I couldn’t sleep tonight, so I decided to put “pen to paper” to get my thoughts out. There’s no pictures in this one, only thoughts and memories.
We lost a wonderful husband, father, grandfather, brother, brother-in-law, uncle, and friend today to cancer. Uncle Bob is Brian’s uncle; he married Aunt Holly, Mom-in-love’s sister. He was also Brian’s godfather.
Uncle Bob wasn’t that old. Late 50s. He was jovial; he always had a smile and could crack a joke. He loved his daughters. He was so excited to be a grandfather (but don’t call him grandpa; he’s not old enough for that name!); his first grandchild is not even 6 months old. I think my favorite thing about Uncle Bob is he loved Marrion’s Piazza (in Dayton, Ohio) as much as I did!
But Cancer. It robbed him of his life, of time and memories with his family. It robbed his grandchildren of the feeling of his hug and sound of his laughter. It robbed so much from everyone.
We were on our way up to IKEA today when we got the news. It made both Brian and I contemplative as we strolled the walkways, sitting in chairs and opening drawers. We watched Caleb run from bed to bed as we discussed which shelving units we were getting today and took pictures of the desk and underbed drawers and loft bed we plan on getting at our next trip.
As we were eating lunch (because you can’t go to IKEA without getting Swedish meatballs!), talk turned towards memories. Brian asked me if I remembered the very first time we ever came to IKEA; of course I do. We were dating, less than a year, when Brian moved out of the apartment he shared with his father and into his own. To prep for the move, since Brian was starting from scratch, we journeyed the 45 minutes to get the necessities prior to him moving in. Of course, when you are dirt poor, the necessities differ greatly for what we’d claim as necessities today. We bought a small dish set, cheap glasses, a table and 4 chairs set. Other bare bone items you truly need when living alone. And we struggled to buy every last cheap glass and not so great quality duvet cover. We counted every last cent as we placed it in our cart. The very first day after we moved in, Brian went to work while I put the table and chairs together (I was and still am so proud I actually did that!). We still have that dining set; we still pinch pennies, though Brian’s job affords is many more little luxuries then we have ever had.
And we both said the same thing- we will never forget that time. We will never forget that building of our lives together, fighting to journey through life as one unit.
There’s a wall plaque I saw online that I told Brian I would love for my birthday. It says “I still remember the days I prayed for the blessings I have now.” How poignant! How moving! How grounding! It not only reminds us where we came from, but reminds us that we pray and God is the one who answers those prayers. It’s the Lord of all creation that bestows such benevolent blessings on those whom are created in His image. And if we never ever forget that, and we use prayer all the time- for thanks and praise, for requests, for hurt and sorrow, for health- He will answer with the best answer. It may not be the answer we want, but it’s the right answer nonetheless.
Let us always strive to practice humility and remember our roots. Even if you were personally born into privilege, you’re still benefiting from someone’s hard work and humble beginning- the very beginning of your roots planted down. And let us never forget to thank the One who lovingly granted answers to the those prayers. Uncle Bob was one who not only remembered his roots, he strives to plant even more roots for future generations.
I’m grateful I had the chance to know Uncle Bob. I’m grateful Caleb had the chance to meet him as well. I’m grateful for the gift of love he bestowed on Brian’s Aunt Holly all these years; they truly were a wonderful match. I’m grateful for the gift of life he gave Brian’s cousins, for being not only a father but a best friend to them; and for planting future roots for his grandchild and those to come. I’m grateful for all the hard work and devotion he put in when it came to Brian’s grandparents- heartily and without hesitation. I’m grateful for the times we had with him ourselves- from them journeying on the 10 hour drive to come to our wedding, to celebrating with us when we joyfully announced to the family at Grandpa’s 90th birthday we were expecting our first child. I’m just grateful for Bob.
If you think on it, please say a prayer for Bob’s wife, children, and grandchild as they go through the grieving and settle into a new “normal”. There’s never the right words to say with death, but L and K, please know we are holding you all close in our thoughts and we love you dearly. God is holding you all in the palm of His hand; He weeps alongside you. We love you.
Hey everyone! I know it’s been a few weeks since my last post. Brian and I decided before we left for Disney that it would be best if I focused on our trip and the family time; he wasn’t wrong in that decision (he rarely is when it comes to wise advice)!
Once we were home, it’s taken a good several solid weeks for me to recover. We’ve had some other stuff going on, and because of all that I haven’t posted.
But I’m back, and in addition to finishing up the Doing Disney Disabled series, I have other posts in mind as well! Parenting product reviews, faith posts, and disability posts are definitely on the schedule for the weeks and months to come, in addition to starting regular life posts (I mean, the holidays are coming and I’d love to share those with all of you!).
I’m also on the hunt for any bloggers willing to guest blog on here! If you think you have a topic that would fit well with the topics discussed here, feel free to leave a comment below or shoot me an email!
As always, prayers for our family are ever coveted and we are extremely grateful for them. Do you have a prayer request? Leave it below! I’m hoping to start a regular monthly or weekly prayer post her, and I’d love to include you!
*Our Disney Trip: Dining, including with Food Disability
*Our Disney Trip: The Parks
*Our Disney Trip: Overview and final thoughts, recommendations, as well as tips and tricks
Is there something you’d like to know? I’m all EARS!
In addition to the DAS Pass, we also decided this year to rent me a scooter (also called an Electrical Conveyance Vehicle is ECV). We used wheelchairs on our trips in 2010/2012, but we didn’t have a child at those times. Now we do. Brian needs to be able to help both of us, and he can’t do that while pushing a wheelchair. In addition, he wrenched his back (right before Disney, of course) and pushing a wheelchair would not help him enjoy the trip.
