We talk to God alot around here. Not just talk, sometimes gasp, shout, and sometimes, just sometimes, cry. Our home is built on a foundation of faith, which is so appropriately Camryn's middle name. But the way we all speak to him in our own private moments as well our public outbursts varies greatly. So today I thought I'd do a post on what a family living with autism has to say to their maker.
As you all know, many times I walk into Camryn's room to find not only torn up books and broken toys, but stinky,poopy panties. And sometimes, she takes it up a notch with stinky, poopy footprints and stinky, poopy fingers. It's a phenomenon quite common round these parts and although I have moved way past the shock and awe of it all, I still find myself conversing out loud with God as I grab Camryn by her wrist and lead her to the bathroom. "Why God, why? What am I to learn from this? Patience? I think I have it down...really! Acceptance? Again, I've accepted alot of crap, and oh I so meant that pun, so I think I got it."
Meanwhile, Cams is trying to squirm away from me and usually ends up getting a smear of poop somewhere on my body. I usually stop asking the big guy questions around this time as I am too busy wiping Cams butt. As the toilet paper tears, leaving just my bare finger to finish the job, I find myself using the Lord's name in a very un-Godly manner, pairing it with curse words and then begging for his forgiveness right before I do it again. It's actually pretty funny now that I think about it, though at the time, humor is nowhere to be found. I know I shouldn't say those things, even if they are only in my mind and under my breath, but I think God understands. I mean, really,we're talking poop here.
Every night Brad reads the Bible to the kids and then we pray with them before bed. It's usually your basic prayer, covering everything from being thankful for our blessings and his mercy to helping the less fortunate. It is mostly Mason who says the bulk of it and then Natalie chimes in with her thanks for me, her Dad and of course, the dog. But the other night, Nat decided to tack on one more thing. It was dark and Brad was working late. I was dead tired from an especially challenging afternoon with Camryn and so ready for all kids to be on mute. Mason said her part of the prayer and I was secretly hoping Nat would have fallen asleep because I just didn't think I could stand there one more minute without falling over. But she hadn't. She began with her usual and then she started thanking God for the moon, the sun, the sky, the grass, etc. I was just about to cut her off when she added " and thank you God for Camryn's autism." Mason busted out laughing and Nat started crying and I was furious. "Why did you thank God for Camryn's autism?" Mason asked sarcastically. Nat was still crying, embarrassed by Mason laughing at her prayer. I sat down beside her and wiped her tears. "It's ok Nat, don't you worry about Mason." She looked up at me and said quite matter-of-factly "I thanked God for Camryn's autism because I don't care that she's autistic. That's what makes her Camryn and I like her that way!" Wow, my kids never cease to amaze me. "You are so right Natalie, you are so right." I turned off the light and not another word was spoken. Five years old and she already gets it. I was so proud.
Not only do we pray with Mason and Natalie, but I also pray every night with Camryn, though as most things do, it goes a tad differently. I tuck her in, give her all her comforts i.e. blankie, white tiger, and a book to hold, she has to have a book. I turn her sound machine to rain and put my face in her hair. I've said the prayer enough times that she knows it by heart, but whether or not I can get her to say any of it depends on the night. "Dear....." I wait for her to finish it. If she feels like it she will answer "Lord" in a very low, silly voice. I go on with "We ask that you...." And again, if she's up to it, she'll answer "forgive ush of our shins". Yeah, she says "shins", it's part of her silly voice that she talks in most of the time.We go on to cover all the things we are thankful for and then I say " We ask that you help Camryn....." and she finishes it with "To pleashe stop pinching and to ushe her words." Then I say "Please give all of us patience and help us to not get...." and she says "frushstrated". I then wrap it up with "In......" and Cams says "Jeshush name we pray, amen." It's one of my favorite times with her. Some nights it takes longer than others, as sometimes she will just lay there silently no matter how many times I prompt her. But I know she is listening to it all and could say the whole thing by herself if she were able. That is something I ask God for later in my own prayer.
There have been times, many times, that I have cried out to God in my moments of sheer desperation, trying to figure out why he chose this road for me. I'm happy to say that it has been quite a while since I have had an episode like this and if I never have another that will be just fine with me. When Camryn starts her screaming and hitting her head, biting herself, as she often times does, I can usually handle it. And by handle it I mean "check out" for the length of it, put on a straight face and maneuever around the house like a robot, emotionless and void of thought. It's the only way I have found to deal with it other than throw myself on the bed flailing my arms and legs, sobbing uncontrollably and biting my own hands and arms. But there are days, when I have had nowhere near enough sleep or just a little too much input, that I cannot handle her tantrums and those are the times I open up to the Lord, questioning his judgment and bargaining for a different way. I live by the philosophy "everything for a reason" but wow is it hard to reason an eight year old child shouting blood curdling screams while banging her tender head against the wall. He never answers in words, but I always feel a calm about me after my rant and just know in my heart that I was born to do this and I must go on.
When all is said and done and the sun has long gone down, I lay my head on my pillow and close my eyes. I thank God for my family, my friends, our health, and all the other blessings bestowed upon us. I ask for his forgiveness, I beg him for his mercy and I promise to do better with another day. I thank him for my children and pray he keep them healthy and safe, that he give them courage and guidance, strength and wisdom, humility and grace. And patience, lots and lots of patience.
And as always, he gives us what we need, though too often we confuse want with need and wonder why our prayers have gone unanswered. Like I reeeeeaaaallly want to be a size four, but I need to weigh more than my daughter when she is refusing to get out of the tub and I need to lift her. And I want to live in a mansion, but I need to be near Camryn's room at all times in the event she gets stuck in her closet or poops all over the floor ( both of which are real possibilities). And don't even get me started with the stairs! And oh, I sooooo want to live a normal life, but I need Camryn in it for it to be as it should. God knows these things and on days when I stress and worry I have to stop myself and remember....he's got this.
So this is how we talk to God and we have so much more to say. I know I will ask him again if he's sure I'm the one for the job. I'm sure Mason will seek his forgiveness a million more times for calling Camryn names. And I hope that Natalie will thank him every day for making her sister just the way he did. As for Cam, I don't know if she get's the whole prayer concept or not but if she does, I bet I know what she says to God. I bet she thanks him for Ry-ry and dog bones, liquid soap and tire swings, carousels and shoes. It's not your typical list of gratitudes but wow, maybe it should be. Typical or not, those things make her happy and at the end of the day if my daughter is thanking God for such instead of praying he keep her safe from strangers and make her skinny I can't think of any better way to respond to that than a great big AMEN!
Tuesday, September 27, 2011
Monday, September 12, 2011
Rain, Rain Go Away, But Please Come Back Another Day
Your own perception is your own reality. Not quite sure who "coined" this, but it is so true.
I am a deep thinker. Always have been and probably always will be, which is funny because I am also such a "blonde" at times. I remember laying in bed in elementary school,trying to wrap my mind around what was here before God. If God created the world then where did God come from and what does nothing look like if there was nothing here in the beginning and what will it be like to live for eternity and all other kinds of crazy things that would twist my intestines into a knotted mess and leave me wishing I could just hit the pillow and fall asleep. My best friend Anna can tell you some stories from our youth of outlandish questions I had for my mom that most kids couldn't have cared less about knowing. Maybe it's because I am a writer that I ponder such things. Maybe it's because I'm nosey that I want to know all the details. Or maybe I'm just crazy! But most likely a combination of them all.
Today, on my morning walk I was running the weekend back through my mind. Brad had to work on the machine early Friday and all day Saturday and was going to spend Thursay through Saturday night at his moms because she lives close to the plant, which meant I would be flying solo with the kids. When my co-pilot is gone it can become quite turbulent so I asked him if he would mind taking Cam with him to his moms for the weekend so I could do some not-so-Cam-friendly things with Mace and Nat. Brad picked Cam up early from school Thursday and the two of them headed down to Port Charlotte for a weekend with Nanny.
