All Political Correctness Aside

When I first started this blog, my intent was to document the daily ins and outs of raising an Autistic child in a humorous tone,because if you know me then you know that's how I handle most everything...with humor. And though some of my entries have been light, most of them have turned out to be on a more serious note. I guess I just thought that in the beginning I should cover some of the more heavy topics so readers could really get a feel for how Autism has affected our lives. And in future posts, I plan on getting back to the lighter side, because if there is one thing I don't want, it's for this blog to sound like a whining post....except for today. Well not necessarily whining, but somewhere along those lines. And for those of you who read and don't have an Autistic child, I hope you will understand that every now and then, just to get through the day, week or month, us parents of the spectrum need to have a moment where we can lose the smiles, lose the "I'm fine" look and basically just lose our cool and say..." Ya know, this Autism thing sucks!" Ok, so there, I said it. Again, if you know me, then you know that while there are moments on an hourly basis where this thought runs back, forth and all through my mind, most of the time I try to focus on what's right with Autism, and most inportantly whats right with Camryn. But today, a perfectly harmless event put me in the mood for a tiny violin, you know that kind they play at pity parties, so I decided to go home,break out the bow and squeak out a few tunes. One of my very best girlfriends in the world has two little girls, the same age as Mason and Camryn...9 and 7. And of course since we have been friends, about five years, it has occured to me on several occasions that her youngest and Camryn, though the same age, are so far apart developmentally. But that has never stopped her from treating my girls the same she would treat anybody elses kids and in fact, she has gone out with my kids and me when Camryn has been screaming and biting and basically flipping out and she never bats an eye, which I why I love her so. And the fact that her daughter is always doing the things that Camryn would be doing if she weren't Autistic really never bothered me. When her little one called yesterday to invite me to the schools Authors Tea to watch her read a book she wrote, it took no more than a second for me to say "Yes!" I love those girls like they are my own. So, when I walked into the classroom this morning and looked around at all the little first graders dressed in fancy dresses and sunday suits, I was surprised that  all of a sudden I felt sad. These little guys were Camryns age. Just like her they had toothless grins and dirty fingernails, each one of them cute as could be.And there they sat, quietly waiting their turn to read the masterpiece they had created for all their family and friends to hear. I just kep thinking, "This would be Camryn. This should be Camryn. But this is not Camryn." I really don't have these moments all that often anymore. I really have, for the most part, accepted that my 7 year old is different from that 7 year old and that seven year old and I am ususally okay with it. But for some reason today, I wasn't. And I think it's because I consider my friends daughter as one of mine. And looking at her up there, all dressed up, reading into the microphone like a big girl, I felt proud as if I were watching my own child, and then I remembered I wasn't. I was sitting in a regular education first grade classroom where Autism was a foreign word and IEP could stand for "Incredibly Excelling Pupils". There were no assistants to help with unruly kids, no time slot on the schedule reserved for Speech Therapy. No PEC boards or therpay balls. Nope this was first grade, the way it should be. And these were first graders, the way they should be, studying for spelling tests and complaining about homework. And while I was there watching them in all their first grader-ness, my first grader was across town in a Communcation Disorders class so far removed from this one. Spelling test? Let's master drawing a line first, then maybe we can talk letters. Homework? Ummmm, again, kinda hard to do when you don't read or write. She is nowhere near where these kids are and on any other day I could find a hundred positive things about her that make up for it. But not today, today I was just sad. Sad and jealous. And even though I smiled through it all, complimenting each one on their stories and outfits, I was dying inside. And as I congratulated each parent on their child and talked about how proud they must be, inside I was screaming "DO YOU KNOW HOW LUCKY YOU ARE? YOUR KID JUST STOOD UP THERE AND READ A BOOK HE WROTE HIMSELF! AND YOU JUST TAKE IT FOR GRANTED THAT HE CAN DO THAT AND  TONIGHT YOU WILL PICK HIM UP FROM SCHOOL AND ASK HOW HIS DAY WAS AND HE'LL ANSWER YOU!!AND THEN YOU'LL GET HOME AND TELL HIM TO GO PLAY AND HE WILL! AND YOU'LL EAT DINNER  AND HAVE A CONVERSATION WITH HIM AT THE TABLE. AND THEN YOU WILL PUT HIM TO BED,NO PULLUP NEEDED AND KISS HIM GOODNIGHT AND WALK OUT THE DOOR WITHOUT PUTTING THE BABY GATE UP SO THAT HE WON'T GET UP IN THE MIDDLE OF THE NIGHT AND SQUEEZE ALL THE SHAMPOO ALL OVER HIS BODY, PINCH AND SCRATCH HIS SISTERS,OR WALK OUT THE FRONT DOOR AND WANDER AWAY!" Of course while all this was going on in my head, I was just nodding and smiling, saying "Uh-huh, mm-hmm". Anyhow, I feel better now. It's amazing how therapeutic writing in all CAPS can be! And now I am over it. Think it, feel it, let it go. Thought, felt, gone! I'm already on to what to make for dinner tonight and more importantly if while I'm cooking it Camryn will poop in her pants,pull off her panties,dump the poop on the floor and then step in it and make poopy footprints all around her room,an act she likes to reserve for the dinner cooking hour. Maybe, maybe not. That's the thing with Cams, she keeps me guessing and that keeps things interesting, far more interesting than studying for a spelling test or practicing flash cards.

