As our family recently rang in the New Year, I reflected upon our experiences. I was equally curious what the children thought of a year that had, in my opinion, been our most challenging yet as we faced divorce, near bankruptcy, the introduction of IEP’s for both children and more. I felt, perhaps, it was time that both the world and myself were quiet for a moment to listen to the children we so passionately defend, protect and advocate for the rest of the year.
So, here are the words of my son Connor (Aspergers/ADHD/PANDAS Strep Syndrome/Bipolar/Anxiety) and my daughter Aurora (Bipolar/ADD/Anxiety/LHON/OCD/Pediatric migraines with aura):
Me: Can you tell me what your biggest challenge, as a special needs student, was in 2012?
C: It was a very hard year. Getting along with my sister and trying to stay out of trouble myself were hard. I had a lot of trouble with my sensory issues — like always touching or rubbing things, apparently even biting things, like the wall.
A: Med changes. (Can you elaborate?) Going on one med or going off another. Then I would have behaviors that got me into trouble with you or my teachers.
Me: How do you think your school (OHVA) helped you best in 2012 as a special needs student?
C: I was given an IEP. I like working one-on-one with my teacher, Mrs. Skillen, every week. The Behavior Provider that the school sent here to observe us is really nice, too. I hope she can figure out how to help us.
A: They gave me an IEP so I could learn. I get more chances to answer questions in smaller classes. I also get tested alone with someone I know; I like that. I like to be home-schooled because it gives me more time to be with my loving, yet stubborn cat!
Me: Out of all of your doctors and therapists, who do you felt helped you the most in 2012?
C: I don’t have a favorite. They all helped me in some specific way.
A: Dr. (Psychologist). He helped me understand about people and not to be afraid of them.
Me: What piece of technology that we use for your special needs helped you the most in 2012?
C: The iPad. Sounddrop (Develoe LLC) and Dexteria (www.dexteria.net) were my favorite apps.
A: The Kindle and the iPad. I love the Kindle because I can adjust screen brightness and text size. But lately, I had to use Connor’s iPad a lot because I need the bigger screen. And there are tons of great apps for the iPad. My favorite is Kitty UK (seller: Irina Koenig).
Me: What are your biggest hopes for 2013?
C: I want to clean-up the basement! I’m happy with school and therapy, I don’t want to change those.
A: I want to get a service dog, specifically a golden retriever or an Australian shepherd, for my special needs. (How would that help you?) By helping me see and helping me feel calmer and more loved. And helping my sensory issues.
It took me three different ‘question sessions’, but I think those answers are important. Are we truly loving and advocating best for our children if we never stop and listen to how they felt the last year of their life, school, therapy and services went for them? I found it really impressive that both children immediately answered the IEP from the school helped them them most. They weren’t even in the same room together when they gave those answers, so one did not influenced the other. I wanted to throw in the towel so many times while pursuing an IEP for both of them, that by receiving this answer I’m extremely grateful I didn’t. As my daughter’s eyesight declines due to LHON, it gives me strength to begin the lengthy journey to obtain a service dog that she so desperately desires.
“I did NOT sign-up for this!” began in 2012 with a tongue-in-cheek column title for a writer who is more than well-versed in sarcasm. It’s absolutely true. I did NOT sign-up for this! But I certainly would if I knew where the correct desk in Heaven was for children that society seems to think are burdens. Yes, my children can be stressful and high-maintenance. They are also delightful, very intelligent and seem to feel more compassion for others than I can say for the rest of the human race.
SNP: I did NOT sign-up for this! wishes your family a joyous 2013 — no matter how exactly you fit into the ‘special’ category. Please check out our Facebook page: I did NOT sign-up for this! Special Needs Parenting or email the author at email@example.com. I look forward to sharing more family adventures, product reviews and journeys through the worlds of autism and special needs.