Featured Blogger: Cary of About the Small Stuff

 

This weeks featured blogger is Cary of About the Small Stuff. Cary is the proud MoM of almost 3 year old twin boys, Daniel and Ben. The main focus of About the Small Stuff is Ben’s accomplishments and challenges that go along with Cerebral Palsy.

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When and why did you begin your blog?

I started my blog just a little over a year ago, in April 2009. The main reason I started my blog was to connect with other mom’s of children with special needs.

One of your twins, Ben, has Cerebral Palsy, when was this diagnosed?

Cerebral Palsy is a term used to describe a group of disorders affecting body movement and muscle co-ordination. These disorders occur due to damage to the brain which could occur during pregnancy and up to the 3rd year of life. My twins were born at 30 weeks gestation and sometime either before, during or directly after birth, Ben’s developing brain was damaged. A few days after birth, a head ultrasound showed that he had a Grade II brain bleed. At this time, we were told that this may or may not result in developmental delays for Ben.

Because the brain is such an amazing thing, Cerebral Palsy cannot be diagnosed based on brain damage alone. It’s not diagnosed usually until at least 6 months of age, when it becomes apparent that the child is not meeting their developmental milestones.

It became apparent to us that Ben was delayed developmentally around 6 months adjusted age. Unfortunately we were in the middle of a move home to Canada from New York when we realized this and it took a few months for us to get him in to see the right people.

In September 2008, a week after his 1st birthday, we saw a Pediatric Neurologist who finally diagnosed Ben with Spastic Diplegia Cerebral Palsy.

How do you handle twins that have different motor abilities?

I would say this is our biggest challenge that we face on a daily basis. It is also one of our biggest blessings. There are definitely things that we don’t do that we would do if we had two typically-developing children. Because it’s Ben’s gross motor abilities that are most affected, things like playgrounds and uneven surfaces are the biggest challenge for him. That doesn’t mean that we don’t go to playgrounds, but it definitely means that I don’t take them both to a playground on my own. Ben needs lots of help to play on a playground and that’s pretty much impossible to do while also watching Daniel.

I would say though that I am so grateful that Ben has a typically-developing sibling to watch and try to imitate. Because of Daniel, Ben wants to do all of the normal things that children do. For example, Ben would likely never think of jumping or climbing up on our couch. And if I only had him, it would not be something that I would think would be possible for him to do. But because Daniel does it, Ben wants to. So we started Ben off slowly. At first, I would put him up on the couch and let him crawl around and pull up on the back of the couch…all the while I would be watching and catching him if needed. As time progressed and his balance got better, it became apparent that he didn’t need me there anymore. He couldn’t climb up on the couch himself, but once up there he could maneouver pretty well and even get down on his own. Finally, he figured out how to climb up there all by himself. What a fantastic accomplishment! And all because his brother behaved like most two-year-olds and climbed up on the couch to jump on it.

How is Daniel with Ben?

Daniel is pretty awesome with Ben, but I don’t think that that is anything out of the ordinary…especially since they are twins and have a very unique relationship. At this stage, neither of them really realize that Ben is different than Daniel. The one thing that Daniel really does understand though is that it is much harder for Ben to go get a toy (especially one in a different room). Since we mostly have 2 of everything, Daniel will almost always bring back both toys when he goes off to get a toy for himself. One for him and one for Ben. So sweet.

I saw on your blog, About the Small Stuff, that Ben has started hippotherapy, can you explain what this is?

Hippotherapy is a form of physical, occupational and speech therapy in which a therapist uses the characteristic movements of a horse to provide carefully graded motor and sensory input. Adults and children with disabilities can improve their posture, muscle strength, coordination, balance, sensory/motor development as well as speech and language skills when hippotherapy is incorporated into a total care plan for a patient (source: www.wikipedia.com).

For Ben, this means a 45-minute riding lesson once a week on a very special pony named Cowboy! He absolutely loves it. Not only does he get to ride a pony (Ben loves animals), but it is so good for him. Because Ben doesn’t walk, his core muscles are quite weak. The movement of the pony mimics that of walking so by riding, he is strengthening his core muscles as well as working on balance and many other great things.

What are some of your favorite family activities?

Our family is a very typical family. Please don’t think that because of Ben’s CP that we don’t do all the normal family-oriented things that other families participate in. Although I wouldn’t say that my husband or I are very outdoorsy people, our favourite things to do tend to be outdoors. We love going for bike rides in our neighbourhood, going to the beach (if the weather cooperates), and hanging out with family and friends. The boys favourite things right now are definitely their bikes and throwing rocks in the water whether that be the ocean, a stream, or just a little mud puddle…oh, and they love splashing in the puddles!

If you had an extra hour of free time, just for yourself, each day, how would you spend it?

I’m actually very blessed that we can afford to have a full-time nanny even though I only work part-time. So there are many days when I get a free hour or two to myself. When this does happen, I will sometimes take a nap (usually much needed) or even just read a book. Lately, we’ve been pretty busy and I’ve had a harder time finding that extra time for myself. The one thing that my husband and I are trying to get off the ground is a charity to help other disabled children in our area. We’re still trying to figure out exactly what our area’s disabled children need most, but are currently leaning toward providing adaptive bicycles. My personal feeling is that ALL kids should have their own bike. Unfortunately, adaptive bikes are not considered medically-necessary so many disabled kids have to go without.

What question do you have for the families in our community?

We’ve just started potty-training. Daniel is really interested and doing very well, but Ben is showing little to no interest. Any tips for potty-training twins? What did you do when one was interested but the other not?

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Be sure to leave your answer to Cary’s question in the comment section and don’t forget to stop by About the Small Stuff to leave some bloggy love!

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4 comments

  1. Thanks for introducing us to Cary.

    Cary, I love your attitude. Every family is unique, and I love that, even though Ben's uniqueness might be a little more visible than other kids his age, you're able to show him to us as a person, not a sufferer of cerebral palsy. One of my daughters has a rare (cosmetic only) condition, and it's been wonderful to be surrounded by people who quite literally don't see it.

  2. Hi Cary! I admire your strength and attitude!
    To answer your question…one of my twins was way behind the other with potty training. When it was obvious that my boy twin had no interest, I just concentrated on my girl twin. Once he showed interest, I then concentrated on him. It went well b/c I made a point NOT to stress over it. He was trained at 3 instead of 2 like his sister, and slept in a pull-up until 4 instead of 3. No big deal and everyone was happy!
    Oh, and I also used Skittles or jelly beans as rewards, first for pee, then after they did that for awhile, they got it for pooping in the potty.
    Hope this helps! Good luck!

  3. Sadia – thank you so much for your comment. I am so glad that I've been able to show Ben as a person! And that you saw that!

    I truly believe that the twin-thing has forced us to treat Ben like his brother…and not a baby, just because he can't walk. What a blessing!

  4. Janet "Grammy" Harrold

    Hi Cary,

    Nice to see you featured here! You know that I don't have twins, but Hailey has C.P. and is the same age as Ben, a couple of the things that we are doing with Hailey: First, we taught her the sign for potty, so that she could let us know when she has to go (Hailey is non verbal) she very rarely shows us but has on occassion. Her mom just asks her if she has to go and then puts her on the potty. secondly, if she goes, she gets an M&M (she is so proud when she goes she actually wants to give her dada the m & m so he knows that she went) and the last thing she gets is a beautiful butterfly sticker to put on her chart…she loves to do this.
    I love that Daniel brings a toy for Ben, Besides having that twin bond, he is going to take care of his brother always, i just know it.

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