What does Seventeen look like?

Well, we did the walk and it was a success!!! The shirts we made came out adorable, the weather was beatuiful (though a bit too warm) and the turnout was huge! When we first got there and I saw all the people gathered for this cause I got emotional. And I guess really, that is  the point of these walks, along with raising money, because while you see Autims in the news all the time and you probably know someone who has a child with it, the grandiosity of it all cannot truly be felt until you see it in person. As in people, hundreds, thousands of them, all gathered toegether in one spot, wearing shirts adorned with their loved ones name or photo, holding signs and waving banners, all because someone they love has Autism. Some walk, some skip, some like Camryn even throw in a dance move or two. Moms and dads push strollers and pull wagons, siblings hold hands, grandmas and grandpas, aunts and uncles, friends and classmates, they all walk. Some because they want to find a cure, some because they want to find the reason and others just for support. And when you look around  is oh so obvious that Autism is an Equal Opportunity Offender, as it knows no race or religion, has no social or economic requirements. I scanned the crowd, and saw several people that, had I met them on the street I would bet my last dime that we had nothing in common. But come to find out, that in fact we do. Something pretty important!  About ten minutes into the walk, a young girl, I had guessed about 13, came over to me and grabbed my hand. I could tell by her facial expressions that she was Autistic and when she spoke there was no doubt. Her speech was very garbled and though I consider myself pretty fluent in Autism, most of what she said had to be translated by her mother. Turns out she was not 13, but 17 and her name was Alexis. She was happy and friendly and could so be Camryn in 10 years, something that made me happy and sad at the same time. Her hand was warm and she held mine tightly as we made our way down the street. Every now and then, she would leave me and reach for someone elses hand in the crowd, but I didn't take it personally as Camryn is a stranger-hand-grabber from way back! In fact, while Alexis held my hand, whose hand do you think her mother held? Why Camryn's of course! Halfway through the walk, we gave each others daughters back and that was it, I never saw them again, in person that is. I do however keep picturing Alexis in my head and I can still feel the way her hand felt in mine. As a mother, you never know what the future holds for your children, except for the fact that they will grow like their peers, finish school and eventually move on with their own lives. As the mother of an Autistic child, the future is even more vague, because Autism does not follow a clear cut path. Each case is so individualized, so unique and specific to that person, that you can have two kids with Autism and one grows up to be self sufficient while the other will always need assistance. It's just so hard to tell. And the future of an Autistic child who is a girl is even more baffling, because there are far fewer incidences of female Autism to follow and compare. Meeting Alexis kind of gave me a glimpse of what Cammy may be like as a teenager. They were similar in many ways with both of them being social and friendly, both of them wanting to hold hands and both of them appearing much younger than their age. And although it was impossible to know the struggles she had been through and what her issues were in the short time I was with her, it was clear that she was a happy child, a loving child and a much loved child. Which at the end of the day, is basically what you want for your kids. It was also clear that she was functioning well below her peers, that she would never be independent and that her mother, though obviously a great mom, was very,very tired. I knew Brad was watching, he was only a few feet away, but I didn't dare look at him, because I knew. I knew that he was looking at her and looking at Camryn and  thinking that was her ten years from now. And I knew that he was sad and I just couldn't allow myself to go there right then. But I have gone there since and we talked and he was thinking those things,just as I did and turns out so did my mom, who also met Alexis. And although we never verbalized it, even though it makes us sad to think that when Camryns a teenager, while other girls her age are out driving Daddys car and trying on cute clothes, she will be grabbing strangers hands wanting them to smell "White Tiger", I know we all can find peace in knowing she will also be innocent, happy and carefree of the worries adolesence brings. But for now, all we can do is enjoy(most of the time that is) who she is today, like with any child. Her teen years are still far away and however she grows to be she will be loved. And to be perfectly honest, after the meltdown my so called "normal" nine going on fifteen year old daughter had this weekend, it's her adolesence,not Camryn's, that scares me. The back talk has started, the looks from hell are being cast and if I had a dime for every eye roll my mansion would be soo big, so I can only imagine what her "seventeen" is going to look like. And then of course, we have Natalie, who while still sweet as can be, I see major drama down the road. So after Mason drags us through adolesence hell and as we anticipate Natalies fall from grace, if at seventeen Camryn still needs me to tie her shoes or rescue an innocent bystander from a whiff of "White Tiger", than I say bring it on, these "normal" kids are killing me!!