I know it sounds terrible but Thursday morning I woke up with an extra spring in my step knowing I would only have Mason and Natalie for the next three days and was excited for the "ordinary normalness" that would come with it. I knew that once Cam got on the bus our house would be "Autism-free" for a short while and it made the day so much easier to face. I kissed her goodbye and put her on the bus and I swear my posture improved immediately! I felt lighter, it was easier to breathe and I couldn't wait to pick up my other two girls after school and have a normal afternoon. Now I say normal, but actually what I mean is not-so-normal because a normal afternoon for us is Cam and I going to get her sisters from school and not even getting in the door before Camryn has hurt one of them, trying to help Mace and Nat with homework while Camryn either destroys the house or is locked in her room screaming, Mason crying out of frustration, Natalie crying out of frustration, Camryn crying out of frustration, me crying out of frustration and the dog once again asking herself "Do they really consider this "rescued?" Cam usually poops or pees on herself at some point, I put her in the bath while preparing dinner only to come back and find that she has flooded the bathroom floor splashing water everywhere, then once everyone is seated down to dinner although our table is long and has six seats Camryn somewhow finds a way to kick her sisters under the table or steal their food when they aren't looking, which is never a good thing. I pray for the clock to strike 7:00 which means time for jammies and winding down, then 7:30 for brushing teeth and then the glorious hour of eight o'clock when peace feels it's safe enough to come back into the house. It's pretty crazy.
But when it's just Mason and Natalie, things are sooooo much different for me, for us. I was not half as stressed when I picked them up in the car circle because I had not been trying to keep Camryn out of the glove box for the past ten minutes. We talked about their day on the way home and I didn't have to be concerned Camryn was going to close the car door on their hands when we got out, as she can't stand for doors to be open and slams them shut with no regard there might be a peron behind or in them. I made them a snack, they sat at the table and noone kicked them or grabbed their grapes. They played together before homework and I sat and watched them, I sat!! That is unheard of at 3:30 on a school day! Then time for homework, Mason satat the table and Natalie and I went into the sunroom. It was quiet, we could think, it was a beautiful thing. If Mason needed me I helped her as well, it was such a nice change.
A good friend of the family was returning home from a trip that evening and my Mom was picking her up at the airport and then having us all over for pizza. The girls wanted to go to the airport as well and so we did. We all went to the airport in my Mom's Sonata!!!! Sounds indcredibly ordinary doesn't it? I know, it was, but for us it was so extraordinary because we don't all go anywhere together in a vehicle with less than three rows! Anything smaller would leave way too little space between two of my girls and their sisters armspan. And going to my Moms for pizza on a schoolnight? Ha!! With her two little dogs the perfect size to be snapped in half by Cam before the first slice was served? Not likely, too much work! But we did and we had such a great time. The girls colored, I drank wine...drank wine!!! Sat at the table for thirty consecutive minutes and drank wine! It was frickin' incredible!
The next day was Friday and I told the girls we were going to do all the things we wouldn't normally do while we had the chance. After I picked them up from school my Dad called to see if we wanted to have gelato with him downtown. Why of course we did! We picked him up and when we entered the gelato place and saw there was a line of kids before us, instead of panicking and grabbing both of Camryns hands in mine, I stood there both arms limp at my sides,lost in the flavors to choose from until it was our turn. Amazing! We ate outside and as usual there were several people walking their dogs past us on the sidewalk. Never did I jolt from my seat to protect an innocent pooch from Cam's "eternal sleep squeeze". Nope, I just sat there, leaned back in my seat, legs lazily crossed, licking the Meditteranean Sea Salt Caramel gelato from the spoon and thinking to myself "This is the good life."
After the gelato we took the girls across the street to the waterfront park so they could run and swing on the Banyan trees. The group of kids that had been in the gelato place had also crossed over to the park but hey, no worries, in fact I actually told my kids to go play with them. Play with them! I would NEVER tell Camryn to go play with a group of young children unless I held a deep hatred for them and wanted to see them injured,which of course I would never do. I stood there talking with my Dad while the girls ran and played and never once did I worry they were pulling someones ear off or etching their initials in someones skin. It was so, so nice.
That night I invited one of my best friends and her kids over for pizza and play. We haven't seen them for several months and haven't had them over for even longer. Playdates and Camryn don't jive. She loves to see our friends but she just cannot control herself around them and always, always ends up hurting them and I'm sorry, but that's just not fun. And when she is there, my girlfriend and I can forget visiting because I am constantly up following Camryn making sure she is not doing something she shouldn't be which of course she almost always is. But not this time. Friday our friends came over at six, we had pizza, they played, my friend and I sat on the couch and talked, the kids watched a movie in the other room...in the other room!!!! That never happens!! It was a great, great time and I was so happy for Mason that she finally got to have her friends over with no worries of Camryn attacking.
Saturday my Mom and I took the girls to the beach. It started out a very rainy, stormy day but the radar showed it would eventually clear up so we got subs and drinks and drove out to Fort DeSoto. Well, two hours after we got there we were able to actually get on the beach. The storms were a bit more plentiful then we originally thought, but no big deal. We had our food so we parked by the water, got out our subs and had a car picnic. The girls loved it and except for Natalie asking "Are we going to the beach now?" every thirty seconds the girls did great. If Miss Cams had been there forget it. Cam's doesn't sit in a non-moving vehicle for more than um, let's say fifteen seconds at best. It would have never happened if she had joined us, in fact we never would have tried it and turns out I'm so glad we did because when the rain finally did stop it was a beautiful afternoon!
Saturday night I got an impromtu invite to the movies to see "The Help". With Brad out of town this was a perfect time to see it with my Mom and another friend, as I didn't think Brad would be real keen on seeing it. I called my Dad to see if I could drop the girls off at his house while I went to the movie and he said yes. My Dad has always been real good about having Mason and Natalie come over. But with Cam it's different. He has a smaller dog and of course Camryn tries to "kill it with kindness",so that's kind of a negative. Also, I don't think he knows what to do with her so he doesn't have her over and while I wish he would, he doesn't and that's just the way it is.We got home from the beach, the girls changed while I showered and I took them to my Dads. It was such a treat for them and me and I was so glad I got to go. It wasn't lost on me at all that had Cam's been home, going to the movie last minute would have never happened because my Dad was the only one available to watch the girls. I was thankful for the time.
Sunday morning my girls like to go to the Flea Market. They bring their small allowance and bargain for trinkets and treasures. They usually go with my Mom, who never misses a Sunday, but this time I took them knowing we could walk the aisles and pass by small children and pets with no concern. We meandered up and down the paths looking over the merchants ware's. Mason picked up two owls and Natalie got two elephants and a necklace. It was so nice to have that time with them and as I looked around at other families I wondered did they do this every Sunday or was this a special occasion for them too.
Everything we did this weekend seemed so special. I had such fun with them and I felt like such a good Mom. I didn't yell, I had more patience, I was able to listen and laugh and just be their mom and it felt amazing. Camryn and Brad got home Sunday around noon. We pulled in about five minutes later. When I walked in the door Cam grabbed me around the neck and pulled me right up to her mouth to "smooch" me. I gave her a big hug and kiss and told her how much I had missed her and I had, but secretly I didn't miss her as much I think I should have. And I feel like such dirt for writing that. But I vowed to tell the truth, ugly as it is, when keeping this blog and that is how I truly felt at the time. While of course I missed my baby, my daughter, I so enjoyed the way things were while she was gone. While her sisters and I did nothing of great excitement, everything we did felt so good because we were doing it as we rarely do, out from under the shadow and darkness of Autism. The rest of Sunday was hard. Even though Camryn has an amazingly fun time at "Nanny's" the change is hard for her and getting back into routine is painful. She was extremely whiny and agitated. She was more aggressive than she's been for quite some time. She was screaming and keeping her out of the refrigerator was damn near impossible as she perseverates on food,always looking for it even though she usually ends up giving it to the dog. We put her in the bath to calm her and when I passed by on my way to the garage I noticed she had gotten to the handsoap, emptied it into the bath, thrown out all the toys onto the floor, ripped the plastic cup I use to wash their hair into pieces and splashed about an inch of water onto the tile. My eyes filled up with tears. Brad cleaned it up, got her dressed and took her for a ride while Mason worked on her school project, Nat took a bath and I sorted socks. For forty-five minutes life was "normal" or "not normal" again and I said out loud as I often do "They just don't know. They have no idea" referring of course to parents of normal children. The kids were in bed at eight and I breathed again at 8:01. Having that weekend with the girls was nice, but I wondered if it only depressed me more to see what I was missing.
