It’s been a long road to get to where we are now. From being brand new parents, not really knowing what to expect. To having a 9 1/2 year old boy with a rare genetic disorder. Cayden has brought us much joy, sometimes in the middle of a rough patch it is hard to remember that.
It has been a journey and along the way we have met other families that also have children with rare disorders. I think the hardest part as a parent is not knowing what to expect. I had a friend ask me what it will be like for Cayden in the upcoming years. Honestly, I don’t have a clue. The genetic disorder that Cayden has affects his 7th chromosome. There aren’t a lot of other children or adults with Cayden’s exact duplication. In fact I don’t think I found one that is exactly the same.
This makes it really hard to know what to expect in the coming years. We are planning on having Cayden live with us for as long as possible. We haven’t decided on how to do that yet, but would like to find a place with some land so Cayden can have his own space.
What’s really amazing is to see how far Cayden has come. In the first couple of years, Cayden struggled to learn to crawl and eventually walk. He had very limited speech and had trouble with gross motor and fine motor skills. Now, he is able to button his own pants, make himself a bowl of cereal, run and play with his brother. He can read, do math, communicate with others. He has really come a long ways in the past few years.
I try not to forget that. When he has a rough day, it seems like he still has so far to come. But in reality, he has already grown so much. I’m excited to see how much he’ll grow in the next couple of years and to see where we will be in another nine years.
I was in a meeting for new teachers recently and saw a quote on the wall of the classroom we were meeting in. “Attitudes are the real disability”. This has had me thinking about that for the past week. How important is our attitude as parents, teachers, friends, family, etc. to those we care for? It made me think about my attitude towards my son. Am I enabling him to succeed through my attitudes towards him? Or do I display a negative towards his “disability” and what I think he can do? Do I have an attitude that he won’t be able to succeed at certain activities before he even tries them? Do I have an attitude that doesn’t let him explore or be himself?
Attitude can be defined as “a settled way of thinking or feeling about someone or something, typically one that is reflected in a person’s behavior.” It really made me think not only about my son but also as a new Special Education Teacher. Am I selling my son, my students short? Am I not encouraging them enough? Challenging them enough?
I look at the picture above and see a little boy who is happy. He brings joy into almost every situations. I don’t want to affect his attitude towards himself to be anything less than joy. I don’t want him to think he isn’t perfect. I realized that my attitude towards him needs to be even more loving and encouraging. I need to keep challenging him to be himself and enjoy life.
Sometimes when we label a child as having a disability, we work so hard to get them to “normal”. We take them to therapies, appointments, doctors, hospitals, and anyone else who can help them. But what if they are already perfect? What if God didn’t intend for them to be what the world deems “normal”?
As a parent I understand helping our kids become independent and able to function in society. But at what point do we say forget the academics and rigorous schedules? There are days my son doesn’t get home until 6. That’s almost a 12 hour day. At what point do I let my kid be a kid? It’s a tough place to be. I know he needs the help of everyone of his doctors, therapist, teachers, etc. Is there a better way to do education and therapy than what we are currently doing?
What if there is a better way to teach our kids to learn? A better formula to balance school and therapy? How do we allow our kids to be kids and still improve their independence?
I often wonder what Cayden is thinking. What does he think about me? What would he say to me that could help be a better dad? What does he really like and really enjoy doing? In the picture above he is playing “Lego Game”(Lego Marvel Super Heros). He loves to play and act out what is going on in the game. To his teachers I apologize. He began the school year Hulk Smashing. Probably not a good game to teach appropriate behavior.
But what does my son love beyond a game? I think the most important thing we can do as parents is come alongside what our kids love the most and love it just as much. At dinner we pray for the Marvel character that he chooses. How do I embrace what he likes and make him feel important?
I think it can be too easy to look over what he really enjoys. It’s hard to play a game with someone who doesn’t play by the rules and always ends up Hulk smashing your super hero. But I should play with him more. I should do what he loves more. Our attitude really defines the power of the perceived disability.
If we look at the situation with hope and by supporting our children then we are likely to find success and joy. If we look at the situation with grief and limit our expectations we are going to struggle.
It’s not easy knowing your child has a disability and won’t be looked at as a “typical peer”. That your kid is more than likely going to be the “odd” one. That your child may not be able to ever live a normal life. By no means does Cayden have it bad. He is overall healthy, he can feed himself, run, see, hear, laugh.
My heart goes out to those whose children can not do those things. Whose children need attention 24/7. The attitude there is grief, but I almost guarantee if you talk to those parents they are in love with their kid.
