The Million Dollar Question

So today I thought I would address a question that is often asked in our household, mostly by Brad and I and occasionally by Mason. It is a question that could be considered very controversial, evokes incredible emotion, and requires much thought to answer. And no matter how you reply, there is no wrong answer, even though the words you say may be met with anger and objection, which is only normal when you are dealing with a question as powerful as "If you could cure Camryn tomorrow, would you?"
Now, although Brad and I love our daughter just as much as the other,and experience the joys and sorrows of Autism with similar emotion, we are on totally different ends of the spectrum(no pun intended) when it comes to our answer.
If you were to ask him today if he could give Camryn a magic pill that would take away her Autism, I can absolutely, positively guarantee that it would take him no less than a nano-second to say "Absolutely!" And I can say this with such confidence because we have had this conversation more than once. Does this mean he doesn't love Camryn the way she is? Absolutely not! While it was extremely hard for him to accept her diagnosis, he has been the most incredible father to her, holding a very special place in his heart for this little girl, wanting to protect her from the world. Since she was a baby, he has always had a special adoration for Camryn. While he loves her no more than he does Mason and Natalie, it is a different kind of love, and I think any parent with more than one child can understand this, loving each of your children just as much but in different ways. While we watched Mason breeze through her milestones, excel in school and become an incredible little artist, we watched Camryn travel down the road slowly, with no milestones in sight. We watched her struggle in school eventually being moved to a lower functioning classroom when she was three and now at seven years old watch her with a crayon and paper, unable to make even a straight line. And as we watched Natalie rollover, sit up, crawl and walk just as she should, talk and laugh and run with the other little girls, and begin to follow in her oldest sisters footsteps as an artist, we watched Cams hesitate at the bottom of the playground steps, unsure of her balance,her sensory issues kicking in, running over to other children and pulling their hair and biting herself out of frustration. A heartache for any parent, but I think, and this is just my opinion, that men tend to have a harder time dealing with a child who has a disability because it is a mans nature to "fix" things. And I'm not saying Brad saw Camryn as "broken", I'm saying that as a father he wants his children to have everything in life and knowing that Camryn won't have the same experiences and opportunities as her sisters frustrates him to no end, because there is nothing he can do about it. Does his face light up when he wakes her in the morning and the first thing she does is snap (if you know Cam you know snapping is her signature move)? Of course. Is he overcome with love when at the end of the day she gives him a hug, even if it is rigid and quick. Absolutely. And does he display her picture in his office along with her sisters, just as proud of her as his other two daughters? Check his desk, you'll see her silly little face. But, if someone came to him and said they could cure her, take her Autism away forever, it would be a done deal. And this is because, while he loves Camryn for all she is, he wants more for her and wants her to have all the opportunities her sisters will have and that is all any parent wants for their kids.
