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.