Renting a scooter can be a bit of a hassle. There’s several options: rent from a local company, or rent directly from Disney. First, here’s some info about Scooters directly from Disney:
If you rent directly from Disney, there’s several things to be noted. First, it’s only available in the parks, and they cannot be taken from park to park. If you decide to go to another park, you’d need to turn the scooter in and transfer to the other park without one (you only pay once; present your receipt at the second park). They are first come, first serve- once gone, they are gone. That becomes a bit risky if you truly need one. And the cost: at $50/day, plus, the refundable $100 deposit, renting one for one day is fine, but every day for a week long trip is an astronomical price.
There’s also renting from one of the many Scooter Rental Companies in Orlando. When renting one from an outside vendor, you want to start with the Disney approved ones, for multiple reasons. The biggest reason is their employees are considered Cast Members by Disney; this allows them to enter the parks and fix your scooter if something happens to it. Disney Approved Vendors often offer more discounts, like DVC and Annual Passholder discounts (almost all scooter companies also offer a returning customer discount). Disney Approved Vendors are allowed to drop the scooter off at the resorts without you being present; Disney requires other vendors to meet and hand over the scooter in person. Finally, if you are in a resort where you cannot get your scooter to your room (say, a 2nd floor villa in a building without an elevator at Old Key West), you can store your scooter at Bell Services if it’s a Disney Approved Vendor.
After calling around to both Disney Approved as well as regular rental companies, I decided to go with Apple Scooters for multiple reasons. The biggest reason is they are the most affordable option, by far. For 4 days (Sunday 5p through Thursday 7pm), it came to $138; the next closest was $163. They gave me a 10% off returning customer discount (even though I am technically not a returning customer- I could have sworn I used them when we went to New Orleans in 2009, but apparently they don’t have a location there. So now I have no idea who I used. But when the guy heard plus being a DVC member, he graciously offered the discount anyway); that brought the price down to $124. They include insurance in their price; many of the others don’t, so it would have been $163+ plus whatever the insurance cost was (around $20-25). And the employee graciously offered to make a note on my ticket that even though it’s a 4 day rental scheduled for pick up Thursday at 7pm, they won’t pick it up until early Friday morning (we leave Friday around 9:30a), and it avoids adding the cost of another day onto my rental.
There’s some things to note about using scooters at Disney (and much of it applies to wheelchairs as well).
Your scooter or wheelchair should fit fine in your room with no issues. You may have to move the table and chairs in the room, but usually there’s more than enough room for both. As stated before, you can store your scooter at Bell Services if it’s from a Disney Approved Vendor. Charge your scooter every night!! You’ll want to bring your battery with you to the parks to charge your scooter (most have baskets on the front). Most restaurants (I believe all table service restaurants) have charging locations available while you eat. The battery lasts about 9-10 hours, but I’m one who doesn’t like to risk it, especially if it’s going to be a long or rigorous day.
You’ll want to pack an old towel or 2 as well as poncho for park days, in case it rains or is really hot. That way you can throw a poncho over the scooter and have a towel to wipe off the seat if it gets wet. On hot days you’ll want to sit on a towel- trust me, those vinyl seats are uncomfortable when sweaty.
You’ll want to use the Disney Transportation System, especially the buses, with either scooters or wheelchairs. When lining up at a bus stop, you’ll see a second line towards where the back of the bus will be, often marked with a wheelchair symbol. Your entire party should wait in that line. When a bus arrives, wheelchairs and scooters are first to board. The driver will have you get on via a ramp then strap down your scooter. They will then have your family board. Once the disability parties are on board, he will then have the regular guests board. The same thing happens in reverse when getting off. If for some reason the bus is too full or there’s multiple (3+) disability guests on the bus, find the Cast Member manning the bus stop. They can radio for a bus to come straight to you, instead of you having to wait for the next bus (and risking that one be full as well!).
I will say this, and it’s the only not so positive thing I will say. Be prepared to encounter lots of grumbling from regular guests. Since the scooters go where there are seats (the seats flip up), guests will be asked to move or stand. I have had people say not very nice things to me on Disney buses because they had to move and didn’t want to, especially if they had to stand. My suggestion is to keep spreading the magic and fairy dust- you don’t have to respond in kind. Also, give your bus driver some extra magic; they deal with a lot of grumpy gills all day long.
When it comes to using the scooters in the parks, you’ll need to keep flexibility and extra time needed at the top of your list. It will most likely take longer to get through the crowds with a scooter- from having to wait for large crowds to constantly braking for people darting in front of the scooter, you’ll rely heavily on patience too. That’s okay though- it allows you to enjoy the beauty of the parks even more!
When it comes to rides with scooters, there will be 3 possibilities: stay in your scooter for the ride or show, Transfer from your scooter to a Disney wheelchair to the ride itself, or transfer from your scooter. The scooter would then be stored in an area outside the ride. Be prepared to ask a cast member exactly where, because it’s not always right next to the ride.
Hopefully, these tips about using an ECV/Scooter at Disney helped you better understand the in and out of scootin’ around Disney. Keep your eyes peeled for the next addition to the Disney series!
*Our Disney Trip: Dining, including with Food Disability
*Our Disney Trip: The Parks
*Our Disney Trip: Overview and final thoughts, recommendations, as well as tips and tricks
Is there something you’d like to know? I’m all EARS!
