Wednesday, September 29, 2010

The Road to Recovery...Well, Not Really

Last Monday I drove two hours down to Fort Myers for Camryn's annual neurology appointment. Living in Port Charlotte since Cam was diagnosed, we picked a neurologist closer to our home than All Childrens and I have to say that I LOVE this woman! Dr. Morales has been seeing Cam for the past three years and she has been such a wonderful doctor.BUT, although I adore her, I do not want to have to drive two hours south everytime we need to get a refill or re-evaluation, so we will definitely be finding a doctor in St. Pete. But we needed to be seen so that Camryn's medicine could be refilled, and believe me we and all of Cams classmates want her medicine refilled, so Cams and I headed south early Monday morning. I always approach these appointments with mixed emotions. I am hopeful that the Dr. will say there is a new drug on the market that will take away all of Camryns issues and I am also scared to death to say that she will say there is nothing more they can do.
Driving that far gives me a lot of time to think. Even though Camryn is with me, the car is silent, as Camryn rarely talks in the car if it is just us. I love long drives for this very reason, for as a mom, extended periods of silence are few and far between. The ride down, I went over all the things I wanted to discuss, mainly the fact that despite being on a medication prescribed solely to curb aggressive behavior in Autistic children, Camryn continues to be aggressive at school and home. Four out of five days we get a note home from her teacher saying she has scratched her classmates and made them bleed and could we please cut her nails. Ummmm, I cut her nails ALL the time, but as you can imagine, if a sixty seven pound seven year old does not want her nails cut, and Brad isn't home to hold her down, then chances are it's not going to be the smoothest of manicures. Every day there are stories from Mason of Camryn grabbing kids next to her at car circle or pinching the patrol helping her to the car. And then of course there are the multiple incidents at home where Natalie is most often the target. And Riley, we cannot forget poor, poor Ry-Ry. I know that dog thinks to herself "Rescued my a**! I would have been better off at the shelter!" But don't worry, she gets LOTS of treats and belly rubs to make up for it!
So, of course, my main reason for this visit is to see if in the last year some miracle drug has come out on the market with promises of taking away all aggressive behaviors. Oh please!!! We walk into the office and as always I am immediately reminded that our problems are so little compared to what could be. A pediatric neurology office will always will do that. The Dr. calls us back and we head to the scale. Dr. Morales does not have a nurse. She does everything herself, weigh in, height, blood pressure,etc. And because Camryn is on medication that alters her blood pressure, it is extremely important that her weight and vitals are precise so that the correct dosage can be prescribed. I know this, and the Dr. knows this, but Cams? All she knows is she does not like to get up on the scale without holding on. She has major balance issues and even though it is just a few inches off the floor, doesn't matter, she doesn't like it.To get her exact weight, she must stand on the scale with her hands to her side for at least five seconds, which may have well been five hours becasue the girl was not going to do it! The Dr. is very understanding of kids like Cam, but she is also very stern and expects no less from them than a "typical" kid, so she was instructing Camryn over and over to put her hands to her side. Meanwhile Cams was trying to hold on for dear life, whining and looking very confused. "She doesn't like to be up on anything without holding on" I kept telling the Dr. " I know, but she needs to do this. Now Camryn put your arms down." Who would think weighing your kid could be such an ordeal? Several, and I mean several minutes later, the doctor took her best read and then we moved on to height. Ugggh! Again, Camryn didn't understand and she does not like to be touched on her head, so trying to get her to stand directly up against the wall with the measuring instrument flat against her scalp was not an easy task,but we did it. Height and weight on the chart, next was blood pressure. This is the most important of all the stats for her medication and to get an accurate number Camryn must sit COMPLETELY still for a whole minute! HA! And get this, to get her blood pressure taken, the Dr. sat her in a swivel chair! A swivel chair! What?? Well, if you know Cams or any Autistic child for that matter then you know how they adore a good spin! So of course Camryn immediately put her feet to the floor and pushed off for a whirl around the office. Dr. Morales was saying "Camryn, stay still!" and although I tried to keep quiet, I finally just said "Well, a swivel chair probably wasn't the best thing to put her in if you want her to stay still." The doctor gave me a  high five and laughed at her poor choice of seating. Finally, I was able to distract Camryn long enough to get a good blood pressure reading. It was fine, mine however was through the roof I'm sure. Whew! Vitals are done, moving on to the exam room.
For some reason, Cams loves a good exam table with a crisp sheet of white paper draped over it. She climps up on them like she's mounting a horse and then lays down and says "Take your temperature sweetie". The paper gets torn to shreds in the process, but Cam is in one place, so who cares?