Now I on the other hand, have a totally different perspective. And again, neither one of us is right or wrong. While I completely share in his wishes for her, I see an incredible beauty in her eternal innoncence. And I am being totally selfish here I know, but Camryn is unlike any other child I have ever met, and I have experienced things with her, both good and bad, that I never would have had she been a "normal" child. I think most moms dread the day when their child doesn't want to be hugged or kissed or tucked into bed. Or the days when you pick them up from school and they are less than thrilled to see you, already sporting an attitude two seconds after getting in the car. Or the day your daughter comes home crying because the boy at school she has a crush on asked a prettier girl to the dance. Or the night your daughter doesn't come home because another boy thought she was even prettier than that girl. All those things are coming my way with Mason and Natalie, and I dread them. But with Cams, because she sees the world differently, those things will never be an issue for us. When she gets off the bus and sees me, it's like she hasn't seen me in months, She shrieks and flaps in joy at the sight of "Mama". When I wake her in the morning, she is never filled with fear of a test or bullies at school. She always, always, always wakes with a smile and laugh, snapping and saying " I like wet food" "Wanna pet Ri-Ri". She has no worries, at least none that I can tell and her only fear is that her sisters will eat the last pickle or she won't be able to spin in the chair at Nanny's house. While Mason and Natalie are always wanting for more toys, more clothes, the usual kid things, Cams is completely content with a plastic tupperware, a few trinkets small enough to fit in it, and a spoon to stir them with. She loves money, but not for what it can buy, as she has no concept of that, but for how it feels in her hands, often holding onto coins while she sleeps and just last week "playing" with a dollar bill for an hour and half in the car, folding it,flapping it and pressing it against her mouth. And I am not at all saying that her Autism is all roses and sunshine, because it so isn't, but it has so many qualities that are beautiful and endearing. And yes there is the biting, the scratching and screaming out of frustration because she can't tell me what she is feeling. And there is the sadness and anger I feel for not having the perfect family I dreamed of. And there is the resentment of those around me who go through life never knowing the struggle of a child with Autism. And there is also the sadness of watching my other girls cry because Camryn has hurt them, or has ruined something of theirs or has caused us to leave somewhere fun early because of her meltdowns. Sometimes it sucks. Sometimes it's hard. But, that's life, Autism or not, and I believe in my heart that my children, as well as Brad and I, are becoming better stronger people for having Camryn in our life. And while the thought of Autism being taken away, hauled off like trash to the junkyard is sometimes enticing, at the end of the day I say "No Thank You!" Yes, she would have a normal life, but who's to say "normal" is better? Normal life, while filled with happiness and joy, is also littered with pain and sadness, and if I can go to sleep at night knowing that one of my children will know nothing of the ugliness of the world, then I can sleep in peace.
And I mentioned in the beginning that Mason has also asked the question, but forgot to mention, she has also been asked it as well. And her answer could not make me more proud. She knows how Brad and I feel about it and she takes from both arguments, but in her eyes, her older sister, nine year old, innocent clear blue eyes, she sees Camryn as just Camryn. And even though Camryns Autism sometimes has her screaming and crying, asking "Why do I have to deal with this?" that is still her sister. Her little sister who says crazy things at the dinner table, making her spit out her drink in laughter. Her little sister who adores her so much that she cries to hold Mason's hand over mine.The little sister who kids at school sometimes make fun of to which she tells them! The little sister who has inspired her to work with Special Needs children when she grows up, already planning a center she wants to open called "Camryn's Corner", where children can come and do all the things that Cams loves to do, particularly pet all kinds of animals. She loves Cam just the way she is and although it is a big question for such a little girl, I truly believe her when she says "I wouldn't trade Camryn for a million dollars!"

Sometimes it's good to be different

Ok I'm back! Haven't posted in a few days becuase Brad was out of town for the weekend and I don't think anything else needs to be said. So, having survived a very busy past couple of days, I am finally regaining some sanity while the kids are in school and Natalie is at my mother-in-laws (thank God for her!!!) Right before I dropped her off she was talking about all the people she loved. She started with the all stars, me of course, Daddy, Nanny, Gigo(my mom), Riley(the dog), and then finished up with Pug(her stuffed dog) and Mason, with a long list of names in between. There were the usuals and some I didn't expect, but nowhere in her rambling professions of love for people did Camryns name ever come up. I kept waiting, figuring she would be mentioned right after Mason,you know, in the sister category, but no, not a word about Cams."Is there anybody else you love?" I asked, hoping it might alert her to the fact that she forgot to mention her other sister. "Nope, that's it!" she replied, perfectly content with her list. "What about Cams? You didn't say you love Cams!" "I don't wuv Cams! She hurts me and she hurts Mason and Mason is my best fwend,so I don't wuv her!" she said emphatically and then went back to brushing Pug. Now this isn't the first time I have heard her say something like this. She often times talks about how much she loves Mason and how Mason is the bestest friend she ever saw, regardless of the fact that Mason vocalizes on a daily basis how she wishes Natalie didn't exist.Yes, it's very endearing. While I think it is so sweet and incredibly precious that Nat feels this way about her older sister, I can't help but wonder what she feels for her other older sister, the not so bestest friend she ever saw, the one that tends to be a little more on the aggressive side. "What about Cams?" I would ask, "Is she your bestest friend too?" No,she pulls my hair, I don't like her! I know, Mason can be my best friend and you can be Cams best friend!" "Okay", I say, thinking well that works out great as I already am Cams best friend seeing as I'm pretty much the only one she can pinch, scratch, bite, kick, and pee on and I will still want to hang out with her. The other kids? Not so much.