I think as parents we can accept the reality of the disability without stunting the growth of our kids. I am expecting Cayden to live with us into adulthood. But that shouldn’t stop me from trying to teach him how to be independent. My job as a parent doesn’t stop because of his disability. My job to teach him how to throw a ball, ride a bike, swim, read, write, talk, doesn’t stop because of his disability.
It means I find joy in the situation and push aside frustration, anger, disappointment, sadness, fear, shame, embarrassment. My son is a joy. My son is a goofball. My son is smart. My son is my son. My son is Cayden.
I’m sure many of you have heard by now of Leo, the little boy born with Down Syndrome. If not I would encourage you to read it here.
Leo Forrest
Leo was born with Down Syndrome, a disability affecting the amount of chromosomes a child has. A child with Down Syndrome has 47 chromosomes instead of 46. I don’t have a child with Down Syndrome, but I would not say it is a huge problem. A child with Down Syndrome in my experience is happy, loving, care-free, and full of life.
Again, I don’t have a child with Down Syndrome, so I don’t know the full details and how life is with Down Syndrome. But this story hit me. My son was born with a genetic disorder and never once did we have the thought to give him up.
This story is from Armenia, a country that once belonged to the Soviet Union. I don’t know if this impacts their thinking, but I do know their view of children with disabilities is a very sad one. They (the hospital) give parents the offer of giving their disabled children to an orphanage. Imagine, waiting 9 months to meet your child and in an instance your built up love for them is gone due to what you view as an imperfection.
I commend the Samuel Forrest, the father of Leo, for choosing his son. That had to be a very hard decision. Your wife who you love, or your newborn child. He made the right choice and I can’t wait to hear in the future how his relationship with his son grows.
After reading this story I stumbled onto a new twitter push, #IMREADY. It’s a push for children with disabilities to more prevalent in media. I think that would be great, but it would need to go further than that. America needs to ensure that special education programs in schools work towards inclusion and education of peers.
I believe the biggest issue in our schools today is a lack of support. Not just for the students, but also for the staff. Children don’t always need a one on one aide, however they do need direct education and that one on one time during the day. We sometimes try to get by with just enough staff that meets guidelines. While these guidelines are helpful, can’t we do better than that? It would be great to see peers come alongside students with disabilities and look at them as equals instead of someone to avoid.
The first step starts with staff and it starts early on. If you haven’t been around children with special needs you don’t know how to react to them. You may be uncomfortable and hesitant around them when you are approached. Children pick up on this and will react in the same manner. When that happens we have a generation of children growing up avoiding their peers with special needs.
I don’t think we need to force interaction, however we do need to ensure children with special needs get to enjoy the same privileges as their peers. If we can educate kids at an early age and show them what they can do to help, they can carry that into their adult lives.
This story is a great reminder that there are places around the world who still do not accept children for what they are. There are still people out there struggling to accept something seen as different. I hope that the mom will someday come around and realize what she has missed. Good luck to Samuel in what will be a tough but worthwhile journey with his son.
The other night we were over at a friends house. There were several other couples there as well with their kids. Lizzy and I know and understand that Cayden is different. This isn’t an issue for us, we love Cayden just the way he is. However, with his “difference” there are times where you can feel sad for your child. I would assume it’s a normal feeling for parents with children with disabilities. We as parents have expectations for our children. I had expectations for my first son before he was even born. I wanted to play catch with him in the backyard. I wanted to see him run around and have fun. I wanted to take him fishing, take him camping. I wanted to teach him how to ride a bike, and do jumps with his bike. However, those are the things I wanted for Cayden, not what he wanted for himself.
Back to our friends house. All the kids were playing together upstairs, well almost all of the kids. The two 1 year olds and Cayden were downstairs. The other kids didn’t leave Cayden out, in fact they interact with him fairly well. Cayden just loves books and the bookshelf just happened to be downstairs. Books were coming off those bookshelves faster than the latest technology at Best Buy. He was enjoying the new books and finding his favorite ones about Thomas the Tank Engine. Then dinner was ready, all the children were excited to eat, all except Cayden, he was so focused on the books and his new favorite toy. Cayden has a fascination with windshield wipers, he wants them on rain or shine. This toy had windshield wipers, he could turn them on and off all he wanted.
