Pains and Joys of Raising a Disabled Child

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.

So the past few weeks in our house have been miserable.  Strep throat (x3), pink eye(x3), ear infections(x2), coughs (x3), sinus infections(x2).  It’s been a rough couple of weeks. Cayden has been on antibiotics to try to fix it all but so far he keeps getting sick.  Lizzy has cleaned and sanitized the house several times but still they keep getting sick.  Hopefully the sinus infection will be the last thing Cayden has to face so he can be ready for school.  He is mostly in good spirits despite being sick, it’s hard to find food that he’ll eat.  But spaghetti, that is one thing he’ll eat, he had 3 plate fulls yesterday for dinner.

Cayden has been breathing better since getting his tonsils removed.  We still need to have another sleep study done to see if his apnea has gotten better.  He seems to be sleeping better, he still gets up early in the morning, but seems to be sleeping better through the night.  He is now able to say his cousins name, Kiki, which we are all excited about.  He’s been having a good winter break despite being sick for most of it.  He didn’t get a chance to go play in the snow.  Hopefully it’ll snow again when he is feeling better and he can enjoy it again.

We were only expecting to stay one night in the hospital to make sure Cayden was breathing okay after the surgery.

The sleep study showed that he had sleep apnea and would benefit from having his tonsils removed,  So we went ahead and scheduled his surgery for both the adenoids and tonsils.  That whole part went fine and his pain is fine just the oxygen levels are a little low.  Well he isn’t breathing well enough for him to go home yet.  His stats keep dropping when he sleeps to the point that it’s concerning for them.  My one question is Cayden’s low stats may be his normal.  We don’t monitor him at home, so he may have low oxygen nightly.  We had the surgery to remove Cayden’s Adenoids originally, but prior to that had a sleep study to monitor how he slept.  

I don’t think Cayden minds the stay at all.  He gets to watch his favorite movies in bed, People are taking care of him all day.  The only downside for him is when it’s time for medicine.  In recovery he fought as hard as he could to avoid the medicine.  Now he’ll open his mouth slightly for the medicine.  

He still doesn’t have his full appetite yet.  He’s not eating the ice cream or chocolate milk like he usually does.  He also loves tortillas but didn’t really want it this morning.  That’s usually our clue he doesn’t feel well or something is wrong.  He normally breaks into the fridge at home and will walk around the house with his tortilla.  

He’s doing good in general, just the low oxygen that is a little concerning.  Again, we don’t monitor it at home, so this may be his normal and it’s finally being shown on the machine. If you would like to stop by just let one of us know, you can either call or text or send me a Facebook message.  Thank you everyone for your thoughts and prayers.