I know the majority of my readers are not the parents of disabled children, and so you may be wondering what the point of this post is. You’re probably completely unaware that there’s actually a controversy over the use of the term “special needs” in regards to disabled people and their parents. I myself only became aware that special needs was an offensive term to some a few years ago after I started following more disabled adults on social media.
In general, following adults in the disablity community opened my eyes more widely to ableism and the discrimination that disabled people face on a daily basis. I decided in order to be a better advocate for my sons, I had to make sure I wasn’t holding onto any inherent biases against them because of their disability. Plus, I needed to listen to the voices of those who fight for disability rights in order to raise sons who can learn to fight and advocate for their own needs as they get older.
What disabled people would like us to say is the word disabled with either person first or disability first language (so either a child with autism, an autistic child, or a disabled child or child with disabilities). So if I’m trying to do better, why would I put “special needs parents” in the subtitle of my book?
Because most of the people who will buy my book are not aware it’s an offensive or outdated term. For parents whose children have just been diagnosed, the term special needs is the one they will most likely be typing in the search bar as they scan Google for help. In a lot of ways, it’s familiar and a lot less scary than identifying their child as disabled and themselves as the parent of a disabled child.
In time, most parents of disabled children reach a point where they are willing to listen to and learn from disabled adults. But so long as we have the terms Special Olympics and special education, special needs will be common parlance in the English language. And while it’s good to work towards using the language that disabled people prefer when we talk to and about them, it’s certainly not the first thing that the parents of a disabled child need to learn within the first few months, or even year, following their child’s diagnosis. In fact many parents of disabled children will hold onto the title special needs regardless. But rather than berate or belittle them, I hope that through my writing ( and by exposing them to disabled adult voices), I can help them make that transition in due course.
So that’s a short explanation. I think most disabled adults would probably prefer I don’t use special needs in my title, or when describing my ministry Accepting the Gift. I get that, and I hope to educate parents of disabled children to make the switch, but until mainstream society and media changes course, I need for parents to be able to find me, and right now I know they’re still searching for “special needs” because that is all they’re familiar with. It’s my hope that by sharing a look at a part of the disability community my readers may be unaware of, I’m helping more people choose their words more carefully. (Order my book HERE.)
For more information on this topic check out the following posts:
Eighty copies of my book finally arrived at my house this week! Everyone in the house was excited for me for all of 60 seconds before asking what was for dinner, what were we doing that night, did schoolwork need completed before screen time, etc. It was a nice 60 seconds.
We went down to Ocean City Monday evening to enjoy the boardwalk. I picked up some local goodies to send to Addie and I dominated Edie in air hockey at our favorite arcade. On one hand I feel like I didn’t have time to spend an evening at the beach since I’m woefully behind in so much, but on the other, I feel like if I don’t intentionally plan these things, they’re less likely to happen on their own anymore.
I think I’ve already officially given up on the new math curriculum I selected for Fulton. The problems? Neither of us enjoy the review games, and the “tricks” it teaches for memorizing facts are no easier for Fulton to use, or for me to explain, then him just practicing with flashcards. We’re not starting with the lowest level, but the level we are starting at assumes we know all the unique methods taught in the previous books. Since we don’t, I need to figure everything out and then it’s not really a review lesson for Fulton but something new that needs more practice. Lastly it wanted me to teach Roman numerals with 4 being represented as IIII not IV (the correct way being taught in later lessons) and just…no. So it’s back to Abeka at our own pace and I have more books to list for sale.
Book Signing Party!
In between Logic discussions and Latin arguments (so much fun on both fronts), I’ve started planning some fun book stuff starting with a book signing party at my house that I’m opening up to all my friends and followers! (The introverts in the house are thrilled beyond measure.) I know it may be far for some of you, but to anyone close by or willing to travel, you’re invited to join in the fun. It won’t be the First Things office or the Yale Club (instead we’ll be hanging out on our new patio under, I think, tents? Still hashing out details…) but there’ll be drinks, food, books for sale, and hopefully some fun swag and prizes. I’ll give a short talk or a long toast and hopefully Tony will pick a playlist that doesn’t upset the neighbors. I’ll sign books, pose for selfies, and at some point between now and then come up with a creative hashtag for the event. Buy your ticket in my Shop. I hope some of you come out and help me celebrate! I’d love to meet you!
A Special Event For Those Who Preorder My Book!
I’d been looking into creating some preorder bonus items, but honestly, I don’t want to wind up mailing a bunch of stickers or temporary tattoos (“Kids come here! Today for physical education we’re licking more envelopes!!”) and with my limited free time the only downloadable items I’ve been able to make time to create are a few bookmarks which are hardly going to sway someone who wasn’t already seriously interested in making the purchase. (“Hmmmm…I don’t know if this book is a good fit for me, and I’m not familiar with this author at all, but it says here if I preorder I could get four hastily designed bookmarks to print on my own printer like a sucker; what am I waiting for!!!”)
That being said, I will be holding a live Q&A session on Thursday, October 7, at 8 p.m. EST with anyone who has preordered the book! If you’ve preordered Better Than Okay, email me your order number, and you’ll be emailed information on how to submit questions and join in on the 7th. I’m looking forward to reading a bit from the book and answering your questions!
I’ve also planned a Better Than Okay cocktail and recipe contest! I loved the Something Other Than God cocktail contest Jen Fulwiler held years ago, and I wanted to shamelessly copy it. But knowing that not all my readers drink alcohol (looking at you Jenny from the Church of Jesus Christ of Latter Day Saints), I thought I would add a recipe option too. The idea is to present a cocktail or food recipe for an item that turned out not just okay, but surprisingly better than okay. I’ll share my favorite recipes in my Quick Takes on Friday, October 1. Winners will get a free, signed copy of my book, and some other goodies. (Lisa Frank stickers anyone???) Submit your recipes to me before Tuesday, September 28 for consideration. Recipes with hilarious back stories and equally ridiculous photos get bonus points.
