Monthly Archives: November 2014

We Are So Thankful

The season of thanks is upon us once again and we have so much to be thankful for this year. Along the journey, we have learned to be thankful for everyday and grateful for all of the little moments throughout the year. As we reflect upon the last year, one thing stands out most; progress. We are so thankful for progress. Braxton has accomplished so much in a year and what once was very slow progress, is now exploding in so many ways.

This time last year, Braxton took his first unassisted steps and at most walked about 10 steps on his own. He was eating 2-4 ounces per day. He had no words and minimal sounds. Though progress was slow, there was, in fact, progress. Braxton can now walk unassisted, albeit a bit wobbly, an entire city block.

He’s on his feet more than he crawls around. He eats nearly 16 ounces every meal and you’d never guess there was ever a time he couldn’t or didn’t want to eat. He still has no words, but he is so much more vocal these days. Thanks to technology, he now has a voice through the Augmentative and Alternative Communication (AAC) app, Speak For Yourself on the iPad. He’s learning everyday how to use the app to communicate with us.

Braxton pointing and telling me he wants to eat on SFY.

Braxton pointing and telling me he wants to eat on SFY.

His dexterity, focus, and fine motor skills are still slow to come, but he is so much farther along this year.

Braxton learning to string beads

Braxton learning to string beads

These are huge accomplishments for Braxton, but there are also so many little things we are thankful for this year.

 

 

We’re thankful for the coos and babbles that wake us before the sun, because it means we’ve been granted another day.

We’re thankful for the extra minutes of rest we can steal when Braxton will snuggle in bed with us.

We’re thankful for the sweet smile and not-so-gentle pat on the back that says, “Wake up, guys!”

We’re thankful for the sweet way Braxton pulls you close for a hug and rests his head on your shoulder.

We’re thankful for the way Braxton pulls our arm back around him when the hug wasn’t quite long enough.

We’re thankful for the look Braxton gives when he recognizes you and the way his eyes light up and his beautiful smile crosses his face.

We’re thankful for the way his whole body tenses up and he shakes with excitement, or kicks his little legs.

Big Smiles

We’re thankful for silent way Braxton says “I love you.”

We’re thankful for the incredible sibling bond he shares with his amazing big sister.

A sibling love that cannot be broken.

A sibling love that cannot be broken.

We’re thankful for the messes Braxton makes, because it means he’s mobile and independent.

We’re thankful for the countless hours of therapy that have helped Braxton along the way.

We’re thankful that we are down to seeing our specialists once a year.

We’re thankful for Braxton’s good health as of late.

We’re thankful for the sweet moments in parenting that melt away bad days and tell us we must be doing an alright job.

Sleeping

We’re thankful for therapists who have been in our home since Braxton was 8 weeks old. Their tireless work with Braxton goes far beyond therapy. They love and care for our sweet boy and share in our pride when Braxton reaches a goal. Braxton is not just a patient or a paycheck to them. We have been extremely blessed.

We’re thankful for wonderful teachers who have joined our team this year and have already fallen in love with Braxton. They have such a love for all of their students and we’ve seen such progress since Braxton started with them in August.

Braxton walking with his teachers

Braxton walking with his teachers

We’re thankful for the tantrums Braxton throws when he gets told “no” or has a toy taken away, because it shows he has the cognitive ability to understand and a way to communicate when something is unpleasant. It’s also a “normal” toddler reaction, so it’s a nice reminder that not everything in our life is atypical.

Braxton Upset

 

We’re thankful for the times Braxton gets himself in trouble by opening the oven door, swinging the lid on the trashcan, opening the cabinets and banging pots and pans, or unraveling an entire roll of toilet paper, because do you know what cognitive and motor skills it takes to do any of these things!? Although it can be frustrating and we get upset with Braxton, inside we are elated because this shows so much progress!

We are thankful for the sweet laughter that fills our home daily.

 

We’re thankful for family that loves and supports us in so many ways.

We’re thankful for friends who care and share in our joys.

We’re thankful for people who read our blog and share our Facebook posts and have fallen in love with a little boy they have never met.

We are thankful every day for so very much in our lives. We remain positive in our journey because positivity has so much more power and love than focusing on the negative. We have bad days, but they don’t last long because we allow positivity to permeate every aspect of our life.

We wish the same for you. Look for opportunities to be thankful. Live every day with gratitude and positivity. Let your thanks extend beyond today and this season. From our family to yours, we wish you a very Happy Thanksgiving.

 

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Filed under Kids and Family, Life, Special Needs Child

Braxton Goes to School

Friends, I can hardly believe the words in front of my face: Braxton has been in SCHOOL for TWO MONTHS! 50 days…approximately. (Not that I’m counting or anything). We have had an incredibly amazing start to our special education journey. It’s no secret that I was VERY worried about putting Braxton in to school and scared that he would regress because he was no longer in a full time program. I’m happy to report that I was VERY wrong. The journey is different for everyone, but so far, ours has been a success.

