If you've been following my blog, you know that about a year and a half ago I had a very traumatic miscarriage. I hemorrhaged at 7 weeks and my blood pressure dropped to 63/39. I had an emergency D & C and a blood transfusion. It was the scariest thing I had ever experienced. After that, I decided that we were DONE having children. My body had been through enough and I was completely content with the two beautiful boys that God gave me. I was ready to move on with life and enjoy my family of 4.
About 8 months ago, out of the blue, my husband says to me, "I think we should have another baby!" Ummmm....WHAT? NO! Not happening. He said, "Ultimately, this is your decision because you are the one that has to do it, but I think you should consider it. I think it would be SO great for Weston and Colton to have another sibling. I just think it would benefit our whole family to have one more child. Just give it some thought." So I did. I thought about it for at least a month. I tried to weigh all of the pros and cons of having another child. Some days I was like, Yes, we should do this. It would be a leap of faith. And then other days I was like, NO, what if I have another miscarriage? What if this child has Special Needs? To be very clear here, I want you to know that I absolutely love and adore Colton. Raising Colton is an absolute joy, but that doesn't mean it is easy. It's hard to raise a child with Special Needs and I was just worried that if we had another child with Special Needs, I wouldn't be able to handle it. Colton has dodged a lot of health bullets that another child might not. And once you've had a child with Special Needs, you aren't naïve to the fact that it could happen again. So, I was on the fence for awhile. I just couldn't decide. I didn't want to disappoint my husband by saying No, but I also didn't want to say Yes just because he wanted to have another baby.
One day, I decided that I wasn't going to decide about having another baby. I was going to pray about it and give it to God. I remember my prayer. I told God that I was completely happy and content with the two little boys He gave me. If they were the only two children I was meant to have, then they were all I needed. But if it was His will for us to have another healthy, typical child, then I'd do it....but I begged Him not to let me get pregnant if it was going to end in miscarriage or with a challenging Special Need. After that prayer, I remember feeling a weight lift off of my chest. I was done thinking about having another baby. I was going to enjoy the family I did have and live life. I was going to focus on the here and now, not the future. I completely stopped thinking about it.
2 months later, I found out I was pregnant.
Hunter and I were shocked! We decided not to tell anybody. The first 8 weeks for us are SO hard because we've already had 4 miscarriages. So, we tried not to think about it and to go on with life. When I would get nervous, I would tell myself, "Thy Will Be Done." I didn't want to ask God not to have a miscarriage because sometimes a miscarriage is necessary if the baby doesn't develop appropriately. I just had to TRUST IN HIM. We did get a lot of special treatment those first few weeks because we have a history with the Fertility Clinic because of multiple miscarriages. Side Note: They did Genetic Testing on Hunter and me after we had Colton to see if there was a reason why we had a child with Down Syndrome to help us decide on whether or not we would have any more children. We found out that Colton was just a 1/700 shot. We just hit the Bulls Eye (or the Jackpot, as I like to call it). We were told that based on our age and history, if we decided to have another child, we had a 1/100 chance they'd have Down Syndrome. They told us that if we ever got pregnant to come in for blood work and early ultrasounds. They wanted to make sure I didn't have another traumatic miscarriage like I did the time before. So, we went in every week until we were released to my regular OB. My numbers were looking good and the baby had a heartbeat that eventually reached 162 beats per minute. We felt good about how things were going, but we knew that at 10 weeks we would do the Harmony Test to see if this baby had Trisomy 13, 18, or 21 (Down Syndrome). It was a simple blood test but we had to wait 10 days for the results. It was a LONG 10 days. I spent a lot of time in prayer because it helped to calm my nerves. (By the way, this test wasn't offered when we were pregnant with Colton and we never in our wildest dreams thought it was even possible for us to have a child with Down Syndrome...we were very naïve...but we are thankful Colton was a surprise so we didn't worry the entire pregnancy, however, with this one, we'd like to be prepared).