Another reason for exclamation marks!!!
On Friday October 8, my Quick Takes post will feature a giveaway of not only my book, but a gift basket of items from other parents of children with disabilities. I’m still actively looking for authors, crafters, and business owners who fit this description to help fill out my basket, so drop me a line if you want to provide an item. If I get enough items, I’ll offer more than one basket.
Keep an eye on Instagram, Facebook, or your inbox for my newsletter with reminders and more details about my book as the release date approaches. IT’S GOING TO BE SO MUCH FUN THAT BY OCTOBER 10TH EVERYONE IN MY HOUSE WILL BE TIRED AND ANGRY WITH ME!!!!!! Don’t you want to be able to say you contributed to that??? Sure you do!
While the anticipation builds, you can write down and link up your own Takes below. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!
I created a huge, beautiful spreadsheet detailing everything I need to do to successfully launch my book by October 8. The only thing I couldn’t come up with? A topic for this week’s blog post. So just a few Quick Takes in the mean time.
First, know that the NIGHT OF DESTRUCTION was just as epic as we anticipated. A Crown Victoria dominated in the first round so now I want us to trade in our Corolla for a car that can take repeated hits and keep destroying everything in its way. I’m also thinking it would be great if someone could build a power wheelchair as durable as a Crown Victoria.
We celebrated Labor Day by HAVING A REGULAR SCHOOL DAY. Mwahahahaha! Tony was off work, Byron didn’t have classes, and Addie was off so we got in a video chat. Tony also grilled ribs so that made the day a bit more special than usual.
On Wednesday, Byron passed his road test, so now I have another driver. He was working on parallel parking non-stop the last few weeks, and even the test administer was impressed. I know I wasn’t as nervous as Byron was, but my stomach was in knots during the whole ten minute test. These teen milestones are wonderful and utterly ulcer inducing. Edie turns 16 in December and the process will start again….sigh.
I’m finalizing some preorder goodies, working on scheduling a few live online events, compiling items for a giveaway, and planning a special signing event. Details will go out to the newsletter first; sign up here so you don’t miss out!
Not much else to report! I’ve got four baskets of laundry to put away, school work to grade, and a to do list that only grew during the week despite crossing off several items. Need something else to read? Order my book on Kindle!!! You can also write down your own Takes and link them up below. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!
Because I write my takes chronologically the most important Take is at the bottom so be sure to read to the end!
My goal last week was to get a Quick Takes post up sometime Friday evening, however just before 5 p.m. I got a call that let me know my apostolate Accepting the Gift would not be moving on in the OSV Challenge. I decided to spend the rest of the evening being sad instead of writing. I also decided to wallow most of Saturday. After Mass on Sunday I started feeling better so that by Monday after the 12 finalists were publicly announced I didn’t feel too upset any more.
Taking part in the OSV Challenge was a wonderful opportunity, and I learned so much. Accepting the Gift is definitely in a much better position now to help people than it was before I took part in the Accelerator (which was the “business education” part of the Challenge). But yes, I’m disappointed. I really believe my apostolate is worthy of a $100K grand prize and more than anything I’m frustrated that I failed to convey that to the judges. But onwards and upwards! I have a lot of ambitious goals for the next year so I can’t spend anymore time feeling sorry for myself. If you want to help Accepting the Gift grow, we’re still hiring writers and outreach coordinators. Both are paid positions and are crucial to our mission. Learn how to apply HERE.
In addition to finishing up and submitting everything for the Challenge judges early last week, we also started school. Two weeks in now and so far so good. I realized at the last minute that I hadn’t uploaded as much of Edie’s assignments to her Google classes as I thought, but after a little last minute scrambling all is well. I have not had to buy any forgotten items, although Fulton is asking that I please purchase the audio version of Story of the World Volume II as he doesn’t like the way I read the chapters. Even when I try really hard to sound like Jim Weiss, the boys are not impressed.
We were supposed to go to Lancaster for a Monster Truck show last Saturday (belated birthday present for Fulton) but our van’s wheelchair lift suddenly started leaking hydraulic fluid rendering it useless. Just as useless is the system by which our repair shop gets its parts. They ordered a replacement hose on Monday and told us it would arrive on FRIDAY. I can Amazon Prime up all kinds of things in 24 hours. Why does it take a week for a hose in Indiana to arrive in New Jersey? Thankfully the lift was repaired this Monday and we can go to Lancaster this weekend for the NIGHT OF DESTRUCTION demolition derby which sounds just as epic as the Monster Truck show.
On Tuesday we had our home inspection by the Office of Licensing. Passing the inspection is the next step in becoming foster parents. We did not pass for a bunch of minor things, so we will be inspected again in a couple weeks. But the biggest surprise of the inspection was learning that even with the space, we cannot foster a baby. The reason? No home can have more than two non-ambulatory children in it. I was aware of that, but for some reason I thought that meant we couldn’t take a third child in a wheelchair. However I learned on Tuesday that because babies can’t walk, we can’t foster them since Fulton and Teddy can’t walk either. This seems completely ridiculous to me. We also learned that even though the upstairs bedroom is huge and easily fits three beds and closets, because of the slope of the ceiling, it’s only “legal” for two children. So anyway, this has changed our plans a bit. I’m looking at fostering (and adoption) as a long term thing. Even if right now we can’t do much, going though this process now and keeping up to date on our license means that as our kids move out we can consider other or more placements. It’s not an absolute thing we can only do right now in one very particular way. Edie was most disappointed that we can’t foster a baby girl but I told her we’re wide open to fostering and adoption- we’re literally doing everything we can to make it work. If it doesn’t, it won’t be for lack of trying, so we just need to trust its not meant to be. When and if it is, it will happen.
FINALLY – my book is available for preorder!! AND purchase if you want a Kindle copy! Clicky click for your own copy!