Today on my walk I started thinking about it. Thinking about how much I enjoyed being a regular lunch making, laundry folding, homework helping, grocrey shopping, beachgoing, pizza eating mom. The things we filled our weeked with to some may seem mundane, so ordinary because to them they are always an option. I wondered, would I enjoy my time with my girls like that if I didn't know the other side? Has being Camryn's mom made me more appreciative of the "little" things and moments than mothers of typical kids or do they feel that way all the time. Do other mom's wake up on Friday and look forward to spending the weekend with their kids? Do they get such a kick out of sitting still and drinking wine while over at their moms house for dinner? Would I be a better mom if I only had Mason and Natalie, more patient, less stressed and more fun? Or would I be less attentive, bored with the monotony and think going to the beach in the rain is ridiculous? I don't know and I never will and that's because my reality is my perception and my perception as a Mom of an autistic child is very different than that of my peers.
Because I know my life is what it is and I have to make the best of it and for the sake of my sanity, I have to believe that I would not treasure my "normal mom time" if I did not know of times so different. And I have to believe that my kids would not be so thankful to have it had they not spent far more time in a less rosey environment. And I also have to believe, like I always have, that I was chosen to be Camryn's Mom for a reason. A reason that has yet to reveal itself but I know it someday will. Even on the darkest days, the most tearful nights I keep believing it's making me stronger, making us stronger and that I have to go on because one day it's going to get easier, better. Kind of like going to the beach in the rain.
I am a deep thinker. Always have been and probably always will be, which is funny because I am also such a "blonde" at times. I remember laying in bed in elementary school,trying to wrap my mind around what was here before God. If God created the world then where did God come from and what does nothing look like if there was nothing here in the beginning and what will it be like to live for eternity and all other kinds of crazy things that would twist my intestines into a knotted mess and leave me wishing I could just hit the pillow and fall asleep. My best friend Anna can tell you some stories from our youth of outlandish questions I had for my mom that most kids couldn't have cared less about knowing. Maybe it's because I am a writer that I ponder such things. Maybe it's because I'm nosey that I want to know all the details. Or maybe I'm just crazy! But most likely a combination of them all.
Today, on my morning walk I was running the weekend back through my mind. Brad had to work on the machine early Friday and all day Saturday and was going to spend Thursay through Saturday night at his moms because she lives close to the plant, which meant I would be flying solo with the kids. When my co-pilot is gone it can become quite turbulent so I asked him if he would mind taking Cam with him to his moms for the weekend so I could do some not-so-Cam-friendly things with Mace and Nat. Brad picked Cam up early from school Thursday and the two of them headed down to Port Charlotte for a weekend with Nanny.
I know it sounds terrible but Thursday morning I woke up with an extra spring in my step knowing I would only have Mason and Natalie for the next three days and was excited for the "ordinary normalness" that would come with it. I knew that once Cam got on the bus our house would be "Autism-free" for a short while and it made the day so much easier to face. I kissed her goodbye and put her on the bus and I swear my posture improved immediately! I felt lighter, it was easier to breathe and I couldn't wait to pick up my other two girls after school and have a normal afternoon. Now I say normal, but actually what I mean is not-so-normal because a normal afternoon for us is Cam and I going to get her sisters from school and not even getting in the door before Camryn has hurt one of them, trying to help Mace and Nat with homework while Camryn either destroys the house or is locked in her room screaming, Mason crying out of frustration, Natalie crying out of frustration, Camryn crying out of frustration, me crying out of frustration and the dog once again asking herself "Do they really consider this "rescued?" Cam usually poops or pees on herself at some point, I put her in the bath while preparing dinner only to come back and find that she has flooded the bathroom floor splashing water everywhere, then once everyone is seated down to dinner although our table is long and has six seats Camryn somewhow finds a way to kick her sisters under the table or steal their food when they aren't looking, which is never a good thing. I pray for the clock to strike 7:00 which means time for jammies and winding down, then 7:30 for brushing teeth and then the glorious hour of eight o'clock when peace feels it's safe enough to come back into the house. It's pretty crazy.
But when it's just Mason and Natalie, things are sooooo much different for me, for us. I was not half as stressed when I picked them up in the car circle because I had not been trying to keep Camryn out of the glove box for the past ten minutes. We talked about their day on the way home and I didn't have to be concerned Camryn was going to close the car door on their hands when we got out, as she can't stand for doors to be open and slams them shut with no regard there might be a peron behind or in them. I made them a snack, they sat at the table and noone kicked them or grabbed their grapes. They played together before homework and I sat and watched them, I sat!! That is unheard of at 3:30 on a school day! Then time for homework, Mason satat the table and Natalie and I went into the sunroom. It was quiet, we could think, it was a beautiful thing. If Mason needed me I helped her as well, it was such a nice change.
A good friend of the family was returning home from a trip that evening and my Mom was picking her up at the airport and then having us all over for pizza. The girls wanted to go to the airport as well and so we did. We all went to the airport in my Mom's Sonata!!!! Sounds indcredibly ordinary doesn't it? I know, it was, but for us it was so extraordinary because we don't all go anywhere together in a vehicle with less than three rows! Anything smaller would leave way too little space between two of my girls and their sisters armspan. And going to my Moms for pizza on a schoolnight? Ha!! With her two little dogs the perfect size to be snapped in half by Cam before the first slice was served? Not likely, too much work! But we did and we had such a great time. The girls colored, I drank wine...drank wine!!! Sat at the table for thirty consecutive minutes and drank wine! It was frickin' incredible!
The next day was Friday and I told the girls we were going to do all the things we wouldn't normally do while we had the chance. After I picked them up from school my Dad called to see if we wanted to have gelato with him downtown. Why of course we did! We picked him up and when we entered the gelato place and saw there was a line of kids before us, instead of panicking and grabbing both of Camryns hands in mine, I stood there both arms limp at my sides,lost in the flavors to choose from until it was our turn. Amazing! We ate outside and as usual there were several people walking their dogs past us on the sidewalk. Never did I jolt from my seat to protect an innocent pooch from Cam's "eternal sleep squeeze". Nope, I just sat there, leaned back in my seat, legs lazily crossed, licking the Meditteranean Sea Salt Caramel gelato from the spoon and thinking to myself "This is the good life."
After the gelato we took the girls across the street to the waterfront park so they could run and swing on the Banyan trees. The group of kids that had been in the gelato place had also crossed over to the park but hey, no worries, in fact I actually told my kids to go play with them. Play with them! I would NEVER tell Camryn to go play with a group of young children unless I held a deep hatred for them and wanted to see them injured,which of course I would never do. I stood there talking with my Dad while the girls ran and played and never once did I worry they were pulling someones ear off or etching their initials in someones skin. It was so, so nice.
That night I invited one of my best friends and her kids over for pizza and play. We haven't seen them for several months and haven't had them over for even longer. Playdates and Camryn don't jive. She loves to see our friends but she just cannot control herself around them and always, always ends up hurting them and I'm sorry, but that's just not fun. And when she is there, my girlfriend and I can forget visiting because I am constantly up following Camryn making sure she is not doing something she shouldn't be which of course she almost always is. But not this time. Friday our friends came over at six, we had pizza, they played, my friend and I sat on the couch and talked, the kids watched a movie in the other room...in the other room!!!! That never happens!! It was a great, great time and I was so happy for Mason that she finally got to have her friends over with no worries of Camryn attacking.
Saturday my Mom and I took the girls to the beach. It started out a very rainy, stormy day but the radar showed it would eventually clear up so we got subs and drinks and drove out to Fort DeSoto. Well, two hours after we got there we were able to actually get on the beach. The storms were a bit more plentiful then we originally thought, but no big deal. We had our food so we parked by the water, got out our subs and had a car picnic. The girls loved it and except for Natalie asking "Are we going to the beach now?" every thirty seconds the girls did great. If Miss Cams had been there forget it. Cam's doesn't sit in a non-moving vehicle for more than um, let's say fifteen seconds at best. It would have never happened if she had joined us, in fact we never would have tried it and turns out I'm so glad we did because when the rain finally did stop it was a beautiful afternoon!
