Pains and Joys of Raising a Disabled Child

A little over a year ago the pandemic started. I can remember the feelings of uncertainty that surrounded those first few weeks. Cayden has asthma and a genetic disorder and those two things concerned me with what little was knows about COVID at that time. It has now been a year, and thankfully, our immediate family has remained healthy.

Cayden’s school has fortunately been 4-days a week this school year, which has been a blessing. I don’t know how I would have made it if we were still doing online school. Last spring, when we were home for the school year, I was trying to ensure my own kids were learning, teach my students remotely, and learn through my own schooling. It was a chaotic time, but I realize that what we experienced was nothing compared to what some others have faced.

Our state just made the COVID vaccine available to all those older than 16 starting the first week of April. While this doesn’t include my children, it is a promising step for those that are in need of it. I am looking forward to when we can get back to doing the things we love and not living in fear.

It’s Thursday again.  It’s one of our busier days of the week.  Cayden is still asleep in bed and pulls the blankets back up over his head.  Mornings tend to be hard for him.  He falls asleep easily but doesn’t always sleep well during the night.  All the remotes and technology are hidden and locked up in our room at night because of this.  We have found him playing video games at night and have no idea how long he has been awake.

On this particular morning, he doesn’t want to get up.  This isn’t unusual though.  I change him and get him dressed in bed and let him sleep some more while I finish getting ready and get Caleb ready.  I try to remember to check his backpack and have everything for school packed and snacks for after school ready to go.

7:10 rolls around and I get Cayden out of bed and his shoes on, we make it downstairs in time to put a jacket on and walk out to the bus.  I wait for Cayden in my school office for his bus to drop him off.  When he gets dropped off, we have time for a quick snack and a bathroom break.  It’s then off to the YMCA to pick up Caleb and head to the local bowling alley.

Bowling is a sport that Cayden really enjoys.  He’s gotten much better with throwing the ball down the lane.  Recently, Cayden loves to chat with others that are bowling and talk about getting strikes.  Most people will engage with him and give him high fives that he asks for.  We are still working on giving soft high fives instead of winding up and hitting as hard as we can.  After bowling one game and drinking our root beer, it’s time to head to OT.

In the last few weeks, OT has been hard.  The last two sessions have ended early with Cayden kicking and growling at people.  His tiredness shows up in his increased behaviors.  He has difficulty handling situations and dealing with his frustration.  In the past, we have tried to get him help with his sleep.  The solution was a C-PAP machine, which as you can imagine did not go well.  Cayden would tolerate it for a couple of minutes and that was all.  We are looking into getting him medication that will allow him to have better sleep during the night.

However, to get that help, it requires us to see a specialist.  We’ve seen this specialist years ago when Cayden was younger.  This was before we knew Cayden had a genetic disorder.  The doctor said to give it a couple of years and Cayden could catch up on the milestones that he was delayed in.  Well, we know now that there was more going on at that time and that Cayden wasn’t going to just catch up on everything in a year.  Cayden has made great strides and is doing far better than we could have imagined.

My fear is that they will try to give Cayden another diagnosis.  I don’t want a diagnosis.  I don’t want him to be labeled something that he isn’t just because he has some similarities.  This doctor we are going to see specializes in Autism and Neuropsych disabilities.  I don’t believe Cayden has Autism and I don’t want him to get another diagnosis.  I want him to get help with his sleep.

With better sleep, I think we’ll see a better Cayden.  Last Thursday when we left OT early we went straight home.  Our normal is Arctic Circle afterward for ice cream sundaes.  Cayden loves the Oreo Sundae and has gotten good enough to order it by himself.  “Whipped cream and no nuts” he’ll say.  This Thursday it was a frustrating drive home ending with Cayden going to bed at 6:30.