And it's not just Natalie that feels this way. Mason also has a hard time dealing with Camryn's aggression and screaming, and who can blame her? I am 34 and still have to stop short of hurling myself off the roof when Cams is in her room screaming and "growling" for what seems like an eternity. So how can I expect a 9 year old child to have any more patience than I do when she is trying to watch T.V. and her sister is creating so much commotion that even at the highest volume, the show cannot compete with Camryns vocal cords. Or in the middle of the night, let's say at about 3:00 a.m., when Camryn wakes up for no apparent reason, as she often does, and doesn't just wake up, but wakes up screaming at the top of her lungs, standing at her gate, waiting for me to let her out. I'm way on the other side of the house and these outbursts startle the living crap out of me, so I can only imagine how it must feel to be just across the hallway when this happens. And sometimes I go get her, and other times I let her scream, knowing she will eventually lay back down and I can't let her think that she can keep doing this. But while we wait it out, it is comparable to seven inch nails scraping down a chalkboard, basically pure and utter torture.And again, I am on the other side of the house, 34 years old and her mom. So why should I expect her older, but not by much sister who did not carry her in her womb for nine months and therefore has no maternal affection for her AND has to get up bright and early for school, to wait it out calmly, understanding the need to teach Camryn that when she wakes up she has to learn to quietly go back to bed? I don't know why, but I do. Often times Mason will get so frustrated that she starts screaming too, which then wakes up Natalie, who also chimes in, which then aggravates Brad who has to get up in a few hours, which then has me completely crazy out of my mind and on the war path to Mason's room where I yell at her for yelling at Cams who is yelling at who knows what. And while the words are coming out of my mouth, I am thinking to myself, "How can you demand this little girl to have any sort of self control when you don't have any yourself?" But at three o'clock in the morning, with three kids screaming and a frustrated husband wanting you to shut them up,that's as good as it gets, so forgive me if I don't stroll into the bedroom twirling a pink parasol,sit on the edge of the bed and have a heart to heart talk about feelings and then curtsy on my way out the door. Eventually the screaming stops and we manage to salvage a couple more hours of sleep and the next morning I feel like a major contender for the title of "Worst Mother of the Year." I always make sure to talk about it with Mason on our way to school though, when Camryn is on the bus and we can have an uninterrupted conversation. I apologize for yelling, explain to her that it wasn't the right way to handle it, that I understand how she is feeling and how frustrating it can be to be Camryn's sister. I acknowledge all that she goes through and all that she has to sacrifice because her sister has Autism. I let her tell me how she feels and let her know that no matter how ugly her thoughts, they are normal. Even kids with "normal" siblings have days when they wish they would disappear off the face of the earth never to return again. Why, I had many a day when I would have been perfectly happy with aliens abducting my older brother, whom we now refer to as "Uncle Tommy". He drove me insane with his incessant gas and adoration for giving wedgies. But at the end of the day, he was my brother and for all the annoying things he did, I loved him, after all somebody had to. And I try to explain that with Cams, most of the things she does are not intentional. She is not trying to jolt us all out of bed in the dead of night just to see us all in a tizzy. She wakes up and get's startled herself, and not being able to walk out of her room because of the gate, she screams, because she is not able to put into words how she is feeling. Whereas if Mason or Natalie were scared they would simply come to my room and tell me. Mason nods in understanding. She's a very smart girl and I know she already knows all this stuff I'm telling her. I just kinda have to say it, it says so in the Mom book.  