Okay so after my little rant the other day I am feeling better. Still frustrated with the current situation and behaviors, but moving forward with answered prayers of strength to face another day of screams and aggression. And my poor little Cammy......if it wasn't bad enough that she was stung by yellowjackets last month and then broke out in itchy welts on her body, this past Tuesday she came home from school with some seriously red cheeks and chin. I took her to the doctor and was told she had Fifth's disease, which is not nearly as horrendous as it sounds. It is a mild virus and by the time the rash presents, the virus has passed. It is only a serious threat to pregnant women and people with compromised immune systems. I was told to give her Benadryl and by the weekend it should be gone. Well, as of this morning, it was still there and not only is it red, but now her skin is scaly and her chin looks swollen. I'm not sure if this is a result of all the ithching she has been doing or if something else if going on. She is constanly scratching at it and when I ask her if she's itchy takes my hand and places it on her face as she whimpers. It breaks my heart.
Summer is approaching like a bullet train and I am trying my hardest to break my chronic procrastination habits and get a plan in place before the first of 78, thirteen hour days that need to be filled down to the minute. And first things first was a trip to the YMCA to sign Miss Cam up for Camp COAST. Last year we did all seven weeks of camp because summer school, or Extended School Year,as it is now referred to in the upmost political correcness, was not an option since we had just moved back to this county. This year I was planning on doing just three weeks of camp and then the four weeks of ESY, thinking our wallet would fare so much better. But the thing about summer school is, frankly it's a tease. It runs from 8:30 to noon. I totally appreciate the break, really I do, but what do we do from 12:01 to 7:30? With Mace and Nat, the list is endless....go to the movies, the beach, the playground, the mall, nature park, paint your own pottery, stay home and play, etc. But Cammy don't play that...any of it. I heard about an after care program that was being held at the summer school site exclusively for Autistic children. I emailed the coordinator regarding the price and to my surprise was informed that it was $15.00 an hour, four hours a day and a MINIMUM of four weeks of care was required. Sixty bucks a day? Ummmm, we'll pass. I was so bummed because I really wanted Cams to go to summer school for the consistency as her current classmates and classroom assistant, who I adore, will be there. But with the short hours, it is a real strain on my other two and their summer plans. I know it probably sounds like I am trying to get rid of Cams during the day and if I was to be perfectly honest, I am. But not because I don't love her or want her to be part of the family. It's because I do love her, as well as Mason and Natalie and I have to take everybody's wants and needs into concern when I make these decisions and as far as summer goes, Camryn gets nothing out of staying home with us except for a constant chanting of "No!" and extreme frustration. I would love nothing more than to be able to wake up on a sunny summer morning, tell all three of my girlies to put on their swimsuits, grab their flip flops and hop in the car 'cause we're spending the day at the beach. I would pack us some PB&J's, bottled water, some grapes, bring a beach chair, some sand toys and watch my kids build sandcastles and splash in the surf the way I did as a child. And for the past eight summers I have tried that, always in vain. Although Cam loves the water and digging in the sand, the beach just doesn't work for her right now. She needs constant supervision and will take off and attack a nearby child in a heartbeat. God forbid another family has the same idea we do and sits within a ten foot radius of us, exposing colorful buckets and shovels to Cam. She has no concept of asking, and so she goes over and grabs whatever looks cool, destroying castles in the making and pinching anyone in her way. It's really not a great way to make friends at the beach. She will go into the water without any concern that it could abduct her with it's current or fill her lungs in seconds. I have to watch her like a hawk, which means nobody is watching my other two. Out of the water she only likes to sit on the sand for a brief while before she stands up and starts shouting and signing "Done! All done!" She then proceeds to strip herself of bathing suit and swim diaper, not liking the way wet clothes feel on her skin. A whole twenty minutes have passed and I haven't sat down once, the kids haven't even finished the castles mote and Cam is over it. Yeah, really rather not do that this year.
So, instead of summer school I decided to put Cams in camp all seven weeks again this year. If it wasn't so expensive there would never be any question....going all summer would be a given. And really, saying it's expensive is a joke because it comes out to less than five dollars an hour.I mean, where are you gonna find that? But when you add it all up it is over a thousand dollars for the whole experience, but really, it is sooooo worth the money. They are going sailing again this year, doing the horseback riding every week, swimming lessons, and going to Big Cat Rescue, which I know it totally going to put Camryn in freak out mode as you all know her adoration for "White Tiger" and "Ba-cheetah's". She is going to have the time of her life and that is worth every penny. It's just a shame though that there aren't more camps like these available with funding provided by the government. It really puts a dent in your wallet and then if you have typical kids who want to do a camp, forget about it! Thank goodness my Dad is very generous and helps with the expense. And my mom always lets Mason pick a camp each summer that she will pay for. Because Mason has a love of animals, I signed her up at the zoo to take a weeklong "Junior Zookeeper" camp, which I think she will really enjoy. She will also take one week of "Rocketry" at the Science Center and one week with Natalie in puppetry at "American Stage". Other than that, I don't like to tie up the summer because after all summer is supposed to be lazy and carefree. All of my friends with school-aged children talk about how they love summer because of the absence of schedules and freedom to have fun. Whereas I cringe at the thought of having to entertain Camryn from sunup to sundown when nothing holds her attention more than twenty seconds. Mace and Nat? I am thrilled about summertime with them. I want to them to have the summers I had as a kid. Sleeping in, beach,pool,movies, friends over, etc. It is just so damn hard to make it happen with Autism always trying to steal the show.
I am hoping for a good summer. Thank God for Camp COAST and all the amazing people who make it happen. It is a blessing for us and so many other families and I hope one day it's not a novelty, but the norm. I hope that come August 22nd, (the day school starts back, not that I am counting days or anything) that we can all look back on this summer as our best one yet. That means less screaming fits, fewer battle scars and maybe even, dare I say, no poopy panties. So here's to the sweet smell of sunscreen, handstands in the pool and terrific exhaustion at the end of the day. And to castle's of sand that stay standing, at least until the end of summer.
Friday, June 3, 2011
Wednesday, June 1, 2011
Sorry Fergie, But Big Girls DO Cry
I am sitting here with blood shot eyes and a tear streaked face. I just let myself have a good cry. Okay, maybe wailing sob would be a more appropriate description. Or quite possibly, it could be referred to as a tantrum. The dog left the room, so it couldn't have been pretty. I threw a metal spoon into the sink like it was a dart aimed at a bullseye. I kicked the kitchen cupboards and pounded my fists on the wall. It was a pure and utter display of days, months, years of frustration being released and remarkably well
choreographed to Camryn's incessant screaming. She is home today as the result of a rash on her face, which just as I told them, was confirmed to be non-contagious by the doctor.I like my girl to go to school because plain and simple I need it and so does she. Summer break will be here in 9 days and I do not want to see it until then. Right now as I type this she is in her room standing at her gate screaming bloody murder and banging her hands and head against the door. I'm sorry but people with normal kids do not have any idea whatsoever of this private hell. I am so envious of their "normal" behavior issues, what I wouldn't give to have that be my biggest struggle.
With it being the first of June today, I really intended to start out on a positive note. But emotions cannot follow a calendar and Autism doesn't give a f**k what day it is. I know I sound so bitter and truth be told, right now I am. I am definitely at a dip in the coaster. I feel so lost as to where to go from here. Where will we get help? When will things get better? Or will they?? Does anybody know how it feels to love your child so much but also dream of a life without them? The screams are so loud right now that my ears vibrate with each outburst. I cannot give in though. She has to learn to be in her room by herself and "play". I did this with Mason too, but she was one at the time.
