Rainy weather couldn't keep us from our annual first day of school pictures this year! We just moved them to the porch!
This school year, Oliver is in 3rd grade. Bennett is in 1st grade. And Avonlea is in the 3-6 year old class.
Wednesday, August 17, 2016
Rainy weather couldn't keep us from our annual first day of school pictures this year! We just moved them to the porch!
Friday, August 12, 2016
Things started going even better when Daddy arrived at the hospital. Childcare issues meant Brian had to arrive late and leave early. But it always helps to have another adult in the mix. There's always someone to talk to the doctor and someone to talk to the child. There's always someone to stay with the patient and someone to run to the cafeteria. There's someone to help calm the other adult. It just helps having Daddy there.
Our procedure isn't until September so there's no sense in fretting about it now. Once we get discharged (hopefully in another hour), we will head home and focus on something much more fun: Bennett's first day of 1st grade next week. Pictures to come. :)
Tuesday, August 9, 2016
YES! Three o'clock in the morning!!
I came upon those words in the conversation between the man's wife and Casey's mom when I re-entered the concession stand where I had been working and where they were speaking. I was grateful I overheard their conversation because I was given the opportunity to say thank you to this woman in person. It was meaningful to be able to do so since I had already recognized that so many people I didn't know had graciously given and were currently giving of their time, money and energy to make this weekend successful for the benefit of my son - people I didn't know, would likely never meet and never be able to adequately thank.
One such crew I never fully had a chance to thank were these little guys and their mothers who were sitting behind the batters box while our family (and a few sweet area volunteers) played a round of wiffleball in the Wiffleball Tournament.
I didn't have anyone to watch Avonlea while were were infield so I brought her some toys, put her on the bench in the dugout and told her to "stay put." That worked for all of 10 seconds since she's 3 years old, so I was much relieved when I heard a sweet motherly voice from behind me ask, "can I go get your daughter and have her come sit underneath the shaded tent with us?"
I was so appreciative of the kindness of a stranger, one whom I inherently trusted (and later learned I actually knew). I hated having to leave Avonlea in the dugout but I didn't know what else to do for her while we played. In this mother's arms, Avonlea was able to sit behind homeplate and the chain-linked fence to watch our game while she, too, was being watched.
The game lasted only 20 minutes. But I was proud of Bennett and Oliver for trying to play wiffleball, especially considering the 100 degree heat was intense. At one point, I yelled out to Bennett in the out field as encouragement. One of the mothers from the tent of boys behind the batting cage (where I was playing the role of catcher) piped up and asked, "is that Bennett, the one who this event is raising money for?" I smiled and explained that it was. Several of the mothers let out a sweet sigh.
Bennett came up to bat a few minutes later and I began noticing cheers coming from this group of mothers and their little boys, all who were dressed adorably in matching purple and white baseball uniforms with their respective nicknames hot-pressured in gold to the back of their shirts.
The cheers made Bennett feel like a million bucks. He swung at the ball and ran towards through the bases as fast as his legs would take him. It was a memorable moment for me, a microcosm of the entire day: to watch Bennett joyfully experience life using his precious lungs, at a fundraiser hoping to get him a cure, with a group of strangers cheering him on.
I wish I also had a picture of Casey, Laci and Sonny's parents Charlie and Susan Rose who worked diligently to make sure things went right. Charlie played on our wiffleball team at one point but spend much of his time fetching ice. And Susan ran here, there and everywhere trying to track down more quarters and Gatorade for the concession stand.
I also missed a picture of Geoffrey Orr, who also worked incredibly hard to make sure the softball fields were in ready-for-play condition (did you know they actually burn the fields to get them ready??) There are others that I don't have a picture of that are worth mentioning, such a the sweet ladies and two youngsters who worked with us in the concession stand and who volunteered their Saturday to help us raise money for Bennett. I have no doubt there are others I did not and will never know who helped and for whom I am thankful.
