Services Archives - The Sweet and The Salty

Adaptive Bike Success (Round 2): How Our Son Got His Adaptive Bike

By Jody September 8, 2016

A couple of years ago we tried my son on an adaptive bike and it was a disaster.

He really did not like it and we were trying so hard to force him to love it. (You can read about that first experience here).

At that time he was also to small for the smallest size bike, and being a tad overzealous, we were still trying to find a way to get it to work for him.

Finally we came to the realization we just needed to stop, it wasn’t working for him, and we needed to give that dream up, for the time being.

Well, at the end of summer 2015, on a whim, we decided to try again. He had grown a few inches, and thanks to horse therapy, he had become a little more adventurous.

I am so glad we tried it again because that time he loved it!

How He Got His Adaptive Bike

We went through our local Ambucs chapter (click here and enter your zip code to find your local chapter) and they helped us to get him a bike.

Okay, well, actually, I need to rephrase that. What ended up happening was through them, our son was given a bike.

At the particular bike fitting day (more on that below) that we happened to attend on a whim, mind you, our local chapter had raised enough donations to provide a bike to everyone who had been fitted for a bike that day.

So amazing!

And the timing of it proved to be invaluable for us.

When the chapter representative called and asked us if we were interested in ordering a bike, I was prepared to tell her no.

We wanted one, but we had just found out our son needed open heart surgery and we couldn’t invest the time in fundraising right then.

That’s when she let me know about having enough donations to cover everyone’s bike and if we wanted one for our son, it was his.

Definitely one of the many definitive God moments I can pinpoint that we’ve had along this journey.

(One of our son’s (and ours) very very good friends gave him the bell you see him ringing in this picture. It’s perfect because he is able to ring it and it works on his fine motor skills while riding. He rings it when we’ve stopped and he wants to keep going and also as a signal he wants to go faster. (The bell can be found here*).)

How His Bike Came At The Right Time

My son walks daily in his walker. He loves walking and it provides so many benefits for him, (including helping him, and therefore us, get a better night’s sleep!). However after his surgery he couldn’t go in his walker for two months!

We didn’t know what we were going to do about getting him his exercise.

And then along came the gift of his adaptive bike.

We picked up his bike exactly two weeks before he had open heart surgery, just enough time for him to get used to riding it prior to his surgery and to keep him entertained while he was out of school and therapy those two weeks in preparation for surgery.

While he had to wait two months to get back in his walker, he was able to start riding his bike 4 weeks after surgery, just about the time he was itching to get active again.

Such perfect timing for him to get this bike, in so many ways.

Bike riding became his main source of exercise as he recovered. And it continues to be one of his favorite, most requested activities!

A couple of months ago he had the opportunity to ride with our Ambucs chapter in a local Grand Prix! It was such a fun family activity. There were about 15 or so other kids he rode with, all on adaptive bikes!

Here he is waiting to start racing.

They all got medals afterwards, even sister snagged herself one 🙂

Bike Fitting Day

So about the bike fitting day, the great thing about getting in contact with your local Ambucs chapter is that this is something that they most likely offer. That is how my son was able to try out the bikes and we could figure out what was the best one for him.

When we went to the bike fitting day there were all types and sizes of adaptive bikes. My son has one of the smallest sizes but they had bikes all the way up to adult sized to try.

I loved that there was such a wide range of bikes to try, ranging from bikes propelled by foot pedals to hand bikes and a combination of both.

We got a foot pedal bike that has a bar on the back so we can push and steer our son while he rides.

I am really glad we decided to try bike riding again with our son after our first rather disastrous time.

I’m learning with kids sometimes it is the right activity, but just not yet. If it’s something we know has the potential to be really good but it’s not working right then, we’re learning to wait a bit and try again.

For bike riding in particular, I’m so glad we waited when we did and then tried again when we did!

Find Your Local Ambucs Chapter and Get Involved

If you have a child (or know of a child) who would benefit from an adaptive bike, or you want to donate and help a child get their very own bike, click here to find your local Ambucs chapter.

Happy riding!

Let’s Talk: Have you ever had an experience where your child really disliked something only to love it a few years later? Have you benefited from the kindness and generosity of others? I’d love to hear your stories too!

***To whoever it was who donated for our son and so many other kids bikes that day, THANK YOU! We are forever grateful, our son’s adaptive bike has impacted him in so many incredible ways and we wouldn’t have been able to get him one without your help.***

(*This post contains an affiliate link. Read Disclosure Policy here.)

Today, I Cried Hard. And it Felt SO Good.

By Jody May 1, 2013

When I got the call today that the continuation of Champion’s feeding therapy had been denied, I cried really hard. I cried while the messenger told me the news, I cried while I left messages for his therapists, doctor, and insurance. I cried in my car driving home, and I cried while my husband was leaving for work.

I just cried, and it felt really really good to do.

Learning about the denial for Champion’s feeding therapy (which we are appealing) was what started me on my crying spree, but it wasn’t really the root.

I was crying for what feeding therapy means to our family and what the lack of it means as well.