With having a child on the spectrum, visual guides- especially picture types- are a wonderful resource.
I knew I wanted to make or find a cool countdown calendar that could be use with Caleb. It had to be sturdy (almost 5 year olds are rough), affordable (I’d rather spend money at Disney!), and an easy DIY project (I have enough to do before a trip without adding anything complicated). So I headed over to Pinterest.
Lo and behold, the Disney Parks Blog has an easy DIY countdown of its own! The graphics are adorable and the instructions were quick and easy to follow. I mean, numbers made to look like Disney characters?! How much cuter can you get?!
Here’s the link to the instructions on the Disney Parks Blog. If you scroll to the bottom, you’ll see that you can customize the countdown board any way you want. You can also search the tag #daystilldisney on both Instagram and Pinterest for more inspiration!
Here is the pdf of the numbers and banner. They have a set for both a regular Disney vacation as well as a Christmas themed set- feel free to get creative and mix up the numbers from each set! You’ll need to print as many numbers as you have for the double days and the single days separately. So if you have 100 days left, you’ll need to print 0-9 for the first column, 0-9 for the second column, and 0-9 for the third column. Because we had 20 days left when I made the board, I printed 0-2 for the first column and a full set of 0-9 for the second column. We are putting the numbers aside from the second column to reuse for the second week, but if you have a low countdown (30 and under) you could definitely print three full sets of numbers for the second column and allow your kids to rip off a number each night. We decided to save and reuse one set because a) environment and b) it builds the excitement that he can’t rip it off just yet.
If you can, print the numbers on cardstock. Regular paper is fine- it’s what we used- but with the amount of times you’ll be taking numbers on and off, the cardstock will hold up better, especially if you have a longer countdown.
I did ours on the cheap, and you can too! I stacked coupons for Michael’s, AC Moore, and Joann’s (who all accept competitor coupons) to save as much money as possible!
Numbers and banner printables from the Disney blog
Single hole punch
Scrapbook paper cutter
Selection of Disney stickers, sayings, or scrapbook embellishments
Optional: glue dots or some type of adhesive; superglue
Some things to note before starting the project:
When choosing your cork board, you want to choose a size depending on how many numbers columns you have. As you can see the 11×17 one worked perfectly for 2 columns, but would not work for 3 columns. Keep that in mind as you purchase your cork board. You can also get cork boards that are attached to dry erase boards, which would be a great option if you want to reuse the board. Again, it would need to have a large enough cork board.
The original Pinterest directions tell you to paint the cork board but unfortunately I did not have time to do that. After searching the hashtag #daystilldisney on instagram, I noticed many different tales on the countdown, including ones that used scrapbook paper as a background instead of painting the board. For me, this was not only a much easier option but a cheaper one as well since I only needed to buy one sheet, instead of purchasing all the paints and brushes. You can do Disney paper, plain paper, patterned paper, whatever you want. I used a thicker glitter scrapbook paper to help make it pop. With the 11×17, you will only need one paper, since the printable banner covers the rest of the cork board up just fine. If you have a bigger size board you may want to purchase more sheets, just in case. Also, be careful on what type of designs you choose; the numbers are detailed enough as it is and you want them to be visible, which may be difficult with a more busy background.
I used just flat brass thumbtacks to attach all the paper to the board, in case I wanted to reuse the board or change up the countdown look for future trips. This worked beautifully. However, if you want it more permanent or you don’t want the tacks showing, you can use glue dots or mounting tape, found in the scrapbooking section at the craft store. Make sure whatever you get is labeled permanent adhesive, as removable/adjustable adhesive won’t hold.
I bought the gang in the scrapbooking section (what we didn’t use will go in our trip scrapbook). One issue we had is they don’t have much adhesive on them. That works fine for pages in sleeves, but not for a vertical board and ESPECIALLY not on glitter paper. You can fix this by using a small drop of superglue on each sticker or you can use permanent glue dots. Both should hold just fine. We went the superglue route because we already had it and I didn’t want to purchase more supplies.
Cut out all your printable numbers and banner and place them aside.
Measure the width of inside of the board. Mark the measurements on your scrapbook paper and, using the paper cutter, cut to size.
Taking either your flat thumbtacks or your adhesive, mount the scrapbooking paper flush along the edge of the board.
If you have a bigger cork board and need more paper to cover up the board, keep repeating steps 2 and 3. Remember the board does not have to because completely covered as you have your banner to put on.
Position the printable Disney Vacation banner at the bottom of the board underneath the scrapbook paper and, using thumbtacks or adhesive, carefully mount the banner. There may be some overlap of the two papers, which is fine.
Taking two numbers and two large eye hooks, center them on the board as you’d like them. Mark where you’d like the hole on the paper to go with the screw end, and then remove numbers. Screw in the two eye hooks, being careful to watch they do not go through the back.
Using the marked numbers from step #6 as a guide, punch holes in each number. If you want to jazz it up, use a shaped hole punch. Once punched place your numbers on the eye hooks in order needed.
Have fun decorating the board with stickers and embellishments! Have fun with it- you can use gems, Washi or duck tape, permanent markers, stickers, scrapbook embellishments, iron on patches, Disney Pins, quotes, pictures from previous trips, anything that inspires excitement in you and your family!
Start the countdown and watch the excitement build until it’s time to leave for Disney!
