Friday, December 23, 2011

The Magic of the Season

Now that the kids are out of school for Christmas break, we have finally been able to have some fun family time together. We’ve built a Lego set, went to the movies, read books, did some shopping, and have enjoyed simply being at home. We are always so rushed with after-school activities, dinner, homework, and weekend commitments, that I especially appreciate this break. It is rare that we have “free time” to do anything more than what must get done—making lunches, studying for tests, finishing school projects, being on time for appointments, etc. There is absolutely never enough time to get everything done!

I know that Peter, in particular, enjoys his freedom at home. It has always been a haven of comfort after surgeries and hospitalizations. It’s where he hangs out with his brother, reads, plays video games, and watches movies. No white coats or needles allowed! It’s also a relatively quiet environment where he isn’t subjected to a lot of background noise, which is irritating due to his unilateral hearing.

After Peter was born, we began our Christmas tradition of being "home for the holidays”. Thanksgiving is celebrated with my husband’s family, and we visit my relatives for a weekend before Christmas. On Christmas Eve and Christmas Day we go into hibernation. Usually, we are fortunate to have grandparents come to stay and share in our quiet holiday together. Christmas is the one day every year that I try to do absolutely nothing but enjoy my family and give thanks for all the blessings that we have in our lives.

We have celebrated Christmas with Peter in the hospital. We have opened presents when Peter was sick. And, we have celebrated it with Peter either recovering from a surgery or knowing that one is just around the corner. Regardless of the location or circumstances, however, our Christmas has always been spent together. The boys are growing up quickly, and I know this won’t last forever. Since I can’t hit a pause button, I plan to really appreciate the magic that every holiday brings for us. The miracle of Christmas, for me, is the three amazing guys in my life. I love them so very much.

Whatever your beliefs and traditions, it is my hope that you can enjoy some peace and simply pause to appreciate the magic of the season.

Friday, December 9, 2011

Holiday Memories

Watching Peter have so much fun with his cousins at Thanksgiving this year made me so happy. It really reminded me of how grateful I was simply to be with family. When Peter was younger and so medically fragile, we avoided family gatherings. He seemed to inhale every sick germ through his trach, and the smallest sniffle would constantly put him in the hospital for respiratory distress. Being in large groups or out shopping simply was not worth the risk during those early years. Unfortunately, Peter’s first holidays were not all about cookies for Santa and trimming the tree. They were more about suction machines, oxygen tanks, and feeding pumps!

  • Peter’s first Christmas was spent in NICU. I do remember being very touched by the generosity of total strangers who filled a giant stocking with an amazing array of donated gifts, including many that were beautiful handmade blankets and sweaters.
  • Peter’s second Christmas (first at home) was celebrated with a sinus infection, antibiotics, and breathing treatments. We still had fun unwrapping presents amidst the constant need to suction his trach.
  • Peter’s third Christmas was a fun age where he was walking and understanding about Santa Claus. He was healthy, but I remember being pretty stressed over an upcoming jaw surgery that took us months to schedule. Consequently, we remained “homebound” in a massive effort to keep him healthy. Still, we enjoyed visits from immediate family and close friends.
  • Peter’s fourth Christmas was marked with jaw distraction, which was thankfully nearing an end toward the holiday. The distraction was his most difficult jaw procedure. He developed an infection and required I.V. antibiotics for several weeks. The appliance was removed in January, so we were very anxious to once again keep him healthy.
  • Peter’s fifth Christmas was his first “trach-free” holiday, which was definitely something to celebrate. It was also his first holiday celebrated with extended family and a new baby brother.

These are not the “Hallmark” memories you dream about when starting a family. They are, however, our first memories together. Those holidays shaped us into the family that we are today. We don’t take our health or our ability to be together for granted. The “good times” really are that much more special to us. Somehow, stressing out over finding the perfect present, decorating the house, and wanting everything to be just “perfect” does not seem very important. The holidays are a time for reflection, gratitude, and sharing. Let that be the foundation for your memories.

May your season be blessed with peace, joy, love, and, (most importantly) good health!

Wednesday, November 23, 2011

And just when I start to worry...

We decided to save the money (but not our sanity) and make the 16 hour drive back to Indiana and Kentucky for Thanksgiving. To our complete surprise, the boys were total angels without even so much as a tear or a squabble the entire way. How lucky are we?

I had carefully prepared several keep-busy activities - coloring books, a plethora of DVDs, etc. - all of which seemed to serve their purpose. The only times they even really talked were to say the two most dreaded sentences during a road trip: Are we there yet? and I have to go potty.

However there was one moment where I looked back at the boys and saw Aiden in deep thought staring out the window. A minute later he said "My friend at school said my hands are weird."

It's the first time he's ever mentioned anything of the sort. Perhaps the first time he really understood when someone pointed out his differences. My heart started to break, but then I put on my brave face.

"What did you say?" I prompted, trying to buy time to figure out how I was going to approach this.

But then, his response let me know that he could hold his own.

"I said 'My hands aren't weird. And I'm bigger than you.'"

Love that kid :)

Tuesday, November 22, 2011

Giving back...

