Parenting Archives - Page 3 of 4 - The Sweet and The Salty

Adaptive Bike: Yes! {Or Maybe Not}

By Jody July 31, 2013

The sun shone brilliantly as its rays danced warmly across our skin.

A soft breeze gently blew the fresh fragrance of fully bloomed flowers our way, bringing the delightful scent to our attention. The hum of children joyfully playing caressed our ears, evidence of the happiness around us.

We looked lovingly at each other as Champion eagerly awaited his turn, excitement mounting in us all as his opportunity to fulfill this childhood dream danced before us. The excitement in the air crescendoed as it became his turn.

We watched eagerly, wrought with anticipation as Champion gripped the handlebars and took off pedaling, joy radiating from his face as he deftly maneuvered around obstacles, peals of laughter coming from him and all of us as we watched him in triumph.

And…Cut.

Here’s what really happened.

This past Saturday we had the awesome opportunity to have Champion try out an adaptive bike. We had heard that another family had put together an event for families to come demo bikes.

I thought, “How awesome, that sounds like a lot of fun”.

Normally I would have said no since it was last minute but since I’m working on throwing off discouragement and getting out and about more, and since we recently decluttered and organized, making getting out and about easier, I eagerly called and set up a time for us to stop by and have Champion give a bike a try.

We woke up early that morning, took Champion to an appointment to get his braces adjusted and then headed to the park for the event. We had a great time interacting with and meeting some amazing families as we waited for Champion’s turn.

We were already brainstorming how we could creatively finance the purchase of one of the bikes because we just knew he was going to love it.

Finally his turn came and we eagerly set him on the bike, anticipating the fun he was going to have riding around.

He instantly started crying.

And not just whimpering a little bit, but full on crocodile tears with screams overpowering the sound of kids playing in the playground next to us.

My husband and I started clapping for him and cheering him on, telling him he could do it, that it was fun. The other parents took their cue from us and cheered him on too.

adaptive bike, special needs

We tried him on three different bikes all with the same reaction.

We tried with braces and without braces. We tried pushing him from behind, forcing his legs to pedal. We held his hands to the handle bars with our hands over his, forcing him to hold on. We used styrofoam between his legs, forcing them open thinking that would make him more comfortable.

And then finally, we stopped.

It dawned on us that this was something that was supposed to be fun for him, something we wanted him to enjoy, and he clearly wasn’t and he was trying to let us know but we weren’t listening.

We’ve grown so accustomed to forcing him to do things from years of therapy that we had trouble recognizing that we were trying to force him to enjoy something that he just wasn’t.

We took him off the bike and let the vendor know we weren’t interested at this time. We left with a quote and the knowledge that he was actually a couple of inches to small for even the smallest of the bikes so it wouldn’t have worked anyway.

But we also left with the knowledge that we really need to learn to listen to Champion.

We were projecting onto him what would be enjoyable for us as parents to watch him do, and not taking into account how challenging it would be for him. Because of course what child doesn’t enjoy riding a bike? Never mind the fact this was his first time ever even seeing one.

We were so busy trying to make the experience like the scene at the beginning of this post that it took awhile for us to grasp the fact that reality just wasn’t lining up with our vision and that that was okay. And that us trying to make it that way wasn’t the way to go.

So for now we’re holding off on the adaptive bike. Its definitely something we want to explore for him in the future when he’s the right size and when he shows an interest in it.

But for now we learned a good lesson and we’re going to work on finding recreational activities that he enjoys and looks forward to doing.

I think he thinks that’s a good idea.

Let’s Talk: Any similar situations? How do you handle it when reality doesn’t line up with your vision of something?

Linked with: Pour Your Heart Out, Special Needs Blogger Weekend Link Up

Refusing Discouragement and Choosing Life With A Cherry On Top

By Jody July 17, 2013

For a good portion of Champion’s life, I’ve allowed discouragement to reign when it comes to getting out and enjoying life with him.

It’s a lot of work to get places with him (Meghan gave a very good picture of what its like here) and sleep deprivation has always been my go to excuse.

The past few weeks though sleep has been getting better around here, which means I have more energy to actually do fun things, things outside of going to therapies and doctor appointments.

For a long time now I’ve told myself that once I started getting more sleep we’d go enjoy life a bit more. Well now that sleep has somewhat returned to our house, I still find myself making excuses.

For too long I’ve been stuck in this place with a discouraged mindset.

Discouraged by Champion’s diagnosis, discouraged by how hard it is to go places with him, discouraged by not having very many friends to enjoy life with (somewhat self-inflicted isolation has been happening here). I’ve been living discouraged by whatever excuse I can come up with at that moment, as I continually decide to let life pass right on by.

Then last week Paula left this comment on my post about special needs parenting being hard. And I couldn’t get these five words of hers out of my head, “I refuse to feel guilty.”