I'll never forget where I was when the nurse called me with the results. I was sitting on a stool in my bathroom doing my makeup. When she said her name, my heart started pounding. She said that the results were in and that everything came back NORMAL! She also told me the gender, Male, and I laughed when she told me. Of course it's a boy!! I hung up the phone and started sobbing. I called Hunter crying and almost freaked him out, but I couldn't control my emotions. These were happy tears! All of the worry inside me just came pouring out. I didn't realize how much I had been holding inside of my little body.
People often ask me if I'm going to try for a girl or if I wanted a girl. The answer is NO! I absolutely love being a boy mom. I'm a total boy mom! After you've been through what we've been through...GENDER DOESN'T MATTER! How about the fact that we have healthy babies that made it full term! When I hear people get upset over gender, it does rub me the wrong way. There are so many people out there longing for a baby of any gender. People are having miscarriages and stillbirths and infant loss. They would give anything to have a healthy baby, boy or girl. I'm just thankful that this baby has made it so far. I can't wait to meet HIM.
We have a big Level 2 Ultrasound coming up on March 6th. When I think about it, I get nervous. Please pray for us. We pray that this baby has 10 fingers and toes. 2 arms and 2 legs. A healthy heart and lungs and a developing brain, etc... We still aren't out of the woods, yet, but we are hopeful that he will be healthy as can be.
I didn't plan on having Baby #3. Never did I dream that I would have 3 children. Or 3 boys! Or a child with Down Syndrome. But that's the beauty of life. It's exciting and unpredictable, but sometimes challenging and scary. No matter what, I know that God is in control. Hunter and I have been through a lot in the past 7 years, yet here we are, still alive and kicking and happy. No matter the end result...we will be okay! I'm giving it to God. After all, THY WILL BE DONE!
Thursday, February 22, 2018
Monday, October 23, 2017
A Different Kind of Love
There is something so special about Colton. It's a different kind of love. A love that just makes your heart melt and explode and smile all at the same time. It's hard to explain, but it's true. Multiple family members have told me that they feel the same way. I guess it's because we all know that Colton is special. He has special needs and he requires extra attention...and he has to do a lot of things that seem unfair because of that extra chromosome. But 99% of the time he does them with a smile on his face. He is a rockstar. And I would venture to guess that he just might be the family favorite. And I hope nobody in the family takes offense to that...because Colton is just in a league of his own.
These two boys are Colton's cousins, Tyler and Tanner. Their love for Colton is something fierce. They always want to Facetime to see Colton and they LOVE watching his videos. They always ask me, "Aunt Carrie, when Colton comes to visit, can I help put on his pajamas and change his diaper?" They want to hold him and kiss him and play games with him.
My sister has talked to them about Colton having Down Syndrome. Tyler is 6 and is old enough to understand. A few weeks ago, my sister sent me a text about a conversation she had with Tyler. Apparently, they have some friends who are pregnant with a third baby and my sister was talking to Tyler about it. She said, "Tyler, Mommy will not be having a 3rd child. Did you want one?" He said, "Well, no." Then he went into deep thought. He hugged his Mommy and said, "Mommy, the ONLY way I would ever want you to have a baby is if you could promise me that the baby would be JUST perfect like Colton and have Down Syndrome, too. Otherwise, I don't want one."
Y'all, that brings tears to my eyes! How sweet! Even a 6 year old gets it! Even a 6 year old knows how special Colton is.
What is really cool is that Tyler's teacher has a grown daughter with Down Syndrome. How crazy is that?
If you have children, I encourage you to talk to them about children with Special Needs, when you feel the time is right. Teach them about Colton. I want kids to love and appreciate Colton for who he is. They will find that he's more alike than different. He's happy and fun and just likes to play. It just takes him a little longer to learn and progress. And if you have any questions or concerns about how to approach it, please feel free to ask! Your children will benefit greatly from having friends with Special Needs. We are SO blessed to have Colton in our family.