As you can see, it’s super easy! And there’s multiple other ideas out there using these printables if you search the hashtag #daystilldisney. I saw people use clothespins and fabric, magnets, shadow boxes instead of cork boards, and so much more! If you use your imagination I’m sure you have a blast making and using this- after all, isn’t that what Disney is all about?!
I’ll be doing a special series the next few weeks as my family gears up for our Disney World trip! I’ll be doing posts on the following topics:
*Disabled at Disney
*Why we joined the Disney Vacation Club
*Packing for Disney
*DIY Disney Countdown Calendar
*Our Disney Trip: flying with a disability
*Our Disney Trip: Lodging
*Our Disney Trip: Dining, including with Food Disability
*Our Disney Trip: The Parks
*Our Disney Trip: Overview and final thoughts, recommendations, as well as tips and tricks
Is there something you’d like to know? I’m all EARS!
If you know me in person, you know my family and Myself are HUGE Disney fanatics. It’s an obsession that I don’t mind having; one that I’d rather see my kids and husband have over some of the other seedier obsessions out there. It’s something we as a family can connect over. And in today’s society, that’s more important than ever.
I went to Disney for the first time when I was 13, in 7th grade. We don’t speak of that vacation; it’s the one where the day we left (our family of 4 and my aunt, uncle, and 2 cousins) was the day my parent’s divorce was finalized. Yeah, we aptly have nicknamed it the vacation from Hell. Luckily, it didn’t deter me from loving all things Mickey, and I returned in 10th grade, this time for a high school band and chorus trip. Yup, I fell deeper down the White Rabbit hole.
When I met Brian, he had never been. I was convinced his parents didn’t love him growing up (kidding, kidding! Love you Mom!). So I somehow, with my superpowers of persuasion, convinced him that Disney World was the place to go for our honeymoon in 2010. And I was right- he fell head over Disney Princess heels for the Land of The Mouse. We stayed at Port Orleans French Quarter that trip. He was almost giddy about it! We returned again at Christmas 2012, staying at Coronado Springs (not my first recommendation; I’d go with French Quarter in a heartbeat).
Now, let me take a step back and explain why Disney is so near and dear to me, especially after the 2010 and 2012 trips.
Disney does Accessibility and Disability Services RIGHT. Friends, when I’m at Disney World, I feel normal. I feel non-judged, I feel accepted, I feel relaxed, feel at home. They accommodate both physical and developmental disabilities beautifully. They understand that everyone deserves the chance to experience the wonder and magic. But it’s not just the parks and Cast Members (as employees are called). The guests totally understand as well.
It is best exemplified in what happened to me in 2012. I was in my wheelchair at the time, with Brian pushing me. My chair is a custom chair, and bright magenta pink. As I was looking in a shop at Hollywood Studios, a girl of about 9-10 came up to look beside me. She saw my chair and exclaimed, “If I ever need a wheelchair, I’m getting a bright pink one too! That’s so COOL!” She was giddy over the pink. Not my disability, and certainly not scared of my chair.
Then there’s what happened with Mickey. Yup, the head Mouse. We waited in line at the Animation Academy to meet Sorcerer Mickey. When Mickey saw me in my chair, instead of waiting at his post, he walked over and insisted on not only helping me out of my chair, but that I use his arm for support instead of my cane. He supported me the whole time, and once done, escorted me back to my chair. Instead of just leaving, he waited until I was situated and buckled in before taking and patting my hand as a goodbye. Did we take up a bit more time, yes. But no one grumbled and the fact that Disney and Mickey himself made me feel loved… I felt so accepted and loved at that point in time. Disney would forever be my home.
Disney offers guests with disabilities not only lodging accommodations (including items like shower stools!), but they have an accessibility pass called Disability Access Service Pass or DAS Pass. Below are some links that explain the Pass in greater detail. It was revamped in 2013, so if you went before then you might want to refamiliarize yourself with the DAS Pass.
(It is important to note that Disney does not guarantee a DAS Pass for anyone. The best way to obtain one is to explain why waiting in line is difficult for you. While it is not allowed for Cast Members to ask for a doctor’s note, you are allowed to have one on hand and present it to them of your own free will to help aid them in making a decision about approval. With the new revamped version, having mobility issues does not mean you will be allotted a pass. There are many who are denied a pass at one park only to be given it at another. If you feel you need more assistance than the Cast Member helping you can give you, please ask to speak to a supervisor, nicely and kindly- it’s still Disney, after all.)
There’s multiple reasons I suggest getting a DAS Pass for those with Chronic Pain Diseases like RSD. For me, it’s about the line waiting, even with a scooter. In the past, while waiting in lines such as the ones at Disney, I have been accidentally hit or knocked into by a kid who didn’t mean it. It still sent me to the hospital because they either kicked or hit my affected arm or leg. The scooter doesn’t preclude that from happening. In addition, the RSD affects my stomach and digestive system in the forms of GERD and Gastroparesis. It’s makes the need of readily accessible bathrooms pretty important. Finally, with the RSD I’m on meds that make me sweat quite a bit and because of that I get dehydrated faster and shouldn’t stand out in the sun. Unfortunately, there are rides where the lines do not have much shade at all. In addition, with me being on the Autism Spectrum, lines like that cause me a great deal of anxiety.