Saturday night I got an impromtu invite to the movies to see "The Help". With Brad out of town this was a perfect time to see it with my Mom and another friend, as I didn't think Brad would be real keen on seeing it. I called my Dad to see if I could drop the girls off at his house while I went to the movie and he said yes. My Dad has always been real good about having Mason and Natalie come over. But with Cam it's different. He has a smaller dog and of course Camryn tries to "kill it with kindness",so that's kind of a negative. Also, I don't think he knows what to do with her so he doesn't have her over and while I wish he would, he doesn't and that's just the way it is.We got home from the beach, the girls changed while I showered and I took them to my Dads. It was such a treat for them and me and I was so glad I got to go. It wasn't lost on me at all that had Cam's been home, going to the movie last minute would have never happened because my Dad was the only one available to watch the girls. I was thankful for the time.
Sunday morning my girls like to go to the Flea Market. They bring their small allowance and bargain for trinkets and treasures. They usually go with my Mom, who never misses a Sunday, but this time I took them knowing we could walk the aisles and pass by small children and pets with no concern. We meandered up and down the paths looking over the merchants ware's. Mason picked up two owls and Natalie got two elephants and a necklace. It was so nice to have that time with them and as I looked around at other families I wondered did they do this every Sunday or was this a special occasion for them too.
Everything we did this weekend seemed so special. I had such fun with them and I felt like such a good Mom. I didn't yell, I had more patience, I was able to listen and laugh and just be their mom and it felt amazing. Camryn and Brad got home Sunday around noon. We pulled in about five minutes later. When I walked in the door Cam grabbed me around the neck and pulled me right up to her mouth to "smooch" me. I gave her a big hug and kiss and told her how much I had missed her and I had, but secretly I didn't miss her as much I think I should have. And I feel like such dirt for writing that. But I vowed to tell the truth, ugly as it is, when keeping this blog and that is how I truly felt at the time. While of course I missed my baby, my daughter, I so enjoyed the way things were while she was gone. While her sisters and I did nothing of great excitement, everything we did felt so good because we were doing it as we rarely do, out from under the shadow and darkness of Autism. The rest of Sunday was hard. Even though Camryn has an amazingly fun time at "Nanny's" the change is hard for her and getting back into routine is painful. She was extremely whiny and agitated. She was more aggressive than she's been for quite some time. She was screaming and keeping her out of the refrigerator was damn near impossible as she perseverates on food,always looking for it even though she usually ends up giving it to the dog. We put her in the bath to calm her and when I passed by on my way to the garage I noticed she had gotten to the handsoap, emptied it into the bath, thrown out all the toys onto the floor, ripped the plastic cup I use to wash their hair into pieces and splashed about an inch of water onto the tile. My eyes filled up with tears. Brad cleaned it up, got her dressed and took her for a ride while Mason worked on her school project, Nat took a bath and I sorted socks. For forty-five minutes life was "normal" or "not normal" again and I said out loud as I often do "They just don't know. They have no idea" referring of course to parents of normal children. The kids were in bed at eight and I breathed again at 8:01. Having that weekend with the girls was nice, but I wondered if it only depressed me more to see what I was missing.
Today on my walk I started thinking about it. Thinking about how much I enjoyed being a regular lunch making, laundry folding, homework helping, grocrey shopping, beachgoing, pizza eating mom. The things we filled our weeked with to some may seem mundane, so ordinary because to them they are always an option. I wondered, would I enjoy my time with my girls like that if I didn't know the other side? Has being Camryn's mom made me more appreciative of the "little" things and moments than mothers of typical kids or do they feel that way all the time. Do other mom's wake up on Friday and look forward to spending the weekend with their kids? Do they get such a kick out of sitting still and drinking wine while over at their moms house for dinner? Would I be a better mom if I only had Mason and Natalie, more patient, less stressed and more fun? Or would I be less attentive, bored with the monotony and think going to the beach in the rain is ridiculous? I don't know and I never will and that's because my reality is my perception and my perception as a Mom of an autistic child is very different than that of my peers.
Because I know my life is what it is and I have to make the best of it and for the sake of my sanity, I have to believe that I would not treasure my "normal mom time" if I did not know of times so different. And I have to believe that my kids would not be so thankful to have it had they not spent far more time in a less rosey environment. And I also have to believe, like I always have, that I was chosen to be Camryn's Mom for a reason. A reason that has yet to reveal itself but I know it someday will. Even on the darkest days, the most tearful nights I keep believing it's making me stronger, making us stronger and that I have to go on because one day it's going to get easier, better. Kind of like going to the beach in the rain.
Friday, September 9, 2011
Nothing Wrong With That!
With everything in life there is the good and the bad. The pros and cons, benefits and drawbacks, highs and lows. And so it goes with Autism as well. You've got your good and you've got your not so good. And when it seems like there is way more crap in the not so good scale, I like to balance it out by weighing in on the good stuff.
Camryn Faith Walker wakes up in a good mood every single morning. Every single morning!!! Doesn't matter if she's in a deep sleep snoring, or laying in bed lazy staring at the wall. Every morning I go in to get her I always know I am going to get a smile and a giggle and some crazy saying in a silly voice. I love waking her up because it is one of the few times I can snuggle to her without having her in a full head and body lock. I put my face in the back of her neck and her skin is so warm and smells like slightly sweaty maple syrup, sounds gross but I love it. She giggles and I give her smooches and it is one of my favorite things to do with her. It never lasts long, maybe two to three minutes, but I get so much enjoyment and fulfillment out of that short time it is totally worth it. By then my other two sleeping beauties have risen and with those two you never know what you are going to get! There can be whining and grouchiness, rolling eyes and bickering and it is one of the rare times I think "Why can't they be more like Camryn?"
This year Mason entered fifth grade at a new school and Natalie started kindergarten. Both of them were excited, but also equally nervous about their new surroundings, not knowing anybody and would they like their teacher. As a parent it is so hard to send your kids off into the sometimes hostile environment of school, knowing how cruel kids can be and thinking back to your own schoolday horrors. I felt for them the first day as I kissed them goodbye and watched them disappear into the great unknown. Camryn however, first day she was like "Whateva!". I woke her up, got her in her uniform, put her backpack on her and walked her out to the bus where a total stranger was waiting to drive her to school. She had no fears of not knowing the driver, no nervousness of the first day and no concern whatsoever that I would not be on the bus with her. In fact when I kissed her she pushed me away and said repeatedly "Bye, Bye, be good, drive carefully, bye!"waving like a wild woman. I watched her climb the bus steps and hold hands with the assistant who would lead her to her seat. Cam was just smiling and loving life! I waved goodbye as they pulled off and thought "What a beautiful blessing! The child knows no feelings of the fear of not knowing or the worry of not being good enough." Ahhh, the innocence!
Last week our family said "See you soon" to a much loved member of the family. We didn't say goodbye because we plan on visiting her in the not too far future, so see you soon sounded much better. "Aunt Jackie", while not a blood relative, is as much a part of our family as if she were born from my mom. She has been such a huge part of my girls lives, literally since the day they were born. She was in the delivery room for Mason and Camryn, and not for Nat only because we had moved at that time. My kids absolutely adore her and because she has no kids of her own, my girls were her "surrogate" kids. They would spend the night with her all the time, go to the movies, Disney, swimming, get ice cream, hang out with her and her two golden retrievers, and just made a ton of fabulous memories with her. We were so blessed to have her in our life for as long as we did. But life changes, as we all know and a new opportunity came up for her in her homestate of California. It was going to be a real positive move for her, as not only would she have a new start but her parents, and brother and nieces would be nearby. While my heart broke into a million pieces when she told me she was leaving, I was also so happy for her because she is a beautiful person and deserves the best.