The doctor sits down with me and I tell her my frustrations with Cams aggressions. I tell her how I don't think the medicine is working and that if it is, I can't imagine how aggressive she would be if she weren't on it. I tell her how we get notes home all the time. I start to cry, as I usually do at these appointments and I tell her how I can't go anywhere with Camryn where there will be other kids because I am so fearful she will hurt someone and that she scratches and pinches her sisters to pieces and that it breaks my heart. Dr. Morales is so kind and she took my hand and said "I know honey". "I can handle her not talking normal. I can handle her throwing fits. I can handle that she will live with us for the rest of her life. But I cannot handle not being able to go places that other moms go without a care."
The doctor looked at me with sad eyes and told me that unfortunately the aggression would get worse as she got closer to puberty and that we needed to find a medication that curbed it before it got to that point. She also told me medicine was just part of the solution, that Camryn should be receiving at least 20 hours of ABA therapy a week to really get her behavior in check. Wow. ABA is an intense one on one therapy that is supposedly very successful with Autistic children. It is also very expensive and usually not covered by insurance. I have known about it for years, but because of the expense and the intensity of it, I have never gone that route. I asked her about diet and metronome therapy, both of which she didn't seem to think would work with Cam. I value her opinion,but as far as trying the the diet and metronome therapy, I'm still going to try them. I have heard too many positive things not to.
After discussing her medication, it was time for the physical exam. Keep in mind that Camryn does not like to be touched. Brad and I have noticed Camryns right shoulder protruding more than the left. I asked the doctor to take a look and as she went to lift Cams shirt, Cam pinched her. Wrong thing to do. The doctor, who is of a bigger build, looked Camryn straight in the eye and said "No Camryn! No pinching! Unacceptable!!" Camryn's lip curled up and I thought I would die. She knew she had done something wrong, but the doctor was lightly touching her bare skin and she didn't like it and because she can't say "Hey doc, would you mind not doing that?" she did the next best thing and pinched her.
The doctor proceeded to take off Cams shirt and Cam pinched her again. Why oh why Cam? "No pinching Camryn!!If you pinch me again I am going to pinch you back!" Again Cams lip curled up and her eyes were wide as saucers. One last time Dr Morales tried to lift Cams shirt and well, she pinched her again. This time, the doctor said "That's it! You are in time out for five minutes!" and took Cam by the hand, led her to the corner, put her nose towards the wall and stood back to back with Cam. The room was silent and very awkward. It broke my heart to see my little girl be reprimanded so harshly by someone else, but I also knew that Camryn knew better and that she could not behave like that. When the doctor let her out of the corner, Camryn walked over to her and as if in slow motion leaned forward and kissed the doctors nose. It was so stinkin' cute! Dr Morales looked at me and said "Does this kid know how to work it or what?"
She finally got to look at Cams back and agreed that there could be an issue. She ordered a spinal study to determine if there was curvature. We then talked about how Camryn has always had a "look" about her, ever since she was a baby and that in several of her pictures she almost looks as if she had Down's syndrome. It is something that Brad and I have discussed several times, but I never said anything about to ther doctors. But today I thought I would put it all out there, so I asked the Dr. if it was possible that Camryn could have what is called "Mosaic Down Syndrome", which is a very mild form of Down's. I had heard about it years ago and kept it in the back of my mind. She nodded and said that she had always thought Camryn had a "look" about her as well and that even though Cam had been through genetic testing when she was a toddler that they now have better, more precise testing that can detect things the old tests couldnt. She wrote out a script for a test I cannot prounounce let alone spell, with a warning that insurance was probably not going to want to pay for it without a fight. Efff-ing insurance!!
And then, the last thing on the agenda, was my question of all questions.....What do we do when it comes time for menstruation. I apologize if this is too much info. but you know I like to keep it real.  I worry about it all the time because if you think changing a seven year old's poopy pullup is bad, well.....yeah.
The doctor told me that they put kids like Camryn on the birth control pill when that happens, which is what I figured. Another medicine! I hate that! Hopefully we still have a while before that happens....please God!!
We finished up the appointment and left with four scripts...one for a new medication for aggression, one for a spinal study, one for genetic testing and one for ABA. I really should have asked for one for Valium...for me!
Cams and I climbed into the car and started our journey back home. Again, the ride would be quiet which again, gave me plenty of time to think. Driving down I cherished the silence and chance to run through all the things the doctor might say. "There is a new drug out that takes away all aggressive behaviors! There is also a new drug out that will make her be able to have a normal conversation! And there is a new drug that will take away her Autism!"
But the doctor didn't say any of those things. And who knows what I would do if she did. I looked back at Cams, sitting in her seat, deep blue eyes staring out the window and I thought about how much I loved her. I merged onto 75 and turned on radio. Sometimes silence is over-rated.

