It has been entirely too long since I’ve updated Aileen’s blog, and it would be nearly impossible to update everything over the past year, so I’m not going to try. I will say that in recent months, our nice, calm, little world has been quite shaken up. I now know what it must be like to live inside a snow globe. Every so often, someone comes along and sees this beautiful snow globe, and they can’t resist; they pick it up and give it a shake. Sometimes it’s a soft rattle and other times it’s violent chaos. Eventually, the snow settles, but it’s only until the next shake comes along.
There is really no better way to describe our life.
When Braxton was born, someone definitely violently shook our little world. Eventually, the snow settled, but we’ve been periodically shaken ever since. Lately, our snow globe life has been very calm and we grew quite comfortable. Perhaps that is why the most recent shake has taken such a toll. I finally had a chance to breathe and I didn’t have to live life on “high alert,” so I have been frantically trying to find my footing and wishing for stabilization.
It all started last summer when I went to our pediatrician and told her that I thought Aileen might be hitting puberty already, at only 8 years old. It sounded crazy then, but deep down, it was the only explanation and I desperately wanted someone to tell me that I wasn’t crazy. Our doctor did little to reassure me and possibly, in a small attempt to pacify me, she told me that we should come in every 3 months to keep an eye on things. I was worried that Aileen might be starting to develop. The doctor told me it was likely just some fatty tissue from her being slightly overweight. So, she told me to watch Aileen’s diet, get her active, and come back in a few months to re-evaluate the situation. Just before school started (August 2014), the doctor told me she would go ahead and refer us to an Endocrinologist, because she couldn’t tell if Aileen just had some adipose tissue, or actual breast tissue developing. Naturally, the first available was not until January 2015. So, we wait.
In the meantime, as you know, we’ve had some trouble with Aileen and have been thinking most of her issues stem from a possible undiagnosed case of Sensory Processing Disorder. We’ve been doing Occupational Therapy for about 2 years now with that diagnosis in mind, and have truly seen some tremendous progress. Aileen was constantly on the go, mouthing things, constantly touching something, always had to be RIGHT next to me, fidgety, and impulsive. Occupational therapy has helped her understand what sensory needs her body is craving and what appropriate tools she has to address the situation. When school started this year, her teacher told us she had seen such an improvement in Aileen. She was focused, volunteering in class, ahead of the curve on most of her work, and almost a completely different child than she was in 2nd grade.
Then, something changed. I started getting notes again about Aileen not focusing, not caring, not taking responsibility for her actions, despite the intervention methods her teacher and I had spoken about the previous year. So, I went up to meet with the teacher again and we brainstormed new ideas to help Aileen. Again, these things helped for a short period of time, but before you know it, the novelty had worn off and we were back at square one. To make matters worse, Aileen started to develop severe test anxiety, making it impossible for her to focus and finish the test. I armed her with a slew of fidget toys and sensory items to help her focus more in class. They helped, but her teacher was still concerned, as was I.
Sometime after school started, I found a local Karate Dojo with classes that fit our schedule and budget. Aileen had been dying to try Karate, so I finally enrolled her. Almost immediately, I saw a shift in her confidence and self-esteem. One of the major areas we had been struggling with. I watched her try hard and I could see the pride in her face when she would get something right. Just before Christmas, Aileen earned her yellow belt. In the 3 months it took, we saw less fighting and arguing with her at home, improved self-esteem, greater focus and a better sense of responsibility. Some of it carried over in to school, but there were still some lingering issues.
I finally sought out a child psychologist who would do private testing to screen for Emotional disturbances, Learning Disabilities, and ADHD. They sent us the paperwork that had questionnaires for Aileen, her teacher and myself to complete. Upon completing my portion of the questionnaires, I could feel the ground rumbling beneath me. Then, I received the teacher’s form and I helped Aileen complete her form. As I looked at all the answers, I realized that something was definitely not right, and felt as though I had waited too long to do something. I know that I had done everything I possibly could up to that point, but as a parent, sometimes you just beat yourself up no matter what. We went for the evaluation and were told we’d have results in about 2-3 weeks. So, we wait again.