Telling my girls was literally painful. I had a knot in my stomach for hours before I finally decided the right moment would never be and I sat them down and broke the news. Mason was upset, but I think she's secretly a man as she hides her emotions like a pro. Natalie crawled up in my lap and bawled. And Camryn, well I didn't even tell Camryn because she wouldn't understand what I was saying anyway. She doesn't communicate like that. When we said our goodbyes to Jackie, I could tell by the way Mason was behaving that she was very sad.We were at a yogurt shop downtown and she gave Jackie lots of hugs, which is not her nature in private let alone public and it broke my heart to see her holding onto the "Aunt" she loves so much knowing she wouldn't be hugging her again for quite some time. Natalie took it one step further and refused to let go of Jackie. She told her "I'm never letting you go!!!" and clung to Jackie's legs. Of course when it came to my turn, I started sobbing as we embraced. And then there was Camryn, totally oblivious to the somber mood. She was in the stroller tweaking up a storm ,trying to attack small dogs whose owners let them wander dangerously close to her. As we watched Jackie walk down the street Mason said "I wish I was like Camryn. She doesn't know to be sad about Aunt leaving. She doesn't even know she won't see her again for a long time." I hugged her and kissed her head. She was right.
In two days it will be the tenth anniversary of September 11th. The day the world changed Mason was eight months old and pointed to the television at the plane flying into the building saying "bird, bird". Today she is a ten and a half year old girl who has come to learn the ugliness of what really happened that day and that was no bird. We have been talking about it alot the past few days because of all the talk about it in the media. I don't want her to be afraid but I want her to know the real story so she will not be led astray by other kids versions or perceptions. It is a difficult conversation to have with the little girl I just took to Disney World last month. I want so much to protect her from all the ugliness in the world, but I know that is an impossible feat. And Natalie, while only five, she also hears things at school and has said a few things about 9-11 and oh it breaks my heart to see my baby with her big blue eyes and soft round cheeks talk about "bad people" who want to hurt us. Why is this world so ugly?
And then there's Cam. Sitting on the floor with Rileys face squished between her hands. She has her mouth wide open and the dog is licking her face. She is laughing and tweaking and loving it. She has no idea that the Trade Center fell. She knows nothing of bombs or guns or terrorists. There are no "bad guys" in her world and there is no boogeyman in her closet. And when I long for her to be like a normal kid with normal kid thoughts and normal kid dreams, I have to remind myself that normal is not always better. She may not know how to read or write. She may not know how to tie her shoes, ride a bike, or jump rope. She may never have a tea party or a sleepover or a best girlfriend. And for that I am sad. But I find peace in the fact that she lays down at night without a worry or care. That she wakes up every morning ready for a new day. That she knows nothing of people starving, horrific floods, homeless families,ugly wars or missing children. She only knows what is right with the world and that is what's right with autism. And for that I am so thankful!
Camryn Faith Walker wakes up in a good mood every single morning. Every single morning!!! Doesn't matter if she's in a deep sleep snoring, or laying in bed lazy staring at the wall. Every morning I go in to get her I always know I am going to get a smile and a giggle and some crazy saying in a silly voice. I love waking her up because it is one of the few times I can snuggle to her without having her in a full head and body lock. I put my face in the back of her neck and her skin is so warm and smells like slightly sweaty maple syrup, sounds gross but I love it. She giggles and I give her smooches and it is one of my favorite things to do with her. It never lasts long, maybe two to three minutes, but I get so much enjoyment and fulfillment out of that short time it is totally worth it. By then my other two sleeping beauties have risen and with those two you never know what you are going to get! There can be whining and grouchiness, rolling eyes and bickering and it is one of the rare times I think "Why can't they be more like Camryn?"
This year Mason entered fifth grade at a new school and Natalie started kindergarten. Both of them were excited, but also equally nervous about their new surroundings, not knowing anybody and would they like their teacher. As a parent it is so hard to send your kids off into the sometimes hostile environment of school, knowing how cruel kids can be and thinking back to your own schoolday horrors. I felt for them the first day as I kissed them goodbye and watched them disappear into the great unknown. Camryn however, first day she was like "Whateva!". I woke her up, got her in her uniform, put her backpack on her and walked her out to the bus where a total stranger was waiting to drive her to school. She had no fears of not knowing the driver, no nervousness of the first day and no concern whatsoever that I would not be on the bus with her. In fact when I kissed her she pushed me away and said repeatedly "Bye, Bye, be good, drive carefully, bye!"waving like a wild woman. I watched her climb the bus steps and hold hands with the assistant who would lead her to her seat. Cam was just smiling and loving life! I waved goodbye as they pulled off and thought "What a beautiful blessing! The child knows no feelings of the fear of not knowing or the worry of not being good enough." Ahhh, the innocence!
Last week our family said "See you soon" to a much loved member of the family. We didn't say goodbye because we plan on visiting her in the not too far future, so see you soon sounded much better. "Aunt Jackie", while not a blood relative, is as much a part of our family as if she were born from my mom. She has been such a huge part of my girls lives, literally since the day they were born. She was in the delivery room for Mason and Camryn, and not for Nat only because we had moved at that time. My kids absolutely adore her and because she has no kids of her own, my girls were her "surrogate" kids. They would spend the night with her all the time, go to the movies, Disney, swimming, get ice cream, hang out with her and her two golden retrievers, and just made a ton of fabulous memories with her. We were so blessed to have her in our life for as long as we did. But life changes, as we all know and a new opportunity came up for her in her homestate of California. It was going to be a real positive move for her, as not only would she have a new start but her parents, and brother and nieces would be nearby. While my heart broke into a million pieces when she told me she was leaving, I was also so happy for her because she is a beautiful person and deserves the best.
Telling my girls was literally painful. I had a knot in my stomach for hours before I finally decided the right moment would never be and I sat them down and broke the news. Mason was upset, but I think she's secretly a man as she hides her emotions like a pro. Natalie crawled up in my lap and bawled. And Camryn, well I didn't even tell Camryn because she wouldn't understand what I was saying anyway. She doesn't communicate like that. When we said our goodbyes to Jackie, I could tell by the way Mason was behaving that she was very sad.We were at a yogurt shop downtown and she gave Jackie lots of hugs, which is not her nature in private let alone public and it broke my heart to see her holding onto the "Aunt" she loves so much knowing she wouldn't be hugging her again for quite some time. Natalie took it one step further and refused to let go of Jackie. She told her "I'm never letting you go!!!" and clung to Jackie's legs. Of course when it came to my turn, I started sobbing as we embraced. And then there was Camryn, totally oblivious to the somber mood. She was in the stroller tweaking up a storm ,trying to attack small dogs whose owners let them wander dangerously close to her. As we watched Jackie walk down the street Mason said "I wish I was like Camryn. She doesn't know to be sad about Aunt leaving. She doesn't even know she won't see her again for a long time." I hugged her and kissed her head. She was right.
In two days it will be the tenth anniversary of September 11th. The day the world changed Mason was eight months old and pointed to the television at the plane flying into the building saying "bird, bird". Today she is a ten and a half year old girl who has come to learn the ugliness of what really happened that day and that was no bird. We have been talking about it alot the past few days because of all the talk about it in the media. I don't want her to be afraid but I want her to know the real story so she will not be led astray by other kids versions or perceptions. It is a difficult conversation to have with the little girl I just took to Disney World last month. I want so much to protect her from all the ugliness in the world, but I know that is an impossible feat. And Natalie, while only five, she also hears things at school and has said a few things about 9-11 and oh it breaks my heart to see my baby with her big blue eyes and soft round cheeks talk about "bad people" who want to hurt us. Why is this world so ugly?
And then there's Cam. Sitting on the floor with Rileys face squished between her hands. She has her mouth wide open and the dog is licking her face. She is laughing and tweaking and loving it. She has no idea that the Trade Center fell. She knows nothing of bombs or guns or terrorists. There are no "bad guys" in her world and there is no boogeyman in her closet. And when I long for her to be like a normal kid with normal kid thoughts and normal kid dreams, I have to remind myself that normal is not always better. She may not know how to read or write. She may not know how to tie her shoes, ride a bike, or jump rope. She may never have a tea party or a sleepover or a best girlfriend. And for that I am sad. But I find peace in the fact that she lays down at night without a worry or care. That she wakes up every morning ready for a new day. That she knows nothing of people starving, horrific floods, homeless families,ugly wars or missing children. She only knows what is right with the world and that is what's right with autism. And for that I am so thankful!