Friday, September 10, 2010

Both Ends of the Candle

Every day I get on this computer and write about raising an Autistic child. The in's and out, trials and triumphs. I do it to vent, I do it to educate and I do it because I love to write. But I am not only a mother to an Autistic child, but to two other neuro-typical children as well, or without being politically correct, normal kids and co-exisiting in these two worlds can sometimes be a real challenge
Anytime there is more than one child in a household there are bound to be times when one feels neglected or jealous,it's normal. But when children grow up with a sibling of special needs, the scales are almost always tipped unintentionally in favor of the child who needs more help.
Mason was an only child for almost two years. The first and only grandchild on my side of the family, she was perched high above the rest of the world on a golden pedastal. She was beautiful, intelligent, and totally gifted, I mean come on, aren't all firstborns? To ask my parents there had never been a smarter, sweeter more adorable baby born, ever! And of course she had Brad and I wrapped so tight around that pinky I'm surprised it didn't cut off circulation. For two years, the world revolved around her.But of course she remembers none of it.Why is it that when we are the cutest and most adored in our lives we are unable to have any recollection of it?
When Cams was born, of course the attention shifted to the new baby, but Mason rolled right along with it, never showing any resentment or jealousy toward her sister.
As time went on and it became evident that Camryn had some issues, more and more of my time was taken up with doctors visits and therapy appointments. Mason never suffered believe me, my family was more than happy to watch her, but a pattern started that continues to this day and it makes me feel so guilty.
Because of Camryns Autism, many of the activities that toddlers enjoy were not on Cam's to-do list. She didn't sit through movies, didn't play nicely with others and for a long while, going out to eat with her just didn't happen. However Mason was a typical little girl who begged to see every animated film advertised and loved to run free at the playground. Because of Brads work schedule, I was often alone with the two kids all day. I had Mason attending Pre-K twice a week when she was 2 and then five days at 3 and up, but still she got bored at home with a sister who didn't interact with her as she wanted. My family and Anna, who lived very close by at the time, was so good about helping with Mason. They would take her to the movies, to the circus, out to eat, to festivals and I would stay home with Camryn. I was so happy that she was able to experience those things and spend time with the people who loved her so much, but I was also very jealous of them for getting to share those times with my daughter when it should be me. Mason will be ten years old this February and I have been to the movies with her maybe five times, five times! She has seen every movie that has come to the big screen for kids, but that was courtesy of my brother. He is very good about spending time with the kids and going to the movies is their thing. He even takes Nat along too, which again, I so appreciate, but still feel sad that I am not there. Chuck E.Cheese, every kid goes there right? It's like the law or something, if you're a kid you have to go to Chuck E. Cheese at least once. Mason and Nat have been there a bazillion times. I have been with them once. Camryn doesn't do Chuck E Cheese. Before we moved  back to St. Pete, my mom would take Mace to the Santa Clause parade downtown every year. I have been twice. Another thing Cams doesn't do is parades. I am not trying to sound like a whiner though I probably am, just a kind of "venting" session to say that I feel guilty about not being there with my other two girls for experiences that I feel a mom should share in. I am so thankful and know how blessed I am to have such an involved family and that is something I have always acknowledged. But Mason has told me on more than one occasion she wished I could come to these things.
I plan special days with her. We go out shopping for something she likes or get a bite to eat. The times are few and far between but I always try and let her know how much they mean to me and how much I enjoy her company. She has grown into such a responsible, young lady and a very cool kid. Having Cams for her sister has presented so many challenges in her life, but has also given her a perspective of the world I just don't think she would have had she not been forced to look through the eyes of a sister of the spectrum. She is extremely caring, generous and very emapthetic to her peers. She is non-judgemental and openminded and has an amazing sense of humor. She has become Camryn's protector at school, looking out for her and keeping her amused and out of trouble at car circle. It's a huge responsibility and I have told her more than once that she does not have to watch Cams at school, there are teachers for that. But she wants to do it. "No Mom, I can handle it" she said. And she can, I watch her from the car line and she is keeping a close eye on her sister, doing whatever she needs to do to keep her occupied and happy. There have been several incidences already where Cams has "assaulted" a child sitting near her and Mason takes the appropriate action, whether it be scolding Cams or taking something away from her. The principal has told me on more than one occasion that Mason is an amazing girl and a wonderful big sister. It makes me so incredibly proud of her.
I know that having Cam for a sister cannot be easy. The screaming is sometimes so loud you'd swear your ears were bleeding. The constant scratching and hairpulling. Cleaning your room only to have hurricane Cams come through. Having to decline invitations to certain events or leaving early because it's not working for Camryn. It's rough and my heart breaks for Mace and Nat every time I see them fall on the sword for their sister.But I know in my heart that two incredible women are being molded and shaped by the very sister who often brings them to tears. I cannot wait to see what strong, good hearted people they will grow into and how they will change the world.

