 10:00. Two hours till the New Year. We could not get the kids in bed fast enough and thankfully they were so tired they went to bed with little resistance. Brad and I ordered a pizza and were in the middle of a movie when 2011 made it's debut. A pretty uneventful way to ring in the new year, but after a day like that uneventful is good, very good. And if the rest of the year is as uneventful as it's first few hours that will be just fine, after all I need to get my rest, December will be here before I know it!

Call me Cindy Lou Who

So the holidays are here. Thanksgiving is under our belt (literally) and Christmas is fast approaching. This morning was spent in a whirlwind stuffing bags with tissue paper and truffles for teachers and cookies shaped like chocolate covered stars for the kids. There was hustle and bustle trying to get each of my kids ready for their last day of school before the dreaded and often feared Christmas Break. And I know why it's called Christmas Break, because at the end of it you want to break everything in your house and then have a major breakdown. Well at least I do, but maybe that's just me! For while I do truly enjoy not having to adhere to a schedule and love taking the girls out to do Christmas-y things, it is always with the grinch like character of Autism lurking in the shadows, as the spectrum knows no holiday.
During the month of December, one of the things most families do is take the kids to see Santa Clause. It's in the parenting handbook...you must take your little ones to sit on the big guys lap or you're a terrible parent. So, every Christmas that is what we do. But keep in mind, we are taking two little girls that know who Santa is, what he is all about and that we are going to have to wait patiently in line because all the other kids at the mall want to see him too BUT we are also taking along one little girl who knows the jolly fella's name but doesn't comprehend the whole sleigh full of presents thing, will pout and cry without a care of who's watching and really just wants to touch his beard and eyebrows and wants to do it NOW!!!! Yep, so while Mace and Nat wait with  the typical ancy-ness of children, Camryn waits for no man, not even the one in the red suit and so as Santa's helpers, the entire mall and even Santa himself watch in horror, Brad and I do our best to restrain our daughter while she bites her hands and yells out " I like his eyebrows!!" all the while trying to yank the Christmas bow right off the head of the kid in front of us. By the time we get to the front of the line, we are drenched in sweat and Camryn's Christmas dress in wrinkled, her hair is a mess and Santa looks very, very scared. It's a very merry time!
This year, I received a memo about a Santa setup designed specifically for children on the spectrum. It was called "Sensitive Santa" and basically it was Santa at the mall before shopping hours, lights were dimmed, the mall was completely void of music or piped in sound and all along the line there were areas for waiting kids to color or take a break from standing in line.In a nutshell, it was completely sensitive to the ensory issues of kids on the spectrum. It was a fabulous idea! HOWEVER....it was a fabulous idea that needs to be available more than one morning of the year because you know how statistics show every 1 in 100 kids is on the spectrum? I think they were ALL there that morning to see Sensitve Santa! The memo said it was from 8-10 a.m.so I figured Cams and I would go around 9 to avoid the crowd of early arrivers. And I almost didn't go because everything that could work against us that morning did and it would have been so much easier to stay home, but because I am the mother of an Autistic child and Westshore Mall was making an effort to offer this to my daughter I knew I had to go and support it in case nobody showed. So as we pull in the parking lot I see a few kids and their parents coming out with goodie bags and pictures. Maybe a handful of people. I figured we would be in there twenty minutes tops. HA! When I turned the corner to where Santa was, I could not believe the line! No lie, it had to have been seventy five deep! OMG! A line of seventy five plus parents with their autistic kids infamous for lacking patience waiting to see Santa? I knew I had entered hell. But we were there and Camryn was showing surprising interest in seeing Santa. She kept shouting out "I wanna see Santa! I wanna pet him! I wanna pick him up with two hands!" And while normally that would be the part where the crowd stared in judgement, that day we were amongst friends, though we knew not a single one of them, because they too lived on the spectrum and I didn't have to say a word. We took our place in line and the wait began. And I have to give Cam props because the girl did good! We only had two incidents of walk-by scratchings and one close call of a bowel movement that took her by surprise. But other than that I was so impressed with how well she waited in the line. And I was so shocked to see the excitement in her eyes as she shouted out about seeing Santa. She really wanted to see him!! It made me so happy to see that glimpse of "normal kid behavior". Because Camryn did so well and because I was in an atmosphere where I could let my guard down a bit, I found myself looking around at everybody there. Normally when we're out I am so tuned into Camryn and not taking my eyes off her I am oblivious to the surrounding