Thursday, October 4, 2018
Do What You Gotta Do
If you get your kid to recite the list of DC's Super Hero Girls' pets and their names to derail a panic attack at Ikea, you might be a spectrum mom.
Friday, September 28, 2018
Entering the Aspie World
Back in March I wrote a BLOG ENTRY describing Lorelai's recent struggles. Today, I will update.
We have been seeing a behavioral counselor for about 6 months now, and well, while she has gotten a bit more calm in certain situations, she has plateaued in most areas. She also has developed more difficulties over the summer. We now struggle with school work due to intense, immediate anxiety, and she has developed a sleep disorder. (To be fair, this could have been going on longer than I realized but we are very aware of it now.) She either takes hours to fall asleep and/or she wakes up for no apparent reason and takes 1-3 hours to fall back asleep.
I talked to her doctor and his nurses and he prescribed her an anti-anxiety medication (the one he recommended back in March) and we started her on it a few weeks ago. Since then we have seen minimal progress with general behavior and her sleep issues had zero change. The doctor said to try Melatonin or Benadryl to help her get to sleep. While this helped her get to sleep quickly, she was still waking up almost every single night for hours at a time. This past Thursday we saw her doctor and discussed her difficulties, her behavior, her progress with the meds (and lack thereof), and general observations and concerns. Ever the prepared student, I had compiled another list of all these things (along with a sleep log I did not take).
After talking with him, after he consulted with her counselor, after reading my list, after interacting with Lorelai, he has altered her diagnosis. While she does suffer from high anxiety (her previous diagnosis) and she has OCD (also her first diagnosis) we now see she deals with a lot of sensory processing issues, of course the sleep disturbances, and possibly dyslexia...all these things are pointing to a more cohesive diagnosis, one that falls on the spectrum. For those who wonder what that means, it means the Autism Spectrum. He was very quick to point out just high-functioning she is, and I had no doubt about that; this makes her fall into the Asperger side of the spectrum. He asked if I was surprised to hear that, and the answer was: No.
Ever since I started noticing her "quirks" and difficulties (some track since age 2) I wondered. As the years went on and the traits started piling up, I had a pretty solid feeling there was something more to it. While she does deal with a lot of anxiety and OCD, it is not in typical, traditional ways. Her initial diagnosis was a starting point, but I had it on pretty good authority that we would end up here; in the Aspie world.
A few people have asked "how do you feel" about her new diagnosis, and honestly, I feel very much the same as I did before Thursday. There is a slight difference I suppose...I feel confident that all my research and reading has prepared me to help my child and get her the assistance she needs. I feel relieved that I was not over-analyzing her; my instincts were correct. I feel a bit overwhelmed at the longevity of her confusing and bumpy path, but I also feel this is more than manageable, this will all work out the way she needs it to. Everyone is in her corner. Her doctor, her counselor, her family, our friends...plus, she is stubborn as hell, she won't quit until she's good and happy. (I mean that in the best possible sense...most of the time.) ;-)
Her doctor expressed his confidence that even though we won't figure out what works for her over night, he feels strongly he can help her. We all need to be patient and persistent with her meds, her counseling, her schooling, and with her precious little spirit.
She is quirky, sure; but more importantly she is smart, loving, inventive, and one of my very favorite people to be around. Asperger's just got a whole lot cooler. I would expect so, they just got a "Fairy-Robot-Pirate-Princess." ♥
We have been seeing a behavioral counselor for about 6 months now, and well, while she has gotten a bit more calm in certain situations, she has plateaued in most areas. She also has developed more difficulties over the summer. We now struggle with school work due to intense, immediate anxiety, and she has developed a sleep disorder. (To be fair, this could have been going on longer than I realized but we are very aware of it now.) She either takes hours to fall asleep and/or she wakes up for no apparent reason and takes 1-3 hours to fall back asleep.
I talked to her doctor and his nurses and he prescribed her an anti-anxiety medication (the one he recommended back in March) and we started her on it a few weeks ago. Since then we have seen minimal progress with general behavior and her sleep issues had zero change. The doctor said to try Melatonin or Benadryl to help her get to sleep. While this helped her get to sleep quickly, she was still waking up almost every single night for hours at a time. This past Thursday we saw her doctor and discussed her difficulties, her behavior, her progress with the meds (and lack thereof), and general observations and concerns. Ever the prepared student, I had compiled another list of all these things (along with a sleep log I did not take).
After talking with him, after he consulted with her counselor, after reading my list, after interacting with Lorelai, he has altered her diagnosis. While she does suffer from high anxiety (her previous diagnosis) and she has OCD (also her first diagnosis) we now see she deals with a lot of sensory processing issues, of course the sleep disturbances, and possibly dyslexia...all these things are pointing to a more cohesive diagnosis, one that falls on the spectrum. For those who wonder what that means, it means the Autism Spectrum. He was very quick to point out just high-functioning she is, and I had no doubt about that; this makes her fall into the Asperger side of the spectrum. He asked if I was surprised to hear that, and the answer was: No.
Ever since I started noticing her "quirks" and difficulties (some track since age 2) I wondered. As the years went on and the traits started piling up, I had a pretty solid feeling there was something more to it. While she does deal with a lot of anxiety and OCD, it is not in typical, traditional ways. Her initial diagnosis was a starting point, but I had it on pretty good authority that we would end up here; in the Aspie world.