We will also be getting a DAS Pass for Caleb since he’s on the Autism Spectrum. Not only will waiting in long lines with nothing to really do cause epic tantrums, but many of the rides have loud audio in the lines and Caleb can’t deal with that. Auditory Sensory Issues are one of our biggest areas of concern in planning this trip; we will have 2 pairs of ear muffs as well as noise canceling headphones, but it still creates a problem. While he needs to learn to wait his turn, alternative ways of waiting really are best at his young age. This way, it gives him freedom of movement, less confinement, and less sensory set offs. The last thing I want to do is have Caleb become afraid of Disney because he has a bad experience. This is just one example of those areas where I am his biggest advocate in finding him the right accommodations. Because he deserves to enjoy the magic just like typical children do.
I’m excited to share with you all this journey to Disney and blog series; if you have thoughts, questions, or tips, please leave them- you never know who they might help!
If you missed the first part to the story, you can catch up here.
I followed doctor’s orders and took a few days off to rest. Since I couldn’t exactly return to Barn Duty on crutches, I was given a desk job at the front office of the park until my ankle healed enough that I could go back with the horses.
Everything was as it is expected to be with a severe sprain. Bruising, swelling, pain, tenderness, weakness. Except… it wasn’t. Something wasn’t right. I did exactly what I was instructed to do- ice, wrap, elevate, take Advil, don’t use it, on and on. And yet it didn’t get better. In fact, it got worse. Much worse. The bruising developed into deep purple mottling that covered my entire ankle. The swelling didn’t go down no matter how much I elevated. And the pain.
There are no words to describe the type of pain that comes with this disease. The best way I can describe it is imagine that someone has cut you open and drained your blood, replacing it with lighter fluid. They light it on fire then sew you back up. They then pour said lighter fluid all over the outside and light that on fire. Finally, they take a red hot dagger from the fire and stab you repeatedly, over and over, relentless and never stopping. That’s the type of pain that developed. I still now can barely pull my socks on- and that was with many, many years while attempting to do so.
All this while, I’m seeing Occupational Health. They send me to PT; I complete it, barely, and only with the help of my old swim coach who is a PT. We are several months out from the injury- why isn’t it healing? Scratching their heads, they refer me to a foot & ankle specialist. Which Worker’s Compensation (WC) promptly denies. Multiple times.
Finally, 5 months out from the injury, the county WC approves a visit with the foot & ankle specialist. By this point, I’m not working because they couldn’t keep me on as a desk worker since I was hired as a barn worker, so they let me go. School is burdensome as I’m still on crutches. I just wanted it to be over.
That day I saw the foot & ankle specialist changed my life with one sentence. “There’s nothing I can do for you; you have Reflex Sympathetic Dystrophy”. I have what? My parents are nurses; they had never heard of it. And as the doctor sat there explaining what RSD was, I broke inside.
This would affect me for the rest of my days, and I’d be disabled for life.
(This is a bit of a longer post; I considered splitting it into 2 or more posts but felt in the end it needed to stay together given the topic. We are humbled by all the prayers offered on our behalf)
Our son Caleb is a happy, spunky 4 year old. He loves yogurt and cheese sticks, monster trucks and LEGOs, his family and friends. He’s always willing to be a big helper, and he has such a giving heart that thinks of others. He loves his preschool and attending church. He has a bunny lovey called Big Blue Baba that Grandma made him, and he adores his cat Gizmo.
He also, in the next few days, is going through testing to confirm our suspicions of Autism.
I’m sure right now there are 2 things running through your head. First, “oh wow, I’m so sorry, that’s terrible”. Second, “and there’s another one with the label; is Autism really a true diagnosis at this point in society or is just part of human nature? I mean geez, how many kids can be diagnosed with it?!” And there’s probably a third as well, if your child is a typical child, “I feel bad for thinking this, but I’m glad it’s not my kid.”
But God prepares us for what He knows is coming. And we know all His ways work together in the end for the good that comes in Christ.
Commit to the Lord whatever you do, and he will establish your plans. The Lord works out everything to its proper end- even the wicked for a day of disaster.
While it’s frustrating and tiring that Caleb is on the spectrum, we almost anticipated it. Why? Because I’m on the spectrum. I wasn’t diagnosed until about a year ago, but it’s been there all my life. I’m high functioning, but without resources when I was younger, I definitely developed quirks and habits to help me cope; some I still use today. Looking back, the things that even my own family teased and tormented me about were very obviously signs of more than just someone who was an oddball. But, well, my family would rather not have a diagnosis in order to have that oddball to pick on and make fun of, since you can’t/shouldn’t make fun of a diagnosis. So I adapted (with help, support, and encouragement from friends). Still, having the official diagnosis helps me cope mentally with those quirks (though it also upsets me, because I know it’s there and my mother didn’t care enough to really take a deeper look).
So when Caleb started showing signs about 6-8 months ago, we watched it closely. We started implementing little things that help support autistic people around the house. This is where the Lord prepared us.
Before I got sick, I was a student at the University of Delaware. After switching my major 5 billion times because I couldn’t decide what I wanted to do in life (well, I could- be a wife and mother- but that wasn’t acceptable to my mother and family, so I had to find a major and prepare for a career), I ended up a Women’s Studies major with a Disabilities Studies minor. I know, right? I ended up deciding I wanted to work with kids with cognitive disabilities after applying for an Applied Behavior Analysis or ABA home therapy assistant position with a local family l through my Disabilities Studies minor; I fell in love with that population, and I had a knack for working with them. I participated in the DFRC Blue-Gold Football Game as an Ambassador my junior and senior years in high school, and with their Hand in Hand Program my senior year; I had a buddy who was cognitively disabled and loved working with her. The Meadowood Program (the special education program in Red Clay School District in Delaware) had their classrooms at my high school and I spent time with them, and always had a blast. I had a patience with them that I didn’t have with typical kids; these kids may need correction but almost all the time when they are acting out, they don’t know any better and were not pushing my buttons purposefully. For some reason, that knowledge gave me the patience that even I didn’t know I had. When I finally settled on what I wanted to do though, special education, it was too late to switch my major to Special Education. Luckily the majority of my courses cross-listed with SpEd. Because of that, after working one summer as a substitute paraprofessional at The Brennen School (part of Delaware Autism Program), they offered me a job once I graduated and would send me back to get my Masters in Education (Autism). Unfortunately, Life and RSD intervened, and I ended up having to leave school that next semester. But the skills and knowledge I gained while working as a therapy assistant and as a para in the classroom would prove invaluable many years later when Caleb started having behaviors.