Champion is fed by a tube going into his stomach, called a g-tube. He got it when he was 4 mos old, after his open heart surgery.

Right now he gets 12 g tube feeds a day, every single day. He is on a blenderized diet that we blend for him every single day, rain or shine.

As soon as he wakes up he’s attached to the tube and throughout the day he receives the 12 feeds, some water feeds and some food feeds to make up the 12. He’s pretty much attached to the tube the whole entire day.

In between 7:30pm and 8:30pm he falls asleep in my arms on the couch, where I sit with him, holding him upright until he finishes the last of his feeds around midnight, and then once I’ve held him upright for about 45 minutes after the feed is done, him and I lay down in what has become our bed and go to sleep.

I am up with him several times through the night, as he wakes up in discomfort from acid reflux. Husband is in what has become his bed in what has become his room.

This is our routine day in and day out and has been for over three years. Which also means it has been over three years since I have slept in the same bed with my husband.

I cried so hard today when the feeding therapy was denied.

Champion has always been in some type of feeding therapy through our state therapy program. It wasn’t till three months ago when he started this particular feeding therapy, in an acute hospital setting with a specialized feeding therapy program that is well-known for their success at getting kids off their gtubes, that we began to see real progress and had therapists working with Champion who truly believed with us that he could become an oral eater.

Seeing him make progress, be able to swallow and enjoy food, and have therapists who truly believed in his feeding ability made the therapy a dream for me, something I looked forward to taking him to twice a week.

And it gave me hope that I would get a full night’s sleep again, that I would sleep in the bed with my husband again, and that Champion would not spend all his days and half way into the night attached to a tube.

But now, for now, in a mess of insurance confusion and bureaucracy that therapy is gone. And just for a while today with it went my hopes for what life would be like without the tube, for us and for Champion.

It felt so good today to allow myself to just cry and not care who knew I was breaking down.

It felt good to taste the salty bitter tears I had been keeping inside, thinking keeping them there was somehow preserving me and making me stronger as I fight for the best for my Champion.

It felt good to have my crying heard by people who love and care about Champion and want to help him. It felt good to hear them say, “We hear your cries and we’re going to do what we can to help get this fixed.”

Crying didn’t get appeals written or services back in place. Crying won’t change the fact that tonight I’m still holding Champion upright late into the night, or that my husband and I haven’t slept in the same bed in literally years, or that as soon as morning comes Champion will be reattached to his tube.

Crying won’t change the fact that it will take a lot of work, time, and energy that I don’t have to get the services started again.

But crying did accomplish something today. And that is that it simply made me feel good.

Let’s Talk: Ever had a time where even though crying didn’t fix it, it just felt good?

Photo Credit: memekode,

We have entered the world of “IEP”

By Jody September 13, 2012

This week has been a different kind of week for us. Today was Champion’s first IEP. The days leading up to it felt consumed by the impending meeting, despite the fact that we were busy with so many other things. Knowing it was so close, it just sort of lurked in the back of my mind all week.

It was both a sweet experience and a salty experience. On one hand I was pleased with the assessments of Champion. I felt that they did a good job of capturing who he is and what his strengths are. I appreciated that my input was well reflected in the assessment report and that the numerous parent questionnaires I filled out were used and a lot of his scores were based on those.

We weren’t 100% thrilled with what was offered, however we did understand the school’s reasoning and really felt comfortable that they were willing to change things as needed and as Champion progressed. This was well reflected in the fact that it was put in this current IEP that another IEP would be held in about two months to visit some areas we were concerned about. This gives him a chance to get started (he’ll start in about a month), get acquainted with his new routine, with his teachers and classmates. Overall we feel okay with that portion.

The more salty part now. I don’t know if I will ever get used to all the advocacy in this life as mom to a child who definitely needs my voice to be heard. I am so grateful for all the services and all the professionals who have worked with him day to day thus far. Once we’re settled into a new service I’m usually pretty good to go.

I think though whenever there is a big change, a new start to a service or a transition that is made, it seems as though Champion becomes a subject that can be explained in black and white ~~on a~~ ~~sheet~~ in a pile of paperwork. I know its how everything is run these days and there are safeguards in place to protect him and the agency offering the service, but still he’s my son.

When it comes down to it, it’s not really this particular experience with his IEP that is bringing on these feelings, because it really was not the dreadful experience I was concerned it would be at all. And I really felt that the team cares about Champion and that they have a genuine interest in him. I think it just an accumulation of experiences these past few years that has caused me to dread all the assessments, plans, goals, measurements, progress reports, and everything else that comes along with it all.

So to wrap it up, all in all the first IEP wasn’t too bad, we survived and I feel Champion will benefit from the services he’ll receive at school and the support that will be provided. I am really glad that it will all be reevaluated rather soon from his starting school.

Now about how I feel about him starting school…I will definitely be hitting the keyboard with those feelings in the coming month.

(photo credit)

Any tips, ideas, suggestions, or experiences regarding IEPs? Please share in the comments!