The Walk

So this Saturday is the Walk Now For Autism Tampa Bay in downtown St. Petersburg, and for obvious reasons, we will be attending. We went to the one for Southwest Florida last November in Estero and had a great time. We raised over $300.00, had beautiful weather and enjoyed family time in a non-judgemental environment. And this Saturday, I look forward to the same positive experience. There will be one difference however because this time, the walk will be personal. Personal? You're probably thinking..."Of course it's personal! You're daughter is Autistic!!" Well, yes and it is always personal in that respect. But I am talking about personal on a different level. As in my own personal feelings and perceptions. When we walked in November, it was in a foreign environment, a place I had never been. Southwest Fla has only recently been the place I call home and if I can be completely honest, it has been more of a location. As beautiful as it is and with all it has to offer, there are no childhood memories here, nothing that can take me back. So when doing the walk for Autism, it was just that, a walk for my daughter's disorder. But in 2 days I will be walking for Camryn in St. Petersburg's Straub Park,a place that knew me when I was very young, when my dreams were big and my hands were small. A place where I would tag along with my mom to Mainsail Art Festival every spring,strolling up and down row after row of bright,white tents filled with artists creations, each one more beautiful than the last and staring with wonder at the giant trees (which I now know as Banyan trees) that grew "upside down". I just knew fairies lived somewhere in their shadows and oh, how fun it would be to swing on those dangling vines! A place where I would run on a warm summer night, wind in my face, bare feet on the lush,green grass, while my parents listened to a concert in the park, or watched the boats rock in the harbor. On cool December nights, we'd all pile into the car to look at the lights in the park and the lifesize Christmas Cards display. I remember begging my Mom to take me to the Straw Goat, a store just across from the park that specialized in European gifts. They had these wonderful, gigantic rolls of the bestest, shiniest stickers any nine year old girl had ever seen and if my Mom would just buy me enough to fill a page in my sticker book I would never be bad again, ever! As I grew older, the park became less a place of imaginary creatures and more of a refuge in changing times, a safe haven..After my parents divorce when I was about eighteen, my mom and I would take long walks along the waterfront in the evening, often circling the park and admiring the beauty of the downtown. And when Brad and I started dating,we never missed the annual symphony in the park.We'd meet up with family and friends, spread a blanket under the October sky and share wine, pate and lots of laughter all to the tune of Beethoven's Fifth. Fourth of July, New Years Eve, those too were spent in the park as booming fireworks lit up the sky. And even after Mason and Camryn were born, we were lucky enough to live close enough to the downtown that I could put them in the stroller and take off on my five mile loop, which always included a walk around Straub Park. And when I think back on all those memories, I can't think of a single time I have been in that park and haven't been happy to be there. But that is about to change. While I won't be "sad" when I walk there this Saturday, it will certainly be a different experience. For I am grown now and the trees, while still big, aren't nearly as gigantic as I once thought them to be. And the grass is still lush and green, but won't be felt under the hard, rubber soles of my sneakers. The "Straw Goat" closed it's doors forever. And the fairies,well, I know better now. And even if they were there, hiding somewhere in the shadows, all the fairydust in the world couldn't change the fact that my daughter has Autism. But this is my life, this is the woman the little girl who grew up here became. And although things turned out so very different from the dreams I had back then, my faith assures me things are just as they should be. So I will walk this Saturday for Camryn and the thousands like her, around the park, past the harbor and underneath the banyans. And I'll be sure to be extra careful, because even though I know better, I wouldn't want to step on a fairy :)

