From the moment of diagnosis, life with disability felt like I landed on a new continent where a whole other language was spoken. At our first IEP meeting it was confirmed! I didn't know most of the special education acronyms used. We are coming up on one of our final IEP meetings. It is typical for me to feel reflective as we approach a meeting each year. Makes sense, I guess that really is the point. But it also sends me down memory lane. One of my favorite expressions is that "days are long and years are short". After all, I can't describe motherhood any better! At that first IEP meeting I possibly understood half of the special education acronyms being thrown around! That sure made me feel inept in yet another way. I suppose it is typical for every area of expertise. In fact, I just looked up the acronym NASA and found a 22 page pdf of abbreviations used in the space program. 22 PAGES! Man, they don't just speak a language from another continent but from another PLANET! I don't know about them, but a cheat sheet would sure be helpful for me! I'll never forget the first Continue Reading
Who lifts you up?
Is Disney still disability friendly?
Some of the links in this article are "affiliate links" and should you click on an affiliate link and purchase the item, we will receive an affiliate commission. (The price of the item is the same whether or not it is an affiliate link.) I only recommend products or services I find beneficial.By using the affiliate links, you are helping support our Website-thanks for your support. I never considered myself a Disney promoter. At least not on purpose. Then we had two daughters affected by disability and I became a believer. Every now and then someone will ask what my routine is when we plan a trip to Disney world...and if the park still caters to those with disabilities. Again, I do not consider myself an expert. I am an expert on traveling with my family, though. I'm happy to share what we have found to work. It has paired down a bit now that we are a family of four since the older ones have moved on to their own vacations. Our Disney visits started out slowly. We were wooed with a credit card that gives us disney points as rewards. Depending on how many Disney points we accrue, Continue Reading
Resource for fragile faith
The above excerpt from the book Unbroken Faith by Diane Dokko Kim was the one that really caught my eye! Every once in awhile a book relating to disability comes along that resonates in a deep way. This book by Kim not only resonates but continues to echo long after I finished it. In fact, I am so glad I have it as an audiobook because some days I just need the words from the pages to bounce off the walls of my house...or I just may be the one bouncing off the walls! Diane Dokko Kim explains, "Whether by diagnosis, disillusionment, a death—or the death of a dream— everyone gets “crippled” by something. No one is exempt from the jagged edges of a broken planet." Yet we often feel alone in our fears and frustration with our faith becoming fragile as we navigate the brokenness. "Grace allows room for doubt, fear, and even anger", Kim says. I appreciate her authentic journey with real struggles and emotions, including the bemoaning of well meant platitudes often offered by others. But even more, I value the scripturally sound conclusions her path takes her on. This book has Continue Reading
Pay for two coffees, give one away
Suspended Coffees That is all the board gave in explanation for the "coupons" left for redemption at a cafe I recently visited. It took only a second to understand the idea, though. Pay for an extra coffee and leave a description behind for who may redeem it. I LOVE IT. Unfortunately I processed the whole thing as I RAN out the door to pick up the girls from their Unified Bowling practice. My mind has been working overtime since then...who should I leave coffees for??? It actually makes me kind of giddy when I think of it. I could leave one for someone parenting a child with autism. Or Someone who has a caregiver watching their family at home. Or maybe Someone who was up all night with a crying baby! How about Someone who works in home health care? With so much negativity and division in our country I Love this opportunity to affirm another person on their journey. They say it's very comforting for someone to be able to say "what, you too? I thought it was just me!" or even to just be SEEN. I know there were many times it meant more to me than any gift just to have someone Continue Reading
Medical Info in a wallet with medical charm
"Keep their medical information in a wallet attached at the front of their wheelchair." This was some of the most appreciated advice we got at a recent transition meeting. The children's hospital that we have used for the girls' medical needs is helping us with the transition to adult medical services. That in itself is a HUGE blessing! I mean, they are not just giving us a checklist (which isn't a bad thing, either) but they are walking us through it. They didn't stop at inviting us to attend a meeting to discuss the potential stumbling blocks headed our way. They are assisting us to be proactive. Getting their medical information printed out specifically for a wallet was one of the things we left with. After updating their medical history, current prescriptions, and adding a synopsis of how each daughter is able to communicate and function in daily life, they shrunk the extensive report down to be folded into a photo protector for a wallet. You know when you get a prescription and it comes with an insert that they somehow manage to cram every possible symptom, warning and any Continue Reading
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