Just as Winter Break ended, we received the results from the screening, and sure enough, they gave her a diagnosis of ADHD along with possible anxiety and depressive disorder. The report stated that we should treat the ADHD symptoms first and then rule out anxiety and depression, as some of those symptoms could overlap with ADHD. Lovely. So, immediately, I called the pediatrician to try and schedule an appointment to discuss the results and what our next steps would be. Do we medicate? Do we try alternative methods? What other alternative methods are left?? Although we were treating for Sensory Processing Disorder, many of the symptoms overlap, as do the treatments. We’d done 2 years of Occupational Therapy, done more physical activities, school accommodations, fidget toys, and lots of other things to try to get her to focus better and be successful in school. Naturally, making the appointment was not that easy. I’ve been trying to get this scheduled for 3 weeks no with no luck. Yet again, we wait.
A couple weeks ago, it was finally time for our Endocrinologist appointment that we had scheduled way back when. By the time the appointment was over, I surely felt like the ground had been pulled from under me and our little globe had been given a good flip upside down and shaken a few times. The doctor confirmed that Aileen was indeed developing and ordered a slew of tests to confirm the diagnosis. First, she sent us down to have a bone age test done to determine if Aileen’s bones were growing faster than her body. Then, she informed us that we needed to schedule an ultrasound of her ovaries to make sure there were no abnormalities. Lastly, we needed to do a special blood test to help us determine the level of hormones her body was experiencing and give us a better idea of where she is in the puberty process.
The bone age test revealed that Aileen’s bones are 12 years old, so there is definitely advanced maturation in her body. Last week we went in for the ultrasound and the blood test. For the blood test, we did a baseline draw when we arrived and then the endocrinologist gave her a very small dose of the medicine that is used to STOP puberty. Three hours later, we had to go back and have blood drawn again. I’m trying to get my hands on the ultrasound results (perks of working in the medical field) and we will get blood results in 2-3 weeks. *sigh* More waiting. The nurse very casually mentioned that depending on what the bloodwork shows, we may be looking at an MRI for Aileen as well. (Fun times) Puberty is the result of hormones released by the hypothalamus which is regulated by the pituitary gland in the brain. In some cases, there is an abnormality in the brain that signals an early release of hormones. The only way to rule this out is to have an MRI of the pituitary gland. I read that in rare cases (rare for females anyway), precocious puberty could be the result of a tumor in the ovaries or brain. While this day was incredibly chaotic, Aileen and I managed to get in some quality mother/daughter time and it was a blessing in disguise to be able to spend the day with my sweet girl.
Also last week, I was able to meet with Aileen’s teacher, the principal, the vice principal and the school psychologist, to discuss the appropriateness of 504 accommodations in light of the psychology screening. Aileen’s teacher has been absolutely incredible since last year and has bent over backwards to do whatever she can to help Aileen be successful. For me, this meeting was more of formality to get the jump on the help she will need when it comes time for standardized testing later this year and in the years to come. We were able to brainstorm new ideas to help Aileen and to my surprise, Aileen’s teacher had already put in to effect some of the suggestions from the screening report. She had started to shorten Aileen’s assignments, allowed opportunities to check for understanding, and of course, extra time for tests. For the first time in a year and a half, homework was not a battle. With only half of the work to do, it was all of a sudden more manageable and Aileen willingly did the work she needed to do. She still had difficulty understanding some of the words and allowed that to distract her from completing her task, but I did see an improvement.
We are also starting hippotherapy this week, which will help Aileen with balance, coordination, focus, and some of her emotional and behavior issues. We are excited to see how this might help, especially since she loves horses so much.
Amidst the chaos, some really good things are happening and we are continuing to do all that we need to ensure Aileen’s success. The snow in our globe is very slowly starting to fall and settle on the ground, but we won’t be getting too comfortable until we receive all of the test results and meet with Aileen’s pediatrician regarding the ADHD testing. For the love of all that is good, I hope that our snow globe is left alone once we get all of this figured out. Until then, we weather the storm and roll with it the best we can. If we meet soon, please don’t expect my head to be screwed on straight and forgive me if I am short or flustered. It’s been a rough start to the year and I anticipate things to get a little worse before they get better. But, things WILL get better.
[Why is parenting so gosh darn difficult?! Just when you think you’ve got it figured out. BAM!]