by jphilo | Apr 20, 2012 | Out and About, Uncategorized
Hmmm…maybe flying Southwest Airlines to the Accessibility Summit (to take advantage of their 2 free bags policy to haul books & book table stuff) wasn’t such a good idea. Our plane is sitting on the runway, we’re packed in here like sardines, and the pilot announced a problem with the electrical system. The first attempt to solve the problem was unsuccessful.
A technician is on his way.
Call me crazy, but I’m developing a Southwest Airline/Accessibility Summit phobia. Last year while at the Summit, again arriving there via Southwest, the airline announced one of their planes developed a crack in the fuselage. My return flight was one of the few not grounded, so I returned home without a problem.
Though I was on fuselage crack watch the entire time.
But, back to the present problem. We’ve now been deplaned which means I won’t make my Chicago connection. The customer service representative says there’s a “good likelihood” I’ll get to Dulles tonight.
But when tonight remains a mystery.
All this trouble to take advantage of SW’s 2 free bags policy. Which I probably will need since I won’t be in the Accessibility Exhibit Hall to sell books tonight and may have a bunch to cart home on Sunday. If SW planes fly on Sunday.
I’m not holding my breath.
by jphilo | Feb 21, 2012 | Uncategorized
A couple weekends ago, we visited our grown up son and his grown up wife at their grown up house in Wisconsin. They showed us the sights in the area, including a visit to his new workplace.
More than once during the weekend he said, “I have a grown up job,” with wonder in his voice and a shake of his head. “I’m a grown up.”
Allen’s sense of wonder pervaded the entire visit as he and our new daughter showed us around his office, drove us through the grounds of a nearby historical site, showed us the sites in the closest city.
The wonder invaded my soul and Hiram’s too, as we sat in the kitchen and watched this lovely, grown up couple prepare meals for us.
Omelets for breakfast the first morning,
Roast chicken and scrumptious new potatoes ala Julia Child for supper,
crepes for brunch before departure the next day.
I watched them cook and saw
our baby boy on the kitchen floor banging on pots and pans with a wooden spoon,
our preschooler sitting on the counter to peer at what was in the mixing bowl,
our kindergartener standing on a char, “helping” crack eggs (and eggshells) into a bowl,
our 7-year-old learning to make Kraft Macaroni and Cheese all by himself,
our middle schooler baking cookies,
our high schooler sliding frozen pizza into the oven,
our monk baking bread in the monastery kitchen,
our farm hand showing me how to stir fry kale,
our son and new daughter cooking for us three lovely meals.
The wonder hovered round us all that weekend. It was in the car as we drove away. It’s been in my smile and Hiram’s each day since we’ve been home. It wells up inside me and flows down my cheeks as I write. It lulls me to sleep each evening and greets me when the alarm clock rings each morning.
Our son is grown up.
He’s married to a grown up wife.
He lives in a grown up house.
He has a grown up job.
He cooks grown up meals.
In wonder, we bow and give thanks for what God has done.
by jphilo | Jan 3, 2012 | Daily Life, Uncategorized
Sigh.
The kids left Monday morning, and ever since the house has been quiet. Too quiet in my opinion, even with the washer, the dryer, the dishwasher and the radio going. Nobody wanted the celebration to end, and the good-byes were hard. To keep the good times in mind a little longer, I’m rolling out the top ten events from our holiday weekend.
10. My blow dryer died. You may consider this a wacky top ten entry unless you’re privy
to this important fact. The blow dryer was over 30 years old. Used almost every day.
If word of its longevity gets out, the blow dryer industry could pay big bucks for the
relic. They’ll want to study it to learn how not to construct future blow dryers since
they prefer small appliances to wear out the day after the one year warranty expires.
9. The Google Analytics program installed as part of this website’s facelift is working.
No big deal to computer geeks, but this aging non-techie goes to sleep dreaming of
conquering the internet one successfully installed program at a time.
8. I won 2 (or possibly 3) of the half-dozen Carcassonne games I played. Granted, the
wins were due more to lucky draws than well-thought out strategy. But it’s nice to
know a strategy game can be won by someone more at home in Candyland than in
medieval France.
7. The most hotly contested item in our extended family’s white elephant gift exchange
was the Romance Novel Magnetic Poetry Kit. The copy on the package described it
as “a box full of bodice-ripping word magnets.” And as their final winner, all I can say
is boy howdy, are they ever! Should the fact that they were my son and new
daughter’s contribution to the game disturb me?
6. Integrating word magnets from the Romance Novel Magnet Poetry Kit into its
owner’s turns while playing Carcassonne makes for a very interesting game. Don’t
ask me how I know this.
5. The winner of the New Year’s drawing at www.DifferentDream.com (for a copy of
Different Dream Parenting) was a mom who stumbled onto the site looking for a
devotional book for parents of kids with special needs. How cool is that?
4. We met my brother’s new vizsla pup, Maisie, during our extended family Christmas
on Saturday. His beloved dog Maggie was recently diagnosed with cancer, and he
will be saying good-bye to her in the next few months.