We absolutely adore Colton. What a special gift he is to our family. We are all better people because of him. He has taught us to slow down and focus on what is truly important in life. We are so lucky that we get to experience a different kind of love.
"Nothing is closer to Heaven on Earth than having a Special Needs child in your home." www.leftwithasmile.com
"You weren't like other children,
And God was well aware,
You'd need a caring family,
With love enough to share.
And so He sent you to us,
And much to our surprise,
You haven't been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We're proud that we've been chosen,
To help you learn and grow,
The job that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
But most of all- Real Love."
-Spectrum Superstars
Thursday, October 19, 2017
Swallow Study #3 & ENT Visit (21 months)
I took Colton for his 3rd Swallow Study at the end of September to see if he was making any improvements with his swallowing. He's been drinking liquids thickened to Stiff Honey since he was 2 months old. His Speech Therapist joined me for the appointment so that she could see how he did and ask questions I might not think to ask. I was so glad she was there with me!
We were hopeful that Colton would show improvement, but unfortunately, that was not the case. Colton was able to eat food without aspirating, however, he did aspirate on Honey Thick liquids. He even aspirated on Stiff Honey liquids. He doesn't aspirate every swallow, but he does have some penetrations toward the airway. They think that he might aspirate every 6 swallows or so. Bummer! With aspirations, Colton is at risk of getting pneumonia or a serious lung infection. Since it has been almost 20 months since he started Stiff Honey and he's still showing no signs of improvement, they wanted to refer us to an ENT to have his throat looked at. They think that something other than low muscle tone is causing his swallowing issues. I was a little defeated but I'm learning to take things in stride so only a few tears were shed. Our ENT appointment was scheduled 3 weeks later, so we didn't have to wait long to find answers.
I was warned ahead of time from several friends that the ENT would want to do a scope of Colton's throat. They told me that I needed to prepare myself because it wasn't a pleasant procedure. Luckily, they told me it wouldn't last long. A nurse sat in the chair with a sheet on her lap to wrap around Colton. I warned her that he is a STRONG little dude when he wants to be.
They sprayed his nostrils with a numbing solution and then stuck the scope in his nose to take a video of his throat. I was able to watch the video during the procedure, which was cool, but I had to listen to my boy scream bloody murder. It was SO sad. It only lasted a few minutes and then they were done. It took a little while to calm him back down after the procedure...and the poor kid did have some blood in his mouth.
The ENT thinks that Colton is having trouble swallowing due to coordination issues with breathing and swallowing. Colton's adenoids and tonsils are extremely large and the back of his throat is extremely crowded. He's just having trouble managing everything. Her recommendation is to remove Colton's tonsils and adenoids and trim any tissue near the larynx that may need to be trimmed. She said she can't guarantee that by removing tonsils and adenoids his swallowing issues will disappear completely, but it should help. With continued therapy, he will eventually be able to drink regular liquids. She is concerned that if we don't remove them soon, he could get a lung infection or pneumonia since he's not technically "safe" drinking Stiff Honey thickened liquids. So she wanted to get him on the schedule ASAP.
But we have a problem...Colton is NOT allowed to have any surgery because of his heart. Colton has fenestrated ASD's and his Cardiologist told me back in the spring that if an air bubble were to get in the line of the IV during a surgery, it would kill him. We have a referral in to meet with his Cardiologist. I'm waiting to hear when that appointment will be. She will make the decision on whether or not Colton is allowed to have surgery. In my opinion, I don't think he's going to be allowed to have surgery and I don't know that she's going to want to do his heart surgery now (as opposed to when he's 3 or 4 years old) when he hasn't been very sick. He's been lucky so far! I am super serious about thickening his liquids and I always make them as thick as I can. I even thicken his Tylenol before I give it to him. I do my very best to keep my boy healthy.
