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.
Here it is Monday again, where does the time go? I feel like crawling back into bed, curling up and going back to sleep. The weight of responsibility had me exhausted last night. Just thinking about the lists of things to do was overwhelming. My heart is not as healthy as it once was. I hate to admit, I’ve neglected my health for a while now.
My wonderful hubby picked up the slack for me last night. He gave our son a bath and sent him off to bed. I love to complain about my messy disorganized hubby, but he is truly a dedicated father and a family man. He loves his children more than they could ever imagine. I’m sure they wish he was wealthy (and I do too) but someday they will all grow up and realize the wealth he has is more valuable than gold. It’s a wealth that moths and dust cannot corrupt. It’s a wealth of experience, strength and hope.
It’s amazing how much things have changed in the few short months since I started blogging.
My 7-year-old, non-verbal son is sitting in a nice warm sunny window watching Alphabet Amusement Park on Netflix. Over the last few months, he’s learned to navigate Netflix on the iPad like a pro. He unlocks the iPad with a pass code and without assistance, get’s on Netflix and chooses the correct user account (so that Netflix will stop prompting me to watch Leap Frog, Signing Time, or another movie/tv show for children that I’m already singing the theme songs to as I drift off to sleep every night…)
My blog has become a journal of personal experiences, a place to be myself, and to renew my strength. At first I wasn’t sure anyone would want to read what I wrote. My adventure in advocating publicly for children with autism and special needs began with a Facebook page. I quickly realized inspirational quotes, funny sayings, photos and bad news were the most popular Facebook posts. I was disappointed. I didn’t reach as many special needs parents as I had hoped. The resources I found over the past 7 years weren’t getting much attention. I had spent hours researching, reading, and learning how best to help my son, and I wanted nothing more than to share what I had learned, hoping the considerable effort I made would save some other exhausted parent time and energy.
What will this year bring? More challenges with an under staffed school district? More budget cuts for special education? OR by some miracle, PROGRESS? I’m hoping (and praying) for the latter.
Our son, (who is legally deaf-blind) started the school year without his 1:1 paraprofessional. As parents, we had heard the news that the district had laid off ALL of the union paras (and almost the entire support staff for special education.) We talked about it and we decided worst case scenario we get to school and our son has no aid, then we bring him back home with us and he doesn’t go to school… That would be where we, as parents draw the line.
Our son is 7 years old. He is completely non-verbal.
Like many parents who first receive an autism diagnosis, we didn’t know what to do next. Piece by piece we discovered our son’s disability, like putting together a puzzle of neurological developmental delays.
By age 2 our teacher of the visually impaired from the Board of Education and Services for the Blind had begun to suspect a hearing loss. After a BAER (brainstem auditory evoked response test), follow-up tests with the ear nose and throat doctor, and repeated visits to the audiology department at the children’s hospital, the audiologist diagnosed Stephen with unilateral moderately severe hearing loss (legally deaf on one side) The audiologist told us that our son had permanent deafness that could not be improved with hearing aids. We have been using ASL with him ever since. #whyIsign#askmewhyisign
Just a year before the hearing impairment diagnosis, the eye doctor told us Stephen was legally blind. Stephen’s eyes had drifted apart and there were obvious signs of problems with his vision. Stephen has Cortical Vision Impairment. CVI is a neurological vision problem.Our teacher for the visually impaired informed us that combined vision and hearing loss made our son legally deaf-blind.
'And above all, watch with glittering eyes the whole world around you because the greatest secrets are always hidden in the most unlikely places. Those who don't believe in magic will never find it.' Roald Dahl
A blog dedicated to my personal research on intellectual and developmental disabilities. In order to highlight issues affecting people with developmental disabilities and debunk stereotyping myths, the first step is to become informed and spread awareness through visual storytelling and facts. (Dedicated to my older brother, Doug).