Something that has been on my mind lately is how much I've benefitted as a result of “giving back” since Peter was born. When we are faced with life-altering challenges, those trials can be like a fork in the road. We can grow, learn, and become better people, or we can wallow in self-pity and become hopeless and depressing to be around. I’ve spent time in both places, but I eventually chose to take the more positive path.

Volunteering my time and skills is a huge blessing in my life. The professionals I have learned from, the parents I have helped, and the many friends I have made are just a few of the benefits I’ve received through volunteering. If you are looking for ideas, here are some activities I’ve been fortunate enough to participate in...

  • Parent Advisory Role – there are many opportunities to participate as a family advisor to hospitals or state legislative groups for children with special needs.
  • Family Faculty Programs – many hospitals are now inviting parents to speak to staff about their experiences. I have done this and have found it to be very rewarding.
  • Writing – sharing your story and experiences via a personal or professional blog, submission to a newsletter like the one CCA has, or submitting to a magazine.
  • Online Support Groups – there are many Yahoo! Groups you can become involved with. CCA moderates several groups to help craniofacial families stay in touch and share information. I’ve been involved with several groups for many years (Goldenhar, BAHA, Microtia/Atresia, Tube-Fed Kids). It is so easy to share a simple tip or advice with other parents via online groups. Social networking sites like Facebook and Twitter have also become easy venues to stay in touch and share information.
  • Fundraising – maybe you want to spread awareness within your community by organizing a fundraiser for CCA or your children’s hospital.
  • Education – speaking at your child’s school helps to spread awareness and acceptance for all children with disabilities. CCA has information about speaking at schools if you need some direction to get started. For me, speaking to Peter’s peers was an amazing and rewarding experience. I highly recommend it!

Maybe take some time as this year draws to a close to think of ways you might give back. Sharing your time, skills, or experiences is a wonderful gift to offer as well as a great example for your kids.

Happy Thanksgiving!

Friday, November 11, 2011

Why is the sky blue?

Earlier this week we were having a typical busy night of homework, dinner, and after-school activities when Peter says the following to me: “I understand that Jesus died for our sins so that we can have eternal life. But, why did God allow his Son to suffer so much?” I stopped in my after dinner cleanup chores, shook my head, and said, “What?” “Why did Jesus have to suffer?” He said again.

I was speechless. Peter has been asking a lot about heaven, which is not surprising since he just lost his cousin. Losing a loved one certainly makes us all question our beliefs. But, “Why do people suffer?” “Why would a parent (the almighty God) watch his child suffer?” Those are some pretty heavy thoughts for an eleven-year old.

Well, I said, let’s go look in some books. Peter and I both have the bookworm gene, so this next step was predictable. The two of us were noses buried in various Bibles and theology books for some time. We also did some research on the Internet. Unfortunately, I wasn’t able to find an explanation that satisfied either of us. If anything, I think we both had more questions! Finally, I said (feeling a headache come on), “Why don’t you go play a video game, and we can ask your Dad when he gets home!” Whew, I thought. This is way too deep of a conversation for 8:00 on a Wednesday night.

Belief is a challenging topic for parents, especially ones with medically-involved children who endure countless trials. I plan to continue this conversation with Peter since, as he said the next day, “Yeah Mom, you were pretty clueless.” I suppose that’s true, but, hey, he caught me off guard! I’m guessing that Peter will someday enlighten me with a far better answer than what we could find in a book or on the computer. In the meantime, I’ll continue praying for guidance and wisdom on how to raise such a thoughtful and challenging son.

Sunday, November 6, 2011

Teaching toddlers that "Everyone is different"

The other day, I took Ethan with me to the grocery store, leaving Aiden behind with his daddy. I rarely get to spend one on one time with either, so I love these rare moments. Ethan was being especially good - I think because he know the store had toys and he was hoping to talk me into a purchase. Which he did. I let him choose something for under $5 and he was thrilled to finally get the "Barrel of Monkeys" he'd had his eye on for a while.

About halfway through our trip, I turned my back to face the meat case and choose some chicken breasts, when a small Asian woman tapped me on the shoulder.

"'Scuse me, he hit her," she said in broken English.

I flipped around to see Ethan standing near this woman's cart where her 2 year old little girl was sitting quietly. The look on his face confirmed his guilt before I'd even had a chance to react. My face flushed red. I grabbed his hand, spun him around and marched him over to apologize. I apologized on his behalf to the girl's mother and we walked away.

"What happened?" I asked Ethan. "Did you hit her?"

"Yes," he replied as his eyes welled up with tears.

He went on to tell me he slapped her hand because he didn't like the way she looked. He didn't like her eyes - they looked different from his.

I honestly couldn't believe what I was hearing. Here he is, 4 years old with a brother who clearly has some physical differences, and he's mistreating a perfect stranger for nothing more than her looks. I couldn't help feeling like I had failed in some way. Needless to say, he did not get that Barrel of Monkeys, and he threw quite a fit as I took them out of the cart. It was not a good day at the grocery...

