With PPT season underway, I thought I’d share this updated post 🌷😊
May my child’s love of learning grow.
May his teachers always know –
How to reach him,
How to teach him,
the way he learns best.
May I get a good night’s rest,
give me strength to do my best,
stay calm and strong –
To help him along,
to future education, employment and independent living…
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This short bio also includes a TED talks video. What an inspirational story! There’s so much we can all learn from her!
A native of Albuquerque, N.M., Rachel Kolb sees effective communication as essential to ideas, creativity and progress. She received a BA with honors in English from Stanford and graduated in June 2013 with a coterminal master’s degree in English. While at Stanford, Kolb has been active in the Stanford Equestrian Team, Leland Quarterly, Stanford Daily and Stanford Power to ACT. She aspires to be a writer, scholar and public disability advocate. Kolb was named an American Rhodes scholar in November 2012 and will pursue an MSc in contemporary literature at Oxford beginning in October 2013.
She is also a deaf adult.
I’m a huge fan of the show…
It’s been soooo long since I’ve written on this blog that I’m not sure anyone will notice…
It’s been too long, WAY TOO LONG…
Parenthood is a demanding job, my hubby fell asleep with our 8-year-old in the middle of our queen size bed. He weighs 60 something pounds now, so maneuvering him out of my bed without waking him is something of a feat. I pull him by his feet to the bottom of my bed. Then carefully lift him over both forearms, bending my knees as I lift so not to break my back. (As if I could really carry a 60-something pound boy like a baby, in my arms, from one room to another.) Then I put his feet down on my bed and flop him over my shoulder while he and I both pretended he’s still sleeping. Then I stumble over the beanbag in the middle of the living room floor and barely make it to drop him on his bed with just a little bounce. I tuck him in and give him a kiss on the forehead.
So much has happened since I last wrote that I don’t even know where to begin. So I’ll start with my latest muse.
I was watching the last two episodes of Parenthood on DVR. I know my hubby will be mad that I watched them without him, so I’ll do my best to keep a poker face, and pretend I haven’t already seen them. I really won’t mind watching them again – 2 totally heart-warming, touching episodes. And the spoiler at the end is just breaking my heart. Why do they have to do that with the spoilers. If my hubby was awake he would have insisted that we didn’t watch the “next week on…”
As I watch the show, I’m reminded of just how valuable time is, especially time with those we love. Never take for granted the moments that make up a happy life. Moments of joy and sorrow, fear and hope, love and loss.
The holidays have come and gone with all the typical hustle and bustle of the season. Barely a moment to stop and catch my breath. I sit down to write and I’m pulled away and distracted with daily responsibilities. It’s easy to think of time to relax as a luxury, one I often feel lacking. I sometimes forget, as many busy parents do, that time to unwind is an actual necessity in life.
Always the farmer’s daughter, I find myself ever aware of the cycles of life and constantly in awe of the beauty therein. So I take just a moment to reflect and draw inspiration from the change of seasons. The cold, wet winter days remind me of the challenges that are behind us and of those that lie ahead. Winter is a time of rebirth. A time of quiet, peace, patience, and perseverance – waiting for the spring thaw, for the seed to sprout.
I’ve been so busy since I wrote last. I’ve worked a full-time job special needs parenting, a second full-time job as a volunteer education and legal advocate, and a part-time job self-employed in property management (imagine that a job I might actually get paid for 😉 ) Struggling to make ends meet and to fulfill ALL of my responsibilities to the best of my ability.
I’m happy to report our recent success in educational advocacy. Stephen started at his new school 6 weeks ago. He is now in a “language learning environment” where he will learn to communicate, improve his listening skills, and make the most of his own unique strengths and abilities. He seems happy and appropriately challenged at his new school.
I’m sure other special needs parents out there will want to know the specifics of how we got to this point, but in the typical legal mumbo jumbo fashion there is a non-disclosure agreement with the city. Suffice it to say that knowledge is the key that opens many doors. My best advice to parents is know your rights, know your child’s rights, consider your options, tread carefully, and just put one foot in front of the other and carry on, never give up! A long journey begins with the first step! Take it one day at a time, one step at a time, and persistence pays off.
The first few weeks Stephen was downright giddy with excitement about school. He’s slightly less enthusiastic about returning to school after the holidays, a pleasant indicator that he is aware it’s back to work and back to the grindstone we go. I’m at ease knowing that he is communicating in his unique way that he’s being asked to work hard and learn new things at school.
