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.
Wednesday, May 25, 2011
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!
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