So now...we wait. Hopefully, we will meet with our Cardiologist soon and she will make the decision. We would appreciate your continued prayers for our Colton. Pray that the holes in his heart close. Pray that he will eventually be able to get his tonsils and adenoids removed so that he will have an easier time drinking and breathing. Pray for me as I try to be strong and hold it all together. This journey isn't an easy one, but I'm thankful to have a wonderful support system to walk with me every step of the way.
"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to Him, and He will make your paths straight." Proverbs 3:5-6
Tuesday, September 19, 2017
Tone Up
Anybody out there think it would be nice to gain a little bit more muscle tone? Maybe tone up your thighs or your glutes or your abs or your biceps? I definitely think about it. But then I go to the gym and do one workout and I'm sore for days and I have to really motivate myself to go back and do it again. And to gain muscle tone, you kinda have to be consistent. You can't do it once a month and expect results. It takes time, patience, dedication, and consistency to gain muscle tone. But if you put in the hard work, you will reap the benefits.
That brings me to my little Colton. My sweet, low-toned baby Colton. And he's not so little anymore. He's 20 months old and approximately 24 pounds. We need to tone that baby up in order for him to walk! Dude has absolutely no glutes! We need to get that baby some booty muscles. He also could use some leg muscles...and some abs. How do we build that muscle tone? Squats...lots and lots of squats. Sit to stand. Sit to stand. Sit to stand. Weight bear through his legs by practicing standing. Weight bear through his arms by practicing crawling. Bending over at the waist to pick a toy up off of the floor and return to sitting position. Requiring him to support his own body when we carry him from place to place. Colton has mastered the lean. If I lean on Mama, I don't have to support my own weight. He does not help me carry him around one bit. His legs don't even grip around my waist. He just hangs there and lets me do all of the work. Colton is always looking for someone or something else to support his weight (walker, couch, highchair, etc...). But if we want him to walk...we have to make him work. It's sad to make your baby "workout," especially when it's hard for them and usually brings them to tears. But I have to put my feelings aside and do what is best for my child. He will benefit greatly from building muscle tone. And he will thank me later. So...I'm going to push him.
Mama, Daddy, and his PT had a little meeting the other day and we shared all of Colton's tricks. He's one tricky dude. He doesn't want to do the work so he finds ways for other people to do the work for him...why? Because it's HARD! That's the same reason I don't keep torturing myself at the gym...because it's HARD! So, in order for Colton to gain muscle tone, we have to put in the time, be patient, be dedicated, and be consistent. Colton can't just get 3 hours of PT a week and gain the tone he needs in order to walk. I mean, he could, but it would probably take a LONG time. So, we came up with a few things we could do to help Colton gain tone. And it's not necessarily a "workout" session everyday. It's just about being intentional. For example, I can carry Colton a different way. Instead of him hanging on my hip, I can hold him facing out and require him to use more core strength to support his body weight. I could sit him on a backless bench to watch Mickey Mouse as opposed to leaning against my body or the couch. I just need to think about where I'm putting Colton. It's easy just to plop him down on the floor, but is he benefiting from that?
The game changer is Daddy. Daddy came to the meeting and learned about Colton's tricks. Our PT showed us things that Daddy can do with Colton at home when they're "playing." Why Daddy? Because Daddy is stronger. And to be honest, Daddy is more fun. Colton LOVES to wrestle and be rough with Daddy and Brother and some things they do can help build tone. The other night, Daddy got Colton to stand against the wall for 2 minutes straight because he was distracted and laughing as Daddy shot a Nerf gun at the wall next to him. Last night, he had Colton sitting on a bench and had him do at least 30 squats standing up to put a ball in a bucket. There were no tears. Daddy makes things more fun. And I have to say, I'm super proud of my husband! Every night since our meeting, he's made it a priority to work with Colton. He finds creative ways to "play" with him and Colton enjoys it.