After the kids were done eating the older ones were playing on the Wii and the younger ones were playing together. All the kids except Cayden. He lay in the other room by himself. Himself and his new toy with the wipers. He laid there watching the wipers going back and forth. This made me sad, I thought to myself how great it would be to see Cayden playing with the other kids, cracking jokes and laughing at the game. Doing the things a “normal” almost six year old would be doing. I was sad for him, sad that he was alone on the floor playing with a toy. But here is this boy, perfectly content watching the wipers go back and forth. He wasn’t sad, he was happy, happy to be who he is.
How many times do we as parents try to make our kids what we want them to be. How many times do we get in their way of their dreams. Think about that, have I caused any of my children to give up on a dream. I don’t want to be the one that tells my kid that his dream is too big or unattainable. I don’t want to be the one that tells my kid to give up, to settle for less. I want to be the one that encourages Cayden to do what he loves. Even if it’s not what I want, if he is happy that is enough.
Raising a child with a disability can be tough, it is tough. However, it is also a joy. Not a day goes by that Cayden doesn’t make us laugh. He is a fun little boy that is constantly on the move and constantly looking for new things to learn. He has started to pick up new words from school that he brings home. He can now say: hello, go home, ham, hi, yellow, along with several others. A random set of words, but words none the less. Since his genetic disorder is pretty rare we do not know what his future really holds. I hold out hope that his brain will make the right connections and he will continue to increase his verbal language. I know he gets frustrated when he can’t communicate with us and with his friends. He uses his Dynavox to say what he wants, but he has yet to master it to use it for communication beyond that. My hope would be that he can use his device to hold conversations at some point. Ultimately I would love for Cayden to not need a device, I would be so happy to hear him carry on conversations with his brother.
But if Cayden never does speak beyond simple words I won’t be disappointed in him. I will still love him and support him in his journey of being himself. There is none like Cayden, out of all the children in the world, there is not a single one like him. He is truly himself.
How many of us parents try to do much to protect our children? We all try to protect our children, but when do we let them go? This issue intensifies with a child with a disability. Cayden does a pretty good job in almost any situation. But sometimes when it’s a new situation we like him to stay with his brother. Recently we were at a function that provided childcare and we were just going to keep the boys together. However, for whatever reason this wasn’t possible and it really hurt me and Lizzy.
Cayden isn’t potty trained or verbal and we were asked to take him somewhere that didn’t provide diaper changing, we would have to leave our function to come get Cayden. We asked if he could just stay with his brother but it wasn’t allowed. It probably wouldn’t have been that big of a deal and probably isn’t, the night went well and there weren’t any issues. But when you want what you think is best for your child and it isn’t allowed it hurts. We felt we knew where Cayden would fit in better and where he would have more fun. I almost felt like lying about his age so he could stay with his brother.
Sometimes with Cayden we try to protect him from things we feel he either can’t do or wouldn’t want to do. In reality we should let him do whatever he wants to a limit. But the fact is he scares us. We can’t leave him alone on the playground because first, he doesn’t have fear, and second isn’t always the most stable. He’ll march up the stairs on the playground grab the opening and lean out. Now he hasn’t fallen, but it scares us. We could say no to playgrounds to protect him, but we’ve learned that we just need to be close by in case he needs us.
We try to protect him from other kids. Since Cayden can’t talk and likes to “screech” it causes other kids to stare at him. We usually try to be there to help him say what he wants or what he is trying to do. ” Bee Bee” is Veggie Tales, which no one else will know until they get to know Cayden. Some of the signs he does have aren’t the traditional sign which make it hard for others to understand him.
The fact is Cayden knows how to do a lot and we need to let him do a lot. The hardest thing will be letting him do what he wants and staying out of his way.
Our first son was not expected, my wife and I were just married and both still in college. When we found out we would be expecting we were both kind of shocked. We weren’t sure if we were ready to accept the challenge, we had only been married for a couple of months and were living in a small apartment without air conditioning. We were now given the task of preparing for a child and keeping up with school.
We found a local doctor and starting making our monthly visits. During all of these visits there wasn’t much out of the ordinary. Nothing to be alarmed of, everything was going really good. It was early morning June 18, 2008, my wife’s water had broke and we needed to head to the hospital. We didn’t have everything packed so getting out the door proved to be a bit of a challenge. Luckily we were only 2 blocks or so from the hospital in a pretty rural area considering other cities in the US. We made it to the hospital around 5:30 that morning with most of our things.
Where our son was born
Now this was the same hospital that I worked at, luckily. So I was very familiar with where to park, where to go, and which room would be the best. We got there and were put into a room and began the wait. We had taken a birthing class and tried to remember all that we had learned. We pretty much figured out that we hadn’t learned a ton, or at least couldn’t remember anything besides how to breathe funny.