I swear if the politicians who make the laws concerning the availability of ABA to families of Autism had to spend one hour in my very uncomfortable shoes they would see to it something was done, that is only after they have slipped back into their fine Italian leather loafers.
Things are flying over the gate now. Her flip flops just whizzed past me and she is beating out a rhythm with her head on the wall. She will be nine next January and is already seventy six pounds. What if things get worse? I can't even go there.
I wonder if Kim Kardashian has any idea what Autism is? Or if Jennifer Aniston has a clue that there are way more important issues than her hair style? They wouldn't last a mintue in my world. Not a f**king minute. And I'll never know a minute of theirs. And so is life. This is mine. More importantly this is Camryn's and I just wonder why?
Okay, so I feel better now, although Camryn is still screaming and banging her hands and head. I usually give her twenty minutes. It's been fifteen and here she is now in front of me with her babygate in hand. She finally broke it,as well as me, down in the process. And it's only 12:30...
I promise not to be so gloomy next post. This has just been a really trying month. Those who know me know I can always find a way to make it funny. And I have with these trials too. But sometimes I just need to whine and cry and scream and throw things. Basically pull a Camryn. Only difference is I can go back to being Eve and she has no choice but to stay Camryn. And for that I feel so sad for her...
choreographed to Camryn's incessant screaming. She is home today as the result of a rash on her face, which just as I told them, was confirmed to be non-contagious by the doctor.I like my girl to go to school because plain and simple I need it and so does she. Summer break will be here in 9 days and I do not want to see it until then. Right now as I type this she is in her room standing at her gate screaming bloody murder and banging her hands and head against the door. I'm sorry but people with normal kids do not have any idea whatsoever of this private hell. I am so envious of their "normal" behavior issues, what I wouldn't give to have that be my biggest struggle.
With it being the first of June today, I really intended to start out on a positive note. But emotions cannot follow a calendar and Autism doesn't give a f**k what day it is. I know I sound so bitter and truth be told, right now I am. I am definitely at a dip in the coaster. I feel so lost as to where to go from here. Where will we get help? When will things get better? Or will they?? Does anybody know how it feels to love your child so much but also dream of a life without them? The screams are so loud right now that my ears vibrate with each outburst. I cannot give in though. She has to learn to be in her room by herself and "play". I did this with Mason too, but she was one at the time.
I swear if the politicians who make the laws concerning the availability of ABA to families of Autism had to spend one hour in my very uncomfortable shoes they would see to it something was done, that is only after they have slipped back into their fine Italian leather loafers.
Things are flying over the gate now. Her flip flops just whizzed past me and she is beating out a rhythm with her head on the wall. She will be nine next January and is already seventy six pounds. What if things get worse? I can't even go there.
I wonder if Kim Kardashian has any idea what Autism is? Or if Jennifer Aniston has a clue that there are way more important issues than her hair style? They wouldn't last a mintue in my world. Not a f**king minute. And I'll never know a minute of theirs. And so is life. This is mine. More importantly this is Camryn's and I just wonder why?
Okay, so I feel better now, although Camryn is still screaming and banging her hands and head. I usually give her twenty minutes. It's been fifteen and here she is now in front of me with her babygate in hand. She finally broke it,as well as me, down in the process. And it's only 12:30...
I promise not to be so gloomy next post. This has just been a really trying month. Those who know me know I can always find a way to make it funny. And I have with these trials too. But sometimes I just need to whine and cry and scream and throw things. Basically pull a Camryn. Only difference is I can go back to being Eve and she has no choice but to stay Camryn. And for that I feel so sad for her...
Wednesday, May 25, 2011
Caution! Steam Ahead!!
So, if Maya Angelou knows why the caged bird sings, do you think there's any chance she might have a clue why the autistic child screams? Can you help me out Maya? Please?? Oh the screaming and the crying!!! And the screaming and crying from the other two about the screaming and crying from Camryn. If ever there were a cause for a mother up and leaving the family, I think this is a very justifiable one!! Of course I'm not going to run off in the night, though dreams of it play out in my head on a daily basis, but if I may be disturbingly honest, I don't know how much more of this I can take before I get out my overnight bag and set it by the door, just in case.
This is a vent session pure and simple. I have to get it out and now that Natalie is home with me all day again since Pre-K has ended, walking it out to the beat of my Ipod isn't an option. Therefore all of my pent up frustrations are now being fiercely typed out on the keypad. I know this is my life, I know I have to find a way to deal with it, and I'm trying to make lemonade, really I am, but dear God these are some sour a** lemons!!
Since it has been a while since I last blogged, there have been several occurrances that have pushed me into this downward spiral. About three weeks ago I asked Mason to pull Camryn in the wagon outside while I tended to Natalie and her freshly skinned knee. I ran a warm bath for Nat and left Camryn in Mason's care for a few minutes. As I passed the door I saw Mason doing her best to entertain Cam and my heart felt warm as I watched her dance around and sing to her sister. I quickly checked on Nat and then peered outside again to see Mace trying to swat something off her arm. Probably a spider I thought but then heard piercing screams and saw her running towards me in complete horror. "Mommy, mommy!!! I'm so sorry, I'm so sorry! Camryn.....the bees, they're on Camryn!! They're all over her!! I'm so sorry! I didn't know!" I raced outside to find Camryn buckled into the wagon, crying and covered in yellowjackets! I screamed and batted them away as I tried to get her unbuckled. They were swarming all around and I don't even remember actually getting her out. I ripped her clothes off and ran inside. A few followed us in and I was screaming hysterically, Mason was screaming hysterically and Camryn was crying and yelling. I stripped down to nothing, stripped Mason down and searched all of us for any remaining hornets. Standing there naked as can be, I threw Camryn down on the bed and began inspecting her to see how many times she had gotten stung. She was crying and kicking and twisting. I couldn't get a good look. She kept taking my hand and putting it to her eyes saying "Sting. Hurt". I looked at her face and sure enough she had been stung mulitple times directly under her eyes. They began to swell as did the bridge of her nose and she looked like she had been in a bar fight. The skin beneath them was purple and red. I noticed her middle finger on her left hand was three times its' normal size, obviously she had used that hand to try and protect herself and got stung in the process. I rushed her to the ER where they gave her steroids for the seven stings. I got out of it with just one and Mason by the grace of God had none! They told me to watch her for signs of further swelling, like in her throat and tongue. And watch her I did because one of the dangers of Autism is not being able to say when something doesn't feel right with your body. Camryn had no way of telling me if her tongue felt funny or her throat felt tight. It was a scary night. So after three days on the Prednizone, I thought we were in the clear. Two days after she finished the meds, her bus was extremely late coming home. I was just about to call the school when I spotted it turning the corner. As the doors opened I asked if there had been a problem to which the driver and the assistant answered simulaneously "Yes, a big problem!" They then went on to inform me that Camryn had bitten a small kindergarten student as she passed by Camryns seat. The bite broke the skin and really upset the child and her grandmother who called the school to complain. While I felt horrible for the child, at this point in the game the wow factor is gone. I am no longer shocked, stunned or overly emotional about anything Camryn does. I am constantly anticipating bad news, so when I hear it, I feel the appropriate emotions inside, but they rarely make it past my brain and heart to my face, I just don't have the energy anymore. "I'm really sorry that happened" I told them. I took Camryn inside and was in the process of taking off her dress when I noticed a large patch of red bumps on her chest. After getting her dress off completely I saw that they were also on her belly, her shoulders and under her chin. They looked like hives and she was putting my hand on them and saying "Itchy". OMG what was this now?? I called the Dr. and they said to give her Benadryl and watch to make sure they didn't get worse. Mayeb that was why she bit the girl. Maybe she was uncomfortable and so she bit someone. We'll never know. So for three days I gave her Bendaryl and put cream on her hoping they would go away. Well they didn't so I took her in to see the Dr and was told that they weren't hives, but a rash and that I needed to take her to an allergist. For real? Well I guess it makes sense seeing as that is the only specialist we haven't seen in this journey. That was a week ago and the rash is just now starting to fade. However it has been hell because Camryn has been so itchy that she is waking up at night crying saying "Put cream on it honey!!!" Yes, I am feeling so rested. And so is she. HA!