If the three of us (me, daddy, and his PT) keep working at this consistently, Colton is going to TONE UP! We are going to give it our all these next 6 months! I'm so thankful for a husband that is willing to help. I'm so thankful for a PT that cares enough to show us what we can be doing at home. It takes a village! It will be SO worth it in the end. By golly, Colton is going to walk. And what a glorious day that will be!
That brings me to my little Colton. My sweet, low-toned baby Colton. And he's not so little anymore. He's 20 months old and approximately 24 pounds. We need to tone that baby up in order for him to walk! Dude has absolutely no glutes! We need to get that baby some booty muscles. He also could use some leg muscles...and some abs. How do we build that muscle tone? Squats...lots and lots of squats. Sit to stand. Sit to stand. Sit to stand. Weight bear through his legs by practicing standing. Weight bear through his arms by practicing crawling. Bending over at the waist to pick a toy up off of the floor and return to sitting position. Requiring him to support his own body when we carry him from place to place. Colton has mastered the lean. If I lean on Mama, I don't have to support my own weight. He does not help me carry him around one bit. His legs don't even grip around my waist. He just hangs there and lets me do all of the work. Colton is always looking for someone or something else to support his weight (walker, couch, highchair, etc...). But if we want him to walk...we have to make him work. It's sad to make your baby "workout," especially when it's hard for them and usually brings them to tears. But I have to put my feelings aside and do what is best for my child. He will benefit greatly from building muscle tone. And he will thank me later. So...I'm going to push him.
Mama, Daddy, and his PT had a little meeting the other day and we shared all of Colton's tricks. He's one tricky dude. He doesn't want to do the work so he finds ways for other people to do the work for him...why? Because it's HARD! That's the same reason I don't keep torturing myself at the gym...because it's HARD! So, in order for Colton to gain muscle tone, we have to put in the time, be patient, be dedicated, and be consistent. Colton can't just get 3 hours of PT a week and gain the tone he needs in order to walk. I mean, he could, but it would probably take a LONG time. So, we came up with a few things we could do to help Colton gain tone. And it's not necessarily a "workout" session everyday. It's just about being intentional. For example, I can carry Colton a different way. Instead of him hanging on my hip, I can hold him facing out and require him to use more core strength to support his body weight. I could sit him on a backless bench to watch Mickey Mouse as opposed to leaning against my body or the couch. I just need to think about where I'm putting Colton. It's easy just to plop him down on the floor, but is he benefiting from that?
The game changer is Daddy. Daddy came to the meeting and learned about Colton's tricks. Our PT showed us things that Daddy can do with Colton at home when they're "playing." Why Daddy? Because Daddy is stronger. And to be honest, Daddy is more fun. Colton LOVES to wrestle and be rough with Daddy and Brother and some things they do can help build tone. The other night, Daddy got Colton to stand against the wall for 2 minutes straight because he was distracted and laughing as Daddy shot a Nerf gun at the wall next to him. Last night, he had Colton sitting on a bench and had him do at least 30 squats standing up to put a ball in a bucket. There were no tears. Daddy makes things more fun. And I have to say, I'm super proud of my husband! Every night since our meeting, he's made it a priority to work with Colton. He finds creative ways to "play" with him and Colton enjoys it.
If the three of us (me, daddy, and his PT) keep working at this consistently, Colton is going to TONE UP! We are going to give it our all these next 6 months! I'm so thankful for a husband that is willing to help. I'm so thankful for a PT that cares enough to show us what we can be doing at home. It takes a village! It will be SO worth it in the end. By golly, Colton is going to walk. And what a glorious day that will be!
Tuesday, September 5, 2017
Down Syndrome
Down Syndrome
When you hear those two words, you immediately have an emotional reaction. Unless you've experienced life with a person with Down Syndrome, I would venture to guess that your first reaction would be sadness. I think that when we told our family and friends that Colton had Down Syndrome, they were sad and heartbroken for our family. That was my first reaction. I was sad. MY baby boy was born with Down Syndrome. Whether you find out your baby has Down Syndrome at birth or as a prenatal diagnosis, it still makes you sad. But I wish I could change that initial reaction. Because Down Syndrome is not sad. Down Syndrome is beautiful. I never knew how happy Colton would make our lives. He is just the sweetest, funniest, happiest most easy-going baby I've ever had the privilege of knowing. Sure, he has off days where he's fussy and doesn't feel well...but 99% of the time he's an absolute joy to be around.