And then we talk about how when Camryn pulls her hair or pinches her, it's not because she dislikes Mason, but because she is obviously frustrated or upset, or sometimes even excited and when Autsim has her tongue, she lets her hands do the talking. Again, Mason will nod, because again she knows all this and everything else I go on to say. And while it is comforting to know your mom understands, it still doesn't take away the anger, frustration and resentment of a nine year old little girl, who has been forced to grow up in a non-traditional manner. She often says, "None of my other friends have to deal with a sister like Camryn! I hate Autism! Why do I have to be different?" And it's true, none of her other friends have sisters who scream and bite themselves in the car on the way home, or who cause the whole family to leave a restaurant early because they can't take the stimulation anymore, or who pinch their skin and pull their hair when they are trying to read them a book. And for those reasons, my heart breaks for her. But, then I remind her how none of her other friends have a sister who says some of the craziest things you will ever hear that make us roar in laughter, or a sister who runs over to them in the cafeteria at school calling "Sister Mason, sister Mason!" biting herself out of sheer joy that her sister is there. But most importantly, none of her friends have a sister who, despite how far Cam has come and hopefully will continue to, will need them for the rest of her life and because of Mason (and Nat) will always have someone watching out for her, taking care of her, and never being alone. And that, I tell Mace, is something really, really special. And she knows that too, and she smiles a proud smile, because I know that makes her feel important, and special and... different than all her other friends. Only this time, it's in a good way.

Happy St. Patricks Day!

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

So I went to the concert and OMG, if there was any doubt in my mind that I love that man, it is no longer! Amazing performance, incredible singing and for a moment our eyes met and it was just the two of us and if it hadn't been for the other 15,998 people in the room, it would have been just perfect! lol Anyhow it was a great concert and a fun night out with my mom, so all was not lost. On Sunday, Brad and I took the kids to a local amusement park and I use the term "amusement park" extremely loosely. The town we live in has this "attraction" called KidStar that looks like it's straight out of the 1950's (and it very well could be) but it's basically a permanent "carnival" with a ferris wheel, carousel, giant slide, a few other small rides and a go-kart track. The kids love it and for your typical family, it's a good time. Now, for our family, it is....well, let's just say it's an experience, as most things we do as a family are. We have been there about 3 other times, each visit with a six month waiting period in between because it takes us that long to recover and forget before we brave it again. And usually when anyone suggests going there the look of pure terror on my face makes it very clear that the answer is NO! But maybe because I was still high from my night with Michael, or maybe because we had set the clocks forward and the loss of that hour of sleep was affecting my thinking I said "Sure!" when Brad suggested we take the kids to KidStar. The ride there was benign enough, except for Camryn repeatedly shoving her white tiger into Brad's face while he was driving, telling him to "smell it". She is obsessed with  having people smell everything lately and it is nothing for her to go up to a complete stranger, shove her blanket in their face and say"smell", which elicits some very strange looks as you can imagine. But whatever, so we get there and as soon as we hit the parking lot, Cam breaks into a brisk jog, Brad in tow.As we walk throguh the entrance, she makes a beeline for the carousel, naturally as she loves to spin. But of course to ride the carousel you need 2 tickets and to buy tickets you have to wait in line and to wait in line with Camryn you have to endure a few minutes of hell. She started screaming, dropping to her knees and biting her hand, you know, the usual. Kids were staring and parents were steering clear, but again, nothing we're not used to. Tickets in hand we head to the carousel and Cam makes a barrels through the crowd headed for the "baa-cheetah" as she calls it or what we would refer to as a cheetah. I manage to get all 65 solid pounds of her on top and buckled in and when the ride starts to spin, the look on her face is sheer delight. When the ride stops spinning however, the look...not so delightful. And explaining to her that the ride is over would be completely in vain as she simply does not