I’ll be honest, it’s sort of anti-climactic because for some reason Amazon is not showing the cover image for the paperback copy. You can view the inside, but you can only see the cover when you select Kindle. Hopefully, this will be remedied soon. In the mean time, order now so you can get a copy in your hands the moment it drops on October 8th! Or download it to your Kindle and get a jump on everyone else! Be sure to leave a review. Preorders and reviews are how Amazon determines what books to share with other shoppers so I super appreciate your help in this department! I want to offer a bonus to anyone who preorders the book, but I’m wondering what y’all would prefer? Drop a comment below. Right now I’m thinking maybe giant stickers of my face? Or cocktail napkins? Clearly I need some help.
I’m going to be putting all my free time into promotion now so please forgive me if my book is all I write about for the foreseeable future… at least until Teddy’s surgery in November. Then my priorities will shift again for a bit. But I do have some fun ideas; maybe a virtual cocktail party/ Q&A session? A giveaway or two? And maybe I can even get a few safe in person events planed where we can all meet up. Have a book club or group that needs an author speaker? Let’s chat! Hit me up on my Contact page.
It’s been years in the making and it’s almost here! Time to forget how painful and arduous the writing process was and PARTY.
Got some exciting news of your own? Write it down then link it up below. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!
Enjoy some pictures from our trip taking Addie to Cleveland State University. I’ll be updating through the rest of today. We’ll drop her off at her dorm Saturday morning and then head home.
Edie and I arrived back in New Jersey Saturday evening. Addie has already texted me about all the swag she’s picking up at the “Welcome Week” events. Tony is excited about the leftover schnitzel I brought him from the Hofbräuhaus. Byron, Fulton, and Teddy were happy to see me for a minute, but then they wanted me to turn back on Mortal Kombat (the original). Everything is as it should be I suppose.
Write down your Takes and link them up below. Be sure to include a link back to this post so your readers can find all of the Quick Takes. I look forward to reading your posts!
All the homeschoolers in the house, make some noise!!!
St. Bruno the Great homeschool has four students this year: Byron, senior; Edie, sophomore; Fulton, 8th grade; and Teddy, 5th grade. We’re going to continue with our classically inspired, “hot mess” style curriculum for the umpteenth year in a row. Let’s jump into all the details shall we?????
Byron, 12th grade – Three classes at the community college this fall, and three classes at the community college in the spring. [wipes hands clean and walks away]
But seriously, having just seen how many of Addie’s community college classes transferred from her senior year of high school and her freshman year (all but one- she’s going in with 42 credits), has solidified my decision to have Byron finish out his high school career this way. Besides getting to outsource high level classes, we’re saving a ton on future college tuition.
Edie, 10th grade
Writing – A combination of Time 4 Writing classes and writing assignments tied to literature. While I liked The Good and Beautiful (TGB) English program, there was too much extra stuff we didn’t need. Plus, I like for the kids to get feedback on their writing from other teachers. She’ll alternate semesters between doing an online writing course, and then reviewing those skills in assignments for me submitted via Google Classroom.
Grammar – She made good progress in grammar thanks to TGB program and I didn’t want her to lose that so I went with Daily Grammar Practice.
Literature – Books from the Middle Ages; one text a semester. Sir Gawain and the Green Knight, Beowulf, Canterbury Tales and The Inferno. I use SparkNotes online to help with quizzes and literary analysis topics but Edie submits all the work to me in Google Classroom.
History – The History of the Medieval World; weekly questions and regular essays, plus some map tracing and labeling. It’s a non-Catholic source, so we’ll see how their treatment of the Church goes, but I have other supplemental books I can introduce (as well as Church documents) as needed. (Also all done on Google Classroom.)
Art – Classes as she wants at a new art studio downtown.
Foreign Language – She’s informally teaching herself Italian.
Fulton, 8th grade
Writing – Narrating assignments from history and science using speech to type programs. Interesting facts he wants to remember will be used as copywork or dictation practice.
Reading Skills – My focus this year will be switching away from intensive reading pratice, and instead on helping Fulton learn the material that is important to him through programs that read text aloud. We will do some reading practice based on the methods outlined in The Dyslexic Advantage. I will do a full post on this book at another time, but its done wonders for helping me understand the dyslexic mind and how to adapt teaching methods along with my own mindset.
Literature – Historical fiction tied to history. We have a ton of titles so I’ll let him pick a few throughout the year.
Math – Right Start Math – Something new this year. Still has workbook practice like Abeka along with some other activities I hope will help with understanding and retention.
Religion – CONFIRMATION YEAR! We actually started confirmation prep last year and we’ll continue through this school year.
Grammar – Same program as Edie, just an easier level. We’ll break down one sentence over the course of the week together.
Science – Two or three units from The Good and Beautiful. We’re starting with Geology.
Art – Discovering Great Artists – This is a favorite book of mine. I’m excited to work through some of the projects with Fulton and Teddy.
Audio Book – The boys will get stretched daily and listen to an audio book. The focus will be on children’s adaptions of Middle Aged literature: Beowulf, King Arthur, etc.
I’ll be switching up my schedule a bit this year to accommodate Teddy’s surgery and running Accepting the Gift. I’ll save those details for another time. All my previous curriculum posts can be found HERE. All my other super interesting homeschooling posts, books, etc. are HERE.
Now how about a link up? Share your school picks below, or really any other random Takes you’ve got. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!
It’s Spinal Muscular Atrophy Awareness Month! Or as some are dubbing it, SMA Pride Month! The two titles show the two sides to the SMA community; the adults living with SMA, and the parents of children with SMA. Most of the time, we all get along in our social media groups and at events. But this month the conversation changed because some people in the community want to celebrate their identity as a person with SMA, while others argue there is absolutely nothing about SMA to celebrate. SMA is either what makes someone special and unique, or it is the cause of someone else’s suffering and death-period.