I’m reminded of seasons past, first with the Birth to Three program – physical therapy, aquatic therapy, feeding therapy, and occupational therapy. Each time he progressed through seasons of dormancy and seasons of growth. The seasons of rest being the times he looked forward to his therapies, and the seasons of growth being the times he would drag his feet just knowing that he’d be asked to do some hard work, and the harvest season – a time of success, accomplishment, and fulfillment. Seasons that inspire and challenge us with anticipation of what lies ahead. regression, disappointment, and frustration mere stumbling blocks turned into stepping-stones.
So it’s off to school he goes, and I’m a little uneasy starting again, anew. I miss the old familiarity of professionals we came to know and love like extended family (aunts and uncles, cousins and family friends.) I’m wondering how they are and what new things this season brings… I’m missing the text messages, and the ease of communication with someone you know and trust, the friendly smiles, and familiar nods. I know one day we’ll be there again – with short sentences, and unspoken words…
I’ve struggled these last few weeks. In my mind I know that I’ve accomplished so much, yet it feels as though it’s never enough. It’s hard to stay optimistic when it’s sink or swim and you feel as though you’re drowning…
The weight of hopelessness hangs heavy in the city air. Everywhere I look people have no sense fo pride in their surroundings. No respect for themselves or others. They drown it out with drugs, alcohol and loud music all night long. My son runs around holding his ears and whining. He pulls me toward the door. He just wants to get out, and so do I.
Like prisoners we long for freedom. In our dreams we escape to a better place. A place we can thrive in security, knowing we have a home and a place we belong. We know that everything in this life is temporary and that better things await.
Hardship, Perseverance, Character, Hope…
Sadly, I feel as though the world has no place for us. Why don’t they understand? They seek a cure, but we don’t need one. They see disability were we see possibility. They think education is expensive, we know ignorance is even more expensive.
Is communication and literacy too much to ask from our community? I know special education costs money. My community pays for a certain quality of education for non-disabled children; but my community struggles with the negative perception that children with severe disabilities are a burden and not worthy of the cost. Who are we to question who is and isn’t worthy of life?
I have hopes and dreams like everyone else. Don’t stifle my hope. Believe in me. Know that I can do this. I’ll never give up. I’ll never stop trying. Everyday I amaze you. I accomplish more than you ever thought I could.
We may not all have the same abilities, but we have unique abilities. Everyday we learn and we grow.
I admit I’ve done my share of tilting windmills, struggling against seemingly futile causes. By its very nature, the victory is in the struggle. Who can win a battle, when he retreats in fear of loosing?
Imagine a world without disabilities, a world without special needs children. What kind of world would it be? A world of Stepford children and Stepford wives, with unnatural perfection – zombies, robots, lifeless and unhuman. Brainwashed into submission, they believe in man’s ability to create perfection. They’ve focused their energy on perfecting others, and neglected bettering themselves.
I see a world of possibility. Miracles happen everyday. I have a special child who brings out the best in me. He touches so many lives with his infectious laughter. He communicates joy without speaking a word.
So as parents, we struggle on believing that communication and literacy is possible and that we are capable of teaching him. We must always believe that the task is doable and that we are capable! We must guard our thoughts. The world has successfully educated deaf and blind children for hundreds of years.
For all of history, the worlds greatest thinkers have believed in possibility.
For more on motivation watch this inspiring video by Dan Ariely : http://on.ted.com/Ariely
Seedlings by Liana Seneca, all rights reserved
Hope Rainbow Mosaic by Nutmeg Designs – CC BY-NC-ND 2.0
Love, Support, Educate, Advocate, Accept… by Liana Seneca is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
I’ve been so busy dealing with school and addressing Stephen’s educational needs – I didn’t get a chance to write or post anything last week. Dealing with school is one situation where I feel as though everything I say or do is judged without the administrators who are making the decisions knowing the facts.
I’m a little bummed out to have so little time with family this summer. Summer is the time of year I look forward to. This year we will be cooped up in our little apartment for 6 weeks – just so that Stephen can attend day camp for 3 hours a day 4 days a week. I’m not sure that attending the day camp (provided by the school district as a reparation for services that were not provided) is in Stephen’s best interest.
