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...