I’m sharing a look inside a very specific community because it illustrates a larger issue at play today between disabled adults and the parents of disabled children and how the views of each are affected by, and affect society at large. But for me, the conversation is often lacking one critical component: Christ and his Church. Without a view of the human person enlightened by faith, no one can really hope to wrap their mind around, and make peace with, something like SMA. So I wanted to express my thoughts on having pride as a disabled person (as much as I am able to despite not actually being disabled myself), and spreading awareness of a specific diagnosis, and how expressing both are compatible, and desirable, within the faith. They’re not mutually exclusive values as some on either side would believe, though its hard to get there without a Christ-entered framework to approach it from.
First, let’s tackle awareness, as it’s the approach most of us are familiar with regarding any diagnosis or disease. We wear pink, dump buckets of ice water on ourselves, or light it up blue to bring awareness to a particular cause (like breast cancer, ALS, or autism) and ideally inspire people to give money to fund research for a treatment or cure. Historically in the SMA community, awareness has been spread though images of children hooked up to ventilators, scary statistics, and events held in honor of a child who has died. Society at large is made aware of a horrible disease and ideally is moved to contribute in order to eradicate the suffering of little children. Recently, criticism has been leveled at this approach and thankfully, SMA organizations and other large organizations that serve disabled adults, children and their families are changing to promote a message that spreads awareness and encourages people to give so that people can live a better life as a disabled person. Rather than focus on how awful a disease is, the focus shifts to the dignity of the disabled person and improving his or her quality of life.
As a Catholic, I’m happy for the change. In the first few years following the boys diagnosis, I would often answer strangers questions with the same grim statistics I’d heard. I was still in a negative place personally, and I expressed that through only sharing the negative aspect of the disease. However all that did was make people feel sorry for my sons and for our family and for all people with the disease. It perpetuated the belief that something was wrong with Fulton and Teddy, that they needed to be fixed, and that it would be better for parents and society if we could prevent children like them from being born.
Obviously I was wrong. I learned to listen to the voices of adults living with SMA and other physical disabilities and I began to realize how my sons, and all disabled children and adults, are prefect just as they are created. God knew them in the womb and whatever mission He has for them, they can fulfill it in their lifetime with whatever abilities they were created with. The are happy, living a wonderful life, and doing just fine the way they are. Yes, there needs to be awareness, but it needs to focus on the dignity of disabled people so that we can better serve them through life sustaining treatments and access to the parts of life able-bodied people take for granted. You can live a happy and joyful life as a physically or intellectually disabled person regardless if you are expected to live a few hours, a few days, or the typical American lifespan. What will make the biggest difference is how you are loved and accepted by those around you. That is what spreading awareness should do, build acceptance, not fear monger.
Unfortunately, conflict arises when parents of children who are severely disabled are unable to see any benefit to their child having a disability. And I understand that. I was firmly in that camp for a bit, even a practicing Catholic. There was a divide between what my faith taught, and what I was feeling at the time. For parents struggling in their faith, or with no faith to begin with, the idea that God can bring good from any circumstance is meaningless as are any arguments about a greater acceptance of disabled people in society. They are wrapped up in a here and now in which they cannot see the joy, only suffering. For them awareness is about prevention and a cure so that no one else should feel as bad as they do. It’s why they butt heads with disabled adults rather than learn from them. Their child does not have a future; how can they celebrate that which is going to be denied to him or her?
Some parents can move past this anger and despair in time, even after the loss of a child, but not all. And this pain cannot be ignored or downplayed by people celebrating SMA/ disability pride. Here is where the focus of awareness needs to shift to one of the meaning of redemptive suffering and the peace that can be found by placing radical trust in God. That is ultimately the mission of my apostolate Accepting the Gift. It is building an awareness of hope that can be sorely lacking when you are face to face with a devastating medical diagnosis. Yes, things may be unbelievably hard, and while I do believe God can give us more than we can handle alone, He does not abandon us, and what more awareness can hopefully do is raise up more Catholics and Christians to care for us so we are not alone. Giving money is not enough; we need you to get your hands and hearts dirty in the trenches with us. Walk with us in our pain, model Christ, and make us aware of His love for us and His ability to lessen our physical, mental, emotional, and spiritual burdens. We need you to see and celebrate the dignity in our child so we can see it too.
So what about SMA Pride? Aside from the difficulty of separating it from the LGBQT+ movement and any association of it as a deadly sin, there are definitely things that disabled adults can be proud of. They, like us, are allowed to be proud that they are a child of God; created in His image with inherent dignity that cannot be taken away or diminished due to their intellectual or physical disabilities. God loves them no less than “healthy” able-bodied children and adults. They should be proud of their accomplishments, not because they’re mistakenly viewed as inspirational in our eyes, but because they’ve overcome numerous obstacles in a world not designed or , and resistant to adapt to, disabled bodies. Every time barriers fall and more access is gained, that is a reason for disabled people to celebrate and be proud. As SMA adults come together to celebrate living and thriving with a disease that was once considered a childhood condition, they can now help fight for equal pay, marriage equity, and a more accessible world for all people. They are bringing awareness to what really matters; creating a more just society- enthusiastically fueled by pride in who they are, despite the prejudices many able-bodied people have about them. We can work with them, following their lead, to bring inclusion to our parishes, dioceses, schools, and communities.
So there is room for both SMA awareness (in various forms), and healthy pride this month. Our prayers should be with SMA parents who are struggling without support and without hope and who live in areas without access to proper medical care and the newest life extending treatments. We also extend our prayers to adults with SMA who fight prejudice everyday but who are venturing into new territory and making the world a better, more accessible place for kids like Fulton and Teddy. Let us ask how we can model Christ and His Church to both population: through increased love and support for hurting parents and through the creation of fully accessible parishes that welcome all of God’s children.
Link up for this week is below. Be sure to let your readers know there’s a really long post waiting for them here!
Where is the summer going? How is July almost over??? At least I got one, nice relaxing week in.
On Sunday, on the way home from Mass, we had trouble with our van again. Thankfully, we made it home going super slow; no gross hotel room overnights required. We dropped it off at our mechanic on Monday. Thankfully, it was a “easy” fix, however locating the special, heavy duty part our van required took several days.The mechanic in Virginia didn’t do anything wrong intentionally. They simply replaced the broken part with a part that works on most vans, just not ours. We’re lucky it lasted as long as it did.
