School!!

Colton has been doing Outpatient Therapy since he was 4 weeks old. He only qualified for PT for the first year. Next, we added Feeding Therapy and Speech. Then, Occupational Therapy. All summer I've been taking Colton to and from therapy appointments for a total of 7 hours per week. Colton is on our Insurance plan as his primary insurance, but he also has Medicaid (TEFRA) for his secondary Insurance. We pay a monthly premium for him to receive TEFRA. The application process for TEFRA is quite lengthy, and it has to be renewed each year, even though his diagnosis will never change. TEFRA will pay for Colton to receive therapy one of two ways: Outpatient therapy or attending FULL-TIME school (8-3 Monday thru Friday). I chose to do Outpatient Therapy for the first year and a half because frankly, I wasn't ready to give my baby away for full-time school. I knew that I'd be able to work with him at home and I had the flexibility and freedom to take him to and from his therapy sessions. But now that Colton is 19 months, we decided it was time to start full-time school.

Here are the main reasons why:

1. With Down Syndrome, early intervention is SO important. Colton can learn so many things at school just from watching the 9 other children in his classroom. They teach him to be more independent because his teachers cannot do everything for him when they have 9 other children to assist. As much as I try to help Colton, he is my child and I probably do more for him than I should do (like hold his drink cup or spoon feed him or carry him around too much). They have a curriculum at school and they have a central book for the week, they sing songs, they play on the playground, they do art projects, they play with developmentally appropriate toys, etc... There is structure. Colton doesn't have to spend time in his car seat while we drive brother to his things and to and from therapy appointments. Colton gets pulled out of class for ALL of his therapy services, so when I pick him up at 3:00, he's done for the day! I can take him home and just be MOM! And it takes the pressure off of me because as much as I try to be, I am not a therapist! His PT has him sitting in specific chairs throughout the day that help him strengthen his legs and core (which I do not have at home). Colton is getting SO much from attending full-time school.

2. The toddler class at Colton's school has 10 children. 5 children are typical. 5 children have special needs. Colton easily got a spot as one of the children with special needs because not as many children are diagnosed with special needs at birth. It can take until a child turns 3 or 4 or enters a preschool to determine that they might need more assistance from a developmental preschool....or that they could use therapy services. Therefore, the waiting list for the 3 year old and 4 year old classes can be long. We didn't want to wait too long and miss out on a wonderful school.


Last week was Colton's first week of school. I was a nervous wreck. I didn't know how he would do going ALL day EVERY day. I was worried about him sleeping on a cot. I was worried about what to pack for lunch. I was worried he might cry. I was just worried. Giving my baby away all day every day was a hard decision to make when I don't currently work. I wanted to just be selfish and keep him home with me...but I decided not to do that. Why? Because it's not about me. This is about Colton. I have to do what is best for my child....and I know deep down in my heart that Colton needs to go to school. I can't do everything for him. It's just too much. I don't want to be his therapist...I want to be his mom. When he's at school, his therapists can work around nap time, lunch time, absences...and they can pull him for his therapy sessions when the time is right. With outpatient therapy, I have to set times and hope those times work for the day.

So how was Colton's first week? FABULOUS! It brings me to tears just saying that. It was fabulous! It warms my heart SO much to know that he enjoyed his first week. His teacher gives me a sheet of paper with feedback each day and her comments were:

Colton had a wonderful first day! He is an absolute doll!

Colton LOVED music this morning! He also loved painting his school bus!

Colton LOVED playing ball with a friend. He was smiling and laughing! He can really throw! Another wonderful day. He is such a joy!

Colton had another wonderful day! He loved music and art. His school bus project is SO cute!

Colton had an awesome day. Thank you for sharing him with us. He is SO wonderful!


He ate ALL of his lunch every single day. He napped on his cot like a champ! He did not cry when I left him in the morning. I didn't have to sneak out, either. I just gave him a hug and kiss and told him Bye-Bye! He is loving his new school and his new friends. My heart is so happy! I am so proud of Colton! When I picked him up one day, he gave me three kisses on the mouth. He grins from ear to ear when I call his name to pick him up. One afternoon when I was carrying him down the hallway, he said "Ma-Ma....Ma-Ma." My heart about burst! When I sang the Wheels on the Bus (which was one of their songs for the week), he immediately started moving his arms as best he could in a circular motion for Round and Round. His face lit up like...Mom knows what song we sang at school?