Thank you!!

Just a quick note to say thank you to all who read my blog and who have become followers! I noticed that I gained 5 new followers yesterday and I am so appreciative! Writing is my passion and now because I have an autistic child, writing about her and our life has become my passion. Thank you, thank you, thank you!! I have so much to write about, I hope you all enjoy! :)

Eve

Three-Fifths Family Vacation Part 2

So, my last blog I wrote about how I took Mason and Natalie up to my mom's for a "mini vacation" over spring break and did all the things we wouldn't normally be able to do with such ease at home, while Brad stayed with Camryn. Well, the following week, Brad and I switched roles and he took the girls on a "not so mini vacation" to North Carolina and I stayed with Cams. Although the circumstances for Brad's and the girls trip were not the best (his grandfather had passed and they were going up for the service) it turned out to be a nice time, as his family have not seen Mace for years and have never seen Nat. Brad's sister has three kids that Mason has been dying to see again, so she was totally psyched! I only have one brother and he has no children, so my kids don't have any cousins on my side. And with Brad's family being so far away, the cousins they do have, have only been pictures with names up until now. I myself grew up with no cousins and just one living grandparent, whom I loved dearly, so knowing the girls would be able to play with their cousins and spend time with Brad's remaining grandparents made me so happy for them.  But again, with these situations, the feelings are bittersweet, because while Brad can bring up two of his girls to show off to his family, he was not able to bring up his third daughter, who he is just as proud of, or his wife (who also, is pretty impressive!) and that makes both of us sad. But we know all too well that traveling and Camryn don't play well together and Camryn spending the night somewhere other than the comfort of her own bed is merely a dream. So we sulk about it for a second, feel sorry for ourselves for a minute and then try to focus on all the good that will come from this experience. First being Mason and Nat got to take a roadtrip with just Daddy! Two girls and their Dad in his big ole truck, riding down the interstate, with a big bag of snacks and an even bigger bag of toys and coloring books to pass the time. The music was loud and so was the laughter and the memories being made would never be forgotten. They didn't drive all the way through, which meant they got to stay in a hotel which, ask any nine year old, is super cool!! The next morning they had breakfast at the hotel, which also ranks really high on the cool chart, and then took off for the rest of their journey. Once they got to Brad's grandparents house, the real fun began. Everyone marveled at how big they had gotten, how much they looked like so and so, you know the usual. Then their cousins arrived and after a few moments of akwardness, they started talking and playing, making up for lost time. The next day they all took off to Carolina beach to spread the ashes of Brad's grandfather. The whole family went, renting out several rooms at a beach motel. The weather was beautiful and even with the somber tone of the visit, it turned out to be a great time. The girls collected shells on the beach, rough-housed with their cousins in the room, went out to dinner and just had fun. With the kids occupied, Brad got to spend time with his family, which he really enjoyed. And nobody had to worry about being pinched, or bitten, or whacked over the head. And nobody had to worry that come bedtime, there would be screaming and confusion. And most importantly, nobody had to worry that in the event she did fall asleep,in the middle of the night Camryn would figure out how to open the door and walk out into the ocean,the street or worse. Nope, nobody had to worry about those things and when you have to worry about those things every second of your life, a few days without it is so very good for the soul.
Now while all this was going on 700 miles or so away, back at the homefront, Cam and I were having our own special time. They left on Wednesday, so Cam had school the rest of the week, praise Jesus!  We pretty much kept to the same routine until the weekend. The only difference being that when we got home from school I could let her have the run of the house without the fear she was going to hurt her sisters.I still had to keep a close watch  to make sure she didn't pour my facial astringent into the sink just to watch it stream out of the bottle, or find the conditioner and rub it all over her arms and legs saying "I like lotion".
But just being able to not have that constant worry of her pinching Natalies cheek, or biting Masons arm, was such a luxury. Pretty sad huh? Some women love diamonds, some women cherish pearls, but me, nope, just give me a day or two of Camryn not hurting someone and I'm on top of the world! With her sisters not being home, I was able to sit on the couch with her and look at books for hours at a time without feeling incredibly guilty that I was "ignoring" my other two. We could go for a drive in the car (which she loves to do) and just listen to the music without the constant chatter of her sisters. If Camryn is in a good mood, she will ride in the car, look out the window and not say one word for long periods of time. Why, I've driven an hour and a half with her on several occasions when I have actually forgotten she was there because she was so quiet. But it's only when she is by herself. Bring her sisters into the mix and forget about it! Maybe it's the frustration of not being able to talk like them, maybe she likes having time with just me, or maybe she just wants them to pipe down so she can listen to her beloved Michael Buble :) Anyhow, we got to do a lot of the things together that she so enjoys, but don't happen as often as I'd like because, well, because I have three kids and one on one time is hard to come by.We didn't go to the movies, or out to eat or even to the store. No,we just sat together on the couch, me drawing objects on the Magnadoodle and her telling me what they were, reading books together and just lying there, me holding her like a baby, holding her tight, rocking her and singing to her, something she loves. She may be 7 years old, over 4 feet tall and well over 65 pounds, but that girl is still my baby and not just because she is my child. While Natalie is only 3 and still very babyish in many ways, I know well enough that before I know it she will be talking on the phone with her friends about who likes who and what they're wearing to school the next day. And Mason, well, she's just about there. But Cammie, I don't think those things are in her future. And as long as she will let me hold her and rock her, even if she is taller than me, I will gladly do it. It is one of my greatest pleasures in life.
So, Brad and the girls had their time and Cams and I had our time and when we all got back together again, we had time as a family. And though we had been apart for several days and our routine had been off, things went right back to normal the minute they walked in the door Sunday evening. Camryn pulled Natalies hair, which made Natalie cry, which made Camryn more aggressive, which made her pinch Mason, which made Mason scream, which made me put Camryn in time out, which made Camryn scream, which made everyone cringe, and left Brad and I wondering.."Is a vacation for just the two of us anywhere on the horizon?"