I now transport Camryn to and from school and that has taken a toll on the kids and me, as our mornings were fairly calm once Camryn left on the bus and afternoon pickup was pleasant when it was just Mace and Nat. Now I have to keep Camryn separated from her sisters while they get ready for school so she doesn't pinch them. She gets past me every now and then though and then the crying and yelling from everybody starts.
School is out in two weeks and my blood pressure gets higher as the count gets lower. Sure, there's summer school and camp but I want before care and after care, a live in nanny and an on call therapist (that one's for me) ;) Actually I'd settle for a day without screaming. Twenty four hours of normal motherhood. Fighting over toys, name calling, stuck out tongues? Bring 'em on. I can take it. But the head banging, the biting and pinching and scratching and the screaming! Why? Why it this happening? Why is she doing it? And why is this our life? I don't know. The Dr.'s don't know. Probably not even Maya Angelou knows. Maybe we shoud have just gotten a bird.
This is a vent session pure and simple. I have to get it out and now that Natalie is home with me all day again since Pre-K has ended, walking it out to the beat of my Ipod isn't an option. Therefore all of my pent up frustrations are now being fiercely typed out on the keypad. I know this is my life, I know I have to find a way to deal with it, and I'm trying to make lemonade, really I am, but dear God these are some sour a** lemons!!
Since it has been a while since I last blogged, there have been several occurrances that have pushed me into this downward spiral. About three weeks ago I asked Mason to pull Camryn in the wagon outside while I tended to Natalie and her freshly skinned knee. I ran a warm bath for Nat and left Camryn in Mason's care for a few minutes. As I passed the door I saw Mason doing her best to entertain Cam and my heart felt warm as I watched her dance around and sing to her sister. I quickly checked on Nat and then peered outside again to see Mace trying to swat something off her arm. Probably a spider I thought but then heard piercing screams and saw her running towards me in complete horror. "Mommy, mommy!!! I'm so sorry, I'm so sorry! Camryn.....the bees, they're on Camryn!! They're all over her!! I'm so sorry! I didn't know!" I raced outside to find Camryn buckled into the wagon, crying and covered in yellowjackets! I screamed and batted them away as I tried to get her unbuckled. They were swarming all around and I don't even remember actually getting her out. I ripped her clothes off and ran inside. A few followed us in and I was screaming hysterically, Mason was screaming hysterically and Camryn was crying and yelling. I stripped down to nothing, stripped Mason down and searched all of us for any remaining hornets. Standing there naked as can be, I threw Camryn down on the bed and began inspecting her to see how many times she had gotten stung. She was crying and kicking and twisting. I couldn't get a good look. She kept taking my hand and putting it to her eyes saying "Sting. Hurt". I looked at her face and sure enough she had been stung mulitple times directly under her eyes. They began to swell as did the bridge of her nose and she looked like she had been in a bar fight. The skin beneath them was purple and red. I noticed her middle finger on her left hand was three times its' normal size, obviously she had used that hand to try and protect herself and got stung in the process. I rushed her to the ER where they gave her steroids for the seven stings. I got out of it with just one and Mason by the grace of God had none! They told me to watch her for signs of further swelling, like in her throat and tongue. And watch her I did because one of the dangers of Autism is not being able to say when something doesn't feel right with your body. Camryn had no way of telling me if her tongue felt funny or her throat felt tight. It was a scary night. So after three days on the Prednizone, I thought we were in the clear. Two days after she finished the meds, her bus was extremely late coming home. I was just about to call the school when I spotted it turning the corner. As the doors opened I asked if there had been a problem to which the driver and the assistant answered simulaneously "Yes, a big problem!" They then went on to inform me that Camryn had bitten a small kindergarten student as she passed by Camryns seat. The bite broke the skin and really upset the child and her grandmother who called the school to complain. While I felt horrible for the child, at this point in the game the wow factor is gone. I am no longer shocked, stunned or overly emotional about anything Camryn does. I am constantly anticipating bad news, so when I hear it, I feel the appropriate emotions inside, but they rarely make it past my brain and heart to my face, I just don't have the energy anymore. "I'm really sorry that happened" I told them. I took Camryn inside and was in the process of taking off her dress when I noticed a large patch of red bumps on her chest. After getting her dress off completely I saw that they were also on her belly, her shoulders and under her chin. They looked like hives and she was putting my hand on them and saying "Itchy". OMG what was this now?? I called the Dr. and they said to give her Benadryl and watch to make sure they didn't get worse. Mayeb that was why she bit the girl. Maybe she was uncomfortable and so she bit someone. We'll never know. So for three days I gave her Bendaryl and put cream on her hoping they would go away. Well they didn't so I took her in to see the Dr and was told that they weren't hives, but a rash and that I needed to take her to an allergist. For real? Well I guess it makes sense seeing as that is the only specialist we haven't seen in this journey. That was a week ago and the rash is just now starting to fade. However it has been hell because Camryn has been so itchy that she is waking up at night crying saying "Put cream on it honey!!!" Yes, I am feeling so rested. And so is she. HA!
I now transport Camryn to and from school and that has taken a toll on the kids and me, as our mornings were fairly calm once Camryn left on the bus and afternoon pickup was pleasant when it was just Mace and Nat. Now I have to keep Camryn separated from her sisters while they get ready for school so she doesn't pinch them. She gets past me every now and then though and then the crying and yelling from everybody starts.
School is out in two weeks and my blood pressure gets higher as the count gets lower. Sure, there's summer school and camp but I want before care and after care, a live in nanny and an on call therapist (that one's for me) ;) Actually I'd settle for a day without screaming. Twenty four hours of normal motherhood. Fighting over toys, name calling, stuck out tongues? Bring 'em on. I can take it. But the head banging, the biting and pinching and scratching and the screaming! Why? Why it this happening? Why is she doing it? And why is this our life? I don't know. The Dr.'s don't know. Probably not even Maya Angelou knows. Maybe we shoud have just gotten a bird.
Wednesday, May 18, 2011
A Garden of Eden It Is Not
AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!
For any of you wondering how it's been going lately, there's your answer! This past month has been horrendous! Hence the lack of blogging.
I love my daughter dearly, but if I could send her away for a while all expenses paid the girl would be on a bus outta here! I am not sure how much more screaming, head banging and aggressive behaviors I can take before I leave out on a bus myself!
Camryn has always had issues, that's nothing new. But the past several weeks she has taken them to a whole new level and it is really wreaking havoc on the rest of the family. Mason and Natalie are being assaulted by Camryn on a minute to minute basis and I'm sure Riley is wishing she could go back to the pound. Our neighbors say they don't hear the screaming, so I'm assuming their homes are soundproofed. Yes, it's been bad....very,very bad.