We have always been very forthcoming with our kids when it comes to talking about differences. We have stressed from a very young age the whole "Everyone is different" mantra. We point out how some people are short, others tall, some have dark skin, others light...and some people have disabilities and need things like a wheelchair or trach to help them do everyday normal things. We started talking about Aiden's hands with Ethan when Aiden was still a baby - not to point out his differences, but to help Ethan understand that if he had questions, he could ask them without hesitation.

Despite all the preparation, I suppose every parent will find themselves in situations like the one I had in the grocery store the other day. Perhaps it is just an instance of a 4-year-old acting out. Even so, I used it as an opportunity to remind him about everyone's uniqueness, and that if he had questions, he should ask mommy in private and I would help him understand.

However, the very next day, Ricky took the boys to lunch and found himself in a very similar situation. Ethan was passing a little girl in the McDonald's playplace and called her "weird" because of the way she looked. Now I'm beginning to wonder if perhaps this is an indication of something more than a 4-year-old acting out. Maybe he is finally starting to realize how his own brother is different and is finding inappropriate ways to project the way he feels about it.

I'm not really sure how to address it. Do I continue to talk to him about Aiden to encourage questions regarding the way he feels about having a brother with differences? Or do I keep it more broad, focusing on how every person is unique and that it's just how God wanted it? I'm at a loss. Does anyone have any advice?

Saturday, November 5, 2011

Did you get your flu shot?

This week I decided that I couldn’t put it off any longer. I got my flu shot weeks ago, but I still had not taken the boys in to get theirs. Jacob is easy as he is able to get the mist, but for Peter it is quite the ordeal. Due to his airway complications, he has to have the injection. Unfortunately, Peter and needles have a very long history and an extremely confrontational relationship!

I was sneaky about it this year, which always makes me feel bad. But, telling Peter in advance over the years has not proved beneficial. If he refused to get out of the car when he was little, I was able to carry him into the doctor’s office. Now, however, he’s much too big for me to pick up and also much stronger. Plus, I don’t’ particularly enjoy the prospect of making a scene in the parking lot with potential witnesses. I’m sure no jury would take my side once Peter took the stand!

In my many attempts to help Peter, I have tried every approach you can think of—tough love, sympathy, reasoning, and everything in between. We have also been to a psychiatrist and consulted with Child Life Specialists on ways to cope with this fear.

So, this week, I cowardly took the boys to the pediatrician’s under the cover of needing Jacob’s ear checked. I know Peter was suspicious, and we did talk about how he needed to get a flu shot. But, I was totally noncommittal up until we were actually on the property! Once we got in the exam room, I sprung it on Peter that he should really get a flu shot since we were already there. What pursued was his typical hysteria.

Jacob quickly had his FluMist and was escorted to the waiting room with my iPhone for a session of “Angry Birds.” I regretted that I had not packed ear plugs to give him as well! A nurse and I then spent about 30minutes trying to calm Peter down. We gave him as many options as we could think of, including where he could have the shot (arm or leg) and how he could position himself. She also brought in a “shot blocker” that is supposed to make the injection hurt less. Peter wanted nothing to do with any of it. FINALLY, we made the decision (which is what usually happens) to hold him down and get the deed done. This time, instead of lying down, I told Peter to hug me real tight. As he did, I held his arms down while the nurse gave him the shot in his arm. As I’m hugging and holding him as tight as I can, Peter shouts, “Why does God have to give me all this shit?!” Why indeed?

Once the shot was over, Peter remained in my arms for several minutes. We talked, as we often do, about how life isn’t fair. We talked about how he has to endure a lot more medical tests and surgeries than other kids. And, we talked about how there are a lot of kids that go through much, much more. I told him that I wouldn’t be a very responsible parent if I didn’t make sure he got his flu shot, especially with his medical history. I know Peter is embarrassed after something like this, and I know, like me, he doesn’t understand why he can’t maintain just a little bit of self control.

Before leaving the exam room, I told Peter that I loved him and that none of us understands why God, to use his words, “gives us so much shit.” But, God also gives us the ability to choose how we react to those trials and live our lives. I also mentioned that if I ever heard him use that word again, he would be grounded from video games for a week. As he knows, Mom does not hand out free passes for saying bad words!

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.

Friday, September 30, 2011

Taking a Break

I don’t have much to report about my ongoing battle with the school system. I wrote a letter summarizing our meeting from last week and included requests for specific information on the budget as well as answers to several questions. I am still waiting for a response. In the meantime, I’ve made phone calls to attorneys and advocacy groups and am learning what my options are. Rest assured I will be taking action soon!

Navigating the legal and political bureaucracy when facing problems like this is extremely time consuming. You have to take breaks and step away from the situation to clear your head. Fighting an organization as large as the school district is a long process, and, just like in a marathon, you have to pace yourself. From my experience, organizations, when faced with challenges from those they serve, strategically hide behind their many layers and levels of management. They hope we will eventually become frustrated enough to give up our cause. Private insurance companies, State Medicaid offices serving the disabled, and school systems like I am now dealing with all employ these tactics.