Wednesday, September 7, 2011
Just Glad She's Not a Bull
Ewwwwwww! Yuccccckkkkkk! Grossssss! Steam, scrub, boil and rinse! I am tired of have fecal matter on me every afternoon!
That's right I said fecal matter! Otherwise known as feces,dung,crap,poop and doo doo. For the past two days I have been wiping it out of panties, rubbing it off hands, bleaching it off toilet seats and floors and scrubbing it off my body and I am totally grossed out!
I think you all know I am not defacating on myself. Not yet at least, but give me time, it may be happening at some point in the near future.This time I must give credit where credit is due and that would be to Camryn. She is up to her old tricks again and they stink!
It's been quite a while since we've had any major poop incidents with Cam. In fact, Camryn has been doing really well in all areas up until this past weekend. For some reason unbeknownst to me or Brad, Camryn had a really, shall I say "challenging" time this weekend. And of course it was a long weekend because we wouldn't want to short change ourselves with only two days of hellish behavior when we could get in a third. And even with all of the screaming and the crying and throwing and hitting and book tearing, dog molesting, liquid soap dumping, toy throwing and toothpaste squeezing, while completely draining and and quite disturbing, Brad and I handle it. But poop....I gotta tell ya, neither one of us is much of a fan.
You would think after almost eleven years of changing diapers that I would be used to the stuff, but I don't think one ever acquires a fondness for it. And if anyone has had the opportunity to develop at the very least an immunity to it, it would be me, as I have had more encounters with it then I care to say. Just recently Camryn has become very good with her toileting issues and more than not makes it to the potty on time for both numbers. And then we have the occasional "tried to make it but fell just short" which I completely understand and applaud her effort. But there are times, such as these past two, where I swear she does it either out of complete boredom, a sincere fascination for the stuff or my personal opinion...she likes to see me squirm.
With Nat having homework now that she is kindergarten and Mace having loads of it now that she is in fifth grade, afternoons are busy around here. I try to keep Camryn busy while Mason does her reading but when it comes to her math or a project she's working on she needs my help. At these times I put Cam in her room to "play", though she rarely does more than just stand at her door and scream, making homework time really stressful for her sisters. Yesterday was no different and I hadn't been with Mason five minutes when I heard "Do you have poop on your finger honey?" I wanted to f***ing scream! I stomped down the hall, threw open her door and sure enough, there she was with her pointer finger erect, looking like a little man with a sticky brown cap on his head. "UUUUUGGGGHHHH!!!!" I was soooo mad! I grabbed her by the wrist and stripped her of her clothes. Sure enough, in her panties was a quarter sized brown splotch, with a consistency of meringue, stiff peaks and all. She had obviously worked to get this out. I scolded her for pooping in her panties, I scolded her for putting her finger in it and then sat her on the potty to finish the job. Before I could get to her she grabbed some toilet paper to wipe it off her hands. Because of the consistency of the "specimen" the toilet paper tore off into little pieces, sticking all over her fingers. Gross! I picked them all off, wiped her hands with a baby wipe and started the bath for her. When she stood up, I noticed that her butt had the thinest layer of poop on it, obviously from sitting on the splotch in her panties. I tried to wipe it off with toilet paper but this stuff was like wallpaper glue and when I wiped it, rolled into little brown balls and fell on the floor. My lunch started making it's way back up. I used a baby wipe to moisten her bottom and wiped her as clean as I could get her, then set her in the tub. As I went to scrub her I noticed she had left a "print" on the toilet seat, ewwwwww. I washed her, then sprayed bleach EVERYWHERE, drenching the little poop balls on the floor and wondering how in the hell this became my life.
With Cam clean, the bathroom clean and poop balls down the drain, I got her dressed and brought her out to watch T.V. I needed to shower but Nat needed help with something so I ran my hands under scalding hot water and lathered up with about a half a bottle of liquid soap. I sat down at the table to help her when Camryn walked over and hit her on the head. "Lord, I just want to help my kid with her homework!!!" Nat began to cry and so I stuck Cam in her room again for hitting.
I came back out, helped Nat with her work and noticed it was time for Nat to get in the bath. I got her in the tub, started a load of laundry and then I heard it again. "Poop honey". OMG!!!!!!!!!!!
I got Cam out of her room and felt her pants. Nothing. Whew!! I had dodged the brown bullet!! I let her go into the bathroom to use the toilet while I checked the laundry. I had no sooner closed the washer lid when I heard Nat yell from the tub "Mom, Camryn pooped in her pants again!" Oh I was livid! I stormed down that hallway with a vengeance. I turned the corner and sure enough, there were her underwear on the floor with another pasty splotch and there she sat on the toilet, little pieces of white toilet paper all stuck to her fingers! AAAAAHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!
And, a bonus. A rather large ball of poo had somehow rolled out of her panties as she was taking them off, landed on the floor I had JUST bleached and been stepped on as she made her way to the toilet. I looked at Nat and began to say get out when she said "I know, I know Mom, put my bath toys away". This was not her first poop rodeo. There have been many a times when she has been booted out of the bath early so her sticky sister can get in. She is such a sweet girl and cleaned up with no problem. She got out, Cam got in and the process began again.
By the time Brad got home I was, well I guess you could say pooped! And pissed, sorry I couldn't resist. I was so discouraged, angry, sad and at the same time telling the story laughing because what the hell else can you do? He understood, as he has seen a few poop balls in his time.
And so it goes, the life of a mom raising autism. It's chaotic, it's draining,it's funny,it's depressing, rewarding,challenging and amazing all in one. Oh and stinky,I forgot to mention stinky.
That's right I said fecal matter! Otherwise known as feces,dung,crap,poop and doo doo. For the past two days I have been wiping it out of panties, rubbing it off hands, bleaching it off toilet seats and floors and scrubbing it off my body and I am totally grossed out!
I think you all know I am not defacating on myself. Not yet at least, but give me time, it may be happening at some point in the near future.This time I must give credit where credit is due and that would be to Camryn. She is up to her old tricks again and they stink!
It's been quite a while since we've had any major poop incidents with Cam. In fact, Camryn has been doing really well in all areas up until this past weekend. For some reason unbeknownst to me or Brad, Camryn had a really, shall I say "challenging" time this weekend. And of course it was a long weekend because we wouldn't want to short change ourselves with only two days of hellish behavior when we could get in a third. And even with all of the screaming and the crying and throwing and hitting and book tearing, dog molesting, liquid soap dumping, toy throwing and toothpaste squeezing, while completely draining and and quite disturbing, Brad and I handle it. But poop....I gotta tell ya, neither one of us is much of a fan.
You would think after almost eleven years of changing diapers that I would be used to the stuff, but I don't think one ever acquires a fondness for it. And if anyone has had the opportunity to develop at the very least an immunity to it, it would be me, as I have had more encounters with it then I care to say. Just recently Camryn has become very good with her toileting issues and more than not makes it to the potty on time for both numbers. And then we have the occasional "tried to make it but fell just short" which I completely understand and applaud her effort. But there are times, such as these past two, where I swear she does it either out of complete boredom, a sincere fascination for the stuff or my personal opinion...she likes to see me squirm.