Sincerest thanks, Rose Family,
Monday, July 25, 2016
Oliver wanted chocolate cake but Bennett wanted vanilla so I decided to make vanilla cupcakes (from a box) and used cut-in-half marshmallows as a "kitty cat paw print." For decorations, I made yarn-balls and hung some from the light fixture. For party favors, each little girl went home with a stuffed kitty. (Originally, I had wanted to have live kittens for the girls to play with at the party. But, considering Brian is super allergic to cats, I decided to nix that idea. Anaphylactic shock would not be a good way to end a birthday party.)
Saturday, July 23, 2016
I wonder if this is the way people in the military feel when they deploy, return home, and deploy again.
In many ways, life with a chronic disease is nothing like military life. Deployed military personnel have far greater challenges than we do on a regular basis, which is why these ongoing hospitalizations give me even more respect for what they have to deal with when it comes to living two separate lives.
There is a rhythm to life, both life in the hospital and life outside of it. But those rhythms are very different. This every-three-weeks dip into "hospital life" is a shock to the system. But we seem to adjust just in time for us to return back to "civilian life."
The GI doc mentioned that, although she increased the size of the stricture to 13.5mm today, she was unable to place a 9-10mm catheter through the stricture. She said that these things are not an exact science and sometimes it takes stretching a stricture pretty far before it stays opened to the size we want. So, we aren't exactly sure how big the stricture is except that it's smaller than what we want it to be.
I am going to start trying to track Bennett's bowel movements now that we are back home. It's hard when he's 6 year's old and it's summer. He can't remember how many times he's pooped in a day and I can't focus enough, through the chaos of summertime, to remember myself.
Nonetheless, Bennett's next procedure will take place in 3 weeks. The GI doc hopes she can stretch the stricture to 15mm. After that procedure, we are looking at another procedure to stretch it to a size 18mm. The pediatric surgeon will likely be involved during that effort.
It's hard to believe we have more procedures to go. On one hand, these procedures couldn't go any better. Our doctor is fabulous. Bennett's body is responding. Bennett is not in pain. We aren't having to be admitted more than one night.
On the other hand, these procedures are wearying. Hospitalizations are inconvenient and interrupt our family life. Bennett is tired of going through all of this stuff. He wants to stop having to be poked and prodded. Giving your child miralax and enemas over and over again to prepare for surgery really sucks. Bennett is tired of having to go without food to prepare for anesthesia.
Bennett and I (and Brian and the kids back home) are all focused on making the best of these situations. We are tremendously blessed. But sometimes...
I just stand in the hallway of this hospital, see myself in third person - beige walls surrounding me, cold white tile under my feet, the air filled with sounds of beeping machines and quiet chatter of hospital staff - and I wonder:
"how in the world did I get here??"
How did I get to the point where I know hospitals so well?
How did I get to the point where I no longer get nervous when Bennett is in surgery?
How did I get to the point where "going to the OR" feels as straightforward as showing up for piano lessons?
Yes, she was right. I was feeling very laid-back. I am confident in Bennett's OR team and confident in his ability to tolerate the procedure. But my confidence ultimately comes from the fact we've been here before...many times. I might even feel a bit resigned. Not much point in getting stressed.
I'm very ready for these procedures to be done. I'm ready to stop the deployments. I want to stay in civilian life.
But, while we're here, deployed to a place we do not call home, it's so great to have friends visit us in the trenches?
And thank you to all of our friends back home and far away who sent messages of love while Bennett was in surgery and in recovery.
While our time away was made sweeter by friends, my greatest motivation to make it home from this most recent hospitalization was to take Avonlea and the boys to see Beauty and the Beast on stage at the Waco Civic Theatre. Thankfully, we made it in time.
Thursday, July 14, 2016
Outside of summer fun and our regular visits to the hospital, one other thing that has kept me busy this summer has been working with Oliver, who I mentioned in this blog post has having been diagnosed with dyslexia.
I have given much thought about just how much I want to share about dyslexia on this blog, considering it's mainly about Bennett and his journey with CF. But then I realized, my sharing about dyslexia is directly connected to CF.
Becoming a parent advocate for a child with a chronic condition like CF is not much different than becoming a parent advocate for a child with an educational disability. Both push me to share things I've learned and resources that I have found to be immensely helpful, in hopes those around me, who are also struggling, can benefit.