As parents of special needs children, we have many extra issues to manage. Taking an occasional break from advocating for a cause is not giving up. It’s a necessary means of balancing your life, completing other projects, and enjoying your family. Nevertheless, it’s hard for me to watch too many days go by without a resolution for Peter. The FM system he used in school for the last three years is collecting dust somewhere in an office simply because he is enrolled in a private school. It’s saddens me that we have such a limited ability to govern where our tax money is spent for education. To me, “equitable services” as outlined in IDEA law means that private, public, and home-schooled students should all have equal access to assistive technology as needed. To our local and intermediate school districts, it simply means a balanced budget, even if it comes at the expense of kids with special needs. How sad and pathetic is that!

Monday, September 26, 2011

Our Craniofacial Acceptance Month picnic was a success!

I recently held my first Craniofacial Acceptance Month Picnic in my hometown of Round Rock, TX, just north of Austin. Although we didn't meet any more craniofacial families, we did have a pretty good turn out. There were a few families from the boys' school, as well as some neighbors and friends. And while I was so appreciative that they came out to support, I was the most excited about the complete strangers that stumbled upon our event and stopped to find out more about our efforts. 

My mom was kind enough to donate money to rent a bouncy house, which made it just about impossible to miss our group at the park. It drew a lot of people over to see what was going on - most thought it was a private birthday party and shied away, but I encouraged them to go right ahead and play as I chatted with their parents about why we were there.

I was a little nervous that nobody was going to show up at all as it was kind of a slow start, but my husband reminded me that even if we were able to talk to just one or two families in the community to spread awareness of CCA and craniofacial differences, it was going to be worth it. So when all was said and done and around 30 people had come and gone I was really pleased.

The school that the boys attend donated bubbles for the kids and collected chips from the kids families for the picnic. Our local grocery store, HEB, gave me $50 in gift cards to purchase all the drinks.
Everyone had a great time - our friends, who already know Aiden's story, were still able to learn a little about what CCA does - and the others, who we've never met before or only just briefly, learned a lot about Aiden, what he's been through, who CCA is and how they help families like ours.

All in all, the picnic was very well received and I look forward to hosting one again next year. Hopefully I will be able to attract more craniofacial families and others from the community to come out and enjoy themselves.

* If you hosted or attended a picnic in your area, we'd love to feature you here on the blog! Email your pictures and a short write-up about the event to [email protected]

Friday, September 23, 2011

Our Kids Must Learn to Advocate!

We had our school meeting yesterday to discuss reinstating Peter’s FM system. Peter attended the meeting with me, despite an email I received from the District’s Director of Special Services stating that, “This is a meeting with adults, not for your child. We will be addressing your concerns and questions with you. As Peter’s parent, how you choose to share that information to your son will be your responsibility.”

This comment got my blood boiling on several levels. Firstly, it set a confrontational tone for our upcoming meeting before we even met. Secondly, I don’t like being told by a stranger what I can and can’t do as a parent. Finally, this issue is 100% about Peter, and I, as his parent, do feel that he has every right to participate in any discussion relevant to him. Consequently, I went into the meeting already disliking this person. Thank goodness the Principal of Peter’s school attended the meeting with us. As parents, we are often too close to the issue at hand. Our emotions can quickly take over because these problems are personal in ways that those who do not walk in our shoes can’t possibly comprehend. I highly recommend having a knowledgeable voice of reason along with you!

We did not come to any resolution during our meeting. Many of the arguments were circular, and I don’t feel that any of my questions were answered. I did at least leave with more information and insight than I had going in as well as what our next steps will be in our attempt to reverse this decision. I asked Peter what he thought of the meeting, and he said that he didn’t really understand the conversation. I told him that I didn’t expect him to but that it was important for him to see the process. He witnessed a parent standing up for his rights, the expertise and support of his Principal, and the communication of adults disagreeing in a professional setting. I don’t regret for one minute that he attended our meeting. We must teach our kids how to advocate on their own behalf so that they will have those skills as adults.

I left our meeting with a deep sense of dissatisfaction. Later in the day, I immersed myself into drafting a summary letter of our conversation. As I know from experience, everything must be documented! Events like this leave me exhausted, and they consume a great deal of my time and energy. I felt uneasy and distracted all week leading up to this meeting. As Peter’s Mom, I have an extra obligation to fight for his rights. It’s just a shame that these issues consume so much of our precious family time.

Friday, September 16, 2011

The Things Kids Say...

I always look forward to some interesting stories on our drive home after school. Jacob, my 1st grader, came out of school one day this week and reported that he was moved from “green” to “yellow” for his behavior that day. He said he got in trouble for talking in line while the class was in the hallway. Peter, in his typical big brother way, says to Jacob, “Well, I’m not surprised. I knew it was only a matter of time before you got in trouble for talking. I mean… not to be mean or anything, but you do talk a lot.” I started laughing so hard I almost had to pull the car over!

Now that school is in full swing, the homework load is picking up. Peter, now in 5th grade, is definitely seeing an increase in his workload. Like many ten-year old boys, he would like nothing more than to come home and play video games all night. After telling Peter 3-4 times to turn off the game and finish his homework, I took action and told him that he had lost his video game privileges for the next day. That got a reaction! He defiantly looked up at me and said that he didn’t think I was talking to him. I said, “Who else is playing a video game?” Well, he says, “I only have one ear and it doesn’t work that great sometimes!” Don’t even try that excuse in this house I said (trying not to laugh) because it will get you nowhere. I have to give him credit for being creative though!