With Nat having homework now that she is kindergarten and Mace having loads of it now that she is in fifth grade, afternoons are busy around here. I try to keep Camryn busy while Mason does her reading but when it comes to her math or a project she's working on she needs my help. At these times I put Cam in her room to "play", though she rarely does more than just stand at her door and scream, making homework time really stressful for her sisters. Yesterday was no different and I hadn't been with Mason five minutes when I heard "Do you have poop on your finger honey?" I wanted to f***ing scream! I stomped down the hall, threw open her door and sure enough, there she was with her pointer finger erect, looking like a little man with a sticky brown cap on his head. "UUUUUGGGGHHHH!!!!" I was soooo mad! I grabbed her by the wrist and stripped her of her clothes. Sure enough, in her panties was a quarter sized brown splotch, with a consistency of meringue, stiff peaks and all. She had obviously worked to get this out. I scolded her for pooping in her panties, I scolded her for putting her finger in it and then sat her on the potty to finish the job. Before I could get to her she grabbed some toilet paper to wipe it off her hands. Because of the consistency of the "specimen" the toilet paper tore off into little pieces, sticking all over her fingers. Gross! I picked them all off, wiped her hands with a baby wipe and started the bath for her. When she stood up, I noticed that her butt had the thinest layer of poop on it, obviously from sitting on the splotch in her panties. I tried to wipe it off with toilet paper but this stuff was like wallpaper glue and when I wiped it, rolled into little brown balls and fell on the floor. My lunch started making it's way back up. I used a baby wipe to moisten her bottom and wiped her as clean as I could get her, then set her in the tub. As I went to scrub her I noticed she had left a "print" on the toilet seat, ewwwwww. I washed her, then sprayed bleach EVERYWHERE, drenching the little poop balls on the floor and wondering how in the hell this became my life.
With Cam clean, the bathroom clean and poop balls down the drain, I got her dressed and brought her out to watch T.V. I needed to shower but Nat needed help with something so I ran my hands under scalding hot water and lathered up with about a half a bottle of liquid soap. I sat down at the table to help her when Camryn walked over and hit her on the head. "Lord, I just want to help my kid with her homework!!!" Nat began to cry and so I stuck Cam in her room again for hitting.
I came back out, helped Nat with her work and noticed it was time for Nat to get in the bath. I got her in the tub, started a load of laundry and then I heard it again. "Poop honey". OMG!!!!!!!!!!!
I got Cam out of her room and felt her pants. Nothing. Whew!! I had dodged the brown bullet!! I let her go into the bathroom to use the toilet while I checked the laundry. I had no sooner closed the washer lid when I heard Nat yell from the tub "Mom, Camryn pooped in her pants again!" Oh I was livid! I stormed down that hallway with a vengeance. I turned the corner and sure enough, there were her underwear on the floor with another pasty splotch and there she sat on the toilet, little pieces of white toilet paper all stuck to her fingers! AAAAAHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!
And, a bonus. A rather large ball of poo had somehow rolled out of her panties as she was taking them off, landed on the floor I had JUST bleached and been stepped on as she made her way to the toilet. I looked at Nat and began to say get out when she said "I know, I know Mom, put my bath toys away". This was not her first poop rodeo. There have been many a times when she has been booted out of the bath early so her sticky sister can get in. She is such a sweet girl and cleaned up with no problem. She got out, Cam got in and the process began again.
By the time Brad got home I was, well I guess you could say pooped! And pissed, sorry I couldn't resist. I was so discouraged, angry, sad and at the same time telling the story laughing because what the hell else can you do? He understood, as he has seen a few poop balls in his time.
And so it goes, the life of a mom raising autism. It's chaotic, it's draining,it's funny,it's depressing, rewarding,challenging and amazing all in one. Oh and stinky,I forgot to mention stinky.
Tuesday, September 6, 2011
A Fraction of a Good Time
Every year we try to take the kids on some sort of family vacation. Most of the time it's up to Beech Mountain, NC for the annual Woolly Worm Festival in October. Last year we made it a trip to Orlando to visit Shamu and this year we are lucky enough to be able to fit both in, which makes me so happy as going to the Woolly Worm Festival is a family tradition from when I was a kid.
The week before school started back, we planned a quick trip to DisneyWorld and Universal with the girls. They were soooo excited and if I may be perfectly honest, I was too, I mean come on it's Mickey Mouse we're talking about! The night before we left I sat on the couch with the girls by my side and browsed through the Disney website looking at all the rides and shows. Mason has been several times in her decade on earth but Nat has only been once, so she needed a refresher course. And then there's Camryn. Camryn has never been to Disney and sadly, she did not join us this time either, a decision that kills me every time. But when you are raising kids with an autistic sibling, it touches everything they do, everything. And so as our gift to them, we try and take that away for a bit, even if just for the weekend and show then our undivided love and attention and...money, we're talking Disney people!
As usual, when we go away with Mace and Nat overnight, my angelic,sent from Heaven above, mother-in-law keeps Camryn. She is one of those people that kids just gravitate towards. She has a child like spirit and energy about her and I am so, so blessed to have her as my childrens "Nanny". And Camryn is crazy about her, so that really helps. She and her husband "Papa Dave" still live in Port Charlotte where we moved back from, so they are about an hour and a half away. But it is worth the drive to know that Camryn will be well taken care of and loved and spoiled while we are off without her. Brad dropped her off on Saturday and Sunday morning we all piled into the Suburban for our annual Walker's 4/5th's family vacation.
First stop was Universal Studios. We had been there back in February of this year for Mason's birthday. She wanted to do the Jaws ride and E.T. but also was hoping to see the Dr. Seuss section of the adjoining "Islands of Adventure" park as well as the insanely crowded "Wizardring (sp?) World of Harry Pottah ( I know it's Potter, but it sounds so much better the way I spell it!) And of course, you cannot just go from park to park with one ticket. You must purchase a separate ticket for an additional fee to get into "Islands of Adventure". Because it was Mason's tenth birthday gift, we went ahead and bought tickets for both parks. And for some reason I assumed we would be able to do both in one day. I really should have known better! This was also a trip where Camryn would not be joining us but because we weren't staying overnight I just arranged to use our respite hours and have her caretaker watch her that day. Long story short, we were not able to do everything and we sure as heck weren't getting into Harry Pottah. They were handing out tickets with times to come back later in the day because it was so crowded. But we couldn't come back later because we only have so many hours with respite and the clock was ticking. Mason was upset and truthfully so was I. If we were a "normal" family we would just have stayed until the park closed, but we weren't and we had to get home to Cammy. I was disappointed that we had spent that money on the tickets and didn't get to see Harry, so I made a call to Universal, told them the situation and they were kind enough to re-issue us tickets to be used at any time during the year! Now that's what I call customer service!! And they really came in handy this summer when planning our trip because theme parks can get very pricey, so only having to pay to get into Disney was a blessing.
We had a great time at Universal and after helping E.T. "phone home" and escaping the jaws of...well "Jaws", we headed over to our hotel. It was about 8:00 pm by that time and I surprised the girls with 9:00 dinner reservations at the T-Rex restaurant in Downtown Disney. They were so happy! T-Rex is owned by the same company as "Rainforest Cafe" and is the same concept except instead of a rainforest setting with animatronic gorillas and elephants it is a prehistoric jungle with moving dinosaurs. And where it "storms" every twenty minutes over at Rainforest, in the T-Rex room the lights go out and a meteor shower takes place. Anyway, the girls were ecstatic about going, even though we were all about to drop dead from exhaustion after our day. It was a fun time and a great way to end our first day of vacation.
Monday we woke up bright and early and hopped on the ferry to see the mouse! No matter how many times I've been ( and as a Florida native, I've been ALOT) or how old I get, I never get tired of going to Disney World. I don't know how they do it, but it really is the "happiest place on earth". And to experience it through the eyes of my daughters, it made me tear up at times as I watched them bounce with excitement in line for "Snow White" and stare in awe at "Small World". And although I was having such a great time and was so happy to have this experince with them, I was sad that Camryn wasn't with us because I knew she would absolutely love the rides and the parades. I would say to Brad "Cam would go wild over this" and he would answer "Yeah, she would love it, but there would be no way we could bring her with the other two and not have it be all about her". And he was right, which is why we were there and she wasn't. When we take Camryn somewhere, everybody knows that the length of our stay depends on Camryn and if Camryn can't handle it, we leave. It's how we do things and our kids know that. If we are out to eat and Camryn has a hard time, we certainly aren't going to let her sit there and scream while everyone else in the restaurant is trying to enjoy their meal. And if we go to the zoo and Camryn is pinching kids then we have to leave because why am I going to put other people's kids at risk? While it's not fair for Mace and Nat it's the way it's gotta be right now and they handle it so well for their tender age. They are such good girls. In fact, as I was silently picturing Cam freaking out in excitement over the spinning teacup ride, Mason said "I really wish Cam was here, she would love this". And she continued to mention how she wanted Camryn to experience Disney. She is an amazing girl. I told her we would bring Camryn soon and she said "For my birthday, I want my gift to be Camryn coming to Disney with me". I teared up behind my sunglasses. "Mason, you are a wonderful sister. Camryn is so lucky to have you" I told her. "We'll bring Cams here, I promise". And we will, with a ton of preparation, an escape route, a pass to the front of the lines and family t-shirts that say something about Autism to answer anybody's question or stare. Oh and Benadryl.....lots and lots of Benadryl.