It was the best first week and it totally reassured me that I have made the right decision in sending Colton to full-time school. I can't wait to watch him learn and grow this year. It's going to be pretty amazing! Here are two pictures that his teacher sent me this week (don't mind his messy clothes, that means he's having fun!)





Life without Colton during the day is a little strange, but I know that I'll get used to it in no time. I'm enjoying having some "me" time and I'm so ready to see him when I pick him up. It makes our evenings together so much more special. And I can go to bed knowing that we are doing everything we possibly can to help Colton become as high-functioning as possible!

Big Brother

One thing that I haven't talked about much is Weston, Colton's fabulous big brother. Weston was only 3.5 years old when Colton was born. His grandparents brought him up to the hospital soon after Colton was born. We introduced Weston to his little brother and of course, he loved him. However, Weston acted a little funny that day. Maybe he was jealous? Maybe he didn't like seeing Mommy hooked up to a bunch of wires? Or maybe he was scared because the grown-ups were crying? We tried so hard not to let him see us cry...but it was really hard. It was such an emotional day. We sent him home with grandparents so that we could have time to process the diagnosis. But by Day 2, we were ready to see our big boy again...and the initial shock had worn off (a little)...and it was time for Weston to love on his baby brother...







Weston absolutely adores his baby "buther." We decided that we weren't going to directly tell Weston about Colton's diagnosis until he started asking questions on his own. We wanted Weston to just see Colton as his baby brother. We didn't think he was mentally ready to comprehend something like Down Syndrome. We don't hide it from him, though. We talk about Down Syndrome in front of him. He knows that brother goes to a different school and he has teachers that help him learn to walk and talk and play. He thinks brother's school is awesome because of the gym. It has a trampoline, rock climbing wall, lots of swings and bikes, balance beam, ball pit, and foam pit. He has asked me if he went to brother's school when he was a little baby and I tell him, "No." But he doesn't dig deeper so I just let it go.

It's been 1.5 years since Colton joined our family and Weston still has not asked about it. I do think a part of him knows that something is different about his brother. Not in a bad way, but sometimes I can see the wheels turning in his head. For example, Weston has seen several little kids that are walking who look smaller than Colton. He will ask how old they are. When he hears they are 1, like his little brother, he says, "Our baby can't walk yet." I think he knows that Colton is behind a little...but only when we are out and about and he sees other babies. Weston is such a great big brother to Colton. He is very patient with him. He shares with him. He hugs and kisses him and helps him put his glasses back on when Colton takes them off. He will grab a walker and say, "Colton, look at me. This is how you walk." Or "Colton, look, this is how you crawl." He claps for Colton if he sees him self-feed. He will yell, "Mom, Colton just said Da-Da!!!!" Weston is so sweet to him...and it completely melts my heart. I can't wait to watch their relationship grow. I think it's gonna be so special. Nobody makes Weston laugh harder than Colton....and vice versa.

So now, I'm still waiting for Weston to ask about Colton. I think we are getting closer because Weston is about to turn 5. He's very smart and curious. I've spent lots of hours thinking about what I want to say to him...how I'm going to explain Down Syndrome. And I think I'm just going to be extremely straight-forward. Weston loves numbers, so I'm going to explain to him that we all have these little things in our bodies called chromosomes. Mommy, Daddy, and Weston have 46...but brother has 47. One extra chromosome that makes it harder for brother to walk, talk, and learn...but it makes brother extra special. God made brother special. And we are so very lucky to have such a special little boy in our family. A little boy who needs us to teach him how to do lots of new things. And God knew that you (Weston) would be the best big brother for Colton.

I keep praying that God will give me the words to say when Weston asks about his brother. But I know it won't change the way he feels about him. Colton hit the jackpot in the brother department. He is so lucky to have such a smart, sweet, patient, and funny big brother. In this picture, you can just see the adoration...

