It’s Monday again, and I’m still exhausted from a busy weekend. It’s 4:25 and I haven’t gotten
anything (scratch that) as much as I would like accomplished.
Last week we had a PPT (planning and placement team) meeting and the principal asked, “What’s your vision for the future?” Setting goals without a vision for the future is like building a house without a blueprint. We all need a vision for the future. “To make dreams real first you need to have them.” I read it in a fortune cookie, but I took it as words of wisdom and taped it up on my refrigerator.
So what is my vision for the future?
Well, let me adjust the circuits on my iPhone to July 1st 2027. My son graduated high school this year. He is now 21 (disabled children in the United States are entitled to a free and appropriate public school education up to the age of 21.) Stephen is living in a multi-family home with his own apartment on one side and family on the other. He’s able to take care of himself and he’s well prepared for independent living. He has the support of his family/neighbors. He’s not all alone in the world. He can communicate his needs, wants, thoughts, and feelings.
Rewind to today,
my son is non-verbal autistic and legally deaf-blind. He has no formal language skills. The doctor’s don’t have answers to the mysteries of his health, and we gratefully accept the miracles we’re blessed with. Like many parents of children with special needs, we still lose sleep worrying about the future. We rejoice with other parents at their children’s well-being and we cry with others as they grieve and mourn. It’s the heart-breaking reality we live with and we wouldn’t trade it for the world.
If you don’t have a child with autism or special needs you may wonder how we find the strength to keep it together. The truth is these are special kids and they teach us so much about life, love, and laughter. When it comes to life, love, and laughter I hope I never stop learning!
One reaction I often get when it comes to educating my son is, “He’s no Helen Keller.” Mostly it is an attitude I encounter from those who have no training or experience in the field of deaf-blindness. It’s only been said in so many words once. I quickly replied, “You’re absolutely right. Helen Keller lost her hearing and vision later in life than Stephen did. Stephen did not acquire formal language skills before loosing his vision and hearing at about 5-6 months old. You learn how to learn in infancy. They experienced different developmental milestones.”
It still seems strange to me to have to teach special education teachers, administration, therapists, and speech and language pathologists about deaf-blindness but the reality is the combination of vision and hearing loss is a relatively rare disability. It’s ok though, I’m still learning too. Prior to having a child diagnosed with blindness, I wasn’t even aware that there are 2 basic types of blindness – blindness with light perception (the type my son has) and blindness without light perception (my preconceived stereotype.) I also did things like rattling keys to see if my son could hear (not a test for deafness – clapping your hands is not recommended as a hearing test either.) A slight hearing loss is known to cause a 2 year speech delay (slight means you hear most things and the hearing loss can likely be corrected with hearing aids.) Imagine the language delay for my son, diagnosed with both autism and combined vision and hearing loss.
I feel so weird teaching teachers. There is so much about teaching that I do not know, and I learn as much from my son’s teachers as I teach them. Together we make a great team – their wide range of experiences combined with my knowledge of my child. There is so much we can learn from teaching a deaf-blind child. The teaching strategies used can work on literally anyone, particularly those with autism, non-verbal children and adults, PDD-NOS (Pervasive developmental disorder not otherwise specified – the “old label” for autism), and communication disorders.
Well, Monday is almost over so I will wrap this up. My hubby is giving me dirty looks and telling me, “you’ll turn into a pumpkin” meaning I’ve been warned – be in bed by midnight (or the magic will wear off and I’ll be like Cinderella without hear coach.)
To be continued…
“I am the wisest man alive, for I know one thing, and that is that I know nothing.”
Back to the Future – CC BY-NC-SA 2.5 ES
Adjusting time circuits on my iPhone by JD Hancock – CC BY 3.0
Future Earth by mike1851 – CC BY-NC-ND 3.0
You are now leaving … The Future by Robin Webster – CC BY-SA 2.0
Helen Keller with Anne Sullivan in July 1888 – public domain
Love, Support, Educate, Advocate, Accept… by Liana Seneca is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.