The big news this week was that Addie finally figured out where she’s going to college in the fall; Cleveland State University! She really wanted to go to the University of Detroit Mercy, and we wanted her to be able to attend UDM, but we also don’t want her graduating with a ton of debt and CSU is a more affordable option. It’s actually cheaper than the state schools here in New Jersey, and it has a Division 1 women’s fencing team. She’ll be going “sight unseen” as we did not actually tour the campus. I wanted to tour it her senior year but once she settled on UDM, she didn’t want to visit any more schools. I’ve kept it on my radar anyway and I encouraged her to apply. She had been putting off making a decision (she’d been accepted as a transfer student to both UDM and CSU), but once we really sat down and talked about the pros and cons, it was a pretty easy decision and she’s really excited to go. So the next question is, who do I know in Cleveland???
Work for the OSV Challenge continues, and I committed last weekend to finishing up all my school planning for the 2021-22 year so I could focus on my apostolate Accepting the Gift through the rest of our summer break. I ordered all my books on Monday, which makes this the second year in a row I got all my planning done before August. Last year, lockdowns meant I had tons of time to sit and plan, so I finished early in the hopes all my curriculum would be in stock. All that work last year paid off two-fold, because it really helped make it easier to select curriculum for this year (which will of course be outlined in a future post for the small percentage of you who care). I still need to upload assignments into Google Classroom for Edie, but the hardest part of planning is done.
Part of my work for Accepting the Gift now includes hiring people! If you’re a writer or a someone with social media managing experience, and you’re interested in contributing to an apostolate which is committed to providing resources and support to Catholic special needs parents, please check out my (very informal) job listings and email me if you’re interested! I’d love to fill these spots with readers and followers who are excited about the work before using a hiring site, so respond soon if you’d like to join in this important mission.
Next week I’ll be on Iowa Catholic Radio talking with Joe Leonetti during his morning show about Accepting the Gift. Hopefully I can even making a quick, shameless plug for my book. You can listen online HERE or if you’re local tune into 1150 AM, 88.5 FM, or 94.5 FM on Wednesday morning between 7 a.m. and 8 a.m. CST. I should be on around 7:15 a.m. but it’s live radio so, no promises.
I think that’s everything. No van meant no exciting day trips, though we did try out the new restaurant in town that serves all their sandwiches on large pickles instead of bread. Four of us liked it, one didn’t, and two wouldn’t even give it a try. #picklereubenalltheway
What sandwich would you eat on a pickle??? Write it down in your Takes and link it up below. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!
Time for a vacation recap post! Some camp pictures, some vacation stories, and one trip extension later, we’re finally all home and fully unpacked.
Saturday – We kissed the older three goodbye and were on the road by 8:30 a.m. We hit some awful traffic around Washington, DC, and we arrived at South of the Border in South Carolina around 7:30 p.m. We ate at the Sombrero Restaurant, and checked out the largest gift shop. The handicap accessible room was huge, but unfortunately, I stepped on a cockroach the size of my thumb while rolling Fulton in the middle of the night. But did I cancel our reservation for another room on the return trip home? No! Because Fulton and Teddy wanted to come back and try to experience all that this roadside attraction had to offer and sanitary conditions be damned!!
And while I didn’t want to publicize it online during our travels, the older kids got to experience being home alone for some of our trip. I liked being given that responsibility when I was in high school, and I felt our kids were mature enough to handle it. So while they did spend time with my parents, they also had a few days on their own, which all went fine. It was honestly less exciting for them than they expected, but thankfully for us, they did the important things like mow the grass and take out the trash, and not say, throw a house party.
Sunday – We left by 7:30 a.m. so we could make a mass in Georgia by 10:30. We hit some rain and heavy traffic, but we still made it to our rental in Bradenton, FL by 6:30 p.m. After only having one really bad AirBnB experience, I was a bit worried about how things would go this week, but the rental was great. There was a small step we used our portable ramp on, and the boys had no trouble getting in and getting around. It was clean, well stocked, and comfortable. My faith in using AirBnB was restored.
Monday – Up early once again since camp check-in was 8:30 a.m. and we were 30 minutes away. Check-in is always a process because I’m trying to explain everything about the boys as quickly as possible. I actually have a sheet that lists all their daily care items, medications, etc. that I give to the nurses and counselors for them to reference during the week. Although it was a completely new camp with no familiar faced, Fulton and Teddy were pretty chill about drop off. We left by 10 a.m. to start Mama Papa week! I tried not to think about the worried and overwhelmed looks on the faces of the counselors as we pulled out. We spent the rest of the day relaxing at our rental, admiring the huge amounts of lizards that seemed to live everywhere, and for dinner we walked to a ramen shop with more sakes on the menu then ramen selections.
Tuesday- We finally got to sleep in, but I didn’t really need to since I got such a solid night’s sleep the night before. Getting an undisturbed night of sleep is so unusual for my body it woke up at 6:30 a.m. ready to climb Mt. Everest. We went to Holmes Beach for a bit (and learned that arriving early is the only way you can score a free public parking spot). Lying on a beach without kids is such a novel experience. I’ve never been on the gulf coast to my recollection and I was surprised how calm the water was, and how salty! It was so peaceful to just go out and float. On the way home we stopped for lunch at a restaurant on the water (nothing special and not worth mentioning). Later in the afternoon we walked the trail at the DeSoto National Memorial before the sky opened up. That seemed to be the pattern for most of the week; very hot and humid, then storms in the afternoon, before clearing up in the evening. Funny thing is, Fulton and Teddy claim they had no rain at camp all week. We also got ice cream before heading back and settling in for a movie. I love watching inappropriate comedies when I’m on vacation and so we watched Bridesmaids.