Keepin' It Real

I started this blog to share our journey and to inform people about Down Syndrome. But I also do it because it's therapeutic for me. It helps me to express my thoughts and feelings about having a child with Down Syndrome. Most days are good, really good. And I laugh and play and work with Colton...and he just melts my heart. But every few months or so, I have a day where I'm just defeated. I'm just tired....physically and emotionally. I don't want to have to worry about milestones or therapy sessions or how to motivate my child to do things. And I just have a long cry session...usually in the shower. Today is one of those days. I just want him to do what an 18 month old does. I just want to play with him and not have to feel guilty for not making him self-feed or hold his own juice cup or practice standing or strengthening his core. There are nights when I think back on our day together and I wonder if I did enough. Because I do have days when I don't do much "therapy" with him. I just let him be a kid and play like he wants to play; but then I get mad at myself because I do need to push him. Colton will not push himself. He's content just living how he's currently living. But I want more for him!

Another parent of a child with Special Needs recently said to me, "It's such a fine line we walk, pushing our boys to reach their potential but also accepting them just as they are." And it's so true. It's hard to find the right balance.

What is boils down to is that I just want the best for my child! I want him to be as normal as possible. I want him to walk and talk and play and have friends and learn and get a job and feel independent and loved and accepted. I want him to be the BEST! And he will be...but it just takes so much time and patience. I'm not only caring for my child and disciplining him and keeping him safe...I'm teaching him how to do EVERYTHING! And it's overwhelming and some days it just weighs heavy on my heart.

But tomorrow is a new day. And I'll be just fine. A good cry session is always good for the soul. I just need to focus on how far we've come...and not how far behind we are.

Now, excuse me while I go love on my little guy. Because nobody cuddles better than him, nobody kisses better than him, and nobody makes me feel more loved than him.

HE IS WORTH EVERY TEAR, EVERY HOUR OF LOST SLEEP...HE IS WORTH IT! AND HE IS MINE!




"Don't forget that you're human. It's okay to have a melt down. Just don't unpack and live there. Cry it out and then refocus on where you are headed."

18 Month Checkup

Friday morning, Colton had his 18 month checkup! He is still on the typical growth scale, so that's good news! His growth is starting to slow down, but she said that's normal for his age. Adults with Down Syndrome are usually pretty short, so I wasn't surprised to see that he was in a lower percentile for length. The biggest celebration for me is that his HEAD grew (1/4 inch)! Yay! Last time we went, his head hadn't grown and I had to go see a specialist. So, I just wanted to see some growth!
Here are his stats:

Weight: 23 lbs. 12 oz. (39th percentile)

Length: 31.5 inches (13th percentile)

Head: 18 1/4 inches (19th percentile)

It was a pretty easy checkup. Colton will stay on Zantac for his reflux. If he doesn't take it, I can tell that it starts to bother him, so I'm glad it does help. We are requesting a repeat Swallow Study to see if he has any improvement in swallowing liquids. Right now, I thicken all liquids to Stiff Honey. I know we won't be able to come off of thickeners completely, but it would be nice if we could just thicken to Honey or Nectar. His Speech Language Pathologist wants to come with me to the Swallow Study so that she can talk to the tech and ask questions that I wouldn't think to ask. If he still needs to thicken to Stiff Honey, then we are going to request an appointment with an ENT to see if there is something else going on with his throat other than the low muscle tone. Hopefully, the Swallow Study will happen at the end of August or early September.

Colton still only has 3 teeth (2 on bottom and one on top), but a few more are in the works right now. I'm SO ready for him to get some more teeth! I feel like he's been teething for months...and months...and months! Colton is a really great eater and will eat anything I feed him...but I have to feed it to him. I've tried to get him to pick things up and put them in his own mouth, but he just hasn't been interested. I finally decided that I had to find something that he REALLY wanted to eat. I went with something that I'd want to shove into my own mouth.....BROWNIES...and it worked!!!!!!!! HALLELUJAH!!!! I've never seen him so motivated to self-feed. Since then, he has fed himself pieces of grilled cheese and puffs. So we are making progress! And he can also hold his own cup! Yay! At least now I know that he can self-feed and hold his own cup if he wants to...he's just a mighty stubborn little dude, at times. Why feed yourself when mom will feed you if you make her wait long enough??? Hehehe.

