My kid is obsessed with letters. Is this normal? Not that I'm complaining. I'm just glad he isn't obsessed with staying up late or not eating his vegetables. He knows all 26 letters. He can say about 20 out of 26 correctly, and he's thisclose with the others! He can also say most of the sounds. He loves to point at our shirts or hoodies that have letters and tell us their letter names and sounds. And he loves, LOVES his fridge phonics and letter factory video (thanks, Traci!). We're going to get him the word whammer for his birthday (you can put up to three letters together to make a word). Here's a video of him doing what he loves.
May 27, 2010
May 26, 2010
May 24, 2010
May 19, 2010
May 18, 2010
May 16, 2010
Taking off
As you can see from the video I posted, Nate has really taken off with his speech. He's been getting speech therapy for a few months now and has shown lots of improvement. We worked so hard at getting those three little words together so he could tell us "I need more."
We really started noticing results after we started giving him fish oil. I had heard great things from other parents about the benefits so I figured we'd give it a shot. I found the Nordic Naturals line at GNC and started giving it to him about a month ago, mixing it in with juice or applesauce. He doesn't seem to mind the lemony taste at all. Call me crazy, but I swear that within a week he was saying new sounds. It was amazing how every other day he seemed to be making a new letter sound! I am convinced that the fish oil has triggered something and his speech has improved tremendously since he started taking it. Just the other night while reading books before bed he was pointing and saying (in his own way-not perfect words yet) things he saw in the books. He's never done that before! I am looking forward to the school year being over so I can sit in on his speech therapies and work with him over the summer. I'm sure he'll be talking up a storm in no time!
*The above picture is of Nate flying his toy plane before we actually took off for our trip to Florida. I hadn't posted it yet and thought it would be appropriate in this post, considering the title. Enjoy!
May 14, 2010
The lucky ones
I had a conversation with a friend recently who I hadn't talked to in awhile. After I had updated her on Nate, she told me how strong she thought Ryan and I were and how lucky Nate was to have us as parents. While it was a very nice thing to say, my immediate response was to tell her that actually, we are the lucky ones. We are blessed to have him. And as rough as spending an entire day seeing an array of doctors is, or watching our baby go into surgery, or seeing other kids in the neighborhood run around at the park, I still truly and firmly believe that we will always be the lucky ones.
I have realized all too clearly lately that we (meaning my husband and I) are very lucky in other ways, too. We absolutely couldn't do what we do on a daily basis if it weren't for the help of our family. They have been absolutely AMAZING. Their help has not only allowed us to fit in a series of extra work commitments lately, but has also allowed us small breaks to spend time together doing things we enjoy. For example, my mom and mother-in-law split the time between the two of them watching Nathan so I could go to the conference that I mentioned in this post. And when a Cubs rooftop game
suddenly turned into a Blackhawks playoff game
my sister was more than willing to stay late so we could root for our Chicago teams! And just last weekend, Ryan and I drove two and a half hours to Noblesville, IN to see our favorite band, Pearl Jam. I think we are officially groupies. :)
Oh yes, we are definitely the lucky ones! Thank you so much mom, Dianne and Val for all that you do! We couldn't do it without you!
I have realized all too clearly lately that we (meaning my husband and I) are very lucky in other ways, too. We absolutely couldn't do what we do on a daily basis if it weren't for the help of our family. They have been absolutely AMAZING. Their help has not only allowed us to fit in a series of extra work commitments lately, but has also allowed us small breaks to spend time together doing things we enjoy. For example, my mom and mother-in-law split the time between the two of them watching Nathan so I could go to the conference that I mentioned in this post. And when a Cubs rooftop game
suddenly turned into a Blackhawks playoff game
my sister was more than willing to stay late so we could root for our Chicago teams! And just last weekend, Ryan and I drove two and a half hours to Noblesville, IN to see our favorite band, Pearl Jam. I think we are officially groupies. :)
Oh yes, we are definitely the lucky ones! Thank you so much mom, Dianne and Val for all that you do! We couldn't do it without you!
May 12, 2010
May 10, 2010
3 weeks and counting
Three weeks until I can leave this place for the summer.
Don't get me wrong.
I love what I do.
It's not that often that you can say you "color" for a living.
At least that's what my husband tells me.
This week was our district's Fine Arts Festival.
A week to show off. To show the kids' talent, that is.
And boy, did I ever.
But as much as I love what I do,
I am counting the days until I can leave this place.
Don't get me wrong.
I love what I do.
It's not that often that you can say you "color" for a living.
At least that's what my husband tells me.
This week was our district's Fine Arts Festival.
A week to show off. To show the kids' talent, that is.
And boy, did I ever.
But as much as I love what I do,
I am counting the days until I can leave this place.