First Day of School

Braxton and Aileen(Don’t worry, I promise not to do all fifty individually, it’s just logical to start at the beginning). I was an absolute MESS the first day of school. We attended “Meet the Teacher” night the week before and I felt some of the tension release when I finally met Braxton’s teacher. She seemed very nice and caring and despite the million questions I had, she never once rushed me away or made me feel like my questions were unimportant. She also mentioned that she had spent some time reading our blog and getting to know Braxton. Imagine my surprise! I can’t even get a doctor to read Braxton’s chart before they walk in the room for a scheduled appointment. But that’s another story for another time. Braxton explored the classroom without hesitation and we dropped off his school supplies.

The teacher asked me to come in before school started to talk about Braxton’s feeding routine and wanted to make sure they were prepared. When I arrived, I learned that the Speech Therapist had given them a crash course on Blenderized Diet and how to puree food, so the teacher’s thought THEY would have to blend his food for him! I’m sure there was a collective sigh of relief when I let them know I would provide Braxton’s food already prepared daily. They were able to watch Braxton eat and I gave them some tips and talked about some of the things we watch for when he’s eating. I was a little worried that a new place and new people might make Braxton a little anxious and make him not want to eat the first day, so I asked if I could at least stay that first day through lunch to help mitigate any issues.

First Day of School!

First Day of School!

Despite having attended the back-to-school night and meeting the teacher a few days later, I was still quite scared for his first day. I don’t think there is anything quite heartbreaking and exciting for a parent as sending a child to school for the first time. I dressed Braxton in some new “big boy” clothes, prepared his lunch, and put everything in his cute little backpack. I felt the tears well up. When we got to school, I walked Braxton to class and got to sit through their welcome routine. To my surprise, Braxton sat still on the carpet with his class and paid attention to his teacher as they sang and welcomed everyone to school. When I sat in on the class last year, I remember thinking “yea, there is NO way Braxton is going to sit for all of this.” Well, he sure showed me! (As he often does). The classroom aide was wonderful with Braxton and his other classmate who is not very mobile. She helped them clap and move and stand, and it was just awesome to see. We went to lunch, and Braxton decided that he did not want to walk so we had to carry him. At this point, we discussed the use of a wagon at school for long distances. I was pretty adamant that I did not want Braxton using a walker, but I was okay with a wagon as long as they did try to walk with him first. When we got to the cafeteria, I let the teacher feed him so that I could see if he would have any anxiety about the noise in the cafeteria and a new person feeding him. Braxton had gotten used to different people feeding him in daycare, BUT he would get upset if someone started feeding him and then  a new person came in mid-feeding. I was also worried all the new people and sounds would keep him from wanting to eat. Again, he made mom look a liar! He ate like a champ. The school speech therapist was also present to evaluate his eating and make sure they took all the necessary precautions. Everyone was on board and pleased with Braxton’s eating skills. It’s amazing how far he’s come. If you spent any time with him now, you would NEVER guess that there was ever a time when I couldn’t even get the spoon near his mouth. I left the school confident that Braxton was in good hands, but I did cry on the way home.

The first few days were a little bit tough on me, but Braxton did wonderfully. The teachers reported that he was doing well for them in class and adjusting to the routine quite nicely. He was also eating quite well for them at lunch. Braxton relied on the wagon quite a bit in the beginning, but the teachers assured me they were walking with him in class a little more each day. I was confident that Braxton would adjust to the schedule and slowly be more tolerant of walking a little bit further every day. When we met for our first ARD in June, I asked that we have a new one when school started so that I could meet the therapists who would be working with him and also provide updates because I knew he would grow so much over the summer. We also had to adjust his IEP to allow for the school to feed him based on the recommendations of his doctor and a Modified Barium Swallow Study that told them it was safe for him to eat by mouth and bypass his g-tube. After the first week, I contacted his teacher to go ahead and schedule the ARD.

Back to School ARD (IEP Meeting)

For Braxton’s first ARD of the school year his teacher, school PT/OT/ST, Assistive Technology Rep, Hearing and Vision teachers  and ARD facilitator were present. I provided the committee with a copy of a report I had typed up for Braxton’s pediatrician. We had spent the summer visiting all of Braxton’s specialists and getting updates on his health and seeing tremendous growth from Braxton as well, so I wanted to be sure everyone had the most current information about him. I talked to them a little bit about the new things we were seeing like his endurance for walking longer distance with moderate assistance, babbling and vocalizations, and of course eating like there was no tomorrow. We reviewed Braxton’s goals and I told them a little bit more about my goals for him at the end of the school year. My two biggest concerns were communication and mobility. I wanted Braxton to start using a communication device from home and I wanted him to walk independently without the use of a walker because he was already very close to doing so. The school speech therapist and assistive technology rep both said they wanted to talk with me further about an AT evaluation, and we decided to set that up separately from the ARD. It was a short, sweet, and productive meeting for everyone and after all the horror stories I’ve heard, it was nice to leave the meeting with a sense that everyone was aboard “Team Braxton.”