We’ve decided to give it a chance, and alter our plans as we see fit along the way. What about potty training? We specifically asked for the school to continue with potty training while he’s there. The district ignored our requests on summer school and potty training. Is 3 hours a day at a summer program more valuable than the independence he will gain by being fully potty trained at age 7? I’m wondering how much of the 3 hours a day Stephen will actually participate, and how much of the time he will just be waiting for mom and dad to come get him…
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It’s always easy to get motivated when I see progress. Cleaning the house while the kids are still growing – is like shoveling the walk while it’s still snowing…
It’s a beautiful warm sunny day today. The kind of day that makes you want to play hookey and just spend your day in blissful aimlessness. We have so much to do today…
I have earned a few badges myself…
This April we’re celebrating Autism Awareness Month! Will you Light It Up Blue with me? Will you take part in some random Autism Kindness Acts? Maybe a night off for some autism parents you know? (I know I’m not the only autism momma out there that doesn’t want to ask!) Right now I’m thinking of my nice, warm, cuddly, blue fleece blanket. I’m so tired.
I saw some pretty blue quilts and sheets advertised in the weekend paper. Let’s face it, my autistic 7-year-old doesn’t really want to go shopping with me. My hubby doesn’t either, for that matter. When we go out shopping, you never can predict who will have a meltdown first – my hubby or my son! I’m so grateful to live in a day and age when I can do some shopping on the internet. Nothing beats shopping in my pajamas! 🙂
If I could hop in a time machine, I think I’d fast forward to a day when my son is prepared for further education, employment, and independent living. I’d sigh with relief and a tear of joy would run down my cheek.
I’d fast forward to a day when parents of children with autism and special needs no longer need to fight for a “free and appropriate public school education.” A day when there are measures in place to enforce the Individuals with Disabilities in Education Act, for all children in need of special education. A day when enforcement of federal law is no longer the duty of overwhelmed parents. A day when exhausted parents can sleep soundly without worry because the community is standing together in support. “I have a dream…”
Stephen had a life threatening seizure disorder in infancy, and cortical vision impairment (blindness) at 18 months old. By age 2, my son received his 3rd life changing diagnosis – AUTISM. There were still many life changing diagnoses to come, but this one was the hardest to accept. It came as confirmation that Stephen’s neurological condition was even more likely to cause intellectual and developmental disability. The cards were stacked against him, but we weren’t giving up. How could we give up?
My son’s first day of school was one of the longest days of my life. I was so worried, I had left him in the hands of strangers. He wasn’t walking, talking, or feeding himself. He was still eating baby food from jars and pediasure from baby bottles. I watched the clock until it was finally time to pick him up off the bus. It’s hard to imagine what it’s like to be the parent of a child with autism or special needs until you’ve walked a mile in our shoes, or carried your baby to and from the school bus on the first day of school!
My son has improved so much over the years. Early intervention services are key for so many children like him. He started walking at just over 3 years old. He still wears leg braces and crawls up the stairs, but he no longer qualifies for physical therapy services. He still struggles with both gross and fine motor skills and mobility due to low muscle tone and neuro developmental delay. He started feeding himself at age 5, and progressed to solid food at age 7. He still wears a diaper out in public, over night, and in his regular education classes. He’s potty training at home and in his special education class room.
He still holds my hand for safety – on the street, on the sidewalk, in parking lots, and on the stairs. He still squeals with delight when we play peek-a-boo. He’s quite entertained with anything he can prompt you to say without speaking a word. He still thinks my silly songs, with words I make up to his favorite, familiar, childhood tunes are worthy of all the adoration that is given to the stars. He’s no more responsible for the noises he makes in church than he was on the day of his baptism.
Don’t get me wrong, we set our expectations high and we encourage him to be on his best (and quietest) behavior. We know that he won’t learn social skills without practice. So forgive me if we don’t wait outside in the car, where neither of us can hear. Instead we teach our son to listen. We sign to him in ASL and remind him when it’s time to listen, time to sing, and time to go. You really don’t need to turn around while the preacher is preaching and ask me if there’s something wrong with my son. I’ll politely tell you he has autism.
Please don’t embarrass my mother with your disapproving looks. She hasn’t had the years of practice that I’ve had, learning to “turn the other cheek.” I won’t tell you what I’m thinking, or respond with an equal measure of disapproval. No need to apologize for asking (but you should be more capable of listening to the preacher and less distracted than the 7-year-old boy behind you.)
Will you support the family of someone with autism at the store, at school, and in the community? Will you wear blue this month in honor of autism awareness? Will you light it up blue this April?
This post is in response to:
Weekly Writing Challenge: Time Machine | The Daily Post
Weekly Photo Challenge: Street Life | The Daily Post
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Love Support Educate Advocate Accept by Liana Seneca is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.