My fight to regain an FM system for Peter at school continued this week. I wrote a letter stating my concerns and requests, and I was able to schedule a meeting with the district's Director of Special Services. I am thrilled that the principal of Peter’s school will be attending the meeting with me. I also want Peter to participate, even if only in a very limited way. I feel very strongly that he should be a part of this process. Our kids have to learn how to advocate for themselves as they transition into adulthood. In preparation for the meeting, I am reading up on anything I can find about Michigan special education law and private schools. Stay tuned for updates via the blog.

Friday, September 9, 2011

Education & Politics

This week marks the beginning of a new school year in Michigan, and our boys are off to a fantastic start. Peter started 5th grade and Jacob is now a big first grader. Typical of the first week of school, I’ve filled out about a million forms. With a child like Peter, there is always a lot of extra paperwork to ensure the staff is informed of his unique issues and related medical background. As Peter has attended the same school now for several years, it is comforting to know how well the staff and his friends care for him.

Our boys attend a private school, so services that would be provided by a public institution are not always accessible for Peter. My husband and I were aware that he might miss out on some assistance by not choosing to go the public route, but we elected to place him in a private setting anyway. We could not be any happier with our decision

The public district that services Peter’s school has been very helpful in providing him with hearing-related services and assistive technology via an FM system in his classroom. This year, however, the district has decided that kids who attend private school should no longer benefit from such assistance. I find it extremely frustrating that this system has been provided by the district for the last three years but is now suddenly taken away. Why? Peter’s hearing needs are exactly the same as they were in previous years when he was always, without question, granted an FM system. Did this affect students in public schools? No. They will continue benefitting from services. This is strictly about money. If this had been the case from the beginning, I would be much more accepting that this is our choice of private vs. public. To provide something for several years, however, and remove it for no logical reason is quite baffling.

Tonight I tried explaining to Peter why he will no longer be using an FM system at school. Boy did he get an “education” about taxes and politics! If lawmakers had to sit across from their own kids and explain something like this, I sincerely think their decisions would be very different. I feel that someone higher up in our district owes Peter an explanation, and I’m going to request that he get it via a face-to-face meeting. I want to teach him that he is not too young to advocate on his own behalf. Stay tuned…

Monday, August 29, 2011

Raising awareness at school

I'm having so much fun planning the picnic for Craniofacial Acceptance Month in the Austin area. Our local grocery store, HEB, sounds very interested in sponsoring by providing drinks for the event and my boys' school, right here in our neighborhood, has offered to step in and be a part of it as well.

After doing a lot of research and stressing about making the right decision in choosing a preschool for Ethan and Aiden, I can honestly say that I am beyond thrilled with where they are. From day one, we were so impressed by the staff. They truly fell in love with both boys and have nurtured them both emotionally and educationally - something that was very important in our decision making.

When I mentioned that September was Craniofacial Acceptance Month, they were happy to help spread the word by hanging a poster in the lobby. But the school owner said she wanted to do more. She offered to enlist the help of each classroom to collect donations of chips for the picnic. They are also going to donate bubbles for the kids to play with that day as well.

In addition, I was asked to come speak with the boys' classes. I looked for an appropriate book to read that had a positive message and spoke at their level, but I just couldn't find one that addressed the unique and special journey that Aiden and our family have been on. So, I took matters into my own hands and created one myself.

Here is a link to "All About Aiden". I made the book using an online tool at I truly cannot wait to share it with the 3, 4 and 5 year olds at their school. I hope you enjoy!

How are you raising awareness this September (or, year round)?

Friday, August 26, 2011

Last Blast of Summer...

In less than two weeks, our days will be busy with school, work, practices, meetings, and homework. I can never seem to figure out why summer goes by so quickly and how my boys have grown so much in just a few months. Pants that fit in May are now too short, and somehow their feet grew several inches too! Sunshine and warmer weather, it seems, make children grow faster.

For me, the anticipation of a new school year brings several emotions. There is the excitement of starting fresh again mixed with the sadness of replacing pool towels on our laundry room hooks with backpacks and lunch boxes. There is the dread of cleaning out closets and drawers mixed with the wonderful feeling of being organized. End of summer for us also includes the relief of getting through several clinic appointments, radiology tests, and sometimes (but thankfully not this summer) surgeries. Medically speaking for Peter, this was a very good summer.

With the calendar quickly filling up, we decided to take one last family vacation before school starts. We are heading "Up North" as we Michiganders like to say. I’m excited to go back to the beautiful woods, lakes, and rivers; to be “unplugged” for at least a few days; and to enjoy and be thankful for my happy and healthy family. We will be staying a few nights at the Inn where Darin and I were married, and I’m really looking forward to sharing the place with our boys. It’s where our family began, and I think it’s the perfect way to enjoy our last few days of summer.

Sunday, August 21, 2011

Craniofacial Acceptance Month

September is quickly approaching and that means it will soon be "Craniofacial Acceptance Month". Even though I do my best to raise awareness about craniofacial conditions year round, having the month of September designated with this special title gives us all an opportunity to make the most of it - especially because it is the time of year that everyone heads back to school.