God directs our steps, most definitely.
Caleb was actually in Delaware’s Child Development Watch, which provides in home/daycare support for children under 3 for free through the state. Caleb was enrolled to receive Early Childhood Education (ECE) therapy; they also have OT, PT, and Speech therapy. ECE is a little of everything; think wide but shallow. He was in it from 1.5-2.5 years and then discharged. If I had felt it needed at the time, I could have continued with therapies through Child Find, which takes over at age 3 in those areas where the child needs support. Caleb didn’t have a major specific delay, just a mild across-the-board delay, and we felt that by the time he was discharged, he was caught up thanks to therapy and ear tubes placement. Looking back now, there were definitely little signs. Hindsight’s always 20/20.
He started to really show signs about 6-8 months ago. That’s when the auditory sensory issues started. Lord help us if we flushed the toilet without telling him first so he could cover his ears. Thank goodness I had a travel potty because for a time, he wouldn’t use public restrooms because of the hand dryers (that’s a bit better now; I still have to cover his ears and he still refuses to use them but he at least will use the bathroom). He would quiver in our arms during thunderstorms while covering his ears.
Then the screaming started. That high pitched, ear piercing scream that every Autism parent knows. The one they do if they are frustrated or upset, that they use instead of their words to tell you what’s going on. I’ll be honest- for a child who hates loud noises, I’m not sure how he can stand his own scream!
At his 4th birthday checkup, I mentioned to the Physician’s Assistant about these things as well as I’d noticed he was still doing toe walking despite having worked on it in Child Watch therapy and using flat bottom shoes like Converses the ECE therapist had recommended. She gave us a script for OT. But then I started to really hone in on those other “quirks”.
Things like the clinginess when he’s dropped off at school. He’s been attending daycare since 18 months, and his current preschool for over 2 years. And every morning, you can expect tears, tantrums, and teachers having to coax him away with something so Brian and I can hurry out the door without him seeing. Every day.
Things like his sleeping. As a baby, he slept wonderfully. He never climbed out of his crib, even when we took the side off. We had to wake him up for feeds as an infant. But ever since summer 2016, bedtime and sleep have been a never ending, dog tired fight. He won’t go to sleep in his bed without someone staying with him until he falls asleep. And he’s up every night at least twice, crying for us. its only gotten worse as time has passed. We have tried every aid we can think of- sound machines, dark and monster spray, EOs, loveys to protect him, a soft desk lamp, a night light, a special light from IKEA (not a full light, but not a night night) mounted next to his bed that he can control, special flashlights, switching from the toddler bed to a twin bed and letting him pick his bedding, an OK to Wake clock, prizes if he stays in there the whole night, and more. We even were given one of those Privacy Pop bed tents to try to see if it will make difference. The past few weeks here have been the worst. He was up SEVEN times the other night. It didn’t occurred to me that this might be Autism related until he started doing other things.
He does not have OCD type tendencies about things like lining up toys, but if he is playing with something, and has it exactly his way, you better pray for mercy if you mess up anything he had a certain way. He’s also much neater than normal peers, always tidying up and never saying no when you ask for help cleaning up. At school he cleans up other kids stuff. While he’s popular at school (not sure how that happened since neither Brian nor I were popular), he definitely is introverted and a loner. He’s much happier sitting on the floor of the kitchen reading a book while his teacher makes lunch then playing with others; he loves to play with individual toys like Magnadoodle instead of joining the other kids. By the time 3:30/4P hits, he is overwhelmed and just wants one of us to come get him (this is when he will often sit with the teacher and do individual type toys). More than likely, he will have melt downs at home purely because he’s been holding himself together all day, and just can’t anymore.
At home, we noticed several other things. There is definitely a touch sensory something going on- he has issues with the toe in his socks, brief type underwear, certain shoes and clothes; when he’s watching tv or doing something where he’s seated, he almost always is rocking or bouncing his body or pushing against something for the pressure. He also does the hand flapping when overstimulated, angry or excited. On days he is home and it’s raining, the little trampoline he got for Christmas is the biggest blessing to help him have something to do and a way to calm him down. He’s definitely experiencing some anxiety (which could be separate from the autism); he has a lot of unfounded fears, like of us leaving him at school for the night or fears of storms (he pulled up the weather map tonight and tried to tell us a storm was coming- he pointed to the radar map of Canada). He’s a kid who loves his routine and when it’s thrown off- he’s home sick, or we are on vacation, or it’s a holiday- he gets extremely overwhelmed because of not knowing what comes next, and will repeatedly ask what is coming next. He’s definitely behind a bit in speech still; he uses phrases like “last later” for “yesterday”, and “what’s that loud” for “what was that sound”. And there are even days where I have to ask him to repeat himself because I don’t understand. If he’s frustrated, upset, or angry and can’t verbalize it, he will do that high pitched scream that every Autism parent knows. He doesn’t respect personal space for non-family members and it takes frequent reminders to get him to notice. There are others, for sure, but these are the more prominent ones.
