It seems so long ago that things with Jake were going well. It wasn't...it has only been a couple of months since I felt secure in the knowledge that we were on the right track. We had taken a summer vacation that didn't end in my nervous breakdown. We were planning a trip to New York for the boys' birthday. Camp ended and the school year started, and all was right in the world. Things were so fantastically quiet that my husband and I even began discussing adopting a little girl. We finally felt like we had some balance. Where did it all go wrong???!!!
Looking back, the downhill slide began when we took a break from two of his medicines over the summer. You would think I would have learned by now....If It Ain't Broke, Don't Fix It!!!! Things still seemed ok, but not perfect. He was back on both supplements by the time school started. Even with that, it appeared that we had managed to change and change back without ruining anything we had worked hard to accomplish. True, his bowel movements never returned to normal, and his flapping went up and down, but he was happy, social, and well-behaved as far as I could tell (at least while he was at home).
Fast forward a few weeks. Jake is at a place now where he can't control his body. He is hyper like nothing I have ever seen before. His teacher thinks he is the bad kid in a class full of kids who actually are bad, and I shiver with secret terror everytime I leave him at school. I never know what I am going to hear when I pick him up.
Clearly something is going on inside his body to make him this way. There is an imbalance that I cannot fix. We now have him on 1/4 tsp of the Liquid Carnosine Plus and the regular dosage of the Behavior Balance Liquid. I changed juice only to change it back when I realized the new juice had Splenda (hoping that that was what was causing the issues). I also switched from Claritin (which also has Splenda....surprise) to a natural allergy remedy from Whole Foods (filled with herbs that I thought might help as well). Granted, it has only been a day, but to see him struggle with his self-control so much absolutely kills me!
As I troll the internet searching for answers, and try to consider what each microscopic change will do to my child, I wonder how it is that I got here. When something is wrong with your baby, isn't there supposed to be a doctor you can turn to to help you find the answers?! Ever since my children were infants, that has not been the case. Without getting into specifics, we have been to two GI doctors, two allergists, three ENTs, and I am currently considering changing pediatricians. We have also been to a developmental pediatrician, who we will be re-visiting next week! The term "practicing medicine" has applied to many of our circumstances. I have always felt like everyone was just learning their craft, and hadn't yet perfected it. I have had to become a doctor with a medical degree from Google university! I am fine with the fact that this falls on my shoulders most of the time, but when things go wrong I have no one to turn to. I need help figuring out what is going on inside of Jacob. I need for tests to be run and medicines to be administered. I need for someone with an actual medical education to take over. I would like to retire. The feeling of responsibility can sometimes be too much for me. I need to be rescued by a knight in shining lab coat!
Tuesday, October 13, 2009
Friday, October 9, 2009
In Defense of my Kiddo...
I did something recently that I was hoping I would not have to do. I told Jacob's teacher all about his background. I divulged his medicines, his issues that have been resolved, and the things that we still deal with today. Jacob started this year with an almost clean slate, and although his teacher knew he had been in therapy (she was his camp counselor, and at that point the therapist was coming once or twice a week), I had high hopes that this would be the year he would just be considered a "normal" kid. Apparently that was not meant to be. Due to some behavior fluctuations that I am hoping were due to a change in juice (and the sweetner used in it), Jake's behavior went from that of slightly energetic child to a full blown mental patient. Enter the Big J.....Judgement! His teacher went from loving his enthusiasm to blaming all of society's ills (ok, maybe just the class ills) on my poor, pain in the butt, kiddo. I had to respond. I did the one thing I knew could keep her from picking on him....I let her know how far he had come. Let's see her try to judge him now!!!
I never thought I would be one of those parents who would live in denial, yet here I am playing the "not my child" game. I blamed his lack of focus, inability to sit still, and crying fits on the stress of the class environment (thankfully it is a tough class, so it doesn't look like a lie). Meanwhile, Jacob's hyperactivity was skyrocketing. It took me watching him in a gymnastics class (something I try to avoid at all costs, for fear that I will run on to the floor and correct his behavior when he is not listening) to realize how bad things had become. Although his gymnastics teacher tried to sugarcoat it and tell me how much fun he was, she also told me that whatever I had fed him that day, I should never give him again. The poor thing could not keep his body still in any way, shape, or form. He spent the entire hour laughing like a loon, jumping up and down, and flapping his hands like a bird...behavior I haven't seen peak like this in months. A friend of mine, who was also watching the insanity, made sure to mention the special needs integrated class at her school. "He's flapping!" she pointed out, as if I hadn't noticed. "You know what that means!" she whispered. No...please enlighten me asshole. I am sure you have sooooo much experience with this. I am sure you have been living with these behaviors and trying to correct them for the past three years. Oh wait...that's what I have been doing!!!!
I am very open about where the saga of Jacob began. I tell my friends all about the medicine he gets on a daily basis. I am hoping it may help someone someday. I am also hoping it will protect him from being judged too harshly. Jacob is a happy, social, hysterical kid, and if people find out that it was predicted at one point that he would be autisitc, they look at him through different eyes. They realize how hard he, and I, have worked to get him to where he is.