May 09, 2010
A new sorority
Last weekend I drove to Columbus, OH and back. Halfway, I met up with my friend Jen who I met online. She has a son with sb, too. His name is Owen and he is an inspiration. We drove half of the trip together. And I don't think there was even one second where we didn't have something to talk about. Which might seem strange for two people who had just met the night before.
We both attended a conference called "You Are Not Alone". It was put together by two mothers, best friends, who are much like Jen and I. You see, we all have children with special needs. And this conference was just for mothers like us. It was a very emotional day, but I am so happy I went. I was able to meet lots of other wonderful women just like my friend Jen. I wasn't sure if I would be able to sum up such an experience for you all. One of the mother's wrote a poem about a sorority. I didn't even know I was part of it. But just like Jen and all the other mothers at the conference and all the mothers with children of special needs, we are in this together. And I wouldn't change a thing.
To You, My Sisters
By Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores.
I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring with experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychology.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
To my fellow sorority sisters (you know who you are) it is because of you that I know I am not alone. I am thankful for each and every one of you.
Happy Mother's Day!
We both attended a conference called "You Are Not Alone". It was put together by two mothers, best friends, who are much like Jen and I. You see, we all have children with special needs. And this conference was just for mothers like us. It was a very emotional day, but I am so happy I went. I was able to meet lots of other wonderful women just like my friend Jen. I wasn't sure if I would be able to sum up such an experience for you all. One of the mother's wrote a poem about a sorority. I didn't even know I was part of it. But just like Jen and all the other mothers at the conference and all the mothers with children of special needs, we are in this together. And I wouldn't change a thing.
To You, My Sisters
By Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores.
I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring with experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychology.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
To my fellow sorority sisters (you know who you are) it is because of you that I know I am not alone. I am thankful for each and every one of you.
Happy Mother's Day!
May 08, 2010
Clinic
Ryan and I decided to make the move from University of Chicago to the spina bifida clinic at Children's Memorial. We did this for a couple of reasons but mostly because trying to arrange appointments with a handful of different specialists and making separate trips to U of C for each was too much. At clinic, Nate will be seen by all the specialists in one day. Yes, that makes for a loooooong day, but only one trip. And the best part is that the doctors work collaboratively with each other-something that seemed to be a chore at U of C.
At Nate's first appointment, he will be having a renal (kidney) ultrasound, a urodynamics test (bladder voiding), a muscle test and will meet with a neuro surgeon, orthopedic surgeon, urologist and physical therapist. I am most anxious about uro (worried about his kidney reflux-praying that is better) and ortho. I firmly believe it is time for Nate to start working on being independently mobile. Our PTs think that Nate is ready and shows appropriate signs for trying some high bracing and a walker. He still struggles bearing weight in his legs but has shown some new strength. Most of all, I have a strong mother's intuition that he is getting more and more frustrated with his inability to just go. And although preschool is a year away (just a year!) I want to be sure he is ready for that-whether it's in braces and a walker or in a wheel chair. That is something else I am going to inquire about at clinic, and I hope we will be ordering one soon. I have heard great things from other moms about how much more their kids are able to do in their chairs-and that they even started talking more and becoming more social and less shy. It's a big step for us, and Nate, but ultimately one that I know is good for us to take. Our clinic appointment is May 18th.
Here is a photo of Nate on his police motorcycle that his wonderful PT, Toni brought for him. He sits up so big in it! Not into the whole rocking thing yet, but we are working on it. Just sitting in it and watching one of his letter or word videos helps him practice strengthening his core. He is getting so strong!
At Nate's first appointment, he will be having a renal (kidney) ultrasound, a urodynamics test (bladder voiding), a muscle test and will meet with a neuro surgeon, orthopedic surgeon, urologist and physical therapist. I am most anxious about uro (worried about his kidney reflux-praying that is better) and ortho. I firmly believe it is time for Nate to start working on being independently mobile. Our PTs think that Nate is ready and shows appropriate signs for trying some high bracing and a walker. He still struggles bearing weight in his legs but has shown some new strength. Most of all, I have a strong mother's intuition that he is getting more and more frustrated with his inability to just go. And although preschool is a year away (just a year!) I want to be sure he is ready for that-whether it's in braces and a walker or in a wheel chair. That is something else I am going to inquire about at clinic, and I hope we will be ordering one soon. I have heard great things from other moms about how much more their kids are able to do in their chairs-and that they even started talking more and becoming more social and less shy. It's a big step for us, and Nate, but ultimately one that I know is good for us to take. Our clinic appointment is May 18th.
Here is a photo of Nate on his police motorcycle that his wonderful PT, Toni brought for him. He sits up so big in it! Not into the whole rocking thing yet, but we are working on it. Just sitting in it and watching one of his letter or word videos helps him practice strengthening his core. He is getting so strong!
May 06, 2010
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