The Three - Fifth's Family Vacation Part 1

So Spring Break is over and for the most part it went well. And actually, I'd have to say it's been the best one yet. I don' tknow if it's because the kids are getting older, or we're getting smarter about how to go about things, but either way, I'll take it.  One thing that I did differently this year was take Mason and Natalie on a mini-vacation at the beginning of Spring Break. We went up to my Mom's house in St.Petersburg and spent four nights there, while Brad stayed at home with Camryn. It started out with the girls and I only being gone one night, with the purpose being visiting with my best friend Anna and her two girls who were in town for a few days. Anna and I haven't seen each other in six months and had been counting the weeks and days until she was here with her kids and then wouldn't you know it, they weren't here 24 hours and one of her girls had strep throat and the other an ear infection! Soooo, needless to say we didn't hang out for the first few days. Since I was already up there though, I thought it would be a great opportunity to just hang out with my kids. Just relax and do all the "normal" things that we don't often get to do in our usual surroundings. The first morning, which we had intended to spend with Anna, we got up and went to McDonalds and then came back to my moms and did...nothing. And it was amazing! I know that sounds crazy, so let me explain. At our house you don't just do "nothing" when the kids are home, or should I say when Camryn is home. Because of her Autism, telling her to "go outside and play with your sisters" is not an option. Oh sure, she will go outside, but her idea of playing and her sisters ideas of playing are on opposite ends of the spectrum(pun intended), so while Mason and Natalie build mountains of dirt to play with their plastic animals, Camryn comes by and scoops it up with a big spoon, to put in her bowl and make "oatmeal". Or when Mason and Nat decorate the inside of the "house" attached to their swingset, Camryn comes in and throws everything out. And then everybody's screaming and crying whcih agitates Camryn and then she's pinching and scratching, which makes for more crying, which leads to me playing with Camryn inside so Mason and Nat can play outside in peace. And I feel bad for all parties involved. For Camryn, because she enjoys being outside with her sisters and she is not intentionally demolishing their mountain of dirt.Where they see a perfect habitat for their pretend animals, Camryn sees premium ingredients for whatever she is pretending to stir in her plastic container. And while Mace and Nat think that the window sills of their playhouse look just right with flower pots and knick knacks from their room, in Camryn's brain, something is telling her to throw them off, because for some reason it bothers her that they are there.So for just doing what she feels and following her brains instructions, she is yelled at by her sisters and reprimanded by me, because I can't just let her destroy all their things, which gets her upset and then pinching and "growling" which eventually gets her inside. And I feel for Mace and Nat because I remember the feeling of being a little girl and playing  outside for hours and hours, either by myself or with Anna, and all the fun I had. I let my imagination take over and I was no longer in my backyard but in a scary jungle looking for tigers, or on the hunt for treasure on a lost island. It was exhilarating and exciting and so much fun, and more than anything I want my girls to have those memories as well. And it's kind of hard to look for tigers when your sister is banging you over the head with your net, or trying to dig for