I am not completely in denial. When I found out he was having problems in school, I promptly called his behavioral therapists to return to us. The huge bills my husband thought he was done paying started rolling in again, but when it comes to Jacob I will do whatever it takes. I am always on top of things, and I am his toughest disciplinarian and his harshest critic. I expect nothing short of awesome from him. I judge him everyday. There is one thing, however, I do not tolerate, and that is judgement passed by other people. I feel completely and utterly responsible for everything Jake is and does. I took a child who didn't talk or interact, and turned him into the goofball he is today. Judging him is judging me, and that cuts deep on a primal level. I have given blood, sweat, tears, and hours of sleep to help my Jacob, and I think we are both incredible. I never knew I could be so strong and resolute when it came to solving a problem, and no one knew that Jacob would ever be capable of graduating from therapy (even if it was only temporary). I may have played the sympathy card with his teacher, but what Jake needs is love and support, not judgement. If I have to tell every person we come into contact with who he used to be, then so be it. Maybe once they know, they will love him for what he has accomplished, and leave the judging to me!
I never thought I would be one of those parents who would live in denial, yet here I am playing the "not my child" game. I blamed his lack of focus, inability to sit still, and crying fits on the stress of the class environment (thankfully it is a tough class, so it doesn't look like a lie). Meanwhile, Jacob's hyperactivity was skyrocketing. It took me watching him in a gymnastics class (something I try to avoid at all costs, for fear that I will run on to the floor and correct his behavior when he is not listening) to realize how bad things had become. Although his gymnastics teacher tried to sugarcoat it and tell me how much fun he was, she also told me that whatever I had fed him that day, I should never give him again. The poor thing could not keep his body still in any way, shape, or form. He spent the entire hour laughing like a loon, jumping up and down, and flapping his hands like a bird...behavior I haven't seen peak like this in months. A friend of mine, who was also watching the insanity, made sure to mention the special needs integrated class at her school. "He's flapping!" she pointed out, as if I hadn't noticed. "You know what that means!" she whispered. No...please enlighten me asshole. I am sure you have sooooo much experience with this. I am sure you have been living with these behaviors and trying to correct them for the past three years. Oh wait...that's what I have been doing!!!!
I am very open about where the saga of Jacob began. I tell my friends all about the medicine he gets on a daily basis. I am hoping it may help someone someday. I am also hoping it will protect him from being judged too harshly. Jacob is a happy, social, hysterical kid, and if people find out that it was predicted at one point that he would be autisitc, they look at him through different eyes. They realize how hard he, and I, have worked to get him to where he is.
I am not completely in denial. When I found out he was having problems in school, I promptly called his behavioral therapists to return to us. The huge bills my husband thought he was done paying started rolling in again, but when it comes to Jacob I will do whatever it takes. I am always on top of things, and I am his toughest disciplinarian and his harshest critic. I expect nothing short of awesome from him. I judge him everyday. There is one thing, however, I do not tolerate, and that is judgement passed by other people. I feel completely and utterly responsible for everything Jake is and does. I took a child who didn't talk or interact, and turned him into the goofball he is today. Judging him is judging me, and that cuts deep on a primal level. I have given blood, sweat, tears, and hours of sleep to help my Jacob, and I think we are both incredible. I never knew I could be so strong and resolute when it came to solving a problem, and no one knew that Jacob would ever be capable of graduating from therapy (even if it was only temporary). I may have played the sympathy card with his teacher, but what Jake needs is love and support, not judgement. If I have to tell every person we come into contact with who he used to be, then so be it. Maybe once they know, they will love him for what he has accomplished, and leave the judging to me!
Thursday, October 1, 2009
Really Jacob?!
Let me share with you now a recent note from Jacob's teacher regarding his behavior in class.....
Hi Jenn,
We are seeing some improvement at circle. I use the picture of the rules you sent in and Jake over to review the rule he should follow when he needs reminders. He was using a very loud voice at lunch and touching the child next to him with his food. I told him he had to finish eating by himself at the small table since he wasn't using nice table manners. Earlier in the day he removed his shirt and shoes to do karate when he should have been at a center. I will be happy to implement Jill's behavior plan and hopefully that will help get him on track. Thanks.
Miss Shari
I think we can safely say that Jake would not get into the snooty private school doing things like that. I am pretty sure there were no kids stripping down to do karate when my friend and I took the tour. The kid is lucky he is cute or I would sell him to the circus! Ughhh! Another day, another bad report. I hope he gets it together at some point.
Hi Jenn,
We are seeing some improvement at circle. I use the picture of the rules you sent in and Jake over to review the rule he should follow when he needs reminders. He was using a very loud voice at lunch and touching the child next to him with his food. I told him he had to finish eating by himself at the small table since he wasn't using nice table manners. Earlier in the day he removed his shirt and shoes to do karate when he should have been at a center. I will be happy to implement Jill's behavior plan and hopefully that will help get him on track. Thanks.
Miss Shari
I think we can safely say that Jake would not get into the snooty private school doing things like that. I am pretty sure there were no kids stripping down to do karate when my friend and I took the tour. The kid is lucky he is cute or I would sell him to the circus! Ughhh! Another day, another bad report. I hope he gets it together at some point.
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