So, for those who don't know much about dyslexia (or want to better understand what Oliver is dealing with), here's a quick Q and A with resources scattered throughout:
What is dyslexia?
Dyslexia is as a learning difference (considered a disability in the educational system) characterized by problems in processing written words into meaningful information.
Dyslexia is often over-simplified as a language deficit. However, neuroscience shows us the brain is cohesive. People with dyslexia actually think differently.
Neurodiversity, the diversity in how each of our brains work, offers a series of cognitive trade-offs.
People with dyslexia are often recognized for their difficulty with written language but may also struggle with executive function skills, working memory issues, attention issues, slower processing and issues with rote memory.
The cognitive trade-offs for people with dyslexia are that they are also known to exhibit huge strengths such as big-picture thinking, interconnected reasoning, problem-solving skills, ability to stay focused on a goal, unusual insight into complex systems and great creativity.
Many talented people struggle with dyslexia but benefit from dyslexia too: Steven Spielburg, Jamie Oliver and Richard Branson, creator of Virgin Airlines.
There are many others but my point in sharing well-known people with dyslexia is that dyslexia shouldn't be seen as a disability, something to "overcome," but rather something to embrace. As long as we limit people with dyslexia to having a disability, we fail to see the amazing thinking process they actually embody.
So does dyslexia mean Oliver can't read?
Dyslexia means Oliver struggles with written language but it does not mean that he can't read. In fact, Oliver reads above grade level!
Dyslexia looks different in every person. For Oliver, dyslexia manifests itself in multi-step things that feel incredibly complicated, things like tying his shoes, figuring out a math problem, answering questions from a passage or organizing a project. For Oliver, handwriting is particularly laborious.
Most people would never know Oliver has dyslexia. He uses his advanced social skills to hide his struggles. But school is very difficult for him. He works extremely hard to do what is asked of him but becomes very overwhelmed having to do this day after day. Without support, Oliver can easily feel he is not capable of things he is more than capable doing. This is why addressing dyslexia is really important.
Like CF, people are born with dyslexia. Dyslexia is highly inheritable. But, unlike CF, no one gene has ever been identified for causing dyslexia.
People with dyslexia have shown to use a different part of their brain to read than do those who do not have dyslexia.
It is believed that as many as one in five people have dyslexia. And most have a parent, grandparent, sibling, aunt or uncle with dyslexia.
With regard to our family, Brian and I don't have dyslexia but we know a few extended family members that do.
We do not yet know if Bennett or Avonlea have dyslexia.
How do you treat dyslexia?
Dyslexia isn't a disease. So, there is no cure. And I don't ever expect there will be one (nor do I prefer one).
Dyslexia is simply a different way of processing information. The best treatment for dyslexia will be when the educational system catches up to science and begins supporting humans' diverse learning processes.
For people with dyslexia, written language can be very difficult. Those with dyslexia often need to be taught to read in a very specific way. Right now, Oliver gets on-going intensive tutoring outside the regular classroom to work on reading, spelling, writing and written organization skills.
Oliver will need this intensive tutoring for about 2 years to master his reading skills. But people with dyslexia may always struggle with reading, spelling and writing in some capacity for their entire lives.
People with dyslexia may need accommodations at school to help them reach their potential. This isn't because something is wrong with them, but it is because so much of the educational system measures learning very narrowly, often with a focus on reading and writing.
As more and more classrooms become multi-sensory and more and more technology is implemented, I hope more people without dyslexia will see just how amazing people with dyslexia are. As long as we look at people with dyslexia for what they *can't* do, we cannot see what they can. If you know someone with dyslexia, you will know exactly what I mean. ;)
I love this chart - it shows how dyslexia affects people's reading abilities. Notice how people's IQ scores go up but their reading scores begin to struggle. People with dyslexia are typically able to stay up with their peers for a while. But without extra support, their scores begin to suffer:
How early can you test for dyslexia?
Children can be tested for dyslexia as early as the age of 5. The earlier a child is treated, the greater their success in school.