crowd. But today I knew there would be no judging stares or pointed fingers and for once I was able to be out with Camryn and just be. It was so nice! While I was standing there I began to look around at all the other parents in line. And although they were from all walks of life they all had that same look on their face. The same look I see everyday when I look in the mirror. And I can't even explain what it is, but I recognized it immediately. Something between a look of desperation, exhaustion and deep,unconditional love. I watched all the kids. Autism is such a custom disorder. It is different and unique to each of it's host's, which is why they have the saying "If you've met one child with Autism, you've met one child with Autism". I studied them all, looking at their faces, their expressions, their movements and sounds. Some were very alert and verbal while others were lost deep within themselves. And I knew that for those this event, this waiting in this line, this was for the parents more than the child. For the parents who want their child to be like other kids and have what other kids have even if they don't even know they should want it. I know because I waited in that line for the very same reason.  I saw many parents who only had the one child, no siblings and were doing at Christmas what parents of typical kids do every year and take for granted. Going to see Santa, making Christmas cookies, wrapping dolls and legos and video games to be torn open by eagerly awaiting little hands. But for these parents, who have an only child who does not experience the magic of Christmas, who does not understand baking cookies or looking at lights or setting out milk for Santa, Christmas is not the same. Many Autistic kids don't play with toys. They don't hold a baby doll or play with army men. They don't long for the latest Nintendo game or beg for an iphone. But us mom's and dad's of Autism, we still know what Christmas is and we want to experience it with our children. So we go to the store and we buy toys in vain that maybe, just maybe our kids will play with instead of throw around and we decorate the tree and we read the stories and set out the cookies and go through the motions of Christmas as we know it and hope that behind that vacant stare they are getting it.
 I am so blessed that I also have two other children that are totally healthy and are typical kids. They know what Christmas is, they can't wait for Santa to come, their list is a mile long and I LOVE IT! We bake cookies and go looking at lights and watch every Christmas show ever made and sing the songs, buy the presents, leave food for the reindeer, etc. You name it, we do it! And I thank God I get to experience this with my kids because standing in that line I saw so many parent's who had just one child and that child was trapped inside his body, a prisoner of Autism and the joys of Christmas as a kid would not be the same and my heart broke for them.
So, Cams and I waited for....are you ready...drumroll please........an hour and a half!! Yes, one hour and thirty minutes my friends and then finally it was our turn. The last one hundred and eighty minutes of Camryn pining to see Santa was over and now it was her turn. The "elf" helping Santa came up to Cams and reached out her hand. "Come on sweetie, it's your turn to see Santa!" And the look of fear on Camryn's face was almost comical! She wanted nothing to do with that elf and now that she was within reach, she wanted nothing to do with Santa, his beard or his eyebrows! BUT I did not drive us all the way over here, wait in line for all that time, apologize to two moms for my daughter scratching their kid,and run like the wind to the other side of the mall before Camryn pooped her pants for us to not see Santa! I grabbed Camryn by the hand and led her to Santa's "throne". Santa looked very tired, as I'm sure this was much different from his usual gigs. Cam was digging her heels in the ground, but I managed to pull her up on my lap as I sat beside the big guy. "I haven't seen you in a very long time!" I joked with him. The man in front snapped our picture, Camryn jumped off my lap and in about nineteen seconds our visit with Santa was over. They handed us our picture and a candy cane and we were out the door. One hundred and eighty minutes of standing in line for that? Really?
 I wasn't sure if Cams got the whole thing, part of the thing, or any of it all, but I did and for now that's good enough. This wasn't about Camryn begging me to take her to see Santa. This wasn't about her writing a long list of wishes and asking Santa to bring them all Christmas Eve. This was about me as a mom of a little girl at Christmas time and not letting that mean, ugly Grinch called Autism steal Christmas!

Is This For Real?

I try to stay positive, you all know I do, but mornings like this one really leave me struggling to see the good in our situation. Last night was another rough one, with Cam's getting up twice, each time with a soaking wet pull up. She was screaming so loudly, even after I had taken her out of her room and changed her pullup. Not wanting to wake the rest of the house any more than we already had, I took her into the kitchen hoping the sight of the dog might quiet her. She was distracted by Riley only for a moment and then continued with ther ear piercing wails. Mason yelled from her bedroom," Be quiet Camryn!!!! I wish you could just move out!!!! I don't deserve this!!!!" 