So our four-fifths family vacation was a huge success! We did whatever the girls wanted to do, hovered on their every word, held their hands, hugged them and smooched them to pieces and all the other things we don't always get to do as much as we'd like when Miss Cams is around. We just want them to know they are loved and just as important to us as Camryn and we want them to have "normal" family experiences without autism stealing all the fun. And even though these times are far less frequent than we'd like, they are so special to all of us and so necessary...for all of us.
Second week of October, we'll be piling in the old Suburban and taking a family road trip to the mountains for some hot apple cider and Woolly Worm racing. We'll play checkers by the fireplace, hike a few beginners trails and visit the local country fair. These are still some of my very favorite memories as a kid and young adult and I am so happy my girls will have them as well. Cam will be with "Nanny" making her own happy memories. It may not be the way most families do it, but I don't think I have to remind you we are not "most families". This is the way we do it and it works for us. And one day in the not too distant future maybe, just maybe I will find myself packing three little suitcases with three little swimsuits, three little nighties and three little jackets. And Benadryl.....lots and lots of Benadryl.
The week before school started back, we planned a quick trip to DisneyWorld and Universal with the girls. They were soooo excited and if I may be perfectly honest, I was too, I mean come on it's Mickey Mouse we're talking about! The night before we left I sat on the couch with the girls by my side and browsed through the Disney website looking at all the rides and shows. Mason has been several times in her decade on earth but Nat has only been once, so she needed a refresher course. And then there's Camryn. Camryn has never been to Disney and sadly, she did not join us this time either, a decision that kills me every time. But when you are raising kids with an autistic sibling, it touches everything they do, everything. And so as our gift to them, we try and take that away for a bit, even if just for the weekend and show then our undivided love and attention and...money, we're talking Disney people!
As usual, when we go away with Mace and Nat overnight, my angelic,sent from Heaven above, mother-in-law keeps Camryn. She is one of those people that kids just gravitate towards. She has a child like spirit and energy about her and I am so, so blessed to have her as my childrens "Nanny". And Camryn is crazy about her, so that really helps. She and her husband "Papa Dave" still live in Port Charlotte where we moved back from, so they are about an hour and a half away. But it is worth the drive to know that Camryn will be well taken care of and loved and spoiled while we are off without her. Brad dropped her off on Saturday and Sunday morning we all piled into the Suburban for our annual Walker's 4/5th's family vacation.
First stop was Universal Studios. We had been there back in February of this year for Mason's birthday. She wanted to do the Jaws ride and E.T. but also was hoping to see the Dr. Seuss section of the adjoining "Islands of Adventure" park as well as the insanely crowded "Wizardring (sp?) World of Harry Pottah ( I know it's Potter, but it sounds so much better the way I spell it!) And of course, you cannot just go from park to park with one ticket. You must purchase a separate ticket for an additional fee to get into "Islands of Adventure". Because it was Mason's tenth birthday gift, we went ahead and bought tickets for both parks. And for some reason I assumed we would be able to do both in one day. I really should have known better! This was also a trip where Camryn would not be joining us but because we weren't staying overnight I just arranged to use our respite hours and have her caretaker watch her that day. Long story short, we were not able to do everything and we sure as heck weren't getting into Harry Pottah. They were handing out tickets with times to come back later in the day because it was so crowded. But we couldn't come back later because we only have so many hours with respite and the clock was ticking. Mason was upset and truthfully so was I. If we were a "normal" family we would just have stayed until the park closed, but we weren't and we had to get home to Cammy. I was disappointed that we had spent that money on the tickets and didn't get to see Harry, so I made a call to Universal, told them the situation and they were kind enough to re-issue us tickets to be used at any time during the year! Now that's what I call customer service!! And they really came in handy this summer when planning our trip because theme parks can get very pricey, so only having to pay to get into Disney was a blessing.
We had a great time at Universal and after helping E.T. "phone home" and escaping the jaws of...well "Jaws", we headed over to our hotel. It was about 8:00 pm by that time and I surprised the girls with 9:00 dinner reservations at the T-Rex restaurant in Downtown Disney. They were so happy! T-Rex is owned by the same company as "Rainforest Cafe" and is the same concept except instead of a rainforest setting with animatronic gorillas and elephants it is a prehistoric jungle with moving dinosaurs. And where it "storms" every twenty minutes over at Rainforest, in the T-Rex room the lights go out and a meteor shower takes place. Anyway, the girls were ecstatic about going, even though we were all about to drop dead from exhaustion after our day. It was a fun time and a great way to end our first day of vacation.
Monday we woke up bright and early and hopped on the ferry to see the mouse! No matter how many times I've been ( and as a Florida native, I've been ALOT) or how old I get, I never get tired of going to Disney World. I don't know how they do it, but it really is the "happiest place on earth". And to experience it through the eyes of my daughters, it made me tear up at times as I watched them bounce with excitement in line for "Snow White" and stare in awe at "Small World". And although I was having such a great time and was so happy to have this experince with them, I was sad that Camryn wasn't with us because I knew she would absolutely love the rides and the parades. I would say to Brad "Cam would go wild over this" and he would answer "Yeah, she would love it, but there would be no way we could bring her with the other two and not have it be all about her". And he was right, which is why we were there and she wasn't. When we take Camryn somewhere, everybody knows that the length of our stay depends on Camryn and if Camryn can't handle it, we leave. It's how we do things and our kids know that. If we are out to eat and Camryn has a hard time, we certainly aren't going to let her sit there and scream while everyone else in the restaurant is trying to enjoy their meal. And if we go to the zoo and Camryn is pinching kids then we have to leave because why am I going to put other people's kids at risk? While it's not fair for Mace and Nat it's the way it's gotta be right now and they handle it so well for their tender age. They are such good girls. In fact, as I was silently picturing Cam freaking out in excitement over the spinning teacup ride, Mason said "I really wish Cam was here, she would love this". And she continued to mention how she wanted Camryn to experience Disney. She is an amazing girl. I told her we would bring Camryn soon and she said "For my birthday, I want my gift to be Camryn coming to Disney with me". I teared up behind my sunglasses. "Mason, you are a wonderful sister. Camryn is so lucky to have you" I told her. "We'll bring Cams here, I promise". And we will, with a ton of preparation, an escape route, a pass to the front of the lines and family t-shirts that say something about Autism to answer anybody's question or stare. Oh and Benadryl.....lots and lots of Benadryl.
So our four-fifths family vacation was a huge success! We did whatever the girls wanted to do, hovered on their every word, held their hands, hugged them and smooched them to pieces and all the other things we don't always get to do as much as we'd like when Miss Cams is around. We just want them to know they are loved and just as important to us as Camryn and we want them to have "normal" family experiences without autism stealing all the fun. And even though these times are far less frequent than we'd like, they are so special to all of us and so necessary...for all of us.
Second week of October, we'll be piling in the old Suburban and taking a family road trip to the mountains for some hot apple cider and Woolly Worm racing. We'll play checkers by the fireplace, hike a few beginners trails and visit the local country fair. These are still some of my very favorite memories as a kid and young adult and I am so happy my girls will have them as well. Cam will be with "Nanny" making her own happy memories. It may not be the way most families do it, but I don't think I have to remind you we are not "most families". This is the way we do it and it works for us. And one day in the not too distant future maybe, just maybe I will find myself packing three little suitcases with three little swimsuits, three little nighties and three little jackets. And Benadryl.....lots and lots of Benadryl.
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