Brad is still having to work long hours at our business, so it is I who get's the privilege of keeping Miss Cams busy before and after school and lately it is getting harder and harder to find things to hold her attention longer than a nano-second. It used to be that bath's would keep her subdued for a good thirty minutes or so. She insisted the faucet be on the entire length of her bath, and at the risk of being hanged by the water conservationist's of America, I kept it flowing relishing that thirty minutes of peace. The past year or so though, Camryn seems to have lost her fondness of leisurely bathing and we haven't been able to find an activity to take it's place. I mean nothing! It is such a luxury for me to tell Mace and Nat to go read or play Lincoln Logs and actually have them do it, whereas I could tell Camryn those very things and she would look at me as if I had a third eye in the middle of my forehead and then go tug on Riley's jowels. She requires constant supervision and if I have anything to do after 2:30 in the afternoon then I may as well put it on the next day's to-do list because once Cam get's home, the umbilical cord re-attaches. I follow her around as she transfers juice from one cup to another, unsuccessfully I might add, and wipe her mess before I take her hand off the refrigerator door for the ump-teenth time, then into the bathroom where if I'm lucky she'll go IN the toilet, wipe her, back to the refrigerator, into her sisters room where she single handedly destroys their Tinker-Toy TajMajal, leaving a wake of wheels and rods strewn on the floor and her sister's screaming and crying. Oh yes, I adore afternoons! Love them, wish there were more than a mere five hours to fill before bed!
And to add to the chaos, Camryn has begun to engage in self-injurious behaviors more than ever,as well as non-self injurious behaviors, which means everyone around her. She has always been known to bite her own arm and hand, whether it be out of excitement or frustration. And she also has a history of banging her head against the wall or floor, but not on a daily basis. These past couple of weeks have brought about more of both of these behaviors than we have seen in a while. And while it breaks my heart (and my skin) when she scratches and pinches the girls and me, it smashes it to smithereens to see her stand in front of the mirror on her wall screaming and repeatedly banging her head against it and all I can do is watch through teary eyes. Last Saturday I sat on her bed and cried as she banged her head against the mirror. She would do about five, then come to me crying, taking my hand and putting it to her head saying "Hurt. Did you hurt your head honey?" I tried to hold her but she didn't want to be touched and so I let her continue, remembering that I had once heard an autistic child say through typing that they hurt themselves because it felt like their skin was on fire. Is that how Camryn was feeling? I don't know. I hope not.
On top of the head banging, she has also begun screaming more. I have no choice but to put her in room when she hurts us. I put the baby gate up and she sounds as if I were hammering nails through her palms. It is so loud and it usually coincides with Mason doing her homework. Mason begins crying and shouting out how she hate's Camryn and how this is so unfair that she has to live like this and I just stand there, the screams shredding my eardrums, looking at Mason knowing she is so right, it is so unfair. It is then that I tell her I understand her frustrations, that I know how hard it is, but that this is the family God gave us and there has to be a reason, though it may not be revealed for many years. She is a baby and a young lady all wrapped up in one freckled face and she nods in agreement as tears wet her cheek and she scowls at her sister. "Bloom where you're planted" I tell her, thinking to myself how hard it is to bloom when you are constantly under the darkness of Autism.
Nat told me the other morning that it would be better with just two children, her and Mason. Wow, I thought to myself. Four years old and she already sees the stress and hardships her sister can bring. I laughed and said "It would probably be easier but Camryn brings us so much laughter and happiness, so I don't think it would be better". Truth is though, I have that very same thought on a daily basis. Only difference is, I'm too old to say it out loud.
I get in these moods where I think about sending Camryn to a group home. I fantasize about life without the screaming and the aggression and the heartache. Brad and I took Mace and Nat out to dinner the other night while Cam was with a babysitter and I had such a wonderful time! This was what it would be like if it were just the four of us. Brad ordered fajitas since Camryn wasn't there to touch the hot skillet. We took our time because we weren't under the constant threat of a meltdown. No plates were thrown across the table, we didn't even blink as little kids passed by within arms reach and we laughed and talked with our kids uninterrupted. It was great! And for a while I mourned again all over the loss of a normal life for us. But then I realized, I may not appreciate this time with my other two girls as much if I didn't know a life without it. I brought myself back to earth and reminded myself my life is what it is and I have to find the best way to deal with it.
I love Camryn so much and I know without a doubt I would not be half the woman I am today without her presence in my world. She has demanded that I change, that I grow. She has humbled me, broken me and fixed me all at once and I cannot ever forget that. She is a victim, a prisoner and I have to remember that when she is expressing herself in the only ways she knows how. If I couldn't write I would no doubt be banging my head and screaming. All these words inside and no way to get them out!
I have an appointment with the neurologist this month. I have spoken with an ABA clininc and am even trying to get on the payroll at Home Depot, as their insurance covers ABA therapy. I am trying to do whatever I can to make this life we've been given the best it can be. I'm trying to bloom where I'm planted, and in the end I should be one gigantic flower, 'cause Lord knows I've had plenty of fertilizer!
For any of you wondering how it's been going lately, there's your answer! This past month has been horrendous! Hence the lack of blogging.
I love my daughter dearly, but if I could send her away for a while all expenses paid the girl would be on a bus outta here! I am not sure how much more screaming, head banging and aggressive behaviors I can take before I leave out on a bus myself!
Camryn has always had issues, that's nothing new. But the past several weeks she has taken them to a whole new level and it is really wreaking havoc on the rest of the family. Mason and Natalie are being assaulted by Camryn on a minute to minute basis and I'm sure Riley is wishing she could go back to the pound. Our neighbors say they don't hear the screaming, so I'm assuming their homes are soundproofed. Yes, it's been bad....very,very bad.
Brad is still having to work long hours at our business, so it is I who get's the privilege of keeping Miss Cams busy before and after school and lately it is getting harder and harder to find things to hold her attention longer than a nano-second. It used to be that bath's would keep her subdued for a good thirty minutes or so. She insisted the faucet be on the entire length of her bath, and at the risk of being hanged by the water conservationist's of America, I kept it flowing relishing that thirty minutes of peace. The past year or so though, Camryn seems to have lost her fondness of leisurely bathing and we haven't been able to find an activity to take it's place. I mean nothing! It is such a luxury for me to tell Mace and Nat to go read or play Lincoln Logs and actually have them do it, whereas I could tell Camryn those very things and she would look at me as if I had a third eye in the middle of my forehead and then go tug on Riley's jowels. She requires constant supervision and if I have anything to do after 2:30 in the afternoon then I may as well put it on the next day's to-do list because once Cam get's home, the umbilical cord re-attaches. I follow her around as she transfers juice from one cup to another, unsuccessfully I might add, and wipe her mess before I take her hand off the refrigerator door for the ump-teenth time, then into the bathroom where if I'm lucky she'll go IN the toilet, wipe her, back to the refrigerator, into her sisters room where she single handedly destroys their Tinker-Toy TajMajal, leaving a wake of wheels and rods strewn on the floor and her sister's screaming and crying. Oh yes, I adore afternoons! Love them, wish there were more than a mere five hours to fill before bed!
And to add to the chaos, Camryn has begun to engage in self-injurious behaviors more than ever,as well as non-self injurious behaviors, which means everyone around her. She has always been known to bite her own arm and hand, whether it be out of excitement or frustration. And she also has a history of banging her head against the wall or floor, but not on a daily basis. These past couple of weeks have brought about more of both of these behaviors than we have seen in a while. And while it breaks my heart (and my skin) when she scratches and pinches the girls and me, it smashes it to smithereens to see her stand in front of the mirror on her wall screaming and repeatedly banging her head against it and all I can do is watch through teary eyes. Last Saturday I sat on her bed and cried as she banged her head against the mirror. She would do about five, then come to me crying, taking my hand and putting it to her head saying "Hurt. Did you hurt your head honey?" I tried to hold her but she didn't want to be touched and so I let her continue, remembering that I had once heard an autistic child say through typing that they hurt themselves because it felt like their skin was on fire. Is that how Camryn was feeling? I don't know. I hope not.