care. I awkwardly manage to get her down kicking and screaming and as we walk past the ticket taker, staring at us in all his pimply faced adolescent glory, I say " She really likes this ride" to which he says "Oh", yeah a real conversationalist! We move on to the kiddie roller coaster, which Brad rides with her, because if you know me, you know I don't do roller coasters, kiddie or not. Again, the idea of being strapped in and going in circles really fast brings great joy to Cams and she is squealing and grimacing out of joy. People are staring, but so what. Mason, Natalie and I watch them go around, Cam totally freaking out and totally loving it. But agin, when the ride comes to an end, she is less than thrilled and this time it is Brad who wrestles her out of the seat, completely against her super strong will. The attendant, another greasy teen, just stares at Camryn and when I tell him she's just really excited, he gives a nervous Beavis and Butthead kind of laugh. Brad takes Mason on the roller coaster while Natalie, Camryn and I watch, or should I say while Natalie watches and I try to hold Camryn while she is arching her back and screaming "Wait your turn, wait your turn!" Good times, good times. After the roller coaster, we decide to try the go-karts, knowing full well that Camryn is not going take kindly to going second to Mason. When you have 3 kids and 2 adults the only way to ride go karts is one at a time, as an adult needs to ride with each of them. I knew it wasn't going to be pretty, but what choice did we have? There were 2 men waiting for their kids to get off and when Brad and Mason got on and Camryn started her antics, I didn't know who I felt worse for, them or me. They were obviously uncomfortable, and not knowing where to look as Camryn fell to the ground screaming, biting her hand and just basically flipping out. I kept telling her "Wait your turn, it's almost your turn" but it was pointless. No kid, autistic or not, likes to wait their turn. But most kids can tell you, even if it is in a whiny sort of way. The point is, they can express themselves in words.This is where Autism puts Cam at a disadvantage, and when words are not an option, frustration takes over, which is why she screams and bites herself. Having seven years of this under my belt, I completely understand, but strangers with "normal" kids don't know what to think and so come the stares and whispers. As I held onto her thrashing body, I looked around at the other families, smiling and laughing and just having a good time at KidStar and for a second I felt sorry for myself, wondering why our outings never go that smoothly. But then it was Camryns turn to ride. Brad buckled her in next to him and he, Cam and white tiger took to track. As they rounded the corner, I couldn't help but laugh out loud at Cams, biting her hand in joy this time, wind in her face, just loving it. Just having fun. As we walked to the car, I was totally exhausted. Autism is not for wusses, that's for sure. We did it though and that's what matters.We went out as a family to KidStar and lived to tell about it. We came, we conquered and we will not be doing it again...at least not for another six months!

"More Michael Bluble please"

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

Weekends with Autism, part 2

So my last post I mentioned that we were considering doing Busch Gardens over the weekend. Well, that didn't work out due to this very unseasonably cool weather we've been having. I don't like being all wet after a water ride on a summer day, let alone a breeezy, cool, not quite spring one. So, we postponed that trip for warmer weather. It worked out rather nicely though as I got a 24 hour hall pass and went to my moms for the night to regain a little sanity. This is something I do frequently and I have to give my husband major kudos for understanding my need to. Mothers of all kids need a break and not just on Mother's Day or their birthday. I'm talking on a weekly basis, as in girls night out, shopping at the mall, or just taking a walk with a good friend. Just being girls and forgetting about all the other roles you have to play day in and day out. And when you're the mom of an Autistic child, every day can leave you in tears, especially when you are trying to explain to your two other kids why their sister is screaming at the top of her lungs and trying to scratch them and fact is you don't even understand it yourself. Plus you're telling your nine year old to calm down when she gets frustrated with her sister and find a different way of