He ended up sleeping the entire night, 12-plus hours of sleep.  It would be a great thing to get Cayden the sleep he needs so he can be the happy little boy he used to be.  Granted he’s not always upset and grouchy.  But it is becoming more frequent and more of a disruption the older he gets.  It’s not all his fault either.  His body isn’t performing as it should. Just like we don’t perform as we should on 5 hours of sleep and no coffee.

Hopefully, the upcoming appointment will give us some answers and some help sleeping.  We could all use some better sleep and some more Oreo Sundaes.

Cayden is now 10 years old.  Full of joy (mostly) and loving the adventures he gets to go on.  The most common question we get regarding Cayden is what is his disability.  We know it is a chromosomal duplication of his 7th chromosome.  What’s hard to explain is exactly how that affects Cayden.  His speech is affected, his motor skills, his cognitive ability and some of his physical characteristics.

I think what is hard to explain to people that aren’t really familiar with special needs is, there isn’t a name.  It’s not a condition that is explained in one word.  People often assume that children with a disability have Autism.  While Autism is becoming more understood and accepted by the public, there is still a lot to learn about people with disabilities.

We were at a going away party for friends and it was outside.  There were 3 things I was afraid of.  First, there were people who didn’t know Cayden.  They didn’t know who he was, what his needs were or his tendencies (either hit or push).  Second there was the heat.  Cayden’s body doesn’t properly cool him.  He can become overheated and when he does he starts to loose control of his body and starts acting out more and becoming more unstable on his feet.  Third, there was a playground and also water.  Cayden struggles leaving play structures or keeping his hands to himself while at playgrounds or play areas.

It’s hard to enjoy adult interactions when you always have to be watching your kid.  A typical 10 year old should be looking after his little brother and playing in the water.  Well, not mine.  Within 5 to 10 minutes of getting there a small group of children had already pointed Cayden out to their parents.  He was “spanking” them and running away laughing.

The parent was as polite as he could be in bringing up the situation.  He asked if I could talk to my son about it and have him stop.  I apologized and let him know he had special needs and this was something we had been working on for the last several years.  I did chuckle later when Cayden spanked another adult.  In a very serious tone she asked him “Why would you do that”? He cackled and continued on running.  Even though I found it slightly funny, I took Cayden to the shade to hopefully calm down.

When it comes to leaving, we usually try to strategize the best time to leave.  It usually involves some distraction or just hiding and grabbing Cayden when he isn’t suspecting it.  I’ve had to climb to the top of the McDonald’s play structure before to retrieve Cayden who thought it would be hilarious to hide up there.  Luckily on this trip we were able to find a good time to leave and Cayden did well.

Overall I think what really helps us and what has helped this past year have some great adventures is our neighbors.  I am so grateful that they accept Cayden and don’t shy away from us or him.  It can be uncomfortable being around people with different needs.  You may not know what exactly they need or what you should do.  It’s pretty simple.  Love them just as you would anyone else.  Treat them as you would anyone else.

Here is Cayden with our neighbor enjoying the river.  Our neighbor placed him on the board and jumped out into the river and rode some waves with him.  He didn’t treat him different or out of fear leave Cayden on the sideline watching.  For us, it’s been great to join others on adventures and not have to worry the whole time what Cayden may do.

It’s also not fair to Cayden for us to withhold things from him out of our own fear.  I think this summer has been great so far with local adventures and activities.  Cayden’s new phrase after we finish something is “That was fun”.  I’m looking forward to more adventures and some more fun to finish out our summer vacation.

So often as parents, teachers, family members, friends we strive for our children to be equal.  We want them to have all of the same opportunities, the same chances, the same treatment as the “normal” kids.  But is that really what our kids want? Or is that what we want?

I was at a conference this past weekend that talked about Universal Design for Learning.  One of the main points I took away was this: We don’t need to focus on accommodating everything for those with special needs.  Instead, how can we level the playing field?  How do we as parents create equal opportunities for our children?