On top of the head banging, she has also begun screaming more. I have no choice but to put her in room when she hurts us. I put the baby gate up and she sounds as if I were hammering nails through her palms. It is so loud and it usually coincides with Mason doing her homework. Mason begins crying and shouting out how she hate's Camryn and how this is so unfair that she has to live like this and I just stand there, the screams shredding my eardrums, looking at Mason knowing she is so right, it is so unfair. It is then that I tell her I understand her frustrations, that I know how hard it is, but that this is the family God gave us and there has to be a reason, though it may not be revealed for many years. She is a baby and a young lady all wrapped up in one freckled face and she nods in agreement as tears wet her cheek and she scowls at her sister. "Bloom where you're planted" I tell her, thinking to myself how hard it is to bloom when you are constantly under the darkness of Autism.
Nat told me the other morning that it would be better with just two children, her and Mason. Wow, I thought to myself. Four years old and she already sees the stress and hardships her sister can bring. I laughed and said "It would probably be easier but Camryn brings us so much laughter and happiness, so I don't think it would be better". Truth is though, I have that very same thought on a daily basis. Only difference is, I'm too old to say it out loud.
I get in these moods where I think about sending Camryn to a group home. I fantasize about life without the screaming and the aggression and the heartache. Brad and I took Mace and Nat out to dinner the other night while Cam was with a babysitter and I had such a wonderful time! This was what it would be like if it were just the four of us. Brad ordered fajitas since Camryn wasn't there to touch the hot skillet. We took our time because we weren't under the constant threat of a meltdown. No plates were thrown across the table, we didn't even blink as little kids passed by within arms reach and we laughed and talked with our kids uninterrupted. It was great! And for a while I mourned again all over the loss of a normal life for us. But then I realized, I may not appreciate this time with my other two girls as much if I didn't know a life without it. I brought myself back to earth and reminded myself my life is what it is and I have to find the best way to deal with it.
I love Camryn so much and I know without a doubt I would not be half the woman I am today without her presence in my world. She has demanded that I change, that I grow. She has humbled me, broken me and fixed me all at once and I cannot ever forget that. She is a victim, a prisoner and I have to remember that when she is expressing herself in the only ways she knows how. If I couldn't write I would no doubt be banging my head and screaming. All these words inside and no way to get them out!
I have an appointment with the neurologist this month. I have spoken with an ABA clininc and am even trying to get on the payroll at Home Depot, as their insurance covers ABA therapy. I am trying to do whatever I can to make this life we've been given the best it can be. I'm trying to bloom where I'm planted, and in the end I should be one gigantic flower, 'cause Lord knows I've had plenty of fertilizer!
Thursday, April 14, 2011
Lost in Translation
I have never thought of myself as bilingual and that is a bit embarrassing, considering I took seven years of Spanish in school and all I can really say is "Hola, me llamo es Pedro", which clearly it's not. But the other day as I was listening to Camryn speak and found myself responding to really strange requests, I realized, I am totally bilingual, I speak Autism!
Because Camryn has a hard time putting words together correctly and prounounces things in her own dialect, many of the common words you and I would use come out a tad bit different. My favorite example is gum, one of Camryns all time fave things to chew on. While a stick or two would last most of us about twenty minutes or so, Camryn likes to change hers out every thirty seconds. It has only been in the past two years that I let her chew gum because I was worried she wouldn't understand that it's not something to be swallowed, so at six years old I gave her her very first stick of peppermint gum. Here's the funny part....when Camryn heard "gum" and the word "peppermint" used in the same sentence she put them together to make the word....are you ready.....government!! LOL So when she wants gum she says "I want some goverment". And when she's done with it and places the slimy wrinkled rubber in my hand she says "More "goverment" please"! And here's the best, when we are out and I give her gum she will shout "I love "goverment!" It is hilarious!!! At a time where people are really not all that thrilled with our country's leadership, they must really be wondering why our child is so gung ho about it!
Another of Camryn's phrases that cracks me up has to do with pretzels. Not just any pretzles, but pretzles coated in salt. The girl can eat some salt and a word of warning, do NOT eat pretzles or tortilla chips that Camryn has had access to because you will find yourself biting into a damp, soggy, and saltless snack. She likes to keep her loved ones sodium levels down! Any how, she associates pretzles with salt and has also put these two together. Whenever she wants a bag she will say " I want some "problem solved" and I know right away that she is talking about pretzles! And when we are at the grocery store and pass by the chip aisle she will shout out "I like "problem solved!". Again stares from the crowd and laughter from me.
This next one is a bit gross. When Camryn has to poop, she will go in the bathroom and say "Squeeze the meat out!" I have NO idea where this one came from and you can imagine the looks I get in public restrooms. Enough said...moving on.
Cams has accompanied me to the deli enough to know that I always order a pound of sliced turkey, and turkey is one of her favorite snacks. At home, she will go to the refrigerator, pull open the deli drawer and say "Turkey pound please". She signs the word more with her hands and keeps saying "Turkey pound. Turkey pound please!" When I give it to her she will answer "Thank you. I love the way you're sitting"! LOL She gets that from school I guess...cracks me up!!
A few weeks ago my mom and I were on a walk by the bay and we had Camryn in the stroller. There were several ducks in the water and I pointed to them and asked Cam what they were. "Look at the mother quack" she responded and my mom and I burst out laughing. In her eyes one of them was the mom and ducks quack, so there you go!
When I get Cam out of the bath she says "Paper towel please" which means she wants a towel. She refers to all music as "Michael Buble" and when I turn the radio down in the car she signs more and says "More Michael Buble please". When she puts her hand in the dog's mouth and get's her fingers wet, she finds me wherever I may be, wipes her hands on me and say "Eewwwww, teeth poop" and I don't miss a beat as I know exactly what that means. "Do you need wipes honey" translates into "I pooped!" and "My motrin hurts" means something is hurting on her! Smart girl, she knows I give her Motrin when she is sick. Anything that squirts from a bottle, whether it's shampoo or ketchup is "lotion" to Camryn and it goes everywhere lotion would go which can get really messy! When getting her ready for bed she says "Do you need a strawberry pull-up baby?" which means she wants me to put a pull-up on her. Not sure where the strawberry came from, but there must be a reason. "Cube-cubes" are kisses she gives to dogs,"licky-face" are kisses dogs give to her and "Ry-Ry" is every dog that she sees.
When over at my moms a few weeks ago, Camryn and I went next door to visit my mom's neighbor and good friend. Camryn knows her name is "Dale" but when she opened the door to greet us Camryn bit her hand in excitment and said "Hi next door!!" Dale and I cracked up and now Dale has a new nickname!
The list goes on and on and each one is cuter than the rest. You don't realize when it's an everyday thing how unique it is until you sit back and really think about. Each one of her sayings is a product of how she put the meaning and pronunciation of the words together in her brain. Obviously she is hearing what everything is,just how her brain translates it is so interesting. One thing that is understood by all is that Camryn brings so much joy and laughter to our life. You never know what you are going to get from one day to the next and that keeps it interesting. Who knows, maybe she has all the answers. Maybe all Congress needs to fix it's mess is a pack of gum and some pretzles. Government problem solved! Who knew it was that easy!