dealing with it when secretly you want to set the oven to broil and then stick your head in. It's really hard dealing with the emotions of having an autistic child and struggling with all the feelings you have and then dealing with your other children's reactions to having an autistic sibling. This I will get into in my next entry. The point is, at the end of the day I am teetering on the edge of insanity so by the end of the week, if I don't have some sort of reprieve I fear I may go over the edge, never to be heard from again. And I am fortunate enough to have a husband who understands this. Because he works long hours, I am the primary caretaker during the week and the one dealing with the normal craziness with a side of Autism. By the time he comes home, I am ready to sign out. And while most families look forward to the weekend, as horrible as this may sound, I dread them, because keeping a child who does not watch cartoons, does not color, read books or play blocks, does not play on the computer or clean her room, and can not be left alone with her siblings for more than a few minutes at a time so no one gets hurt, entertained for twelve hours straight is nearly impossible! It's really hard to understand unless you've been there, but on Saturday mornings when  Mason and Natalie are watching cartoons peacefully on the couch and then Camryn goes over and pulls their hair or starts screaming at something, it makes me wonder what it must be like to have a "normal" Saturday morning, the kind I had when I was a kid. So, when the weekend rolls around, often times Brad and I do a trade off of sorts. He goes to the gym for a couple hours and then when he gets home, I drive an hour and a half north to my mom's house and just...be. Most of the time I take Mason and Natalie with me and they either spend the night with my brother or stay with my mom and I, which is still a break, a break from Autism. This may sound so ugly to some, as if I want to get away from Camryn, and that is not it at all. I love her and the time we spend together is precious to me. But because Camryn is different, she doesn't enjoy doing the same things as most kids. To her staying at my mom's house would be fun for about an hour and then she would start getting antsy, needing her room, her things and sleeping over...forget about it! We tried that twice and it was, let's just say, not good. So, Camryn stays home with Brad and they spend one on one time together, which is how Camryn functions best. She loves it, he loves it and it works out great. And Mason and Natalie get out from under the shadows of Autism and just be little girls, running on the playground until they're ready to leave instead of until Camryn has a meltdown or buliding a city of blocks without Camryn knocking them on the head with one. The only negative is that Brad and I don't get to be together as much as we'd like and that can be hard on a marriage. A marriage that is already against the odds just by being a marriage, as the divorce rate is at 50% and then throw in the whole "special needs" child thing and the divorce rate for that is 80% , so I 'm no math whiz, but that adds up to 130% of odds against us, which means the fact that we still even speak to each other is pretty impressive! Having an Autistic child puts strains on your marriage you never anticipated when you said I do. There's nothing in the vows about that. It takes so much work, understanding and reassurance that yes, we can get through this, we have to, this is our life and no one else is going to live it for us. The way we do things may be a bit unconventional, me leaving for the night, him going out with a buddy on Sunday, taking turns "having fun", but it's what we have to do to get by, to stay sane and most importantly to stay together.We go out together a couple times a month and I love those times. When we're just Brad and Eve, a couple out on a date, and for a while we're just like everybody else in the room. And we also go out with the kids, but it's just not the same as taking your everyday family. There are challenges that people with typical kids never even think about and sometimes it can be more work than staying home. We do it for the kids so they have the experience and the memories (however scary they may be) lol. So for all you moms out there who are blessed with healthy children, when the weekend rolls around and your kids are lazily watching cartoons as you and your husband make plans to go the park or the movies, enjoy it and never take it for granted. I long for those simple times.

