School preparations

With 5 kids, school preparations have to start early. This year, I will have a junior in HS who is taking college classes part time on campus. I will also have a 4th, 3rd, kindergartener and an all day preschooler.

I've especially thought about Afua and how to make a smooth transition for her this year. She will have the same teacher as last year, but new classmates. Her class also interacts with another half day preschool class and they do things like show and tell together. So here are some ways I give my non-verbal child a voice:

1. Photobook

Source

I made a small photobook about our summer adventures. It will go with her to school and can stay there a few weeks as she meets new therapists or support staff. It can also help break down barriers with other students who can see pictures of our Disney World trip, swimming, blowing bubbles or playing with siblings.


2. Make the medical stuff look like non-medical stuff

Source

 

 

Afua has a wheelchair, leg braces, a new body suit (that is great, btw) and many other outward signs that she is different. But when possible, I try to get her non-medical looking things that still do a great job. Like these shoes by Plae, that are great with AFOs but are regular looking shoes. Or sometimes a shirt with a familiar character sparks a conversation with another child. Kids are naturally curious and that is fine. My focus is on the things we can make look more typical and we love pink sparkly things here anyway:)

3. Communication

We have expanded Afua's sign language over the summer. I want her teacher and aide to know all her signs and there a few different ways we could do that. Some families take a chart like above and circle the signs their child knows in one color and the ones they can sign in another. As new signs are mastered, more can be circled.

I have been taking pictures of Afua's signs since hers are modified signs and at times look different. I hope to make a little book out of it since we will be using modified ASL as her primary communication.

4. Safety

I have many safety items on my Pinterest page. Medical alert necklaces, wrist bands or tattoos are all necessary tools for a non-verbal kiddo. yes, our school has all her information but in a medical emergency. I want things to be accessible. Especially after our cochlear implant surgery, Afua cannot have MRIs done without removing the magnet that is implanted. I have ordered a few different options that we will try over the first couple of weeks.


I would love to hear from other caregivers of kids who are non-verbal: what do you do to prepare you kiddos for school?

Family Photo Session

After months of medical stuff and a long cold winter, I was finally ready to have our family picture taken. Since we don't do this often, I knew I wanted to find someone special to capture the various personalities in our family. With Afua using a wheelchair, we needed a spot that was accessible. With our various skin tones, the lighting needed to feature all children equally. And the person needed to have the patience to keep up with our energy, melt downs and mealtimes. Tall order, I know.

I found the perfect person for the task, but as we approached our location, it was 48 degrees and raining. Our photographer suggested an indoor location and we went with it. The result? Great pictures and a fun day spent exploring the city and riding public transit.

In this picture, Afua is in her wheelchair but it is not the focus of the image. I love the urban setting, the movement of the train and the way Afua is looking up toward me. So often in pictures, children who use wheelchairs are put to the side but our photographer found a way to have her beauty shine in every picture. 

Her sweetness melts me. How did I get to be her Momma? There are days I feel so unequipped to the task, but she loves me just the same. 

At another transit stop, we found a cool bench and the cloudy day provided the perfect backdrop. All our kids were such troopers as they knew we would get back on the train and ride some more. 

At the same transit stop, there is a covered walkway. We took Afua out of her wheelchair and she loved seeing the raindrops fall on the glass. 

My spunky girl up front, holding onto her brother who wouldn't have it any other way. And no way is my oldest taller than me. Optical illusion. I was holding Afua because we had to lift her wheelchair on and off the train. Lesson in lack of accessibility....but Eric was a trooper doing the heavy lifting.

What a wonderful day and I look forward to seeing lots of other images from our fabulous photographer. I learned that having a family story-telling photo session is the best way to go!

Frustrations of a SN Momma

I try to keep things positive. Most of the time. But oh my goodness, the world of parenting a child with special needs can really be so frustrating at times.

Insurance companies can determine what my daughter needs. Like a chair according to Mr Insurance (that cost $$$$thousands, but that's a whole 'nother rant) is not necessary, because she has a wheelchair (that they didn't purchase, someone gave it to us). Who cares if the wheelchair is always in our garage or at school with her, never inside our house for many reasons. Or a bodysuit that would support her core muscles and allow her to walk, is not needed. Because it's "experimental". Even though we have tried it at therapy for months and it makes a HUGE difference.


Buy a swing for a baby and it's $20. Buy a slightly bigger and stronger swing for a child with low muscle tone and it's hundreds of dollars, if not more.

Buy a trike for a toddler and it's $20. Buy it for a 4ish year old girl who needs additional supports and it's $2500.

I get that equipment for Afua is expensive. But having her grow and develop without the opportunity to move will be much more expensive in the long run. 

Every mom who parents a child with medical needs or developmental delays just wants their child to have the best chance to grow and develop. We are mostly reasonable people who are not asking for the moon. We fill out form after form appealing to the common sense of someone in the insurance company, our therapists fight right with us filling out equal amounts of paperwork. We will not give up no matter how frustrating it gets (just in case my insurance company reads this, I WILL file every appeal possible)

When I reach the point of total frustration, this sweet face brings me right back. She is worth it. Every bit of the hassle.

Walking With Dinosaurs

It's hard to put into words how excited my family is  to see Walking With Dinosaurs. The video clips we have seen are awesome but I can only imagine  how much more spectacular it will be in person.

The show depicts the dinosaurs with almost cinematic realism. WALKING

WITH DINOSAURS THE ARENA SPECTACULAR has scenes of the interactions between

dinosaurs, how carnivorous dinosaurs evolved to walk on two legs, and how the herbivores

fended off their more agile predators.

The Christian Science Monitor said, “When the dinosaurs start pouring out onto the stage,

if you don’t have to stifle the natural flight response of any living breathing being, then

it’s your pulse that needs checking.” Newsweek called the show, "that rare entertainment

beast that parents and kids can enjoy together."

Walking With Dinosaurs returns to Quicken Loans Arena July 9th-13th. 

Buy your tickets to the Cleveland Show HERE

Opening Night Tickets start at $25

  Disclosure: In exchange for my time and efforts in attending shows and reporting my opinion within this blog, as well as keeping you advised of the latest discount offers, this show has provided me with complimentary tickets and opportunities to attend private pre-Show events. Even though I receive these benefits, I always give an opinion that is 100% mine.

the great bike giveaway

Afua is a girl on the move! She loves to be in her wheelchair or adaptive stroller. Better yet, she loves to crawl and is learning to walk.

So when I heard of The Great Bike Giveaway and a chance to win a Rifton tricycle for her, I had to enter.

Adaptive bikes are expensive. As in the $ thousands. Most have supportive seats with postural features and harnesses. The feet have special straps. A parent can push the bike or the child can propel.

I can just see Afua enjoy a bike like this while her sibling ride their bikes and scooters.

Would you take a moment and vote for Afua in the Great Bike Giveaway?