Although my boys are only in preschool, we have already started to notice that the kids are asking questions about Aiden. I have spoken with the school - and they are partnering with me to raise awareness at the school level. Hopefully you all will take advantage of the resources CCA has to help spread awareness within your community. Here are some ways you can participate (all materials can be obtained from CCA):

1. Ask your child's school if you can hang a poster during the month of September to promote Craniofacial Acceptance Month.

2. Offer to talk with your child's class. Discuss your child's condition at an age appropriate level and in a way that your child is comfortable with. Dede has some great ideas in her post from a few days ago.

3. Host a picnic. CCA will send invites to local craniofacial families, making it an opportunity to meet others you may not have met already. I'm also going to hang information about the picnic throughout my neighborhood. I would love for my community to come learn more about these amazing kids, CCA, and how they can foster a supportive environment for kids with facial differences.

4. Submit your story and info about CCA's Craniofacial Acceptance Month to your local newspapers, radio stations and tv stations. The more exposure we get, the more awareness is raised.

Let's take advantage of September to help support CCA's vision and to spread the message that "Beyond the Face is a Heart". To get started, email Annie Reeves ([email protected]) to receive a Craniofacial Acceptance Month packet including templates, posters and all info you will need to start your very own awareness campaign.

Leave a comment and let us know how you plan to spread the word! And be sure to email me at [email protected] with photos from your event. We will compile them at the end of the month and feature them right here on the CCAKids Blog!

Friday, August 19, 2011

Snakes, Crabs & Geese... Oh My!

Back-to-school planning continues at our house this week. Yesterday was, gasp, haircuts. Peter HATES getting his haircut. Jacob, however, can’t get in the chair fast enough, anxious to be finished and collect his sucker. I know Peter’s anxiety has to do with his sensory issues, but I still can't grasp just how irritating something as simple as a haircut must be for him.

When Peter was a toddler, I sometimes cut his hair while he was asleep-- ditto for trimming finger and toe nails. He did years of sensory therapy from birth to about age four. We played with dry rice, silly putty, shaving cream, and all other variety of gooey/textured things you can possibly imagine (note previous blog about finger painting with pudding). The therapy definitely helped. He is, after all, able to sit in front of a plate of food without turning away and gagging, and he doesn't totally freak out anymore when his hands get sticky. There are definitely lingering issues though. I know he hates to get any food on his face, hence the wet washcloth always next to his plate for meals. Loud noises, like sirens, appear to be actually painful for him. And, like I said, he despises having the hair fall on his face and neck while getting a haircut. He is also deathly afraid of snakes, crabs, geese, and bees. Why, I have no idea because he has never been stung, bitten, or pinched by any of the above. I do recall a goose once hissing at him around the age of 3. But, he's almost eleven now!

I admit that I often loose my patience with Peter's strange behaviors. An excursion intended for carefree family fun often becomes a frustrating and disappointing outing. We recently spent a day at the zoo, and I forgot just how much Peter feared geese until we had to walk by a gaggle of them looking for free handouts. I chaperoned a school field trip where he was so afraid of snakes and bees that he refused to go on a nature hike with his class. We've taken boat excursions where Peter went hysterical when they've pulled up crab traps. When snakes are brought into school for "Science Alive", Peter hides under the teacher's desk. He refuses to eat outside on our deck because of a potential bee encounter and on and on it goes. For me the real question is, "Will it ever end?"

Peter's fear of needles and what he calls "the white room" (the operating room) are things I can understand. Some of these other problems I only grasp in a very limited way. Things like loud noises and his dislike of haircuts I get a little more than his inability to walk on the beach for fear of a sand crab. The reality, however, is that these issues are frustrating and disappointing. They make me sad. I can't fix things for him, and I see how much fun he misses out on as a result of these phobias.

When our other son is afraid of something, we help him work through it rationally. That approach has no affect on Peter as his fears come from somewhere much deeper. Places so deep that only he will ever understand them. As we grow and learn together, I just hope to be a source of comfort and security when he needs it.


Sunday, August 14, 2011

The decision to have another child

When I was little I wanted 8 kids. Then, in high school, after I started babysitting a lot more, that number dropped to 6. After I had Ethan, another 2 future kids got bumped from the list, bringing my total to 4. And after Aiden, my husband and I agreed that 3 would be the right number for our family.

I became pregnant very easily both times and besides the regular gripes, I enjoyed being pregnant. Although the number of children we desire has shifted in part because Aiden was born with Apert Syndrome, that certainly isn't the only reason. Several things have been a factor in that decision. For starters, the fact that I've barely been able to carry a child to term (Ethan was 3.5 weeks early and Aiden was 5.5 weeks early) has me a little nervous to go through it again. And of course there is always the financial aspect - with or without a child with special medical needs, kids are expensive! However, lately we've been faced with the very real possibility that perhaps 2 children is all we will have. This has taken some getting used to.

We have been trying to get pregnant for right at a year now. Tomorrow, my husband and I will be seeing a fertility specialist for the first time to discuss how we would like to proceed. I've known several friends and family who have experienced infertility, and yet it is often something that nobody talks about. It has been an emotional roller-coaster for me and I hope you don't mind me sharing.