Wednesday, September 8, 2010

A Literal Labor Day

Happy Belated  Labor Day!  A three day farewell to summer filled with barbecues, pool parties,and poop, don't forget the poop. Well, I don't know about the rest of you, but here at the Walker house, while other families are choosing to sleep past their normal weekday wakeup time before lazily starting their day, we are up with the sun, cleaning ground in poop off wood floors and toilet seats, while Cam sits in a bathtub of murky water, oblivious to the fact that little flakes of feces are floating all around her.Yes my friends,that is how we kick off Labor Day weekend around here.
Of course, Brad and I had other plans for Saturday morning, first one being trying really, really hard to sleep in. Nothing extravagant, maybe 7:30, do we dare dream of 8:00? Then maybe out to breakfast or at least breakfast brought in with the kids. Something a little extra special to kick off the holiday weekend.
Now when I say sleep in, I mean stay in bed, because Camryn does not sleep in....ever. She gets up around 7:00, opens her door, stands at the babygate, talks about Ry-ry,and yells out "I need help!" so we will open her gate. This is when Brad and I assume our literal undercover positions and stay completely silent, as even the slightest sound will elicit a scream from Camryn that she wants out. We breathe only when absolutely necessary and after a tense five minutes or so, we hear Cams feet pounding back to her bed, which means she will lay there and talk to herself for another 30 minutes or so, and we will definitely take it! But this year Cams mistook Labor Day for it's literal interpretation and decided to put us to work right away, you know get the party started early. I heard her say "Poop" about 6:55 a.m., and I knew when Cam says poop, it usually means there is some in the near vicinity. Against my better judgement, I chose to ignore it. At about ten after seven, Natalie comes running into our room and delivers a message that Camryn has pooped all over her room. "It's everywhere! I saw it!" she exclaimed. I pulled the covers off from over my head and one sniff confirmed Natalies story, poop was in the air.
Brad was first to arrive "on the scene".  "Awwww %&*#!" Oh this was going to be bad. Four letter words don't float freely around our house. In fact, we try really hard to filter what we say, even banning the words"stupid" and "shut up". But on occasion, this being one of them, try as we might one escapes and goes directly from our lips to Cam's brain, where it is stored in a little section labeled "Words to Shout Out in Church."
I heard the gate click open and Cams feet pounding through the house. Brad was yelling "Nooooo" as she proceeded to leave a trail of poopy footprints in her path. He managed to grab her, but not without getting his hands dirty and wrangled her into the tub. By this point I was up making my way to survey the damage. Wow, I've seen a lot of poop in my nine and a half years of motherhood. Poop in diapers, poop on cribs and poop used as body paint. But when a seven and half year old child has a bowel movement on their floor and then steps in it, smears it, wipes it... there are no words. Toys and books that happened to be in her path were now smudged with poo. And I don't know about you, but if something gets poop on it, unless it's like a family heirloom, I am not trying to salvage it. I don't care how cute it was or how much fun they had with it. No, if it's been pooped on consider it gone. So while Brad is trying to scrub Camryn down, I get out the old mop and bucket and start bleaching the heck out of the floor. Meanwhile Nat and Mace have been confined to their room,and are sitting on their beds watching the whole ordeal. Oh the childhood memories they will have! I can hear Brad telling Camryn to sit down and Camryn is fussing, yelling "Let me get the poop off honey!" I love my husband. I finish Cams room and follow the trail of poop prints to the bathroom, where I am then greeted with a toilet seat covered in nearly dried pasty poop. Apparently Camryn tried to use the toilet after the fact. It is only 7:30 by this time and Brad and I are operating on a very empty stomach, which can be good and bad. I really could have used some coffee though. Brad gets Cam out of the bath and I wipe down the last of the affected areas. It is now 8:00 a.m. Saturday morning, the first day of our holiday weekend and we had already anti-bacterialed, hand sanitized, and deodorized every inch of the house and ourselves. Cam was oblivious,sitting on the couch with a Tootsie pop watching Oobi. When Mom and Dad wake up like this, a nutritious breakfast is probably not going to happen, which is fine with the kids. I had been dreaming about a nice fluffy omelet or hot stack of pancakes, but after that mess I opted to wait for lunch. I looked at Brad, sipping his coffee and told him I was going back to bed. I shut my door, closed the blinds and crawled back under the covers. What else would you expect me to do? I was pooped! ;)

Friday, September 3, 2010

34 and Still Getting in Trouble at School!

