Amanda with Ming-Na Wen
Hello my name is Amanda and I am 25 years old and I live in Ottawa, Ontario, Canada. I live with mild right side spastic cerebral palsy. I also have a learning disability called Non Verbal Learning Disorder as well as living with ADHD. On top of having special needs myself I also have gone to college to get a degree to work with people with disabilities and I do work with children with special needs. I am also currently in University pursuing an undergraduate degree in Child Studies.
Miggy: Hi Amanda! Thank you so much for being here today and sharing your life and your story with us. Let's start with your childhood, what was life like for you growing up? At what point did you realize you were different from other kids? What did your parents do to help you adjust socially and educational at school while you were growing up?
Amanda: Remembering specifics of life growing up is a bit difficult as I am almost 26 now and there was a fair amount of my childhood and teen years that were more related to mental health issues that seem to have figured themselves out now. It is also hard to remember specifics. I grew up in a military family with my dad, mom and brother who is 18 months younger than me. I think in school I always had difficulty making friends and I still do. I was also bullied as a child and teen but in some ways the bullying has shaped who I am today.
I was a child who loved school and loved learning and still do as a university student. My parents worked hard to have supports in place such as extra time on tests, an ability to work elsewhere if there was a supply teacher due to me finding it difficult to focus in class when there was a drastic change such as that. They also made sure I had the ability to take breaks if I was becoming overwhelmed. One moment that stands out is that I attended a high school for grades 7-9 in one city and moved away to another where I completed grades ten and eleven. My family than moved back to the first city where I had started high school and made a concentrated effort to find a house in the catchment area of my original school so that I could attend the school I knew and was comfortable with and graduate grade 12 with peers I also knew. They took into consideration how I process change and the stress of change and made it happen,
Miggy: Can you tell us a little bit about your various conditions and how your needs affect your day-to-day life?
Amanda: So I have three disabilities that affect me. I have mild right side spastic hemiplegic cerebral palsy. This mainly affects my leg. I can walk but fatigue a lot faster than others and walk with a noticeable difference in gait particularly when I am tired.
I also have Nonverbal Learning Disorder (NLD) which in some ways is similar to high functioning autism but at the same time it isn’t. To put it easily due to NLD I have strong skills in English and am very verbal. I have difficulty with math skills though I work hard. I also have difficulty in social situations though I have gotten better at reading body language because I also work with children and youth with physical disabilities and my niche area is working with children who are non verbal and/ or use augmentative or alternative communication devices. This is not to say I don’t still have difficulties. I see myself as socially awkward. I also fixate or obsess on things in particular, not 100% sure this is NLD related or not but perhaps aspects of it is. These are special interests of mine and helps sooth me and in some cases I have met good friends because of my interests but they can also make me more socially awkward.
Finally, I also have Attention Deficit Hyperactivity Disorder (ADHD). I take meds to help me concentrate but the biggest way this effects me is in attention issues and impulsivity. It has made it so I have had to learn quickly when am I most productive. For me that is in the morning and before three, so I for example have scheduled my university courses to be before three so that I can concentrate better. I also have issues with impulsivity so sometimes sticking to a budget is hard but also sometimes staying calm and not reacting quickly in anger also results. Again I have learned coping strategies but sometimes keeping everything in check also leads to fatigue.
Miggy: What are the biggest worries you have as a disabled adult? Conversely, what are some of your hopes and dreams, either for yourself or for people with disabilities in general?
Amanda: I finally moved out from my parent’s house, September of last year, granted they own the house I am living in and I pay them rent but I live on my own and it is a start. That was one of my biggest dreams. I have held down jobs but nothing that pays super well and I dream that I can get a job I enjoy that pays me enough to live well. I have to remember to stay positive though and know that at least I am getting there.
For people with disabilities in general, there is a lot. I went to college and obtained a disability related degree so the idea of value and societal accessibility is something that is close to me and I am passionate about and probably could go on and on about. So I will keep it simple, I think most of all that we are accepted by society and are seen as valued members. Ideas about people with disabilities has improved in some ways, I will not deny that, but there is still so much work to continue to be done.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Amanda: So because of my Cerebral palsy and also difficulty with depth perception, I am really clutzy. I have gotten a fair amount of bumps and bruises over the years that I don’t know how I get they are just there. I have broken three limbs, thankfully none recently. I have broken both ankles, two separate times. I broke my left foot by walking across a flat carpeted floor and rolling over it. I broke my right foot years later by walking down two stairs into my garage and rolling over my ankle, to top it off I than went for a bike ride thinking I was fine. I did not realize there was anything wrong until I came home and could not get my shoe off because my foot had swollen up quite a bit. It may have not been funny at the time nor would it be funny to everyone buy I can’t help but chuckle thinking back now.
Miggy: As an adult living with disabilities, how can people best approach or respond to you? Is there something you wish other people knew so as to avoid hurtful situations?
Amanda: I think for me personally there are two huge things. One is do not underestimate me. I may have to do things a bit differently but guess what my experiences have helped me adapt activities and situations not only for myself but also children and youth I work with. I am good at it. Give me a chance.
The other big thing is I know I am socially awkward. I know I don’t always take sarcasm the right way or other social cues that many may take for granted. If I have taken something out of context or the wrong way or you think I have, let me know politely and calmly. It is how I learn and improve my skills.
Miggy: Is there an overarching message or lesson you would like to share about disability? Is there anything you wish other people and society on a whole understood more completely about living with disabilities and/or disability rights?
Amanda: In general, I think my biggest thing is don’t underestimate us. Sure we may look different, move differently, behave differently and, think differently but don’t we all? Don’t our differences make our world a better place? A place that is liveable for all. Don’t pity us because of our disabilities. Instead see the person we are and learn from us, learn from me. I love to educate people about the work I do, about my own disabilities. As much as I love to educate I also love to learn to from other’s experiences including other families.
Thank you so much for this opportunity.
Amanda, thank you so much for sharing your story! You said so many things that just went straight to my heart. First, that you said one of your dreams for people with disabilities in general is "that we are accepted by society and seen as valued members." AMEN Amanda. I hope for more of that too. And like you said, as a society we've made some strides, but we still have a lot of work to do. Which my next point sort of relates...as you were talking about one of the ways your disability affects you, you mentioned having issues with being impulsive and being able to control your temper. Amanda, sometimes I have a hard time keeping my temper in check as well--however, no one has ever related this to me having a disability, and yet for you...it's considered part of your disability. Once again, I was reminded through your post that we ALL have disabilities in one way or another--we all struggle, we all fall short. And yet here you are as someone with a three disabilities and at the same time very self-aware of your struggles and areas where life is a little more difficult for you. Reading your story today and thinking again about all I have learned from the people and families who have shared their stories with my I am reminded of this quote by Ralph Waldo Emerson, "Every man I meet is in some way my superior; and in that I can learn of him." Best of luck and big internet hugs to you Amanda!
Thanks again for being here and reading and sharing these spotlights you guys. I am always so humbled and feel so grateful to share these stories. I have more great spotlights coming up and am still behind with the recent slew of spotlight emails (it's either feast or famine I swear!) so please be patient and don't be afraid to send a quick follow up email if you don't hear back soon! And if anyone else out there would like to participate please email me at thislittlemiggy at gmail dot com.
Have a great weekend!