I went next door with the speech therapist and AT rep to discuss communication options. Braxton’s teacher popped in as well and was very interested in learning more about our plans for Braxton. I was beyond thrilled when I learned that our district would provide Braxton with ANY communication device/program necessary until he graduated from the district! I was flabbergasted. I’ve talked to SO many parents who have fought tooth and nail to get the district on board with bringing a device FROM HOME, that it was nice to hear them say they would provide what he needed and we would be able to take it home daily and over the school breaks. We talked about different iPad programs and options and the ST and AT told me they would begin evaluations with Braxton’s the next week. Braxton’s teacher was also quite excited to start working with a device with Braxton, so again, it was such a huge relief to have everyone on board and not have to put up a fight for anything at all.

Adjusting to School

School is exhausting!

School is exhausting!

After the ARD, things seemed to continue going well. As Braxton adjusted to his new schedule, he was coming home quite exhausted! Over the summer, he didn’t really nap a whole lot, so it seemed as though he was growing out of the need for a daily nap. He slept for an hour at most each day. Once school started, he had therapy every morning and then school from 11 am to 2pm. When he got home at 2 pm, he fell asleep almost immediately and slept 2-3 hours every day!! He’s adjusted quite well now and doesn’t fall asleep until bedtime. Sometimes, we will put him down around 4 pm because he starts to get a little cranky.

Color time!

Color time!

Within a couple of weeks, I started to notice Braxton making some changes at home. He was standing a lot more and walking between us and cruising all over the house. We put a crayon in Braxton’s hand and he colored for the first time ever! The teachers continued to tell us that Braxton was making progress and doing well in school. They told me that he was starting to walk more for them as well once he got used to the schedule. Our school is really great about having family events and getting everyone involved, so I really saw his progress when we attended these events. He walked from the parking lot in to the school and around the school with no problem, colored, played, and smiled the entire time. His teachers fell in love with him pretty quickly and vice versa. There have been mornings where Braxton is very cranky and won’t cooperate with me at all, but the second we pull in to the school parking lot I hear him laughing and babbling in the back seat. As I get him out of the car, his little hands go up in the air and his whole body begins to shake as a huge smile comes across his face. I can tell that he is excited. He walks with me over to his teachers and his face just lights up. He walks to his aide and gives her a big hug every single morning. And his teachers are always happy to see the kiddos. They greet everyone and acknowledge the kids and always seem to genuinely be in a good mood. I know that Braxton is in really good hands and his teachers have a sincere vested interest in the kids’ success.

Braxton walking with his teacher and classroom aide.

Braxton walking with his teacher and classroom aide.

Now, two months in to school Braxton is transforming right before our eyes. He is closer than ever before to walking independently. He will now walk by himself at home and in the classroom. He walks from the living room over to the playroom, or just from his feeding chair over to a nearby toy. He’s even stood up in the middle of the floor and kept walking completely on his own. It’s mind-boggling to look up and just see Braxton walking right by me to get to a toy in the other room. It’s been a long hard road, but it’s paying off BIG! Braxton’s gross motor skills are taking off. His fine motor still needs a lot of work, but we’re seeing progress. He is starting to babble and vocalize much more as well, which is certainly promising for us. I truly feel that we will have a verbal breakthrough soon and Braxton will have some speech. I know that using his communication device is going to help his language develop as well, so I’m really excited to see how he does. I will write more on our AAC journey as well. (Soon! I promise!!) Lots of exciting things happening there!

Overall, I have been quite pleased with our start to school. It’s still hard to believe that our little guy is actually in school, but it has been wonderful for everyone. He attends Aileen’s elementary school, and she is elated that he goes to the same school as she does. She is SO proud of him and having him in school has even helped her! She worked out an incentive with her teacher and Braxton’s teacher that allows her to go in to his class and read to them every so often. She loves being able to go in to class with him and I’m sure Braxton likes seeing her as well.  I love that everyone is working together for Braxton and am so glad to see him flourishing. My sweet boy is growing every single day and we are full of so much hope for the future.

Here are some other great photos from his first couple of months at school. There are also a lot more over on Facebook page, so hop over there and give us a “like.” You know you could use a little bit more Braxton in your life. 🙂

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Filed under School, Special Needs Child