We tried to patiently wait for Cayden, our first son to enter the world. We picked his name out only days before. We loved the meaning of the name, friend or companion. To this day he has lived up to his name, it fits him perfectly. So while we waited for Cayden to come we had some family there for a short while. During the contractions my wife had to wear oxygen because Cayden’s heart rate wasn’t recovering as well as it should have been.
We weren’t all that concerned at the time, mostly due to us not realizing what was going on. The nurses didn’t tell us what they were thinking which was a good thing at the time. However, when Cayden did come out, the umbilical cord was around his neck and he was “blue”. Our doctor stated that he wasn’t blue and that she had seen much worse. It made me feel a little better, but when they couldn’t get him to cry I started to realize something was wrong. They worked on him for some time trying to get him to breathe on his own. Eventually he let out a small cry, enough that we started feeling better.
Cayden in the Nursery
He still wasn’t breathing well enough on his own so he needed to head to the nursery for further watch. So that evening we were alone for the most part. Cayden was in the nursery and we were in the room. We were able to visit and look at him, but he needed to stay under the oxygen hood so he could breathe. It was and is sometimes still sad to look at the pictures from that day. Sad because he had such a rough entrance into the world.
Since the birth was relatively quick and the pushing only took 20 minutes or so, the doctor stated he was in shock and that was part of the issue with his breathing. After 24 hours Cayden no longer needed the hood for breathing and was managing breathing on his own. By the next day we were able to hold him and try to feed him.
His troubles didn’t stop there, he started to develop Jaundice and we had to stay in the hospital extra days while Cayden stayed under the billiruben lights. We spent a total of five days in the hospital before we could go home.
My mom is a Speech Language Pathologist and when Cayden had trouble feeding she noticed that his tongue was a little “tight”. This tongue issue made it hard for him to feed which added more stress to us. We talked with our pediatrician about this issue but he felt that Cayden was okay and his feeding would improve with time. It never did and eventually we were able to get an appointment with an ear, nose, and throat specialist. She noticed right away that Cayden’s tongue needed to be cut so he could have better control of it.
Getting ready for surgery
So we scheduled a time to go to the St. Lukes in Downtown Boise, Idaho. They are the main hospital in our area when it comes to children’s issues. The surgery was mainly for Cayden’s tongue to get clipped but also to check on his throat and his borderline laryngeal cleft. The doctor found lipids in Cayden’s lungs that showed aspirations. He has since outgrown the aspirations and has done well with the tongue clipping.
During this time we also noticed that Cayden would cry whenever we laid him down. We weren’t sure if he was just fussy, if it was the formula, or something else. We found out that Cayden had acid reflux and when he was laid down it was more pain for him. So at night we had to prop him up with pillows so he could sleep better.
We knew Cayden might be different after he started missing some milestones such as sitting, crawling, rolling over and more. We called the infant toddler program and they came out and did an assessment and found him to be delayed. We started physical and occupational therapy as soon as we could. The nice thing with the Infant Toddler program was they came to your house. So every week Cayden was seen by his two therapist who would help him work on his fine and gross motor skills. We saw a lot of improvement and saw Cayden begin to do things he wasn’t able to do before.
When we felt it was appropriate we also started him in speech therapy. Speech is one of our biggest goals right now. He is still considered non verbal and we are still working with him to get him to use pictures and sign to state what he wants. We have purchased him an iPad to use as a communication device and I’ll get more into that later. But all the therapy helped him develop skills that he might not have learned on his own. He learned to crawl, and eventually walk, he learned to stack blocks and thread beads. He grew a lot during those two years.
After he turned three he was too old for the Infant Toddler program and we began the process of enrolling him into preschool. In preschool he was in a structured learning environment with other students his age with some similar disabilities. He also received speech,occupational, and physical therapy during the school week. Cayden loves school and riding the bus. He wasn’t always happy to be rushed out the door, but when he came home from school he was all smiles.
Around this time we changed pediatricians and Cayden’s new doctor ordered genetic testing. We found that Cayden has a partial duplication of his 7th chromosome (7q 21.1-32.1). This explained some of his physical anomalies such as his fused toes, extra cartilage in his nose, floppy ears, poor eyesight, and overall delays. We are still in the process of learning more about his disorder and what it will mean for him. This site was created to follow Cayden on his journey as he grows and as we learn more about his specific disorder. If you have questions feel free to contact us through this site and please share your stories as well.
Pains and Joys of Raising a Disabled Child 