Wednesday – We got a call from camp first thing in the morning saying Teddy was having digestive issues. This happens every year so I wasn’t too concerned since he had no other symptoms. I said if he still had issues in another 12 hours to let me know, but thankfully, I didn’t get any more calls. It was a slow morning but later in the afternoon, we went into downtown Bradenton to check out the Art Village and Riverwalk. A lot of the shops and galleries were closed, and it was super hot, but we did find a tattoo parlor/ comic book shop where we picked up souvenirs for all three boys. (Comics, not tattoos.)
For dinner we wanted to try Edelweiss, a German restaurant we’d passed and it was AWESOME. Thankfully we’d arrived early because usually you need a reservation to get a seat, but they were able to squeeze us in. I got a fabulous schnitzel and potato pancakes and I even had some of the German beer on tap. Plus, there was accordion music. We were, not surprisingly, the youngest people there. It was a huge highlight for us being the lovers of German food and culture that we are. We went back and watched Old School that night.
Thursday – Hit the beach again in the morning. Relaxed in the afternoon and participated in another OSV Challenge class. The program kicked off this week and it was nice to participate in the Zoom calls without needing to resort to bribes of Disney+ to keep kids quiet in the background. I also did a video call with Edie. She was preparing to leave on a Sea Scouts cruise and wanted to see me (and Tony) before she left since she would be gone when we arrived at home. It was nice that the older kids could contact us when they wanted or needed to, but thankfully, there wasn’t too much back and forth. We wanted to go back to the German restaurant and sit at the bar that evening, but the parking lot was already packed so we went to Motorworks Brewing instead. It was a great outdoor seating area and the weather was perfect. Food and beer were okay, but most of the brews I wanted to try were out of stock so maybe I’d find something I liked better on another trip.
Friday – Our last morning alone! Nothing too exciting. Pick up was a 3. Everyone said how much they enjoyed having Fulton and Teddy and hoped they come back again next summer. Their counselors looked tired, but happy. The boys were only slightly embarrassed when I gave them both huge hugs and smooches. They shared about an epic prank they pulled on another cabin, how they managed to avoid taking more than a couple showers, and showed off some arts and crafts projects. They couldn’t help making lots of comparisons to MDA camp but both had a good week.
Saturday – Our plan was to go to Give Kids the World Village, which is where we stayed when our family was awarded a trip to Florida. They allow alumni families to visit up to four times a year. Unfortunately, they’re only open to visitors from 9 until 12 p.m on Saturday so, for something different, we woke up early to make the two hour drive to maximize our time. The boys were really excited to visit GKWV again. We arrived right at 9 and got breakfast, visited Fulton’s star in the Castle of Miracles, rode the carousel, played in the arcade and spent an exhausting amount of time running through the epic splash pad. We even managed to squeeze in some ice cream before it was time to go.
Then it was time for Gatorland! It was so hot, and so crowded, I was seriously second guessing this decision before we even got in line to buy overpriced tickets but the boys were so excited we went ahead with it. The crowds and heat did dampen their enthusiasm a bit, but we did watch some great shows and we got to see lots of gators jumping for food. We could’ve stayed longer if we weren’t so sweaty and wiped out. We would all like to go again and take our time and maybe even try their accessible zip line!
Sunday – How about we wake up early???? Sure thing! We packed up and did all the check out cleaning around the rental before leaving for a 9 a.m. Mass. We were on the road by 10 with the hopes of getting to South of the Border in time to buy some fireworks and maybe get some chili-dogs. Unfortunately, we hit lots of heavy rain which slowed us down and we didn’t arrive until 9 p.m. We were put in the same room but thankfully, there were no roaches this time. (For the record, I really like South of the Border and would go again, I just don’t think I want to stay overnight there anymore. Fulton on the other hand would like to plan a vacation just to SOB.)
Monday – I didn’t set an alarm this morning and although Tony and I really wanted to get home, we managed to sleep in a bit, pick up a few souvenirs, some fireworks, and Fulton even got the chili-dog he wanted for breakfast. Because of the awful traffic we hit on the way down, we decided to take a different route home. It would be slightly longer but would be more scenic and less stressful…or so we thought! (Cue ominous music…) After driving over the Chesapeake Bay Bridge, we hit a stretch of road with several traffic lights. We’d noticed some noise from under our van, but now it had become a horrible loud banging that was especially loud as I tried to accelerate from a stop. We decided we needed to pull into a garage and get it looked at ASAP. We discovered our drive shaft had broken loose and was laying on our under-mount wheelchair lift, which isn’t really great for either part. We were forced to get a hotel room nearby and wait for the necessary part to come in, and for the repair to be made. While our handicap accessible hotel room had a roll in shower, it was small with little room for the chairs to move around, had weak wi-fi, and worst of all, it smelled like cat urine. And everything was sticky and damp, oh, and there were tons of flies. Teddy said, “It’s like a hydra. You kill one and two more appear to take its place.” While there were no cockroaches (that I saw) it was a dive for sure, and the pool was closed. Thankfully I’d packed enough extra supplies, and Tony or I could walk to McDonald’s or CVS for extra food or supplies, but I was praying we’d only be there one night.
“Bonus” Tuesday – On Tuesday we sat around. Tony couldn’t do much work due to the poor wi-fi. Because of our location on a four lane highway, I couldn’t walk with the boys anywhere. We watched TV, played on tablets, listed to an audio book, read, and tried to kill time while we waited for news from the garage. Thankfully, our van was fixed for a fair price by 5 p.m. After packing, we were on the road by 6 and only made one quick stop on the way home. We finally pulled in at 10:30 p.m. Addie and Byron came outside to greet us and we immediately made them help unload the van. All the animals gathered round for attention as well. I was very happy to be home.
Phew! How was your week? Write it down then link it up below. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!