Weekends with Autism

So, the weekend is coming and for most families that means planning fun outings with the kids. The beach, (Well maybe not yet,unless you're from Canada!), the movies, out to dinner, etc.) But at our house, the weekend plans work a little bit differently. Because, when you have a child with Autism, you don't just say "Hey, wanna go to the movies?" or "It's a beautiful day, let's take the kids to the playground". No, we haven't said that in....let's see now.....ever! This may not be true for all kids with Autism, but with Camryn, there are certain things you just don't do and certain places you just don't go, unless of course you feel up for a major challenge. Take the movies for instance. Do you have any idea how much I wish I could fill my purse with all kinds of goodies and take my three girls to see the latest animated adventure? What must that be like to have your child ask you "Mom, can we go see Alice in Wonderland this weekend?" and be able to say "Sure!" with your only cause of concern the fact that admission for five to the movies is equal to your car payment. No, not at our house. Now my kids go to the movies. Let me be more clear, 2 out of 3 of my kids go to the movies and SOMETIMES it is with Brad and I, but rarely. Most of the movies that Mason and Natalie have seen, and they have seen almost every movie that has come out, has been with my brother. He takes them for the weekend and they go to dinner and the movies and eat popcorn and candy, drink too much soda and stay up too late. Basically, they have a totally awesome time. And I'm so happy for them that they have those experiences with their uncle. But I would be lying if I said I wasn't just a tinge(okay a boatload) jealous of the fact that while he's out on the town, laughing and having the great time I should be having with my "normal" kids, I am at home, trying to figure out what entertains Camryn this week, feeling guilty that I am not with Mace and Nat and feeling guilty for wishing things were different. Now, before you think I am a horrible, horrible person for referring to two of my kids as "normal", you have to know me really well and know that I am not winning any awards for political correctness and I mean nothing derogatory by it. The fact is, that by society's standards, Mason and Natalie are "normal" and Camryn is not and if you ask me, one is no better than the other.I love all my girls for who they are and I think Camryn is just as amazing as her sisters, but when it comes down to the stereotypical image of a "normal" child, Cams is not.
So, this weekend we are thinking of going to Busch Gardens, as a family. Sounds fun right? Well, yes and it probably will be, BUT, going to Busch Gardens Walker family style requires more than a ticket and change of clothes. In fact, the planning and preparation involved could be compared to planning for a hurricane. You need supplies, medications, hiding spots and most importantly....emergency evacuation routes!!!
While Mason has been to Disney several times and Busch Gardens once, Camryn has never passed through the gates of a major theme park for my fear that it will put me over the edge and I will be escorted out in a staright jacket. I did attempt Downtown Disney with her two years ago, where I had to restrain her kicking and screaming in the line for the carousel, while mothers in sweater sets and glass slippers watched in horror. And then there was the incident in the store where Camryn grabbed one Disney character after the next off the shelf, screaming and biting herself when I took them away, before grabbing a total strangers bag right out of his hand.
It's taken me that long to consider trying it again and even though she is older now and more repsonsive she is also older and bigger and louder and stronger. As with all kids, waiting in line sucks, but with Camryn, waitng in line is painful, literally. She twists, pinches, screams,bites herself and throws herself on the ground, which is her way of telling me (and everybody within a 5 mile radius) that she doesn't want to wait. And while all this is certainly reason to turn into a total agoraphobic, I want her to experience these things just like her sisters, just like a kid. It's such  a crossroads, where on one hand I want her to be like a normal little girl and be able to do all the things I did when I was her age, but on the other hand I have to be realistic and remember that she is not a normal little girl and in fact sees and experiences the world very differently than I did and some of the things I enjoyed she simply does not understand.
That being said, I know she will love Busch Gardens because she loves animals and is obsessed with tigers (She carries around "white tiger" everywhere she goes) and there is a great new area where you can get face to face with the tigers, which I know will rock her world. The primate exhibit, again she will love and there is a safrai ride that I'm pretty sure will throw her into total sensory euphoria.
Now, the parts that concern me and make me curse Autism are the aviary, where birds fly free for visitors to touch. Of course she will freak out in joy, but will there be as many birds living when we leave as there were when we entered? Anybody who knows us knows one of our favorite sayings is "Camryn loves animals to death" (and we have the corpses to prove it)lol  Because of her sensory issues, she goes at things hard and that's fine if you're petting a rhinoceros, but an African finch? Not so much.
Also, there is an awesome "jungle treehouse" play area for kids to run free, climb nets and navigate through tunnels and play areas. Again, Camryn would have a blast , BUT, I cannot let her go up there for fear that she will, well...scratch someones eyes out. She is aggressive towards other kids for reasons I don't understand and often times scratches, bites and hits them, hard,which I cannot risk happening. So we will skip the playground and I will envy the parents who sit back and relax while their kids run free and play.