How do we make this scenario a reality in our everyday life for our kids? What barriers are there that we can remove to make not only our child successful but all children?  There are so many areas where our children are faced with barriers.  One of our biggest barrier that we are facing right now is church.  In the past few weeks its been hard to go with Cayden.

Part of it is, Cayden I think is starting to realize he isn’t always with his same aged peers. He’s been moved to the lower aged class (my decision).  I was hoping it would allow him to be more free to move and to play.  But he still struggles to self regulate and be nice towards others.  Looking at the model above, what is our barrier? What “wall” can I remove to allow Cayden to be successful.  Honestly, I am still working on that.

Cayden also has a weekly helper at church.  This is great, it falls under the second picture in the illustration.  Cayden is given an accommodation in the church setting to allow him to be as successful as possible. However, even with this extra support, Cayden still struggles.  I think there definitely needs to be more training and more intentional action.

It is church though, not school. Right? Or if I may can I get slightly off topic and down the path of religion? Is it not the Church’s job to reach out to everyone? Does every church need to have a specific program to meet every need? It would be great, but its not possible for one church to meet every need.  But I do know there are many parents in our position.  Unable to fully enjoy church due to the worry we have of our kid being successful in the church setting.

So again, this goes backs to our illustration.  We need to at least make sure we can operate in the second illustration.  Are we providing basic accommodations for our children to be successful in that situation? As a parent, what is it that I want Cayden to take away from the church setting? As a teacher, what is it that I want my student to take away from the day?

How do we move from step 2 to step 3? How do we remove the barriers? The thought of Universal Design originated from architecture. Think of all the barriers that have been removed from architecture in the past decade.  We have motion activated doors, doors with buttons, ramps, wider doors, elevators and more. All of these things were created for people with disabilities. However, by removing the barrier, it created easier access for everyone.

I believe that the first step to truly meeting a need is understanding and identifying the barrier.  Once we are able to identify the barrier, we can begin to offer the best for our children.

When I look at the word, I don’t really know what it means to me.  What does it mean to be special? The word itself comes from the Latin word  speciālis.  Speci means type or kind,  of a given species.  From there we are led to the word especial which means special, exceptional, outstanding.  

Most times when we talk about children with disabilities we refer to them as having “special needs”.  But if we say it that way are we not stating that our children have exceptional and outstanding needs?  To me this could almost be taken as their needs are so great that we are burdened to take on the responsibility of caring for them.

Or are we looking at our children as especial, exceptional and outstanding people that we have been blessed with? How do we change our view from “special needs” to especial?

Children, teens or adults with specific needs or “special needs” can be an intimidating group.  They do not always react as one would expect to a situation.  They may touch you where no one has before.  The world may look at them as “special- different from what is ordinary or usual.” (dictionary.com) But if you have a child that is especial then you know they are exceptional and outstanding.

One of the definitions of special is: having a specific or particular function or purpose.  We ALL have a purpose, but our especials have a specific purpose.  I believe their purpose is to show us that no matter how hard life may seem, no matter how many times we fall down and stumble, no matter how unfair things may seem in life, that we can love.  We can share.  We can embrace life.  We can work hard.  We can enjoy everyday.

Look to those that are deemed especial watch how much fun they have in life.  Learn from them.  Help them along their journey.  Share with them and enjoy life with them.

People with special needs are not scary, they may draw us out of our comfort zones, but they will show you love and appreciation and friendship.  They tell you you’re fat or ask about your pimple that you tried to hide.

Those that the world tries to forget are truly outstanding and inspirational.  They weren’t given the best life according to the world.  They struggle with health issues.  They struggle with independence.  They struggle learning.

But they always try their hardest.  They are always eager to have fun, eager to love and eager to laugh.  Our especial  kids are ready for life’s challenges and eager to meet them head on.

Especial.

Exceptional.

Outstanding.

Our Kids.