I can't seem to grasp how after successfully having two children, my body seems to have forgotten how to do so. I keep wondering if perhaps the big man upstairs is trying to tell me "you've got all you can handle, move on". But the desire is there, so I feel like I'm supposed to at least try to figure it out.

Throughout this process, I have second guessed every decision, every thought along the way. What if we do have another child and the relationship between Ethan and Aiden suffers because Ethan and the youngest can relate more to each other? If we don't have another baby, will Aiden always wonder if he was the reason why? And if we do, will he wonder if it was so we could have another child without a syndrome? How much more difficult will it be to care for two kids rather than just one when Aiden is in the midst of surgeries or unforeseen medical circumstances? And what would happen if we had another child with special medical needs? Perhaps I would be too worried about that possibility to even enjoy the experience of being pregnant again.

Some small part of me wants to call it unfair that things can't just happen easily for us. That we somehow "deserve" to have an easy road from here on out with all we've had to endure. And yes, I know that is rather selfish. All of these questions weigh heavily on my heart, and yet I know there is no way of knowing or preparing for the future. Being a "planner" by nature, it has been difficult to feel so off course. I am anxious to see where the next few months lead us - and plan to just take one day at a time. Even though I feel that deep down we are supposed to be a family of five, I just have to remember:

“A man’s heart plans his way, but the Lord directs his steps.” Proverbs 16:9

Saturday, August 13, 2011

Time for School

At our house right now we are busy getting appointments and shopping done in preparation for the start of another school year. Peter also just got braces and new glasses, so I think we are just about ready for the first day. In Michigan that is not until after Labor Day.

Peter is going into fifth grade this year, so all the kids in his class are familiar and used to his differences. He goes to a private Catholic school that has zero tolerance for any aggressive behavior (teasing or bullying). This gives him a well-protected and very caring environment for learning. Peter will be with these same students through eighth grade, so I’m not nearly as anxious about the approaching middle school years as I would be if he had to change schools. Also, I have really grown to love the kids in his class and how compassionate and protective they all are toward him.

I have been invited to speak about Peter’s differences twice since he started at his school in first grade, and each time I have really enjoyed the experience. In fact, I think I got just as much of an education out of it as the kids did. Each time, they delighted me with their care and concern, their interesting questions, and their knowledge. Peter also served as my assistant and loved soaking up all the extra attention.

Each time I came to the classrooms, I brought in items they could pass around and hold, including a trach, a feeding tube, and a prosthetic ear. We talked about how each one works and even squirted water through the feeding tube and watched it flow into a bowl. I also brought in photos that showed how Peter’s ear was made and pictures from CCA retreats showing other kids with facial differences. We talked about the unique faces in the photos, how they look different and sometimes get teased, why they have a lot of surgeries, and how they enjoy and want to do the same things as any other kid their age. In first grade, I read the book “It’s OK to be Different” by Todd Parr and also sent home an information packet. Included in the packet was a letter from Peter to his classmates written in language that a 6-8 year old could understand, a more detailed letter to parents explaining Peter’s differences, and some of CCA’s educational materials about craniofacial issues and Goldenhar Syndrome.

As September is craniofacial awareness month and the beginning of a new school year, I think it is an excellent opportunity to talk to students and spread awareness and education about facial differences. In speaking to Peter’s class in first grade and again in third grade, I was intrigued by how the kids had matured, asked very different questions, and expressed different concerns. Now that he is going into fifth grade, I can only imagine what they might come up with! At this age, 10-12, I think a more formal presentation with photos and text promoting a healthy conversation on social and medical issues will be age appropriate. I’m also thinking that, as Jacob enters first grade this year, it might be a good opportunity to start educating his classmates too.

CCA is developing an education program aimed at helping parents speak to classrooms about craniofacial differences. If you have anything you are willing to share, I am sure the staff would love to hear from you. Let’s get a conversation going… Have you ever formally talked to other kids about your child’s differences? How did it go? Do you have any advice for other parents? What about siblings? Have you talked to their class too?

Monday, August 8, 2011

Everyday therapy

You know those little guides on toy packages that highlight the various skills the toy is good for - fine motor development, hand/eye coordination, etc. - well I never paid much attention to those before Aiden. I'd buy toys for Ethan, my first-born, without any specific criteria in mind. Rather it just had to catch my eye, feel soft and look cute.

Once I had Aiden, that all changed. It was no longer just about aesthetic appeal. Buying toys became an opportunity to stimulate his senses, develop his mind and work on certain motor skills. It was something I took quite seriously.

As my thoughts on toy-buying shifted, so did pretty much everything. I'd get ideas from his weekly therapy sessions and elaborate on them throughout the day. With a little imagination, normal items around the house became a tool to help Aiden fine-tune certain skills. Sometimes I find myself having to just STOP and let him play, rather than turn everything into therapy.

Recently, as I was perusing the clearance bin at Barnes & Noble, I came across something that I just have to share. It was a little box of awesome called a "Preschool Prep Kit" by Grasshopper. This item was probably created for the teacher set, but was such an amazing find for an ordinary mom like me who is so focused on finding ways to incorporate skill building into creative play.