treasure and someone comes and scoops it up along with a pile of dirt, then pinches you and runs off, treasure in hand. It must be sooooo frustrating and I feel for them.Which leads me back to my day of amazing "nothingness". So, the girls and I were at my moms, it was mid morning and I had nothing planned. My mom was at work, the house was ours and the girls wanted to play. Fine with me, so I opened up the back door and out they went, into the yard, chasing bugs and making their toys talk and me? Well I just sat in the kitchen and drank my coffee!!!! And it was so amazing! Those kinds of moments just don't happen in our house. The joy of watching my girls run and play so carefree was almost euphoric. This is what it's like, I thought. This is what it's like to have "normal" kids. Sure they fight and fuss, but they work it out and I know that neither one of them is going to really hurt the other. Whereas with Cam, because she goes at things with such force, so she can really  feel it and get that sensory input that she needs, she could really hurt a child, and has, if left unattended with one. So the girls and I are constantly on alert for any sign that Cam is going to "attack", and more than not she does. But not that day, that day, Mason and Natalie played as little girls should, as sisters should. And for once in a long, long while, I watched, because I could and we didn't stop there. I wanted more. More time to be their Mommy like I've always wanted to be. To focus on them and do the things that Mommies and little girls do. So right then and there, I called Brad and asked if he would mind if the girls and I stayed a few more nights at my Moms and did all the things that Mason wanted to do over Spring Break that we wouldn't be able to do as easily with Camryn. And as the amazing husband and Dad that he is, he thougut it was  great idea, as he loves to spend time with Camryn one on one and planned to take her all the places she loves to go. So the girls and I went to the nature park and "hunted" for alligators, we went to 2 movies, out to lunch and dinner, and just had a great, great time. I got to really enjoy them, really talk to them ,listen to them, play with them,all out from under the shadow of Autism. It may sound do simple, but it's an experience that doen't come our way often and I treasure those times. Did I miss Camryn? Absolutely! Could I not wait to see her face and hug her tight? You bet! Did I wish she could have joined us? Only as the mother of an Autistic child could know.  But...guess what? Cams and Brad had an amazing time together too, doing all the things that Camryn loves...riding go-karts, going out to eat with just Daddy and White Tiger, and just being Cams. That's how we do things around here. It may be unconventional, but it works for us and that's all that matters. So if three-fifths of us do one thing and two-fifths of us do another, so be it. At the end of the day, we are still a whole family, a whole family living with Autism the best we know how. Stay tuned for part 2, when Brad took Mason and Natalie to North Carolina last week to visit his family and I stayed with Camryn. The girls had a blast with Daddy and Cams and I had time together. And dear God let there be a part 3, where Brad and I take a trip! Please,please...PLEASE!!! ;)

No school, no blog

Just a note to say I will be back to blogging next week. It's spring break, so I don't think I even need to explain the absence of blogging. Hope everyone is having a great time off!! And just now as I am writing this, almost as if on cue to prove my point, Camryn is standing beside me saying "Poop,did you poop" holding her panties, which yes, are full of poop. Gotta go! I love spring break!! lol