A few people have asked "how do you feel" about her new diagnosis, and honestly, I feel very much the same as I did before Thursday. There is a slight difference I suppose...I feel confident that all my research and reading has prepared me to help my child and get her the assistance she needs. I feel relieved that I was not over-analyzing her; my instincts were correct. I feel a bit overwhelmed at the longevity of her confusing and bumpy path, but I also feel this is more than manageable, this will all work out the way she needs it to. Everyone is in her corner. Her doctor, her counselor, her family, our friends...plus, she is stubborn as hell, she won't quit until she's good and happy. (I mean that in the best possible sense...most of the time.) ;-)
Her doctor expressed his confidence that even though we won't figure out what works for her over night, he feels strongly he can help her. We all need to be patient and persistent with her meds, her counseling, her schooling, and with her precious little spirit.
She is quirky, sure; but more importantly she is smart, loving, inventive, and one of my very favorite people to be around. Asperger's just got a whole lot cooler. I would expect so, they just got a "Fairy-Robot-Pirate-Princess." ♥
 |
| Age 4, a costume concept all her own...and one of my favorite things she's ever done. |
Thursday, March 1, 2018
The Syndrome Mix
These days I do not post unless there is something weighing heavily on my mind, and this post is no exception.
Last Friday, we had a behavioral assessment with Lorelai and her pediatrician (who specializes in behavior disorders). I came in the room with a literal list of behaviors and tendencies I have noticed with Lorelai. Some are more recent, and some have been characteristics of hers for years. After our assessment, her doctor diagnosed her with a General Anxiety Disorder (GAD) and a degree of Obsessive Compulsive Disorder (OCD). He informed me, at this point, Asperger's was still a possibility, but he was unable to diagnose her with such so early on in his evaluation. He recommended behavioral counseling with the option of introducing medication if counseling does not help her through her current issues. Basically, she falls in the "Syndrome Mix."
We met with the counselor today, and I am very encouraged. She is warm, friendly, and supportive. She uses art therapy and hands on applications. She is going to help Lorelai identify what anxiety is, what it feels like to her, and how to recognize the different intensities of anxiety with certain situations. She will work with her to relax on her routines, object placement, and repetitive actions.
While we are just starting out on this journey, I feel we are arming Lorelai with the skills she needs to go on and live a more peaceful life. While her anxiety, obsessions, and compulsions will never completely subside, the goal is to teach her to work through them and push past them to reach a more comfortable state of mind. Medication might be added, diagnosis might be altered, but the goal remains the same.
I struggled with sharing this with people outside the family. I felt by announcing this I would be labeling her with some sort of negativity. After thinking, stressing, researching, talking, and thinking about it again...and again, I decided that I will not let this diagnosis define her and restrict her. While it changes how she may process things, she is still wonderfully Lorelai...and being self aware and mentally fit is never a negative.
There are so many kids out there battling anxiety, OCD, autism, depression, self-esteem, etc. My child is very high-functioning with her issues, but other families are not so lucky. These diseases should not strike fear or concern. Each child with special needs, whether great or small, deserves patience and kindness. Lorelai has a long enough journey ahead of her without worrying about the stigmas that come with these labels. I won't hide her GAD/OCD because I am afraid how other's may react. If you have Lorelai in your life, you have all of Lorelai.
She is passionate, intelligent, clever, thoughtful, funny, kind, reflective, and honest. She's got this.
Not a doubt in my mind, she's got this.
M.LEWIS
Last Friday, we had a behavioral assessment with Lorelai and her pediatrician (who specializes in behavior disorders). I came in the room with a literal list of behaviors and tendencies I have noticed with Lorelai. Some are more recent, and some have been characteristics of hers for years. After our assessment, her doctor diagnosed her with a General Anxiety Disorder (GAD) and a degree of Obsessive Compulsive Disorder (OCD). He informed me, at this point, Asperger's was still a possibility, but he was unable to diagnose her with such so early on in his evaluation. He recommended behavioral counseling with the option of introducing medication if counseling does not help her through her current issues. Basically, she falls in the "Syndrome Mix."
We met with the counselor today, and I am very encouraged. She is warm, friendly, and supportive. She uses art therapy and hands on applications. She is going to help Lorelai identify what anxiety is, what it feels like to her, and how to recognize the different intensities of anxiety with certain situations. She will work with her to relax on her routines, object placement, and repetitive actions.
While we are just starting out on this journey, I feel we are arming Lorelai with the skills she needs to go on and live a more peaceful life. While her anxiety, obsessions, and compulsions will never completely subside, the goal is to teach her to work through them and push past them to reach a more comfortable state of mind. Medication might be added, diagnosis might be altered, but the goal remains the same.
I struggled with sharing this with people outside the family. I felt by announcing this I would be labeling her with some sort of negativity. After thinking, stressing, researching, talking, and thinking about it again...and again, I decided that I will not let this diagnosis define her and restrict her. While it changes how she may process things, she is still wonderfully Lorelai...and being self aware and mentally fit is never a negative.
There are so many kids out there battling anxiety, OCD, autism, depression, self-esteem, etc. My child is very high-functioning with her issues, but other families are not so lucky. These diseases should not strike fear or concern. Each child with special needs, whether great or small, deserves patience and kindness. Lorelai has a long enough journey ahead of her without worrying about the stigmas that come with these labels. I won't hide her GAD/OCD because I am afraid how other's may react. If you have Lorelai in your life, you have all of Lorelai.
She is passionate, intelligent, clever, thoughtful, funny, kind, reflective, and honest. She's got this.
Not a doubt in my mind, she's got this.
M.LEWIS
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