It is NOT true a child must wait until 2nd or 3rd grade to be tested. If a parent or teacher has been told he/she must wait until the child is older/fails in school, it is out of a desire to protect limited school resources, not out of protection of the child.
The first 2-3 years of primary school is spent learning to read. All of the rest of the school grades are spent reading to learn. Time is not on your side. Testing should be done as early as possible.
By law, schools must test students enrolled in the public school system whose parents send a signed letter to the school in writing requesting testing be done. Many states have a law that testing must begin within a certain number of days from receiving that letter. Make sure to keep a copy in your own records should there be a delay.
Testing in the public school, while free, may work well or may be too generic to identify the child's specific needs. If testing within the public school system is too slow or too generic, I suggest moving forward with private testing.
Once test results identify a child has a learning difference that is considered a disability, like dyslexia is, the child will be required by law to receive support services in the classroom through an IEP or 504 plan. Texas considers students with dyslexia to be covered under a 504 plan.
How do you test for dyslexia?
Educational psychologists have a variety of tests they use to test for dyslexia. I recommend looking for someone who can give a full "psycho-educational assessment."
The public school's special education system can test but I highly recommend private testing as it can provide more specific testing than the public school system can offer students.
Brian and I felt full psycho-educational testing was important for understanding Oliver's issues in school. We wanted to have all parts of his cognitive and psychological processing evaluated to give a better picture of what might be going on.
Oliver was tested at the University of North Texas-Denton's child psychological department and the UNT-Denton Speech and Hearing Clinic. The testing took place over 3 half days. We were very happy with the process and all that we learned about how he learns and how to help him.
There are many organizations, people and universities around the US who offer psycho-educational assessments starting at age 5 or 6. Some are very expensive. Others are more reasonable.
Universities often offer more cost-effective testing as those who are doing the testing are often students themselves learning under professors. I suggest asking around.
Here is a great website that tells more about testing for dyslexia, specifically: http://www.allaboutlearningpress.com/testing-for-dyslexia
My child has a dyslexia diagnosis. Where should I go now?
Here is a great resource for how to approach your child's school about your concerns:
I recommend using the Orton Gillingham approach to addressing reading issues with dyslexia. I also recommend Take Flight.
Once you know your child has dyslexia, I highly recommend learning as much as possible about it. Here are some good books to read: Overcoming Dyslexia, the Dyslexic Advantage, the Dyslexia Empowerment Plan
Here are several documentaries about dyslexia I really love: HBO's The Big Picture, Rethinking Dyslexia (see the trailer here) and Embracing Dyslexia.
Here are two resources I recommend:
http://dyslexia.yale.edu/teachers.html and http://www.internet4classrooms.com/exceptional_children/dyslexia_teacher_resources.htm.
As a mother of a child with dyslexia, I have three pieces of advice for teachers of students with dyslexia (which is pretty much every teacher as dyslexia is the most common educational special need):
1.) Recognize that dyslexia is not just a reading/writing/spelling issue. People with dyslexia think differently. This will impact everything they do in your classroom.
2.) Embrace the whole child. The child is not the child without this learning difference. Dyslexia is something you will have the opportunity to address in a variety of areas and that you will benefit from in your classroom. Children with dyslexia will surprise you with their thoughtful insights and their creativity. They may also surprise you with their tendency to struggle in areas you wouldn't expect. Embrace all of them.
2.) Believe in this child more than anyone ever has in their entire life. You have the power to make a HUGE life-changing difference. Ever considered what left-handed people feel like as they live in a right-handed world? Imagine that experience 10 times worse. People with dyslexia have to live life in a world made for non-dyslexics. Written language is the key to success to so much in life, especially when it comes to school. So, to struggle with written language means school work is arduous, success is limited and expectations are overwhelming. The fact that children with dyslexia face this challenge every day and do so with great strength is something to be admired. Children with dyslexia become accustomed to failing, to not meeting the expectations of the teachers/adults around them and begin to hate themselves for what they can't do. Having a teacher who believes in them - who sees beyond what they can't do and instead sees what they can do - can make a huge difference in the life that child.
Monday, July 4, 2016