Because Camryn has a hard time putting words together correctly and prounounces things in her own dialect, many of the common words you and I would use come out a tad bit different. My favorite example is gum, one of Camryns all time fave things to chew on. While a stick or two would last most of us about twenty minutes or so, Camryn likes to change hers out every thirty seconds. It has only been in the past two years that I let her chew gum because I was worried she wouldn't understand that it's not something to be swallowed, so at six years old I gave her her very first stick of peppermint gum. Here's the funny part....when Camryn heard "gum" and the word "peppermint" used in the same sentence she put them together to make the word....are you ready.....government!! LOL So when she wants gum she says "I want some goverment". And when she's done with it and places the slimy wrinkled rubber in my hand she says "More "goverment" please"! And here's the best, when we are out and I give her gum she will shout "I love "goverment!" It is hilarious!!! At a time where people are really not all that thrilled with our country's leadership, they must really be wondering why our child is so gung ho about it!
Another of Camryn's phrases that cracks me up has to do with pretzels. Not just any pretzles, but pretzles coated in salt. The girl can eat some salt and a word of warning, do NOT eat pretzles or tortilla chips that Camryn has had access to because you will find yourself biting into a damp, soggy, and saltless snack. She likes to keep her loved ones sodium levels down! Any how, she associates pretzles with salt and has also put these two together. Whenever she wants a bag she will say " I want some "problem solved" and I know right away that she is talking about pretzles! And when we are at the grocery store and pass by the chip aisle she will shout out "I like "problem solved!". Again stares from the crowd and laughter from me.
This next one is a bit gross. When Camryn has to poop, she will go in the bathroom and say "Squeeze the meat out!" I have NO idea where this one came from and you can imagine the looks I get in public restrooms. Enough said...moving on.
Cams has accompanied me to the deli enough to know that I always order a pound of sliced turkey, and turkey is one of her favorite snacks. At home, she will go to the refrigerator, pull open the deli drawer and say "Turkey pound please". She signs the word more with her hands and keeps saying "Turkey pound. Turkey pound please!" When I give it to her she will answer "Thank you. I love the way you're sitting"! LOL She gets that from school I guess...cracks me up!!
A few weeks ago my mom and I were on a walk by the bay and we had Camryn in the stroller. There were several ducks in the water and I pointed to them and asked Cam what they were. "Look at the mother quack" she responded and my mom and I burst out laughing. In her eyes one of them was the mom and ducks quack, so there you go!
When I get Cam out of the bath she says "Paper towel please" which means she wants a towel. She refers to all music as "Michael Buble" and when I turn the radio down in the car she signs more and says "More Michael Buble please". When she puts her hand in the dog's mouth and get's her fingers wet, she finds me wherever I may be, wipes her hands on me and say "Eewwwww, teeth poop" and I don't miss a beat as I know exactly what that means. "Do you need wipes honey" translates into "I pooped!" and "My motrin hurts" means something is hurting on her! Smart girl, she knows I give her Motrin when she is sick. Anything that squirts from a bottle, whether it's shampoo or ketchup is "lotion" to Camryn and it goes everywhere lotion would go which can get really messy! When getting her ready for bed she says "Do you need a strawberry pull-up baby?" which means she wants me to put a pull-up on her. Not sure where the strawberry came from, but there must be a reason. "Cube-cubes" are kisses she gives to dogs,"licky-face" are kisses dogs give to her and "Ry-Ry" is every dog that she sees.
When over at my moms a few weeks ago, Camryn and I went next door to visit my mom's neighbor and good friend. Camryn knows her name is "Dale" but when she opened the door to greet us Camryn bit her hand in excitment and said "Hi next door!!" Dale and I cracked up and now Dale has a new nickname!
The list goes on and on and each one is cuter than the rest. You don't realize when it's an everyday thing how unique it is until you sit back and really think about. Each one of her sayings is a product of how she put the meaning and pronunciation of the words together in her brain. Obviously she is hearing what everything is,just how her brain translates it is so interesting. One thing that is understood by all is that Camryn brings so much joy and laughter to our life. You never know what you are going to get from one day to the next and that keeps it interesting. Who knows, maybe she has all the answers. Maybe all Congress needs to fix it's mess is a pack of gum and some pretzles. Government problem solved! Who knew it was that easy!
Monday, April 11, 2011
Moon Walk
These past few weeks have been rough. For some reason I have noticed a change in Camryn's behavior that is not very becoming. Thinking it could have something to do with her medications, I lowered her dose to once a day, but was disappointed to see that it really made no difference. It also crossed my mind that maybe she is acting out because Brad is gone so much with work. I know it has definitely affected the other two girls and me as well, so why would it be so strange to think Camryn would be different. We recently had a situation at our plant that has demanded most of Brad's time, leaving me basically as a single mom Monday thru Friday. He leaves at 5:00 a.m. and gets home at 8:30 p.m when the kiddo's are already in bed. He is beat, I am beat and it's not a good situation for any family and most certainly for a family of autism. With our list of places we can go that are "Cam-friendly" being extremely short, the girls and I don't go out much as a group except for car rides and really, how fun is that? But with spring in the air and the weather just too beautiful to resist, I found myself teetering on the edge of reason when I was invited to join a friend and her kids for dinner at the beach.
It all started Friday afternoon. Natalie was invited to a play date at the home of twin girls in her class. It was so nice for her to be able to get out and experience normal play without screaming in the background or fear of being assaulted. When I dropped her off I had Mason and Camryn with me as well. I really did not want to bring Cam in because she had just gotten home from school and that is one of her worst times. But I didn't know the mom too well and I had never been to their home, so of course I wanted to come inside and talk to her for a minute before I left my baby there. The mother was so nice and very understanding of Camryn, who I was holding onto with a death grip. She was tweaking out of excitement and wanted so very badly to "give them nice touches" but there was no way in hell I was letting her lay a finger on Natalies friends. I held both of her hands tightly in mine and she wrestled with me the entire time I spoke with the mom, trying to escape my grasp. After a five minute conversation about what Natalie liked to eat and what time I would pick her up, I was literally drenched in sweat. Why does it have to be so hard?
On my way home, one of my best friends called to see about getting together with the kids that night at the beach. Her husband also works late, leaving her alone with the kids most nights. I reeeeaaaally wanted to do it. I hadn't been to the beach in a while and the air felt so good and the idea of sipping on sangria while the band played and the sun sank into the water made me high just thinking about it. But I also knew that while it would be beautiful and tasty, it wouldn't play out quite so smoothly in reality. Mace and Nat would be fine, as usual, but taking Camryn to a popular restaurant filled with small children was risky and letting her run free on a crowded beach? Downright dangerous! My gut said "Are you frickin crazy?" and my head answered with "Yes, she's frickin crazy!" but my spirit said "You need this, just go for it!" and my friend said "Come on, it will be fun!" so I did.
I picked Nat up from her playdate and intended on leaving Mace and Cam in the car while I ran up to get her. The mom came to the door and we were small talking about the girls when Mason bursts out of my car running and crying that Camryn hurt her. Then Camryn scrambles out, biting her hand and barreling towards Mason and Nat, Mason starts screaming for her to get away, Nat hides behind me and I make a mental note to throw this womans number away because she is never going to want to see us again. I got everyone calmed down and in the car, gave a weary smile at the woman as she waved goodbye and headed out to the beach, crazy as hell!
Camryn got into the glovebox five minutes down the road and somehow made it to where it would no longer close. She emptied all of its contents and threw them at me. When she got bored of that, she started pinching me. She is so big now that she can reach me even as I lean as far away from her as I can. I was scolding her but she just kept pinching and I thought to myself "Really Lord? Really?"
