Monday was a doozie, reminding me Autism can be sad, frustrating and emotional.
The day started fine for Carson, our 12-year-old special needs son with a complicated diagnosis that most simplistically can be referred to as Autism Spectrum Disorder. The term spectrum is perfect because the severity of the disabilities spans a wide range, and each day can look different.
My goal each morning is to get Carson to school in a good mental and emotional space. Everything is geared toward him in the morning. I focus on what I can control. Getting him to school in a good place is critical to me. On Monday, I screwed up. I couldn’t find his glasses when it was time to leave for school. We left home without them to keep on time. Pam texted from work where they were, and I should have turned around to come home. Carson insisted he was fine without them. Once we got to the school door, he changed his mind. Back home we went for the glasses. All was fine and he didn’t seem bothered by being a few minutes later, but I had messed up his routine. He did not have a good day and I take some responsibility for it.
As far as school goes these days, there are days when everything goes well. We celebrate those days. We like hearing from his education team he was at peace all day, worked hard and was engaged.
Most commonly, there are days summed up best as mixed. There are a few instances of minor unfortunateness mixed in with largely expected behaviors. While not celebrated, these days are perfectly acceptable, and we praise Carson’s ability to get back on track after poor judgments.
At least a few times a month, there are bad days at school. These are tough for everyone involved, including teachers, classmates, Carson and his parents. When I see a certain phone number or two pop up on my screen, I cringe because it’s going to involve information that’s tough to hear. We need to know about the update, and we appreciate our good-hearted and well-intentioned team at school, but I would be lying if I embraced the ringing phone because I know it’s bad news. Monday was one of those bad days that leaves Pam and I at a loss for words.
I like to keep things simple in life, but Carson’s life is complicated. We wish we could just love away all his disabilities or at least always keep him calm and happy. I don’t pray for a cure to fix him. I pray for our strength and patience to help guide Carson in a productive direction. I pray for Carson to have a flexible brain and understand the gravity of his actions. I abhor the disability and admit to carrying resentment for it. I love the kid and wish that was enough to right everything in his world. It’s just not enough. It’s a tough reality to accept.
While doing some online research about Autism, puberty, medicine, teen behaviors and the like, I like to think a higher order – not an online metric — worked to bring peace. A webpage from getgoally.com surfaced containing “20 Quotes About Autism That We Love.” It contained some profound statements that I needed to hear on an emotionally exhausting day. Here are a few to share.
“Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.” – Ellen Notbohm
“Don’t think that there’s a different, better child ‘hiding’ behind the autism. This is your child. Love the child in front of you. Encourage his strengths, celebrate his quirks, and improve his weaknesses, the way you would with any child.” – Claire Scovell LaZebnik
“Cherish the children marching to the beat of their own music. They play the most beautiful heart songs.” – Fiona Goldsworthy
“Autistic people are individuals. We are not all math geniuses, we don’t all like trains. I am hopeless with technology and much prefer painting. There is no ‘typical Autistic.’ But I think we probably all like being respected and validated.” – Jeanette Purkis
“Presume intelligence with all children with autism. Presume all of them are hearing you.” – Lori Shayew
“Children with autism are very observant so they will notice everything, including your attitude toward them.” – Trevor Pacelli
“When a family focuses on ability instead of disability, all things are possible . . . Love and acceptance is key. We need to interact with those with autism by taking an interest in their interests.” – Amanda Rae Ross
“Empowering your young person is the key to giving them the skills they need to live an independent life. If you do things for them that they could learn or even do for themselves by themselves, then you are DISEMPOWERING your young person.” – Tom Iland
“There’s a saying within the Autism community: if you’ve met one person with Autism, you’ve met one person with Autism … Within this condition, beneath this label, the variety of personality, of humor, of behavior, is infinite.” – Hugh Dancy