3. The digital picture frame was a hit with Mom. She spent all afternoon on Saturday
watching the pictures go by.
2. Sunday was a blast: cooking with the kids, watching the pilot of Parenthood
together, playing games, opening presents, walking, and talking. (Watch for
recipes from our holiday week in future posts!)
1. Our Christmas Eve service was a time to reflect upon how deeply God loves his
children. These good times with family are just a foretaste of the eternity made
possible through the gift of God’s Son, Jesus.
What were your top family events this holiday season? Leave a comment to share a few!
by jphilo | Dec 6, 2011 | Different Dream, Uncategorized
Guest blogger, April Brownlee learned that special needs grief is okay after their daughter was first diagnosed with Noonan Syndrome. Today she shares what she’s learned about special needs grief.
Special Needs Grief Is Okay
I wish I had known it was okay to grieve. Or that the process could take years.
When I think back to the time before Noonan Syndrome was not a regular part of our vocabulary, I realize how naive I was. I assumed any child I might have would be a perfectly healthy, enviably gorgeous, superiorly athletic, future Princeton grad. I could even picture the never-ending bragfest.
Why yes, little Bentley already does long division. He’s only two. And, he knows the forms of matter include solids, liquids, gases AND plasma.
Isn’t that what every parent expects? You always assume you’ll have a perfectly healthy child. Until you don’t.
I Forgot to Sit Back and Take It All In
It didn’t take long to realize Catie wasn’t anything like her older sister, who, although not a child prodigy, was definitely a textbook baby. The thing is, I became so immersed in figuring out what was wrong with Catie, I forgot to ever sit back and take it all in. I instinctively knew something was wrong and with that came easy acceptance. But because I was so wrapped up in the here and now and my immediate need to diagnose her, I never bothered to consider what it would mean for her future. For our future.
I Returned My Focus to Work
The day Catie was diagnosed, I don’t remember feeling much of anything at all. I just remember it all being so surreal. It had been such a long, tiring road to get to that point. I thought I might feel relief. But I didn’t even feel that. And instead of getting online and connecting with the online community for those living with Noonan Syndrome, I returned my focus to work… like the past fifteen months had never happened. Like I’d never heard the words “Noonan Syndrome.”
I Was an Emotional Wreck
Almost two-years later as Catie began falling a lot, I badgered every eye specialist around, convinced her vision was to blame. One of them suggest I have her evaluated for physical therapy instead. When I did, I learned not only was that the obvious culprit to her falling, but also how far she was behind other kids her age. And it hit me like a ton of bricks. I spent the next few weeks an emotional wreck. Everything, it seemed, led to tears. And one day, as I sat crying in my office about therapy, the cost, the hassle of toting Catie back and forth… a very wise co-worker with experience in such matters said to me, “Do you think you might be grieving? You know, with a diagnosis like this, there’s a period of grieving that comes with it.”
I Took Some Time to Grieve
As soon the words left her mouth, I knew she was right. I might have long before accepted what was happening to Catie, but I never accepted the loss of the life I assumed we’d always have. I expected normal, typical, ordinary. I got nerve wracking and tumultuous. So, I took some time and grieved. I felt sorry for Catie. I felt sorry for me. I felt sorry for us. And after a few weeks, I began to feel like the old me. I realized I definitely didn’t get the ordinary life I had expected. Instead, with Catie came an extraordinary life. And I am grateful.
When Did You Learn Special Needs Grief Is Okay?
Did you identify with April’s journey? Do you remember when you realized special needs grief is okay for a who is alive? Or did you realize it while reading April’s post? We’d love to hear your story. Leave a comment about your grief journey. Go ahead. Do it. Because this is a safe place. A place where it’s okay to grieve.
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by jphilo | Aug 2, 2011 | Different Dream, Uncategorized
Where were you the day your child was diagnosed with a special need? Do you remember what was said? What you were wearing? What you were thinking? Guest blogger Amy Stout vividly remembers the day when she and her husband received Kylie’s diagnosis of autism. She describes her response in today’s guest blog and shares some bits and pieces of wisdom she’s learned along the way.
Things learned are meant to be shared…
She wanted to be alone – to think things out –
to adjust herself, if it were possible, to the new world in which she seemed to have been transplanted with a suddenness and completeness that left her half bewildered to her own identity.
— L.M. Montgomery (Rilla of Ingleside)
The day that our Kylie was diagnosed with autism is forever etched in my mind. How I wish that someone who had walked this path before had been there to hold my hand and guide me through the overwhelming amounts of information, well intentioned (but many times misinformed) people, resources and decisions I needed to make.
I am generally very educated, tech-savvy, book-read, and full of life experience, but I never felt more stupid and unprepared in the moments after we left that doctor’s office. I didn’t even know in what direction to head.