I recently saw a t-shirt that said, "Dinosaurs are scary. Down Syndrome isn't." One of the many reasons I started this blog is because I want people to see what our life is like with a child with Down Syndrome. And to be honest, our life is very normal. Colton is just like any other baby. He eats, sleeps, plays, cries, laughs, and makes dirty diapers. He gets into trouble for touching the fireplace or throwing food or putting inappropriate things into his mouth. I treat him just like I treat Weston. The only difference is that he's delayed. It takes him longer to learn to walk and talk and potty train, etc... But he will get there. He does have a few more doctor's appointments than Weston did and he does have to go to therapy, but even typical kids have to go to the doctor a lot or need therapy for one reason or another. Aside from the health complications, Down Syndrome isn't scary. Down syndrome is a blessing. Colton has changed my life for the better. I've learned to slow down and enjoy milestones as they come. I've learned to accept people for who they are. I've learned to cut parents some slack...we all are just doing the best we can for our children. I've learned that I'm strong. I've learned that life isn't so bad when you're forced out of our comfort zone. I've learned to make new friends.
I'm not going to say that having a child with Down Syndrome is easy. It's not easy. But whose life is easy? In the past few years, I watched people I love go through so many different things. Losing a parent, losing a baby, losing a job, losing a home, losing a spouse for various reasons, losing their health.... Life is just hard. We all have things we struggle with. I was reading a daily inspiration the other day that said, "Glory moments in difficult times are not dependent on our circumstances, but on our focus. Focus on the difficulty and God is difficult to see. Focus on God and glory seeps through the broken places."
When I focus on milestones and the future, I can get really sad about Colton having Down Syndrome. When will he walk? When will he talk? Will he have articulation issues? Will he get bullied? Will he struggle in school? Will he have friends? Will he ever drive a car? Will he live on his own? Will he have heart surgery? Will he feel loved and accepted? Will people treat him differently? And I become overwhelmed and just plain sad. But then I tell myself that I need to shift my focus. Let's not worry about the milestones and the future. Let's focus on how far Colton has come. Colton has head control. Colton can sit up. Colton can clap. Colton can say "Bye Bye." Colton can walk with his walker. Colton can army crawl and boot scoot. Colton can self feed. Colton can drink from a straw. Colton can say "MaMa." Colton is a high-fiving champ (and can now give me Knuckles). Colton can play with toys and destroy a room. Colton has come a LONG way since the day that he was born. No, it's not as fast as a typical kid, but he's making progress. He's learning and growing. And that is what matters. Focus on the good. Focus on what we know instead of what we don't know. I wanted to share some statistics.
Termination Rates for Down Syndrome:
US- 67% (1995-2011)
France- 77% (2015)
Denmark- 98% (2015)
Iceland- nearly 100% (currently trying to eliminate DS completely)
There are a lot of people out there that are given a DS diagnosis and they terminate the pregnancy. And that is heartbreaking. Most of the world does not want a "Colton" in their life. Boy are they missing out. Life without the "Colton's" of the world would be very sad. I hope and pray that my blog has changed your view of Down Syndrome. I hope that if you know someone that is given a Down Syndrome diagnosis, you will encourage them to give that baby a chance. Because that just might be the best thing that has ever happened to them.
My little boy simply has one extra chromosome. God made him extra special. He is so wanted and so loved. Down Syndrome isn't scary. Down Syndrome is beautiful. Life is better with Colton.
Saturday, August 19, 2017
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!
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!
Monday, August 7, 2017
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...
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...
Subscribe to:
Posts (Atom)