I forgot to pick my kids up at school this Wednesday. Forgot to pick up my kids! Now, in my defense it was an early release day, which happens every Wednesday in Pinellas county and we did not have such silliness in Charlotte county schools, so I am still not used to it, The regular dismissal is 2:50, but on Wednesdays it is 1:35 allowing teachers extra time to plan during the week. The first week of school, they went all out making sure the parents knew to pick their kids up early, sending home flyers, automated phone calls the night before and a clear message about early release on the school marquis. So despite my scattered brain I got it, I picked them up early. This week however, only week 2 I should mention, no phone calls, no flyers. Nothing. And because I'm still getting used to this new schedule plus the fact that I have a tendency to be a bit unorganized, it completely slipped right off my mind that I needed to pick my daughters up at school an hour and fifteen minutes earlier that day.
I usually leave my house at 2:30 to get in the line. We live so close to the school it takes me no time at all to get there. This past week has been a rough one for various reasons, and I was feeling so rundown. Not wanting to be sick for the holiday weekend, I decided to take a nap before I got the girls. I bribed Natalie with a quarter to lay down with me and set my alarm for 2:20, giving me ten minutes to come out of my nap fog before I left for pickup. I left my phone on, but turned the ringer to beep/vibrate so it wouldn't wake Natalie. I of course would hear it, right? Well, no, apparently not. So I close my eyes at 1:30 and before I know it the alarm is screeching me awake. Wow time flies when you're napping! I was just getting ready to make some coffee when my phone beeped. It was the school. "Hello Mrs. Walker? This is Sawgrass Elementary, I called you a few minutes ago too. We still have your two daughters here." So I look at the stove clock which says 2:24 and say" Okaaaayyy, umm.." "It's early release day, did you forget?" "Oh my gosh!!! Oh my gosh! Yes, I totally forgot! I am soooo sorry!" I kept apologizing and "OMG"ing. " No problem, but your girls are a little upset, you want to talk to them?" Okay, so now as if I don't feel like a big enough loser, my daughter's in the front office of her new school thinking I have been in some horrible car accident or hopped a boat to Bermuda like I've threatened on numerous occasions. Mason is a worrywart by nature and she comes by it naturally,her nerves of jelly passed on courtesy of yours truly. So I could only imagine how many times she had twisted her shoelace around her fingers or how many hours of therapy were going to be needed after this incident. I told her how sorry I was and that I was on my way. Now the secretary had told me my "daughters" were upset. I knew Mason was and would expect nothing less, but Cams? I highly doubted it. I asked Mason if her sister was alright. "Oh yeah, she's fine. She did pinch a little Pre-K student, but she's just sitting here now." I knew it. The beauty of Cams's mind is that worry rarely finds it's way in. For all Cams knew, she and Mace were on a field trip to the office. She has no concept of time, only that there is never enough of it when it comes to the merry go round. And the fact that she doesn't know to worry like Mason is such a blessing for so many reasons, but in this particular situation such a blessing for Mace because I can only imagine the monstrocities the two of them could have conjured up about why I was late and what could have happened to me. And in a situation where the normal procedure would be for big sister to calm little sister, in these circumstances it was quite the opposite, with little Cams keeping Mason from hyperventilating about my tardiness.
As I pulled into the car circle, the principal walked the girls to my car. The principal! I was so embarrassed. I laughed it off and asked if this was where I was to pick up my Mother of the Year award? She laguhed and said not to worry, I was one of about ten other parents who had forgotten. I felt a slight bit better,until Mason chimed in with "Ten parents out of like 500 mom!" Ohhhhh, yeah, then I really am pathetic.
I made it up to them with cookie dough shakes from Steak and Shake and 6 times over "Thrill Hill" (only a St. Pete native knows what I'm talking about here).
Mason told me how the whole thing went down, how every car that pulled in she thought was me, how Cams pinched a little girl next to her who was already crying for some other reason and how after 45 minutes waiting for me, the coach in charge of parent pickup told the office staff that the kids were coming inside, then pointed at Camryn and said "But this one here, she's gonna need an adult with her" LOL
I assured Mason that I would never be late again, but that if for some unforseen reason I was, I'd give her twenty bucks.I think she's hoping I'll forget again next week. I told Cams I was sorry for being late, to which she gave me a snap said "I wanna see Ry-ry". Ahhh, to live in her world :)