Overall, his checkup went really well. I was very excited not to have a bunch of new doctors to go see. We will have our annual Genetics appointment soon and our repeat swallow study, but hopefully, that's it for a few months! Please continue to pray for Colton's heart. I pray that the holes in his heart close so that my sweet boy won't have to have open heart surgery in a few years. God, please close the holes in Colton's heart!!!

I just can't even begin to describe the love I have for this little boy. He is the sweetest, most loving, easy-going, happy baby! And I call him a baby because he is still very much a baby. The kisses, cuddles, and smiles that I get from him are the best! I feel like I'm looking into the eyes of an Angel when I'm with him. I never knew how happy this little boy was going to make me. Not a day goes by that I don't thank God for him. He melts my heart and is SO loved by my entire family. I'm thankful that God knew we needed him even before we knew it.

If you follow me on Instagram, you know that I post a lot of videos and pictures of him on a regular basis. If not, you're welcome to follow me @carriescott22. Here are a few pictures of my handsome little man taken in the last month...













In the last few months, Colton has really come alive. He has such a funny personality and has started actually playing with toys, rather then just throwing them. He especially loves playing with big brother's toys! He LOVES watching Mickey Mouse Clubhouse and will whip his head around to see the TV if he hears it first. He finally decided to start clapping....I'm not sure why it took so long but he decided he finally wanted to. He is army crawling all over my house and getting into trouble! I can tell that he's getting more body control, which is great! He loves emptying out my laundry basket and "helping" me with the laundry. He is starting to mimic more words. So far he's said ball, up, down, Mama, Dada, yeah, yay, bye bye, and more. The other day he even tried to mimic "brother." We are very proud of our little man!

Colton, we love you so much! Keep working hard!!!

18 Months!

18 months ago, the most precious soul joined our family.



Colton is the most easy-going baby. He's pretty much up for whatever we do as a family. When he was born, we were afraid we might be more limited in what we could do as a family because of his Special Needs, but we've quickly learned that is just not the case. We take Colton with us and let him experience everything Weston did as a baby. Colton is not afraid of water, he enjoys playing rough with daddy and brother, he is not startled by loud noises, and he's always up for new adventures. His latest adventure was this past weekend....



Oh, yes we did take that sweet boy tubing! And he absolutely LOVED it! I wish we could've zoomed in a little more on his face because he had the biggest smile! He also loves swimming and riding in the boat.



His prescription sunglasses are kinda my fav. They were expensive, but totally worth it. He owns more expensive sunglasses than I do!



At 18 months, Colton is still army crawling everywhere! He loves the fireplace and gives me the biggest smile when I tell him, "No!" His legs are getting stronger and he can pick us his feet to move them forward when I hold his hands to "walk." His legs are strong enough, but his mid-section is super loosey-goosey. The dude is like a noodle and he is just not stable when he "walks." His PT is ordering basically a unitard for him to wear under his clothes. It makes me laugh when I think about it. We are going to try to see if this will help him hold the middle together...much like spanks. We are anxiously awaiting for it to arrive. Haha. We aren't quite four-point crawling. I think Colton could do it...IF HE WANTED TO! He seriously fights not to do it. He can be SO strong and stubborn when he wants to be. Most days, he gives his PT a hard time. She works hard for the money....so hard for the money! He fights her during the hard stuff, and smiles at her during breaks. What a turkey!

Colton's new trick is to do, "Up, Down, Up Down, Up Down," with his arms. His daddy will say, "Up!" Colton slowly raises both arms up over his head, and as soon as daddy says, "Down!" he throws them down and smiles. It's so cute. They do it over and over and over. We don't have to show him how to play anymore...all we have to do is say the words and he knows the game. Sweet boy is learning! Speaking of words, his Speech Therapist and I think he's starting to say a few words. Last week, he said, "More." I've heard him say, "Ball," when we play ball. He can say, "Mama and Dada," but I can't be sure he associates them with meaning. My mother-in-law asked him if he wanted some juice the other day and she swears he said, "Yeah!" So it's good to see a few attempts at talking. Yay Colton!

We are still working on self-feeding. He can hold his own cup and squeeze pouch, if he wants to. He can pick up a piece of bread and put it in his mouth...but again, if he wants to! He's very capable when he's not being STUBBORN! I've been letting him help bring his spoon to his mouth and he's doing really well with that. He's throwing less food than before, so that's progress, too. He really will eat whatever I make for him...he's not picky! He can eat soft solids, which gives us a lot of options! He only has two bottom teeth and is starting to get one top tooth. So we are about to have 3 teeth! C'mon teeth! You're taking your sweet time!