The stream was softly trickling nearby.  The other 2 kids were at the hot springs pool enjoying the warm water.  The sun was out and shining warm over the mountain campground.  I had just sat down to read a book, everyone one else was in the camper getting ready for naps.  I got through maybe a paragraph and guess who was awake? Yep, Cayden, he had been asleep for 10 minutes at the most.

I got my backpack ready to go with water snacks and anything else Cayden might need on our hike.  He was excited to go and could hardly wait for me to get everything together. We set out on the campground road not exactly sure where we were headed.  Cayden was excited to be on the trail and on an adventure.

I saw a path off to the side of the road and we decided to take that into the woods.  Cayden has been watching a lot of Wild Kratts (which I heard is being pulled from Netflix) these past few months.  He began saying “Activate___________ power”  and naming several different animals.  He would then pretend to be that animal until he activated back to himself.

This new form of imagining is new for him.  He used to play with his toys and transform them, but now he is the person doing the transforming.  He is also at a stage where is becoming independent.  He can pull himself onto the counter and reach the bowls in the top of our cabinet.  He’ll then get his cereal, spoon and milk and make himself a bowl of cereal.

So here I am on a hike with a deer, moose, bug and whatever animal he can think of.  He was happily walking along activating into new animals and pretending to have their power.  I did end up finding a walking stick for him to carry around and help him up the steeper parts of the trail.  Though I think he just liked holding the stick and banging it on the ground.
So here we are, just the two of us on this hike through the forest.  Cayden was content walking for the most part.  I carried him on my shoulders when he became tired. He would point out the flowers and want to smell them.  Which reminded him of Ferdinand the Bull.  He would start quoting passages from the book that related to the book.

We were walking around a corner and up on the hill was a deer.  Cayden excitedly called out, “Activate  deer power.”  He then talked about the deer for the next 15 minutes or so and how he activated his deer power.  For him this hike was about getting out and just enjoying what was around him.

He seems to do really well with outside open space.  He likes the room to run and explore what is out there.  We don’t have a huge back yard, not a small one either.  But he always finds the rocks or the vegetable plants and ends up having to come inside for either wrecking the plants or throwing rocks.

However, on this hike he wasn’t contained by a fence.  He was able to walk freely (mostly) on the dirt road up the mountain.  He had his little walking stick, snacks, water and space to roam.  His body enjoyed the movement and the extra work it took to get up the mountain.  His balance and overall calmness was noticeable during and after the hike.

We ended going on the trail for a while.  According to my Fitbit tracker we went up roughly 38 flight of stairs.  It measures 1 flight as an increase of 10 feet in elevation in a certain amount of time.  I’m sure we probably went a little more than that, but that is still quite a bit for little legs.  We walked over 14 thousand steps, okay, I walked over 14 thousand steps.  Cayden enjoyed a ride most of the way down the hill.

It was nice to have time just with Cayden.  No distractions, not other events taking place.  Just the two of us exploring the outdoors.  Activating creature powers and enjoying the deer and other animals.

A new year has just started, and in no time it will be over.  It is amazing how fast life just flies past us.  Growing up I always wished I was older or that a special event would come more quickly.  However, now that I have kids, I wish time would slow down, even for just a bit.  Cayden is now in the first grade, that part alone is hard to imagine.  It seems like it was just yesterday that he was learning to walk.

Cayden is a special boy, not just the fact that he has special needs.  He really is special.  He has an attitude about him that can be contagious.  He is mostly happy and eager to learn.  Lately he has been learning a lot of new words and trying to use 4 or 5 at a time.  He has his little phrases that he will use, “Woody hat”, “Draw Elliot Larry”.  Now these phrases don’t mean much to a person on the outside.  They just appear random and jumbled, but in fact they refer to some of his favorite things.  For Christmas he got a Woody doll that has a hat that comes off.  Now Cayden will frequently lose the hat and we have to search the house until we can find Woody’s hat, thus the phrase “Woody Hat” was born.