I felt horrible because she is so right! No child deserves to grow up in this chaos. But then again, no child deserves to grow up in an abusive home, a shelter, a war torn country, a hospital ward, etc. This is what we have been given and compared to some other situations, it's a piece of cake, a really stale, dry piece of cake.  But when you're nine and it's two in the morning and your sister is screaming through the house, the self control to stay calm and tell yourself she is not doing it to be hateful just isn't there. I understand her frustration but I also have to let her know there is a different way to handle it. I had about a two second talk with her and she was back to sleep.
Cams finally went back down for good the second time and slept till six forty-five.
All was okay for about the first ten minutes, but then she started to get whiny and agitated. She was all dressed for school, looking so cute in her pleated skirt and zebra knee highs. But she wasn't acting cute so I put her in her room to look at books while I got the other two girls ready and not two minutes passed when I heard the dreaded phrase "I need the wipes honey". Oh sh**,literally!! Again she shouted out "I need wipes honey!" Everyone in this house knows that if Cams says she needs wipes it means she crapped in her pants.
She does this now alot and I don't know why! She knows how to tell me she needs to go poop, but does she tell me? Not when she's in her room. I guess she figures if I have the nerve to put her in her room she'll show me and sh** her pants. Uuuuggghhhh!!! Why?????????????????
I take her out of her room and start the stripping down process. First I take a peek in her panties to see what consistency we are dealing with. Mush, complete and total mushy, squishy poo just sitting there ready to ooze out the sides any second. And now it's my job to figure out how I am going to get these packed panties off Cams without creating a total mess. By the way, at this time there is about five minutes left before they need to leave for school. Brad is helping the other two while I take Camryn into the hallway and map out a plan in my head. First, shoes and knee highs off. Then skirt. Taking her shirt off will make her think she is getting in the bath and we have no time for that. I try to fold it up around her midsection in the hopes it will remain completely white. I have her down to her panties and they are sagging big time. She is very agitated and keeps trying to rip them off, which is exactly what I am trying despertately to prevent her from doing as taking them off in a rush would surely fling wet poo all over the house. Oh the glamor of my life!
She keeps pushing my hands away from her as I am trying to slip the panties off as carefully as possible. Somehow I managed to get them down with only minor smearage on her legs. I know, it's so gross! Brad and the kids are holding their breath trying not to inhale the stench and I am trying to kep her from stepping in the mess which is now on the floor on a plastic bag. She is wriggling and fussing the whole time I am trying to wipe her. I get her clean and get her dressed, AGAIN. Brad is ready to take them to school but Cams hair looks like rats have taken up residency in it so I decide to twist it into loose braids. Well, one of Cams sensory issues is that she does NOT like to have her hair brushed at all! It's an issue every morning, some worse than others and today was going to be one of the worse ones. I'm trying to be as gentle as I can but she is screaming and thrashing her head around. I am trying to remain calm and sing her a song about Uma going to the barbershop (it's a  character from Oobi, her favorite show). Now mind you, while all this was happening this morning, my right wrist is in a brace. Turns out it wasn't fractured, but tendonitis, which let me just say is equally painful. I removed the brace for the blowout, for obvious reasons, but put it back on before I did her hair. Btu does Cams know why I have that thing on my wrist or does she care? Nope! She is whacking my hand and wrist tryng to get me to stop and finally I just say "I give up!" Brad takes Camryn and scolds her for hurting me. I manage to get her hair into something that resembles braids and send her out the door. She is still whining and screaming as she gets in Brads truck, but at least the wails will get fainter and fainter as he drives away. I could not wait for them to leave! Horrible I know, but true! Nat is the only one left in the house and I give her a big hug and kiss and let her know I love her. She says she loves me too. That girl is such a blessing to this family. She is a sister for Mason the way a sister should be and she is a little girl for us the way a little girl is imagined. I love Camryn with all my heart, issues and all, but to look at my youngest daughter and see her playing with dolls and drawing rainbows and flowers brings my heart so much joy. Joy that is often shadowed and marred by the ugliness of Autism.
So all my girls are at school now and I can finally breathe. The house is completely silent except for the tapping of my computer keys. In three hours I will pick up Nat and then an hour after that Mace and Cam. Yesterday Camryn bit my arm and screamed all the way to the car so I'm guessing today won't be much different. I'll try to listen to Mason's day as we drive home while Camryn pinches my arm and screams in the front seat. This is my life and even though I don't understand why, I know there is a reason and I have to keep going.I have to believe that someday I will look around and say "Aha, so that's why!" and then all of the chaos and heartbreak and struggles will make sense. Until then I will continue to clean up blowouts, dodge flying hands and plug my ears up with cotton. It's not pretty but somebody's gotta do and for whatever the reason may be, that somebody is me.