Overall, Colton is doing really well. He is the busiest 1 year old I know! He goes to gymnastics on Mondays, therapy for 2 hours on Tuesday, therapy for 3 hours on Wednesday, therapy for 2 hours on Thursday, and he did an evening swim lesson in June. Colton will start full-time school soon. I really think it's the best thing for him. Early intervention is KEY in children with Down Syndrome. They usually plateau around age 12 or 13 (from what I hear), so it's so important for him to get help now! And Mama could use a break. Like seriously, I'm about to go to the doctor for my left wrist from carrying a 24 lb. weight everywhere I go...I've been in a lot of pain, lately. Most 18 month olds can walk, but I still have to carry him all of the time...but it won't be long. He WILL walk eventually.......and that day will be oh so exciting!!!!

Happy 1/2 birthday, Colton! We love you so very much!

Patience

Over the past 17 months, I've learned a lot of things. I've learned about Down Syndrome, the heart, swallow studies, low tone, occupational therapy, physical therapy, speech therapy, feeding techniques, Medicaid, etc... It has been quite an educational year. But I would say the hardest thing I've had to learn this year is...Patience.

Most kids are quick to grow up. Those milestones come so fast in that first year and before you know it you're chasing around a one year old who has a rapidly expanding vocabulary and you just want time to SLOW down! I experienced that...with Weston. He was running by 11 months and climbing out of his crib and constantly giving me heart attacks. And I was so tired and stressed out from chasing him around all day, every day. I didn't realize it then, but I didn't really appreciate how quickly he was reaching those milestones. And then God gave me Colton. And he is completely the opposite of my Weston. He does things at his own pace. Raising a child with Down Syndrome requires lots and lots of patience. There are days when I'm really good at being patient. But after a few weeks or months of working on the same skill, I begin to lose that patience. And it never fails that when I'm almost at my breaking point, Colton learns a new skill. And it may not be a big milestone like rolling, sitting, crawling, or standing, but it's a big skill for Colton....and it gives me that boost I need to keep on keeping on. And I know that is God's way of telling me..."It's ok, Carrie. See, he's getting there. Just be patient...just be patient."

The other day, Weston wanted to look at some old pictures on our computer. We came across pictures of Weston at 17 months old...and all of a sudden, I got really sad. I spent the whole day a little down in the dumps because I forgot where Weston was at 17 months. And I know that I can't compare my kids because it's not the same, it's not fair. It's like apples and oranges. But it still stings a little. Deep down in my heart, I know that Colton is going to four point crawl and pull to stand and walk and clap and sing and talk and run and jump and ride a bike....but it's just going to take a lot longer than it did for Weston. So there comes that word again...PATIENCE. Patience is hard for a person who likes numbers and timelines and plans...and I have to throw all of that out of the window while raising Colton. But that's ok...I'm learning. And when I get totally overwhelmed and stressed out, I pray about it and I remind myself of how far Colton has come in the last 17 months. He used to not be able to get his legs off of the ground while lying on his back because his abs were so weak. Now, he can bring both legs up toward the ceiling and slam then down on the ground like nobody's business. He likes to do that in the pool, too, and make a big ole' splash.

At 17 months, Colton sits really well. He loves to spin circles while sitting on his bottom. He can army crawl all over the house. His latest milestone is pushing himself up from laying to a sitting position (who knew that was a milestone? Don't kids just naturally do that?). He can hold his own sippy cup and squeeze pouch. He can blow kisses, when he wants to. He is a champ at giving high fives with both hands. He can turn the pages of a book. He can stand for longer periods of time, but be careful because when he decides he's done, he's done and will come crashing down. He's eating really well and sleeping really well. He has the cutest little personality and messes with me all of the time. He loves to throw things off of his highchair and even though I give him a stern "NO!," he will look me right in the eyes and slowly take that toy to the edge of the highchair and release it. He thinks that's funny! Mommy keeps a straight face and disciplines him, but I'm laughing inside. Because I LOVE to see that he's being intentional about that. He knows better! He does the same thing about taking off his glasses or crawling to touch things he's not supposed to touch. It really is hilarious! Colton is a babbler. He makes all kinds of sounds. His Speech Therapist said his babbling is progressing...so that's good! Colton will mimic me if he's in the right mood (sounds or faces or actions). And he is just the biggest lover. He loves to kiss and cuddle. Because of his low tone, Colton is the squishiest little guy. We call him our "Fluffy Marshmallow." Nobody hugs better than Colton! We are pretty fond of the little guy. I'm pretty sure he gets the top spot in being the family favorite (wink, wink).