They had handed us this lead-weighted piece of information and we were forced to carry it because we didn’t know what else to do. My heart was so heavy and even though my husband and Heavenly Father were with me, I felt so alone.
Immediately after leaving the office, we went directly to Barnes and Noble (we were 2 hours from home) and I bought books about autism that I could read on the drive home. (Because, of course, in two hours, I would be expert on it all and be ready to tackle the world- ha!)
…As a veteran mom in the world of special needs, I chuckle now at the swell and suffocation of panic I felt in those moments. But I assure you, on that day, it was not the slightest bit humorous.
I wish that with the diagnosis, we would have also been given a Maya Angelou-type personality who would have sat with us- relaxed, quiet and peaceful. If she did talk, it would have been in a slow, deep, confident and comforting voice. The kind of person who would have gathered me in her arms and whispered it was okay to cry and that things would be all right. She would have given me a tissue, held my hand and quietly stroked my back till my sniffles had subsided- until I was ready to face reality (and the world).
Instead, like a shock of cold air, Dan and I learned and navigated on our own. (Always consulting the ONE who loves our daughter most.)
Bits and Pieces of Advice
Here are bits and pieces of the wisdom we have come to practice and rely on. If we could go back and do it all again, we would trust this advice…
- Breathe: Take just one minute and breathe. Look at your family – really look at them. Memorize their faces. Dwell on their attributes and the contributions each make to your family. Let it soak in that this group of people will be your closest teammates on this new and exciting journey.
- Be still: Take a few minutes – maybe an evening to just sit in quietness. Think about all the things that you have been told and advised. Decide how you feel (knowing that what you feel now will not be the same thing you feel down the road). Allow yourself time (and give yourself permission) to grieve (knowing that other family members may grieve differently than you).
- Connect with your spouse: Talk, read together, make a plan of action together as to how your family will advance on this journey. It is SO IMPORTANT to be united and in harmony where your child is concerned.
- Choose to “experience” the disability vs “have” the disability. This positive attitude makes all the difference in how you support your child and family. People outside (and inside) your home will take their cue from you as to how to approach this new adventure.
- Educate yourself, your spouse and your immediate family: Check out books from your library- you could spend a fortune if you start buying. Utilize the internet, there are so many resources available.
- As a family, decide how you will communicate and educate extended family and friends. For my family, we felt it would be a more streamlined and thorough approach to update everyone at once. So, we chose to begin a free Caring Bridge site. I knew I would not emotionally be able to handle repeating things over and over again. We also view Caring Bridge as a method to teach and educate our extended family and friends about autism, special needs and sensory issues so there is more ownership, understanding, accommodation and less probing/personal questions.
- Be prepared for the fact that there will be people around you (and most likely in your own extended family) who will use inappropriate language, ask inappropriate questions and demand more of you than you are able to give. Try to have a gracious response ready in advance so you are not caught off guard. A good one is: “I know you will understand, but I really would rather keep that information private for Joey. It is his story and I really think he would like to make the decision someday on whether or not he is comfortable sharing those things. I really appreciate your helping me protect Joey, not everyone is so understanding.” Model appropriate behavior especially in using proper and appropriate special needs terminology.
- Be gracious, gracious, gracious!!! Be gracious even when your blood is boiling over something that someone has said or done. Choose appropriate timing as to when sensitive discussions should take place. Never embarrass others – make it your priority to educate them and give them the tools to make right choices. Determine to be the one who reinforces and builds up bridges, not the one who tears them down.
Thank You, Amy
How I wish Amy’s advice had been available the day we received our son’s diagnosis. How pleased I am that it’s available to parents now. Best of all, Amy will be back tomorrow with more bits and pieces of wisdom she and her husband have gained along the way.
How About You?
What bits and pieces advice do you want to share with parents about diagnosis? Leave a comment to help them along the path you’ve already traveled.
Part 2
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by jphilo | Feb 16, 2011 | Different Dream, Uncategorized
About a month ago, a blog entry about the Special Needs Underground was posted at DifferentDream.com. The concept was originally introduced by Tammy, a tracheostomy parent who blogs about caring for her son at www.PrayingforParker.com.
Tracheostomy Parent Support Site
The post garnered several comments, including one that mentioned a site for tracheostomy parents. If your child has a trach tube, www.tracheostomy.com is a page you’ll want to explore. It is loaded with good stuff. Be sure to pull down on “Networking” near the top of the page and go to the TrachKids.org link where you will meet parents and kids living with trach care and trach tubes.
Meet Aaron Bissell
At www.tracheostomy.com, you’ll also meet Aaron Bissell. He was born in 1994 and had a trach tube for the first four years of his life. He and his brother Eric, who deals with cerebral palsy, were preemie twins. Their experiences prompted Aaron’s mom, Cindy, to start the website as a support for parents.
Other Trach Sites?
If you know of other tracheostomy parent sites that offer resources, networking support, or education for parents, please leave a comment. Or leave a note about what life is like for your child and family. Your story may be an encouragement to many other parents!
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.
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