No Takes this week while we’re maxing and relaxing in Florida!!! All the details will be in next week’s post. But until then, know that it’s been a great time for Tony and I. I’m hoping when we pick Fulton and Teddy up later today (Friday) that they say the same thing. Saturday we’ll be at Give Kids the World Village, and hopefully Gatorland. Sunday we head home with another stop at South of the Border on Sunday night, before arriving back in New Jersey on Monday. Lots of stories and pictures to share later! Until then, pray for safe travels! Thank you!
PACKING, PACKING, PACKING! It’s all the fun of packing for camp, while also packing and planning for a 16 hour road trip. There’s also the constant worry that something will go horribly wrong and derail all my plans for the week. But how about a few Takes to keep me from fretting for a bit???
Between updating and printing out my three page packing list for Fulton and Teddy, and organizing all their clothes for the next ten days, I’ve been pushing to finish all my grading for the 2020-21 school year. The OSV Accelerator (which is the program all the semi-finalists are participating in) begins next week while we’re in Florida, and I really want to not have to focus on school and the Accelerator at the same time. I mean, it’s inevitable since the Accelerator runs up until the week I want to start school back up, but I’d like to minimize distractions as much as possible. And let me get it down on the blog so it’s official, but next year I’m really and truly going to grade more as I go and stay on top of checking work at least once a week!!! For real!! I mean it!! If I can become a semi-finalist in a highly competitive national challenge, I can stay on top of school work most definitely!!!
But to backtrack a bit, our Nativity of St. John the Baptist party was a huge success (as usual)! We did get some rain but thankfully, no gusts of wind so our tent stayed up, and everyone stayed comfortable during the short cloudbursts. Our pig was a huge hit, as was our fireworks show. There was some disagreement over what type of music to play during the party, but everyone agreed the Block Rocker speaker was a great addition, even our neighbor at the end of the block who enjoyed listening to Tony’s soundtrack selections during fireworks.We had 101 people, two thirds of whom were children. I didn’t sit down the entire time, but for as crazy as it was, I really felt in my element. We didn’t do anything on the fourth of July except clean up and rest.
On Monday Addie competed in a national fencing tournament in Philadelphia. This tournament is held yearly at different locations around the country so we really lucked out that it landed so close to home. She fenced well, but was up against such tough competition she didn’t come close to medaling. It was a good learning experience, and it also reassured us that she hadn’t lost too much ground during quarantine when her training was severely curtailed. Her future college destination is still up in the air as we navigate the confusing NCAA regulations regarding transfer students.
On Tuesday evening I went to the movies with a friend for the first time in forever to see something that wasn’t part of the MCU. Summer of Soul (…Or, When The Revolution Could Not Be Televised), is a documentary about the Harlem Cultural Festival that took place over six weekends in the summer of 1969 in Mount Morris Park in Harlem, NYC. It was filmed, but never shown because no one was interest in airing, what was billed as “The Black Woodstock” on TV, despite headliners like Stevie Wonder, Gladys Knight and the Pips, and Sly and the Family Stone. I danced along in my seat to the music, but the historic back story behind the festival, and it’s place in time amidst the moon landing and civil rights movement were just as compelling. Highly recommended.
How was your week? Write it down then link it up below. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!
If you don’t follow me anywhere but here, then you might have missed the announcement on Saturday night that my apostolate Accepting the Gift was named one of the 25 semi-finalists in the OSV Challenge. It’s a HUGE deal. I’m going to get a mentor, spiritual direction, business guidance, and funding to help grow the ministry. If I’m lucky, I’ll be named one of the 12 finalists and get to give my pitch to a panel of judges at the OSV Summit in September and maybe win one of three $100,000 grand prizes (!!!). I’m equal parts excited and overwhelmed, but mostly I can’t wait to get started and do some of the things I didn’t have the knowledge or resources to do before. If you’re not already, you can follow Accepting the Gift via newsletter, on IG, FB, and at the website.
As I was preparing to take Edie and Addie shopping on Saturday afternoon when Byron called me. Considering he never calls, and the first words out of his mouth were, “Don’t worry, I’m not hurt.” I knew it wasn’t good news. Unfortunately, he’d been hit by a car while on his bike. Thankfully, everyone was going slow and the only damage was to Byron’s bike. He was shook up more than anything. I made him call out of work for the day and my father in law tried to bend the bike back into shape to no avail. For now, Byron is back to walking or driving (with me) to work. There’s a bike shop in town, I just need to make the time to get the bike there and see if it can be saved or junked. Between this and his dislocated elbow, I think Byron and his guardian angel have had enough excitement for this year thankyouverymuch!
Fulton turned 13 on Monday! THIRTEEN! He requested homemade Chick-Fil-A sandwiches (which I make with this recipe-THE.BEST.) and he got games (including this cool looking oneaffiliate link), books, and a Funko Pop figure we have no room for. I think (I KNOW) he and Teddy only ask for them because it annoys me to acquire things just to stick them on a shelf for display.
On Tuesday, which was the hottest day of the whole year (I imagine) I sat outside and tried to sell used homeschooling curriculum. It was as profitable and sweaty as you can imagine. I had several boxes of $1 items that were popular, but I couldn’t convince anyone to purchase the many, many Latin sets I’m trying to sell (Latin for Children A,B,C and The Latin Road to English Grammar in case anyone is looking) or the recorders (but no surprise there).
I came home, showered and then met up with my college roomates for dinner. It was the first we’d seen each other since before COVID hit, and the first any of them had seen my new house. After giving them the tour and making them touch the wallpaper in our hallway for an uncomfortably long time, we walked to one of my favorite Italian places for dinner. It’s nice to have the kinds of friends that you can just pick up conversations with, even after a long absence. We all live within a couple hours of one another, but between jobs, kids, and life the most we seem to manage is dinner once or twice a year. We managed a weekend getaway once through a strange aligning of the stars that hasn’t happened since.