Now, let me say something. A couple things, in fact. First, I adore my child and I don’t care if he graduates with a full ride to medical school or an attendance certificate and is a bagger at the grocery store. I don’t care if he wants to play sports or do science Olympiad. I don’t care if he has to live in a group home or if he marries and has a family. As long as my child is happy, THAT. IS. ALL. THAT. MATTERS. God gave me this precious being to nurture and love, unconditionally. No conditions. No asterisks. No ifs, ands, or buts. I will still be the proud momma no matter what; I will still cry on his birthday and cuddle him no matter his age. I will do as God has called me to do, because my child deserves no less. Second, those who know me know that when I’m invested in something, I do not stop. Ever. Whether it’s advocating for RSD at the Delaware Legislature, or spreading awareness about babywearing, or educating people on my choice to wear a headcovering, I’m passionate (to a fault at times). Well, there’s nothing I’m more passionate about than my own child. I grew him underneath my heart; I was the first to say his name to him; I fought to be by his side in the NICU; there’s so many examples. This is no different. Well, maybe it is. Because it will be the biggest fight I ever do, advocating for my neurodiverse child. I will NEVER stop fighting to get my child the services and things he is entitled to by law, and beyond that.
I know I’m entering a world that’s very complicated, where there’s lots of grey areas, out of pocket costs, and sleepless nights. Where flexibility becomes the learned goal, and every little achievement that seems small to others is huge to us. Where teachers and paras and therapists are exhausted but devoted. Where politics unfortunately is a game you have to play sometimes in order to protect your child. Where bullies and monsters loom larger than life, but the innocence and goodness that is the essence of your child chases the darkness away and fills your reservoir with hope and light.
The next step is to have an evaluation done by the school district, called an Autism Diagnostic Observation Schedule or ADOS, a type of standardized evaluation, Wednesday. Then there will be an eligibility meeting to determine if he can attend the preschool, and an Individualized Education Program or IEP will be made (the preschool equivalent is called an Individualized Family Service Plan or IFSP). Once we have the report back, we can get the ball rolling on other things like Medicaid (Delaware has a program for children who are disabled), Respite funding, involvement in activities, therapy, and so forth. Hopefully we can get the Medicaid purely because if we have to do therapies out of pocket, I’m not sure we can afford it since our health insurance is, well, crappy.
I’m lucky. I have an amazing lady from Autism Delaware named Heidi Mizell in our family corner. An Autism mom herself, she is a family advocate with Autism Delaware and an endless supply of resources for us moms who are new to this (you know, the ones walking around with huge eyes and shaky hands, overwhelmed at all that’s been dropped in our laps). She cares. She will help guide us through this process, and help us get everything set up the way it needs to be so it benefits Caleb the best. I had known her before all this started from helping the family I had worked for as a therapy assistant. I never thought I would actually need her help. Again, the Lord directs our steps and paths.
After the Evaluation and Eligibility/IEP meeting, I’ll be doing a follow up post to this one with how it went and what the plan is.
Would you be willing to help our family out? Would you be willing to pray for us? Prayers for the evaluation and eligibility/IEP meeting; prayers for a smooth transition to the new school environment; prayers for those working and guiding and helping Caleb; and prayers for Brian, Caleb and myself as we start this arduous but inspiring trek that many other families have done before us and many will do after us. Feel free to add us to your church’s prayer list, and please know that we have deep gratitude for each prayer offered up.
We know that with God, all things work together for good. We cling fast to that as we struggle to see through the fog and see what that exact good is, never doubting that He holds every one of us in His hands, just like the children’s song says.
This saying can be applied to all aspects of Life and teaches us gratitude for what we do have. Yes, we’ve lost a lot- dreams, patience, time, tempers, and sleep. But what do we have? We have faith, and grace, and peace, joy, overall health, brain smarts, giggles, goofy songs, thoughtfulness, and unconditional love.
I know we will persevere through this; we always do. I’m thankful and blessed to have a husband who will help carry the burden between us, in laws that help whenever it’s needed, and close friends who support and uplift my spirits as well as love and dote upon my son like no other. In other words, we will be okay❤️
Family Photos December 2017 at Gibraltar Gardens; Wilmington, DE. Photos taken by Jenifer Fekete-Santo of JFS Photography Design.
Here’s part 2 to my headcovering story! If you missed part 1, you can read it here.
So I started watching YouTube videos, and clumsily wrapping scarves around my head. I realized how easy it truly was, tried different styles, fell in love with some styles and couldn’t stand other ones, learned how to accessorize with headbands and flower clips and brooches and dangly earrings, scoured thrift shops and bargain stores and sale racks for unique scarves and pretty baubles, and became more and more confident in both my tichel skills and myself as a whole.
One of my first wraps; I’ve improved a lot since then!
As I watched more and more YouTube tutorials and my fingers fumbled with scarves and pins, I found myself starting to do something every day. I found myself intentionally wrapping. As I wrap and weave the fabric over my head, I weave a prayer along with it. It may be for a friend going through a hard time, a current event in our world, my family, or even myself. As I would finish each wrap and along with it the prayer, I found myself feeling covered; covered by God, covered by my husband, covered by faith, covered by the angels, covered by peace and calm.