Raising a child with Down Syndrome is really challenging...and it requires a lot of PATIENCE...but it is the most rewarding thing I've ever done. Nobody needs me more than Colton. Nobody loves me more than Colton. Colton is going to crawl and walk and talk...and he's going to do great things...it's just going to take time. In the meantime, we will continue to love him, practice with him, support him, and celebrate him.

The Lucky Few

This book came out last month, and when I heard about it, I knew I just had to have it. Today, I finally made my way over to Barnes & Noble to buy it. I've only made it through the first chapter and I already love it. I can't wait to read more. If you are fostering, adopting, struggling with infertility, or parenting a child with Special Needs, this book is for you. But really, I think anyone can find a way to relate to this book as it is about "Embracing the Gift of the Unexpected." And I do believe that unexpected things happen to all of us.

"The Lucky Few..." I hear those three words used a lot now that I have a child with Down Syndrome. And I have to admit, that on the day of Colton's birth when I first heard his diagnosis, I didn't feel so "lucky." I felt sad and cheated. My life was this beautiful vase...just what I always wanted...and in an instant, that vase was thrown to the ground and immediately shattered into a million tiny pieces. I didn't know how I was ever going to pick all of those pieces up and put them back together. I was so angry that my vase was broken...I didn't want to have to fix it. And the harsh reality was that vase was permanently broken...and it would never be the same. So...I had two choices: leave the broken pieces all over the floor and wallow in my sorrows, or put the pieces back together and create a different, but equally beautiful vase. Obviously, I chose the latter.

In this book, the author, Heather Avis, says, "I didn't know then that easy and normal and nice would do little to build my character or make me a better and more complete human being. Somewhere off the rose-petal path where easy, normal, and nice bloom, true beauty lives in the muck. But only the lucky few of us who step off the path will find it. My luck began when God picked me up off the comfortable path I had paved for myself and drop-kicked me into the mud. In the beginning, all I wanted to see was the grime on my clothes and the dirt on my hands. But because of God's grace, I finally stopped looking for a way back to my own plans. And the farther I stepped from that pretty path of easy, normal, and nice, the more clearly I could see the beauty he was creating all around me."

Colton's diagnosis was the hardest thing that's ever happened to me...but it's also been the best thing that's ever happened to me. I never knew how strong I was. I never knew how much I needed God. The only way to survive this is WITH HIM. I trust that His plans are greater than my plans. My relationship with God has strengthened so much throughout this journey. Almost every Sunday during worship, my eyes well up with tears and I get a knot in my throat...but not because I'm sad...because I'm so thankful that He knew how much I needed Colton. If I was the author of my story, Colton wouldn't have been in it...and now, I can't imagine my story without him. God knows best....and at times, we don't know how He's going to take our current struggle and make it into something beautiful...but He will. You just have to Trust Him and be patient.

My sister-in-law sent me a text last week after Colton's Cardiology appointment. It was one of the sweetest things anyone has ever said to me about Colton and my blog. She said, "I appreciate your blog more than you could imagine because it strangely makes me feel more connected to God. Colton's smile and seemingly unaffected spirits demonstrates His presence more than I have ever experienced. It's like Colton knows something we don't. Looking into your child's beautiful smiling face tells me that he's going to be just fine and God has a plan in action that we can't quite see yet."

At the beginning of this journey, I didn't feel so "lucky." I was forced "off the comfortable path" and led into the unknown and I was terrified. But it has inspired me to share Colton's story and life with you through this blog. And I hope and pray that it helps you to feel God's presence like it does for my sister-in-law. I have come to realize that when I gave birth to Colton, I actually hit the jackpot...and I am forever inducted into a club that goes by the name, "The Lucky Few."