Now it’s just non-stop party prep for our annual Nativity of St. John the Baptist party, held slightly later than usual. The weather forecast does not look ideal, but this party is RAIN OR SHINE. I really don’t want to relive this year, but I’m just so happy to be able to have people over and eat food and talk that I’ll pack everyone in my house for as long as they want if that’s what it takes! We’re getting a whole roast pig, shooting off fireworks, burning a bonfire, and Tony bought a speaker called the ‘Block Rocker’ so, we’re going to get crazy by alternating loud Gregorian chant and Dean Martin music before the town’s noise ordinance kicks in at 10 p.m.
Oh, and newsletter subscribers saw it this morning but here’s my book’s cover!
No idea about preordering yet, but I’ll keep you posted! In the mean time, link up your hot Takes below. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!
We settled on a beach chair! We’re going to get a kit from Hotshot Products that will allow us to turn Fulton’s old powerchair into a motorized beach chair. (It’s a disabled run business! Learn about the founder here in this video from Inside Edition!!) We’ll still have the option to use the chair as a backup powerchair if/when one of the boys’ regular chairs breaks down, as the beach wheels can be added and removed when needed (making transportation easier!). Currently the old powerchair is dead and needs some updating, so rather than purchasing a kit RIGHT NOW like I want to do, Tony (responsibly) suggested replacing the batteries and making sure it runs and checking the electronics before investing in the beach chair kit. So I’m waiting on batteries from Amazon. (Update: Batteries arrived and the chair works!!) I will also need to replace the back of the chair as the pediatric-sized seatback that is currently on the chair is too small/ short for both boys. Thankfully, there are lots of spare parts on eBay so I should be able to upgrade it without much trouble. I’ve also saved a listing for a new controller if it turns out the current one (which I’ve already taken apart and fixed once) no longer works. But even after all that, upgrading this chair is still a lot cheaper than buying a completely new power beach chair ($8-11,000 !!!), and not that much more expensive than the manual, push style beach chair we already have. I’m hopeful that by having one boy drive himself onto the beach (carrying some of our gear on his chair) while I push the other boy in the Mobi-Chair, will allow me to take the kids to the beach solo again. (And by solo I mean with Fulton’s nurse and ideally one big kid.) Fulton and Teddy can take turns in both chairs, enjoying the surf and the sand, and I can get a break from dragging/hauling so much stuff/ kids across the beach. Even though this modification kit and chair repairs were not in the budget, Tony says we can make it work, so I’m not holding a fundraiser per se, but I will put any Ko-Fi donations I receive through the summer towards the boys’ new beach chair. I expect the total cost (kit, repairs, shipping) to be around $3,000. Another way you can help us offset the cost of the new chair, is by purchasing any of the books in my shop, or hiring me to give a talk, online or in-person. Thank you to everyone who has used my Ko-Fi link to support my work and my family so far, and to everyone who has purchased one of my books!
I got my book cover!! BUT! there was a typo in the subtitle so I’m waiting for that to be corrected and then I can share it with y’all. It’s bright and upbeat but doesn’t scream “This is a book for special needs MOMS with BIG FEELINGS!!!” I hope that men feel just as comfortable picking up my book as women do. And while my story is 100 percent Catholic, the choice of art and font won’t smack a Protestant upside the head and declare, “Prepare to get proselytized homies!!” I hope people of all faiths, or no faith, can learn something. And for those who aren’t special needs parents themselves, but want to learn how to help families like mine, I want this book to grab you by the eyeballs and make you think, “Wow! That cover makes me want to make the whole world accessible to disabled people and their families!!!” Looking forward to sharing it soon.
I also have a big announcement I can’t share publicly yet, but I’m planning on doing a simultaneous live stream from my Accepting the Gift Facebook page and Instagram accounts Sunday night at 9 p.m. EST UPDATE: moving it up to Saturday night at 9 p.m. EST!!!! (94 percent sure I have the technology figured out.) I’ll share the videos on my personal/ blog Facebook pages and Instagram accounts afterwards. Blog update will follow eventually; at the latest, next Friday.
We have a surgery date for Teddy! On Tuesday, November 16, Teddy will have spinal fusion surgery at Shriner’s Hospital in Philadelphia. It sounds far away, but there’s plenty to plan in advance to make sure everything runs smoothly. First up is getting approvals for the MRI, and getting CHOP to sign off on the surgery. Then there’ll be labwork. Thanksgiving plans will be changed and I hope to get Christmas shopping done before the surgery (I’m usually shopping the week of Christmas). I’ve planned out next year’s school calendar; moving our start date up to August 17, and blocking out eight weeks for Teddy’s recovery. That means school planning needs to be DONE by then, not just getting started. Of course my book releases on October 8th, and I hope to get lots of promo in for that as well. And while it sounds overwhelming, just having a date means I have the ability to start planning which at least gives me the illusion of control. Like I did with Fulton, I’ll share Teddy’s room number and the hospital’s address so you can have a reason to clean out your children’s old artwork. Just write ‘Feel better soon!’ across the top of whatever the scribble is and stick it in the mail without guilt. Your kids won’t feel bad that you got rid of it, and Teddy gets room decorations. Win win!!
I can drink beer again! Long time blog readers will know I’ve mentioned being gluten-free in the past. (Though I never claimed to have celiac disease-big difference!). Over the last couple years, I’ve been allowing myself more and more “cheats” without too much consequence. After making some other changes in my diet at the beginning of the year, I allowed myself to eat gluten again, as much as I wanted, to see what would happen. Things were going well, so I allowed myself to drink some Corona beer, which is said to have such a small amount of gluten, many gluten intolerant people can drink it without trouble. And I felt fine on it. So I tried some other light beer, then a lager, and I’ve felt fine. It was wonderful! While I’m not out pounding pitchers of Bud and eating piles of pasta, I’m glad that I can enjoy what everyone else in my house is eating and not require a special meal. I don’t regret giving up gluten; I think it really did help me for awhile, but I’m glad I have the choice to eat it again, and enjoy a cold brew occasionally.
That’s enough for now. Be sure to watch for my announcement Sunday SATURDAY night (which I’m just praying I don’t forget to make). In the mean time, write down your own Takes and link them up below. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!