Wrapping/covering has also given me a constant reminder to live my life as a Christian. The literal weight of the wrap on my head reminds me that I live as a sign to others of Christ, as a sign to others of my husband, and as a sign to others as a mother. Now, I’m not saying I’m perfect. Ha. Far from it. I still curse and I still yell; I still mutter and I still stomp my feet. I still make mistakes in my behavior and it’s a constant learning process towards that meek and gentle spirit. Because ultimately that’s what my goal is- that meek and gentle spirit. But having the wrap on my head is a physical reminder of the spiritual changes I’m aiming towards. Brian will tell you that even he has noticed a change in me.
This is 2 days after surgery June 2017; you can see how far I came in just a few months!
I figured I would answer some frequent questions about my covering, because I do get these questions pretty often. I’ll also share some tips and secrets about wrapping that I love!
Q: what are some reasons people wrap?
A: people wrap for lots of reasons! Maybe it’s because of their faith; the Islam, Jewish, and Christian faiths all practice various forms of headcovering. Within Christianity, many denominations practice it- Anabaptists (Amish, Mennonite, Hutterites, Brethren), Catholics (they call it veiling), Torah Observant Christians, Nondenominational, some parts of Presbyterian… many use headcovering! Some people cover for health reasons where they lose their hair, like cancer or alopecia. And some use it as a comfort measure for when they are overstimulated or their sensory processing is overwhelmed. There are many reasons, not just faith, to cover!
Q: is that thing hot?
A: yes and no. It all depends on what type of scarf/fabric you wrap with! Pashminas in the summer aren’t exactly the coolest type of wrap, but rayon or linen or light cotton is not hot at all! It also depends on how much fabric is there as well; I try to use a shorter scarf in the summer, and not let tails hang down.
Q: Is that all your hair underneath?
A: ::chuckles:: no. Underneath the scarf, I wear what’s called a volumizer that I got from Wrapunzel. It’s a cap that has a velvet headband sewn to the front, and is made with a breathable knit material. Inside the cap is pillow stuffing, and you can remove or add stuffing based on how much volume you want. The velvet headband in the front helps to both grab your hair and your scarf so that the cap doesn’t slip off your head, and the scarf doesn’t slip off your cap. I usually will just put my hair in a low ponytail at the nape of my neck, and tuck my hair inside the cap.
I did a fancy two scarf zig zag for Lilly Prom (Brian’s Company party), and received so many complements!
Q: do you still do your hair?
A: yes, I still see a stylist (the benefits of your best friend being a hair stylist! Head over to her Instagram and give her some love!); I cut my hair and dye it and have fun with it. I take care of it; you just can’t see it! Though I do admit one secret: there are days when I haven’t washed my hair and either don’t have time or energy; in those cases, having a covering is awesome!
Q: where do you find scarves? Accessories?
A: you name it! Places like Marshall’s, TJMaxx, and Burlington Coat Factory are great for cheaper yet stylish options. Craft stores and 5 below, Lilly Pulitzer, Target/Walmart/Kmart, Forever 21, Primark, Wrapunzel, other tichel businesses like The Little Tichel Lady, other tichel wearers getting rid of their scarf stash… all of these locations are places where I have gotten scarves. I’ve even gotten some at our local mosque’s annual bazaar, since many Muslim women cover their hair too (called a hijabi). For accessories, thrift stores, Burlington, Amazon, Icing… pretty much anywhere that sells brooches, hair clips, and stretchy headbands is fair game! You can accessorize tichels in so many ways!
One of my favorite wraps I did for our family pictures Christmas 2017
Q: how did you learn that? Is it difficult?
A: YouTube! I watched so many YouTube videos to learn. And then I practiced! Yes, my arms got tired. Yes, it was sloppy looking at first. But I got better over time, and it became very easy. Now, if I need to rewrap in someplace like the car, I can easily do it! In terms of the actual scarves, some scarves make learning easier, while others I waited to use until I was more proficient. Silky type scarves have a tendency to be a bit more difficult to wrangle, so I stuck with thicker scarves that had more grip to them when I was first learning.
If you’ve ever wondered what it’s like to wear a tichel, or perhaps you are feeling the calling to cover your hair- whether it be for spiritual reasons, or cultural reasons, or medical reasons, or anxiety (there are many who wrap simply because it provides comfort and eases their anxiety!)- know that there are others who have gone down this road before you. Headcovering has become an extraordinary blessing in my life. I’m sure if you gave it a shot, you’d see the blessings in your life grow as well.
Have questions about wrapping or headcovering? Leave them down below and I’ll be happy to answer them!
I’ll admit- I’ve balked at starting my blog for one reason and one reason only. I have no idea how to actually start it! What exactly should I write for my first blog post? I feel like it’s the awkward first “hello” on a blind date.
With that said, I’m more of an organic storytelling gal. Instead of scheduling out stories so you “know me” before I start writing about life, I figured interspersing those past stories with current event posts would give you a fuller life picture.
I’m not sure how often I’ll post; at least once a week if not more. I’m trying to link my Instagram feed with my blog as well, so posts there show up here. I’m also trying to link my blog posts up with my Facebook page, so you’ll always be notified when I post (don’t like my page yet? Well whatcha waiting’ for?! Head over there now!).
If you have any ideas on different elements I can incorporate weekly, I’m all ears! I’ve heard of Wordless Wednesdays; do you have any other weekly themes that would be fun to participate in?!
With that said, consider this the introductory post on BLWSquared.com! I can’t wait to see where the rapid river of blogging online takes us- together!