Cayden has a Veggie Tales DVD of The Pirates Who Don’t Do Anything.  He has watched the movie tons of times and thus has moved his way into the menus.  He found one video that is a step by step how to draw the characters.  He will occasionally draw the characters, but mostly he ask us to draw them.  Hence “Draw Elliot Larry”.  Cayden is also enjoying going to school, for the most part.  I don’t think he is always a fan of waking up in the morning, but hey who is.

We’ve had people ask us, “what level do they expect Cayden to reach?”  That is a good question.  I don’t think we have enough input on his genetic disorder to really know where his ceiling is or if he even has one.  But for us to put a ceiling on him would hinder any future growth.  And there lies the struggle of every parent.  At what point do we as parents give up pushing our kids higher and accept where they are.  I know first grade is way to early to expect a decline in learning.  But will I be ready in 7th or 8th grade to hear that Cayden is no longer learning new academic material and he’s slowed down in other areas?

I don’t know if I will be ready for that.  How do you prepare yourself to hear that?  Deep down I feel that we will hear something along those lines, but it would be amazing to see Cayden grow up and out of his disability.  Does that make sense?  Learning so much about himself and the world around him that he could understand how to handle himself socially and physically.  It would be a miracle, one that may or may not happen, it doesn’t change who Cayden is.  There are times that I wouldn’t mind waking up at 3 in the morning hearing my son say good morning, even though it was still clearly night. Or running to you excited to show you something.

I will miss being needed.  Miss being able to solve all their problems.  Miss being the strongest and fastest person they know.  As parents we grow old, our kids no longer need us like they did when they were young.  However, with a special needs child, we may always be needed.  We may always be the strongest and fastest.  They will always be with us.  We will be there for him for as long as it is needed.

So to a new year, a year of pushing on, pushing towards the goals.

 So another year has passed, Cayden is now 6 years old.  It’s hard to imagine that six years have gone by, and so quickly.  We’ve come a long way since the beginning.  There is no guide to parenting and certainty no guide in detecting a child that has delays or a disorder.  There is no real preparation that you can do to brace yourself for parenthood.  You can have everything ready, take all the classes, save all the money, but there will always be situations that you are not prepared for.  However, there will also be rewards that you are not prepared for.  Lizzy and I knew around 6 or 7 months that something was different with Cayden.  He had hit some of his milestones in those few months, however, there were still some other milestones that he just wasn’t reaching.

His birth for the most part was normal, when he was born the cord was wrapped around his neck.  We were told that it happens and they were prepared for it.  He wasn’t recovering as fast as they liked and he required an overnight stay under an oxygen hood.  He then got Jaundice and had to stay a few more days in the hospital.  For the first couple of years I wondered if these were the reasons for Cayden’s disability.  I kept questioning if we did things differently if Cayden would have turned out differently.

When we changed pediatricians our new doctor wanted genetic testing to determine if anything was going on with Cayden.  Up until that point we knew he was “different” but had no idea what it was.  We didn’t have a name, a diagnosis beyond delays, or an idea what was really going on.  After the genetic testing we found out he had a duplication of his 7th chromosome.  We are still learning about his duplication and what we can expect in the years to come.

This past year we have seen huge improvements in Cayden’s vocal speech, he has picked up new words from kindergarten and speech.  He is loving to communicate either vocally or with his DynaVox.  He is starting to put three words together and make connections.  This upcoming year Cayden will be in 1st grade, it’s hard to believe but he is growing up.

And with growing up are new task to be learned, we are venturing down the road of potty training.  I fear it may be a long and challenging road.  I’m still wondering if Cayden knows when he has to go to the bathroom or if he is just stubborn.  I’m leaning towards a stubborn little boy who doesn’t want to go to the bathroom on the toilet.  We’re hoping that the potty training road ends this summer and Cayden will be able to use the toilet.  That will be our main goal for these next few months.  I’ll try to keep up on his progress and any new information we find out about Cayden and his disorder.