We get to beach and I see my girlfriend pull in with her kids. The first things out of their mouths were "Don't pinch me Camryn!" The girl has a reputation. We cross the street to the restaurant and it is packed! The wait was thirty minutes which may as well have been thirty days because I knew it was going to be long. We took the kids out on the beach while we waited. The restaurant is right on the gulf. It has outside seating on two decks, live entertainment and a fabulous view of the sunset, so needless to say it's popular. We were not the only ones waiting on the sand. There were kids everywhere! All sizes, ages, ethnicities. It didn't matter, as I've said before, Camryn is an equal opportunity offender. She will pinch and scratch just about anybody, so naturally I am scanning the crowd like a hawk on the lookout for prey, making sure no little ones are within Camryns reach. She is oblivious, loving the feel of the sand on her feet, running in circles laughing out loud. It was one of those fleeting moments of normality where for a few seconds she is just an eight year old girl and I love seeing her like that. But it didn't last long as she lunged for a kid passing by and I grabbed her hands.
There were seven in our party between my friend and our kids. The restuarant could not seat us all together, so the three big kids and Nat had their own table and Cam sat with us grownups two tables away. She did well during dinner, but I could tell she wanted to sit with her sisters. I couldn't let her though, she would hurt the other kids and whoever may have passed by. I felt bad, but I knew it had to be that way.
After dinner the kids wanted to go back on the beach, so we did. The sun was setting, the band was playing and the sangria had been oh so delicious! We ventured out onto the sand again and Cams broke free to run in circles. I ran with her, sure to keep others safe if they passed too close. I wanted to relax, but that is not an option when you are in public with Camryn. The other kids were having so much fun. They were racing each other, laughing and reminding me of my own childhood often playing on the beach at dusk. I pointed up at the crescent moon and had no sooner said "Look how beautiful" when I turned and saw another moon...Camryn's! There she was, in front of the crowd, butt naked! She had apparently gotten some water on her pants from a chair she sat on and so off with her clothes!!OMG! She handed me her underwear and shorts and I laughed out loud! "I have never seen the moon go from a sliver to full so fast in my life!" I joked with my friend. I shimmied her pants back on and she fought me every inch. We told the kids it was time to go and Mason shouted out the she wished Camryn hadn't come. She has had way too many outings cut short because of Camryn and I felt for her. However, this was no time for a heart to heart, so we herded everybody back to the car. As we said our goodbyes I told my friend let's do this again, next time less kids and more sangria! She agreed. We drove home and I called Brad to let him know we were on our way. "We stayed until the moon came out" I told him and Mason and I burst out laughing. After all, what else can you do?
It all started Friday afternoon. Natalie was invited to a play date at the home of twin girls in her class. It was so nice for her to be able to get out and experience normal play without screaming in the background or fear of being assaulted. When I dropped her off I had Mason and Camryn with me as well. I really did not want to bring Cam in because she had just gotten home from school and that is one of her worst times. But I didn't know the mom too well and I had never been to their home, so of course I wanted to come inside and talk to her for a minute before I left my baby there. The mother was so nice and very understanding of Camryn, who I was holding onto with a death grip. She was tweaking out of excitement and wanted so very badly to "give them nice touches" but there was no way in hell I was letting her lay a finger on Natalies friends. I held both of her hands tightly in mine and she wrestled with me the entire time I spoke with the mom, trying to escape my grasp. After a five minute conversation about what Natalie liked to eat and what time I would pick her up, I was literally drenched in sweat. Why does it have to be so hard?
On my way home, one of my best friends called to see about getting together with the kids that night at the beach. Her husband also works late, leaving her alone with the kids most nights. I reeeeaaaally wanted to do it. I hadn't been to the beach in a while and the air felt so good and the idea of sipping on sangria while the band played and the sun sank into the water made me high just thinking about it. But I also knew that while it would be beautiful and tasty, it wouldn't play out quite so smoothly in reality. Mace and Nat would be fine, as usual, but taking Camryn to a popular restaurant filled with small children was risky and letting her run free on a crowded beach? Downright dangerous! My gut said "Are you frickin crazy?" and my head answered with "Yes, she's frickin crazy!" but my spirit said "You need this, just go for it!" and my friend said "Come on, it will be fun!" so I did.
I picked Nat up from her playdate and intended on leaving Mace and Cam in the car while I ran up to get her. The mom came to the door and we were small talking about the girls when Mason bursts out of my car running and crying that Camryn hurt her. Then Camryn scrambles out, biting her hand and barreling towards Mason and Nat, Mason starts screaming for her to get away, Nat hides behind me and I make a mental note to throw this womans number away because she is never going to want to see us again. I got everyone calmed down and in the car, gave a weary smile at the woman as she waved goodbye and headed out to the beach, crazy as hell!
Camryn got into the glovebox five minutes down the road and somehow made it to where it would no longer close. She emptied all of its contents and threw them at me. When she got bored of that, she started pinching me. She is so big now that she can reach me even as I lean as far away from her as I can. I was scolding her but she just kept pinching and I thought to myself "Really Lord? Really?"
We get to beach and I see my girlfriend pull in with her kids. The first things out of their mouths were "Don't pinch me Camryn!" The girl has a reputation. We cross the street to the restaurant and it is packed! The wait was thirty minutes which may as well have been thirty days because I knew it was going to be long. We took the kids out on the beach while we waited. The restaurant is right on the gulf. It has outside seating on two decks, live entertainment and a fabulous view of the sunset, so needless to say it's popular. We were not the only ones waiting on the sand. There were kids everywhere! All sizes, ages, ethnicities. It didn't matter, as I've said before, Camryn is an equal opportunity offender. She will pinch and scratch just about anybody, so naturally I am scanning the crowd like a hawk on the lookout for prey, making sure no little ones are within Camryns reach. She is oblivious, loving the feel of the sand on her feet, running in circles laughing out loud. It was one of those fleeting moments of normality where for a few seconds she is just an eight year old girl and I love seeing her like that. But it didn't last long as she lunged for a kid passing by and I grabbed her hands.
There were seven in our party between my friend and our kids. The restuarant could not seat us all together, so the three big kids and Nat had their own table and Cam sat with us grownups two tables away. She did well during dinner, but I could tell she wanted to sit with her sisters. I couldn't let her though, she would hurt the other kids and whoever may have passed by. I felt bad, but I knew it had to be that way.
After dinner the kids wanted to go back on the beach, so we did. The sun was setting, the band was playing and the sangria had been oh so delicious! We ventured out onto the sand again and Cams broke free to run in circles. I ran with her, sure to keep others safe if they passed too close. I wanted to relax, but that is not an option when you are in public with Camryn. The other kids were having so much fun. They were racing each other, laughing and reminding me of my own childhood often playing on the beach at dusk. I pointed up at the crescent moon and had no sooner said "Look how beautiful" when I turned and saw another moon...Camryn's! There she was, in front of the crowd, butt naked! She had apparently gotten some water on her pants from a chair she sat on and so off with her clothes!!OMG! She handed me her underwear and shorts and I laughed out loud! "I have never seen the moon go from a sliver to full so fast in my life!" I joked with my friend. I shimmied her pants back on and she fought me every inch. We told the kids it was time to go and Mason shouted out the she wished Camryn hadn't come. She has had way too many outings cut short because of Camryn and I felt for her. However, this was no time for a heart to heart, so we herded everybody back to the car. As we said our goodbyes I told my friend let's do this again, next time less kids and more sangria! She agreed. We drove home and I called Brad to let him know we were on our way. "We stayed until the moon came out" I told him and Mason and I burst out laughing. After all, what else can you do?
Tuesday, April 5, 2011
Could Someone Point Out The "Break" Part?
I haven't posted in a while. Not because I didn't want to, but because last week was Spring Break and I think that explains it all. Every "break" from school makes me run screaming for the hills because the only break that happens in this house is the one before the word "down", as in Mommy is curled up in the fetal position on the floor again.