The rides? We'll go on them, and if I'm correct, I think Busch Gardens has a policy for "special" guests that allows them to go the front of the rides to avoid major meltdowns. And for anybody who says "That's not fair!" I say,"Go to the front of the line with my child. I will gladly wait here with your normal child."
This may sound like I am whining, or feeling sorry for myself, which maybe I am a bit. There are parts of Autism that really suck and sometimes I hate that things have to be so hard. And I know we all have things, challenges, and believe me, I am fully aware how blessed I am that this is the biggest thing on my plate. Sometimes, I just wish that one Friday I could pick up the kids from school and head to the movies with no worries of screaming, or injuries, or tantrums, but then I look at Cams, happy as can be with her dog bones in one hand and plastic cookie in the other, and I can't feel anything but love.

Sorry, we only watch "normal" kids

I just got home from the gym and I am feeling good! Between the elliptical and the treadmill, I got in 6 miles, which is a mile more than I usually do. I have been trying to stick to a schedule and work out 5 days a week while Mason and Camryn are in school, which usually works out great. Natalie goes in the gym child care program for an hour and a half, which gives her a chance to socialize with other kids her age and gives me a break from her usual constant chatter. :) But with spring break coming up in few weeks, I will have to make other plans because while the child care room takes children up to 9  yrs.old,which should be perfect because my kids are 3,7 and 9, they DO NOT take children with special needs. Soooo, while I could very easily drop off Natalie and Mason and go for a jog, it might be a little cumbersome running on the treadmill while holding onto Camryn! I have talked to the ladies who work there and asked if the YMCA offers any child care programs for special needs children and they just shook their heads, explaining how that would require all kinds of special training and room setup,etc., so no, there is no such thing. I wasn't surprised at all, as I have run into this issue in several other situations as well, i.e. Vacation Bible school, story time at the library, etc. Basically all the typical extra-curricular things setup for kids ...as long as they are "normal".
Now, I am not saying "Oh poor me, I can't go to the gym for a week because I have an atypical child", although it does suck, but it really upsets me because as if moms of kids in general don't need an outlet like working out, mothers of children with special needs REALLY need an outlet, I mean REALLY! And thank God Camryn is old enough to go to school during the day so I can go in the morning. If she were three and I wanted to work out, which she was and I did, I would have to buy a treadmill that took up half the house and then strap her into the stroller and put on a Baby Einstein, which as we all know, lasts 30 minutes, but by the time I got it started, got on the treadmill, got on my headphones, and got walking, that annoying lady who came up with Baby Einstein came on the video, which again we all know means it is almost over, and my acutal workout time added up to about 10 minutes. I know this because I did this for about a week before I gave up and just bought bigger pants!
So, for all those women out there who want to join the gym and be like all the other moms in their cute gym outfits, smiling big as they wave good bye for an hour or two to their little one, savoring this alone time, just what do we do if we happen to have a child that cannot go into the child care program? Call a babysitter? Yeah, but that costs money and it isn't easy to find sitters who are qualified. Wait until your husband gets home to go? Yeah, I guess, if you want to go run a 5k at 7:00p.m AFTER you have chaufferred your kids, done mounds of laundry, swiffered the house, put away mounds of laundry, made breakfast and lunch and dinner, then cleaned up breakfast, then lunch then dinner, helped with homework, washed 3 heads of hair, brushed 3 heads of hair, done more laundry, etc. Who has the energy for that? I know what you do, you just don't go and are reminded once again that your child is different and you can't do "those things".
So seriously, I am curious, are there any gyms that cater to families of special needs kids? And if not, why??? These parents need to work out and have some "alone"time just as much , if not more, than the average and I think it stinks that most of them can't! I'm totally on this! I am going to make it my mission to either find a gym that has or will implement a childcare program for special needs children,and if I can't then I will start one myself.  I wonder if I can have it open by Spring Break? lol