The boys couldn't wait to open the box and see what it included. Inside was a flip-chart style activity guide with clearly marked instructions and difficulty levels. Every single activity was geared towards a specific fine-motor skill.

For instance, they traced a picture with squeezable glue, then used small plastic tongs to pick up pom-poms and place them along the glue line to make a picture.

So simple and it kept them occupied for quite a while (which allowed me to empty the dishwasher and clean the kitchen :) And that is just one of the many activities outlined in the kit.

Anyway, just thought I'd share. Perhaps you can keep an eye out for this as you shop for birthday or Christmas gifts for your kiddos. I'm sure there are many other products geared towards skill-building for kids. If you have any you'd like to share, leave a comment below!

* I was not asked or compensated in any way to post about the above and all opinions about the product are my own.

Sunday, August 7, 2011

Friday, August 5, 2011

My Story

This week marks the one year anniversary of my 40th birthday (wink, wink). I feel GREAT, more like my old self and less like the stranger that possessed my body and mind for the last decade. What happened you ask? It’s a long story, but I’ll try to give you the brief version starting with my 30th birthday.

That was the day I had an amniocentesis done after just finding out that “there is something wrong with the baby.” Then there was Peter’s complicated, traumatic, and two-month early birth that had me scared out of my wits. That was followed by his over three-month stay in NICU, which really was a cake walk compared to taking care of him at home his first year. There was also the constant fight with our state Medicaid as well as the management of Peter’s numerous clinic appointments and piles of paperwork. It was a very lonely time for me even though we had a constant stream of strangers (therapists, nurses, and social workers) in and out of our house. In the midst of surviving Peter’s first year, I was dealt another blow by the sudden and tragic death of my brother. I also had two very early miscarriages during that time—one at his funeral.

How can all this be happening to me I thought? How much can a person take? What ensued was a very long bout of guilt, grief, and depression. I rarely left the house, was in a constant state of fear with the responsibility of Peter’s care, and sometimes never even showered or dressed for the day. It’s really something that I can’t even describe.

I did gradually claw out of the darkness. I had to for Peter’s sake. We had big decisions to make about surgeries and specialists. Those 2-3 years flew by in a blur of accomplishing what had to be done for Peter. Then, just as I was thinking life was calming down a little, SURPRISE again! I was pregnant. At the earliest opportunity, I had a high-level ultrasound. Once that came back normal, I did get excited about welcoming another baby. Also, Peter had his trach removed about a week before Jacob was born. We had a MAJOR celebration over that milestone!!! Things were definitely looking up.

Jacob’s birth, when I was 34, was a great joy. For me, it was very healing compared to the trauma of Peter’s arrival. I (stupidly) thought taking care of this baby would be easy compared to what we went through with Peter. Boy was I wrong! It turns out that all babies are exhausting—even the so called “normal” ones. Who knew?! Jacob never slept more than a few hours at a time and was very colicky. Poor Peter endured countless hours of hearing his new brother scream his head off and take all the attention away from him.

I do recall good times and laughs during all those years, but they were definitely overshadowed with a lot of responsibility. I still remember the words of the geneticist who diagnosed Peter. He said, “This is not doom and gloom. But, this is a very rough road.” Life is challenging and messy. We aren’t given the luxury to choose our trials, but we do have the choice to grow and learn from those events.

I’ve never shared my full story, but I’m hoping that it gives support to other Mom’s like me. Nobody would ever choose to have their child go through as much pain as ours do. It is not your fault. Let me repeat that again, IT IS NOT YOUR FAULT that this happened. You will survive the many challenges of motherhood, and, eventually, you will emerge a wiser and more compassionate person. I hate to tempt fate too much, but I say bring it on world! I think us “special” Moms can handle just about anything—wrinkles and all.

Monday, August 1, 2011

It's Giveaway Time Again!

As I mentioned in a previous post, both See Kai Run and Tsukihoshi have provided the opportunity for one lucky CCA Kids Blog reader to take home a pair of their awesome shoes.

The See Kai Run winner was: Tammy Wilson.

And now it could be YOUR turn to win, courtesy of Tsukihoshi.

This line of tennis shoes is the cream of the crop. They come from a company who has really put a lot of thought into what our kids wear on their feet. They have an entire page on their website describing their shoes "Special Multi Functions". You really need to check it out! Not to mention that I found it nearly impossible to find a solid pair of tennis shoes for Aiden. That is, until I found these!

Trust me, even if you don't have a child with Apert Syndrome, you will love these shoes. And so will your kiddo!

Here's how to enter:

1. If you haven't already, head over to Facebook and "Like" the CCA Kids Blog page. The winner will be announced there so you don't want to miss out!

2. Also "Like" the Tsukihoshi Facebook page.

3. Leave a comment on the CCA Kids Blog telling which style you would choose if you won. (You can always change your mind later.)

Good luck!

** The giveaway will be open until Friday, August 5 at 11:59pm EST. A random winner will be chosen based on the number of comments received. The winner will be announced Saturday, August 6th on the CCA Kids Blog Facebook page. I will ask for your contact information at that time so that I may send instructions for placing your order.