Those words stuck with me. The more that I mulled them over, the more I began to hear them as “I refuse to be discouraged” , the thing that has been holding me back, the thing I need to refuse.

I need to refuse to continue to allow my view of Champion’s diagnosis and the very real limitations that are a part of our lives to dominate and deflate our family’s ability to have fun. I need to refuse to allow discouragement to steal Champion’s childhood from him, and from me. I need to refuse to allow discouragement about the energy and effort having a little fun will drain and take from me to be the deciding factor in my decisions to not participate fully in life.

I need to refuse discouragement.

So this is my new resolve: I refuse to be discouraged.

We will have fun, enjoy life, and get out and about in spite of. We will make good memories together as a family. We will not let life pass us by.

Sure it might take a good amount of effort to get going. Sure, its hard to come out of isolation and build new friendships. Sure it’s easier for me to keep coming up with excuses as to why we can’t than it is to just go and do.

But I’m ready. I’m ready to refuse discouragement, to cast it down every single day till refusing it becomes a part of me, just like deciding to accept discouragement made it a part of me over the last few years.

I’m ready to get out and really enjoy life with this beautiful son that I’ve been incredibly blessed to mother.

This past Sunday evening we had our first successful, unplanned, spontaneous outing as a family. Champion was on a break from his feeding so we jumped in the car and got a yummy decadent treat of frozen yogurt. It was really fun and invigorating I must say.

Even though it was just a trip to get some yogurt, it felt like more than that. It felt like it was the beginning of us throwing off the weight of discouragement that we have been allowing to rule us for so long and instead we were saying yes to enjoying life.

(I really liked this sign and wanted to fit the cherry on top concept in some way so I tried, but this last line is all I could do 🙂 )

So here’s to refusing discouragement and instead choosing life with all the sweetness of a cherry on top!

Let’s Talk: What thoughts, attitudes etc do you find yourself needing to refuse? How have you dealt with discouragement?

Linking up with: Pour Your Heart Out

Special Needs Parenting Is Hard, and Its Ok to Say So

By Jody July 1, 2013

I am exhausted. I am weary. I am tired.

Champion is a couple of months shy of turning four years old.

It has been four years since I have gotten a full, uninterrupted nights sleep. Its been four years since I’ve gotten to lay down before midnight. Its been four years since I’ve gotten more than a few hours of sleep at a time.

I am so very tired.

Parenting a child with special needs is challenging stuff.

It is hard to explain to others who aren’t in it the nuances that occur that disrupt almost every aspect of life.

It’s hard to explain to family and friends how difficult it is to go without sleep for this long and still try to be very present for an inquisitive almost four-year old who needs me to do and be everything for him. I am an extension of his hands, his feet, his legs. I am his voice.

If I didn’t feed him he wouldn’t be able to eat. If I didn’t get him out of bed he wouldn’t be able to get up. Right now, as things stand, if I don’t do something for him, there’s no way he could do it on his own.

Day in and day out I, along with countless other parents of children with special needs who are doing the same for their children, am my son’s everything.

It is bone chillingly exhausting.

Yes there are many many many beautiful rewarding moments as Champion’s mom. Just as being his mom has exhausted me to my core, being his mom has also changed me and my view of life for the better at the core.

Being Champion’s mom has defined me and refined me as a person more than any other experience. I could go on and on about how much being his mom is a blessing and a gift.

However, and this is a big however, as much as a gift it is being a parent to a child with special needs, if not careful, this role can become dangerously draining and it needs to be okay to talk openly and honestly about how challenging it is.

Awhile ago I participated in a small group bible study at a church. It was a very good small group where we were able to talk and share about the challenges we were facing in life. I really enjoyed the group and it turned out to be very therapeutic.

However, at the beginning when I began sharing about Champion and some of the harder things I face as his mom, one of the other women responded and said “Yeah but isn’t he just a blessing and aren’t you learning so much as his mom?”

And the answer to that question is yes, he is. Yes, the majority of parents who have a child with special needs would say that their child has changed them for the better, that their child teaches them about life and love and that they are blessings.

But, with that, parents of children with special needs need to be able to express and be understood that It. Is. Not. Easy. And that when we talk about how uneasy it is, that we are not downing our child, that we’re not ungrateful to be their parent, and that we’re not unhappy with the child we’ve been blessed with.

We are simply saying: This is hard, I need someone to understand that, and I need help.

Let’s Talk: What situations do you find yourself in that are hard to articulate to others how much of a challenge it is? How do you handle expressing to others that you need help? Is it easy or difficult for you to ask for help?

Photo Credit: La Melodie

Linked at : Pour Your Heart Out, Fellowship Fridays, Love That Max: Special Needs Blogger LinkUp