Saturday, October 29, 2011

Staying dry

I feel like there has been so much loss lately. My heart goes out to Dede and her family for the loss of her nephew Tommy. And although on a completely different scale, I've experienced a loss recently as well which you can read about on my personal blog here and here.

To lighten the mood (but certainly with no intention of glossing over the emotional struggles we are dealing with) I am going to write a post that will take us in a totally different direction. One that focuses on celebrating the little things - in this case, Aiden being 100% potty trained...even at night!

The ironic thing about this scenario is this: I worried that Aiden would never be potty trained. He showed zero interest and fought me every step of the way until finally it just clicked. And from that day on, he wore underwear (not a pull-up) all day and all night and woke up dry...while my older son Ethan,4, wears underwear during the day just fine but still wears a pull-up at night and wakes up soaked. Quite an achievement for Aiden to surpass his big brother in the potty-training department I must say!

I do want to clarify one thing here however. When I say Aiden wakes up dry in the morning, I am referring to the fact that he did not wet the bed. "Dry" is a term that should be used loosely, as he has always woken up with wet sheets from being a hot-natured little kid with Apert syndrome who sweats like it is going out of style. Oh the joys of hyperhydrosis.

But even wet sheets from sweat are a thing of the past thanks to the next best thing since sliced bread: Wicked Sheets. A friend from my college days started her own company making bed sheets that are made of the same moisture wicking material that athletic uniforms are made of. You know those silky soft golf shirts that help guys stay cool and dry on the greens? Take those shirts and turn them into sheets. That's Wicked Sheets. (Totally one of those "Why didn't I think of that" things, right?)
After seeing her product come across my Facebook feed, I immediately thought of Aiden and other kiddos with Apert syndrome who might deal with the same sweaty situation. My friend was gracious enough to send a set of sheets to Aiden and let me just tell you, he LOVES them. And, they don't even have Thomas the Train or Toy Story characters on them. They're just good ole' solid white sheets - crisp, clean and COOL...literally. The first night he slept on them, he woke up dry. He hadn't stripped off his shirt in the middle of the night or resorted to kicking off the covers. Perfection.
While I did receive the sheets for free (thank you Alli!), the opinions and choice to write about the sheets are 100% genuine. I wanted to share this with all my cranio friends who might know someone who sweats a lot due to their condition. Alli is doing wonderful things with her company - even working on getting her sheets into the hands of cancer patients who deal with terrible night sweats as a result of chemotherapy and other treatments.

If you're interested in learning more, or in purchasing a set of Wicked Sheets, visit You can also find Wicked Sheets on Facebook to follow the development and success of her venture. Be sure to let her know that Taryn sent you!

Thursday, October 27, 2011

Life & Loss

Tragedy struck our family last weekend when our 14-year old nephew unexpectedly passed away. It is the worst fear that all of us have as parents. There is no greater loss.

Tommy had autism, and, like many of our own kids, was often referred to as “special.” Although that word is the socially acceptable term for describing kids with various handicaps, I have never liked it and seldom use it. Kids like Tommy and my son, Peter, are indeed special, but I don’t feel that my other son and nieces/nephews are any less special. I would be equally devastated to lose any of them. Rather than special, I like to think of children like Peter and Tommy as difference makers. They leave an intense lasting impression, they deeply change the people who love and care for them, and they possess insight that is much wiser than their age.

Of the many amazing stories that were shared about Tommy this week, there is one that personally resonated with me. Tommy’s Grandpa would often take him out for breakfast at McDonald’s. They would always order exactly the same thing, although at various locations since they live in different states. On one visit, the cashier entered their order before they got up to the counter. Tommy’s Grandpa said, “We were here six months ago, and you still remember?” Of course she remembered. This did not surprise me.

I often have the same experience with Peter. People may first notice his facial difference, but they usually walk away remembering his sharp humor, his thoughtfulness, or his insightful remarks. This may be a result of his challenging life experiences, but I think there is more to it. I see compassion and enlightenment that comes from a place deep within. It’s the essence of who Peter is and how he lives his life. It is the soul of someone truly touched by a higher power. As his parent, I am fortunate to see this gift in action all the time. This week, for example, Peter removed his prosthetic ear and told me that he didn’t want to wear it for the funeral. He said, “I think Cousin Tommy would want me to be just who I am.” What a profound statement from someone so young. I was speechless.

I hate that Peter has to have so many surgeries, I hate that he has to endure stares in public, and I sometimes even hate how his needs have complicated my own life. We sometimes talk about how unfair all these things are, and how Peter wishes he wasn’t born with Goldenhar Syndrome. The overwhelming positive outcome from all his issues, though, is the far reaching influence he has had on so many lives. Families like ours, who face so many emotional and scary challenges with our children, have a different appreciation of life. Although we all cope individually, we are connected on a very deep level. I don’t believe that connection and relationship ever ends, even when the worst happens and we have to look toward a different future. Anyone who interacted with Tommy, even that cashier at McDonald’s, was changed for the better.

“Be the change you want to see in the world.” Mahatma Gandhi

Monday, October 17, 2011

Sometimes common sense does prevail!

Have you all heard me celebrating this morning?

Our district just informed me that they are reversing their decision to remove assistive technology from non-public schools. We have been given approval to meet and revise Peter’s service plan and to include a request for an FM system. I am hopeful that our intermediate school district will then provide the unit as they did previously. Our district is once again doing the right thing by providing both public and non-public students with equitable services.

Thanks to all the blog readers, family, and friends who have supported me with this challenge.

Saturday, October 15, 2011

What has happened to common sense?

After three weeks and three letters, I finally got a response from our school district. The response was basically, “our recollection of the meeting discussion is different from yours. We will get back to you with an answer next week.” Encouraging, isn’t it?

My investigation into why assistive technology was removed from all private schools in our district has caused me to be even more disgusted by the decisions these so called educators make. I’ve discovered this isn’t even really about the budget, which is at least something I can understand. No, this is simply about how our district has chosen to interpret their legal requirements and responsibilities to non-public students. Our district, I am sad to say, decided that, although they are still required to provide “services” under the law, they are not required to provide “accommodations”. So, Peter still meets weekly with a hearing consultant but does not receive the FM system that actually helps him hear his teacher. Regardless of how the law is interpreted, I simply don’t understand how you can justify providing one without the other. Whatever happened to common sense? Or, more importantly, doing what is right?

I was told that the district does not pay one dime for the FM unit. They only have to request the accommodation based on what is in a student’s IEP or, for non-public students, a Service Plan. Our district will not allow assistive technology requests to be included in a Service Plan. I know this because I argued about it for over an hour last year at Peter’s IEP meeting. The entire thought process behind this decision coupled with constant finger pointing between the local and intermediate school district is repulsive to me. The FM unit Peter used for the last three years is sitting in an office at our intermediate school only because our local district determined that they are not obligated to request it. Legal or not, this is quite simply the wrong decision. All children deserve equitable services as determined under IDEA law, not just those in public schools.

This doesn’t only happen in the school system. As parents of medically complex children, we face similar ridiculous decisions made by insurance companies. They often decide that a surgery needed to improve our child’s airway or enable him to swallow safely is cosmetic and, therefore, not covered. I have also encountered instances where insurance will cover reconstructive surgery but not a prosthetic that would actually be cheaper.

We have to challenge these policies. As parents, we must educate people who establish laws that affect our children. We must hold them accountable for how their decisions impact the lives of our children.