As a mom of an autistic child, I never look forward to any extended period void of routines or childcare. It may sound horrible, but I love the fact that for most of the year Camryn goes to school for seven hours a day where somebody else can keep her busy. My other two girls are not an issue. I love having time with them when we can go to the movies or the playground. I enjoy their company and letting them experience new things. But with Cam's it is such a different story, written in a completely different language. You all know by now movies and playgrounds don't work well with Camryn. Twice I had invites over the break to join friends and their kids at your typical kid hangouts and twice I had to decline, knowing taking Camryn to a kid filled area would be akin to letting Jaws loose at a pool party.....kind of a downer. I felt sorry for myself for a minute (okay maybe thirty) and then tried to figure out what the hell I was going to do to fill these nine long days of break. Monday it rained, so that slashed off number one on my list of one thing we could do that day. Our backyard is a good place for Cams as it is set up with her in mind. We have three "clubhouses" out there, a swingset, a sandbox and a jogging stroller for her to buckle herself into. But with torrential downpours in the forecast all day, the backyard would be uninhabitable for day one. Inside the options were dwindling. While Mason and Nat built a jungle out of plastic trees and animals on their bedroom floor, Camryn scribbled on a few sheets of paper before shoving them in my face announcing she was "all done". Okayyyyy, well there went three minutes filled. I tried to read her some books, and successfully got through four of them before she again decided she was all done with that as well. The only trick left up my very short sleeve was television, or as I like to refer to it "Old Faithful". Camryn will watch t.v, although the the variety of shows she likes are somewhat limited, as in two. There is the "Fresh Beat Band" and "Oobi", both of which are capable of leaving me banging my head against the wall to the beat of their theme song. I mean, you can only hear these things so many times before they start to embed themselves in your grey matter.However, I will gladly suffer any ill effects they may have to get thirty minutes of uninterrupted silence as Camryn loses herself in the screen. But even Cam has her limits and after about three shows she is ready to move on to something else,except after television I am at the top of my sleeve. No more tricks. And that is when it starts to become very clear that this break is going to be just like the last and the one before that.....very, very long.
These are the times when all the "I know this is for a reason" and "I am such a better person for going through this" start losing merit at record speed. When it is only 9:30 on Monday and Camryn has already pooped in her underwear, hit one sister, scratched the other, and molested the dog I squeeze my eyes shut and start thinking back really hard as to what malicious crime I committed to be given such a harsh sentence. And darn if I can't come up with anything! It is so hard to see the good when the bad is right up in your face, kicking and screaming. It can be so depressing and isolating knowing that other mom's are heading out for a rainy day movie or trip to the childrens museum, and you are stuck at home with two children who are pining to join along and one, who for reasons no one can figure out, cannot handle such an outing.
Obviously I got through it, as here I sit the Monday after break and I have not been confined to a padded room. And when summer comes, I will get through that as well, with a lot of help from summer school, Camp COAST and respite care. Praise Jesus that there are so many options available to get families like ours through the long months of summer. I am totally feeling bummed today and I know my post reflects it. No need to feel sorry for me though,as I am so blessed in many, many ways and reading the news reminds me of that every day. We all have our crosses to bear and it really just depends on how we carry them. We can either drag them on our backs, leaving us hunched over and weak or we can lift them up above our heads getting stronger with every step we take. I fluctuate between mild scoliosis and moderately toned biceps.
So tomorrow is another day and it looks like rain. While some may curse the skies wishing for sun, I think back to last week and smile at the idea that no matter how hard it blows or how much it pours, I will not have to keep anybody entertained except me and luckily I am easily amused. So let it come down! Bring it on!Cats, dogs, clapboard houses from Kansas! I don't care! I plan on sitting on the couch with a hot cup of coffee listening to the rain and nothing else. I will call it my "Spring Break Break" and I will enjoy every minute of it!
As a mom of an autistic child, I never look forward to any extended period void of routines or childcare. It may sound horrible, but I love the fact that for most of the year Camryn goes to school for seven hours a day where somebody else can keep her busy. My other two girls are not an issue. I love having time with them when we can go to the movies or the playground. I enjoy their company and letting them experience new things. But with Cam's it is such a different story, written in a completely different language. You all know by now movies and playgrounds don't work well with Camryn. Twice I had invites over the break to join friends and their kids at your typical kid hangouts and twice I had to decline, knowing taking Camryn to a kid filled area would be akin to letting Jaws loose at a pool party.....kind of a downer. I felt sorry for myself for a minute (okay maybe thirty) and then tried to figure out what the hell I was going to do to fill these nine long days of break. Monday it rained, so that slashed off number one on my list of one thing we could do that day. Our backyard is a good place for Cams as it is set up with her in mind. We have three "clubhouses" out there, a swingset, a sandbox and a jogging stroller for her to buckle herself into. But with torrential downpours in the forecast all day, the backyard would be uninhabitable for day one. Inside the options were dwindling. While Mason and Nat built a jungle out of plastic trees and animals on their bedroom floor, Camryn scribbled on a few sheets of paper before shoving them in my face announcing she was "all done". Okayyyyy, well there went three minutes filled. I tried to read her some books, and successfully got through four of them before she again decided she was all done with that as well. The only trick left up my very short sleeve was television, or as I like to refer to it "Old Faithful". Camryn will watch t.v, although the the variety of shows she likes are somewhat limited, as in two. There is the "Fresh Beat Band" and "Oobi", both of which are capable of leaving me banging my head against the wall to the beat of their theme song. I mean, you can only hear these things so many times before they start to embed themselves in your grey matter.However, I will gladly suffer any ill effects they may have to get thirty minutes of uninterrupted silence as Camryn loses herself in the screen. But even Cam has her limits and after about three shows she is ready to move on to something else,except after television I am at the top of my sleeve. No more tricks. And that is when it starts to become very clear that this break is going to be just like the last and the one before that.....very, very long.
These are the times when all the "I know this is for a reason" and "I am such a better person for going through this" start losing merit at record speed. When it is only 9:30 on Monday and Camryn has already pooped in her underwear, hit one sister, scratched the other, and molested the dog I squeeze my eyes shut and start thinking back really hard as to what malicious crime I committed to be given such a harsh sentence. And darn if I can't come up with anything! It is so hard to see the good when the bad is right up in your face, kicking and screaming. It can be so depressing and isolating knowing that other mom's are heading out for a rainy day movie or trip to the childrens museum, and you are stuck at home with two children who are pining to join along and one, who for reasons no one can figure out, cannot handle such an outing.
Obviously I got through it, as here I sit the Monday after break and I have not been confined to a padded room. And when summer comes, I will get through that as well, with a lot of help from summer school, Camp COAST and respite care. Praise Jesus that there are so many options available to get families like ours through the long months of summer. I am totally feeling bummed today and I know my post reflects it. No need to feel sorry for me though,as I am so blessed in many, many ways and reading the news reminds me of that every day. We all have our crosses to bear and it really just depends on how we carry them. We can either drag them on our backs, leaving us hunched over and weak or we can lift them up above our heads getting stronger with every step we take. I fluctuate between mild scoliosis and moderately toned biceps.
So tomorrow is another day and it looks like rain. While some may curse the skies wishing for sun, I think back to last week and smile at the idea that no matter how hard it blows or how much it pours, I will not have to keep anybody entertained except me and luckily I am easily amused. So let it come down! Bring it on!Cats, dogs, clapboard houses from Kansas! I don't care! I plan on sitting on the couch with a hot cup of coffee listening to the rain and nothing else. I will call it my "Spring Break Break" and I will enjoy every minute of it!
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