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.
I play it cool
I dig all jive
That’s the reason
I stay alive
My motto
As I live and learn
Is dig and be dug in return
Langston Hughes
It’s one of those days…
I’m so glad I have a “motto” to live by. My hubby and I had the trials and tribulations of a lifetime with family over the Independence Day holiday weekend. And so I leave you with a parting thought…
THE PEOPLE WHO ARE RELATED TO YOU AREN’T ALWAYS FAMILY. SOMETIMES FRIENDS ARE CLOSER THAN FAMILY (as the good book says…) SOMETIMES FAMILY ISN’T RELATED TO YOU AT ALL!
Wishing the best for all of my family and friends! A special thanks to my readers and my blogger friends out there. Can’t wait for the drama to die down 😐
I hope to get a chance to catch up with you more soon!
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.
my seedlings
Hardship, Perseverance, Character, Hope…
Faith.
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.
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…
I look around and all I see are things that I need to do. Clutter everywhere, dishes to do, laundry to hang, dinner to prep or more greasy take-out and yet another stomach ache? It’s overwhelming and I’m not feeling motivated at all! So today I’m on a quest to find what motivates us…
It’s something I struggle with. Something worthwhile for everyone. It’s advice that’s easy to give but much harder to take (Isn’t all advice that way?)
So why would I give up on myself – even though I’ve never really given up on anyone else? Even when I’ve lost all strength, I pray. Even when it seems like I just don’t care, silently I pray. We all fall short. I’m painfully aware of my own failings in life.
It may not always be the prayers of my youth, or formal prayers. (There is a time and place for everything.) Some days it’s just a positive thought I send your way. Some days when the pain is too great, and I can’t find my own words, it’s more of a chant or a meditation. Sometimes it’s long and repetitive like the Litany of the Saints. Some days it’s short and sweet.
Some days it’s a quiet walk enjoying nature, that renews my strength.
Yesterday we got hit with a snow storm here in Connecticut and our 4 day long weekend was extended to 5 days. So we got a jump-start on our Poopy Valentines Day plan: potty training my 7 year-old non-verbal autistic, special needs son (see my post Help! My Valentine Smells like Poop! ). It was a rough day – to say the least. We didn’t make it even 5 minutes between wet underwear, but Stephen did manage to pee on the potty 3 times in one day (a record number of times in a row.) It’s a start and I keep reminding myself A long journey begins with the first step. After 8 hours of potty training my son was so exhausted he got into bed (my bed of course) an hour before bedtime.
I was too exhausted to send him to his own bed. Some days I just need to choose my battles. Yesterday was one of those days. I washed dried and folded 3 loads of laundry, pre-washed poop out of his underwear by hand, and basically got nothing else done during the 5 minutes between “dry checks.” I had a battle of the wills with a 7 year-old, my patience was wearing thin, and I said, “There’s no way I’m going to change your diapers until you’re 35 – so you may as well learn now!” Not one of my best parenting moments – nothing like making a stressful situation worse.
Stephen pooped in his underwear while I ate my breakfast at 2:00 pm, so there was no way I was going to make dinner. My wonderful hubby not only shoveled almost all day, he also helped out with the “positive practice” routine – back and forth to the potty going through the motions 5 times in a row for each wet accident. He may have done it reluctantly (and not without complaining) but he was still a big help. At 8 pm we hadn’t had dinner (my son had a sandwich on gluten-free bread but as always mommy and daddy come last.) So (big – a.k.a – tall) Steve, my hubby went out in the cold to pick up some carry-out.
At 3:30 am the carry-out wasn’t agreeing with me and my mind was racing. I opted to make a to-do-list and an ideas list to help me relax and put it out of my mind until morning. By 4;30 am my son was up and out of his own bed again, so I sent him back in to my bed. I woke up this morning with a stiff neck (not entirely unusual for me – at 36 I already have arthritis in my neck that shows up on x-rays.)
So today I resolved to have a better day, knowing I had an unexpected jump-start on potty training and we’re still ahead of schedule (at least in my world we are.) I promise myself I will remain calm as I tell my son that when he has that “need to go potty feeling” to “STOP what you’re doing and GO to the potty.”
Parents of children with Autism and Special Needs often feel the weight of the world on their shoulders. Indeed it is not an easy journey, countless obstacles, illness, exhaustion, and sensory overload often keep us in. As I look at the photo above, I am reminded of a poem by Richard Lovelace –
Stone walls do not a prison make,
Nor iron bars a cage;
Minds innocent and quiet take
That for an hermitage;
If I have freedom in my love
And in my soul am free,
Angels alone that soar above,
Enjoy such liberty.
'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, to becoming informed, and to raising awareness. Dedicated & inspired by my older brother, Doug.
Links and posts about issues related to hearing loss ~ written and compiled by a Deaf audiologist with bilateral cochlear implants who is ASL-fluent and loves assistive technology
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