Thursday, October 27, 2016

Our Lives Are NOT A Daily Struggle. We Can Take On More!








I've been meaning to write a post like this for a long time.  And I'm not sure where it's gonna take me yet...  Hopefully it makes sense.

The reason I'm writing this post is ...I think that because I have this blog and because I write about all the ups and downs in our special needs lives that many people get the impression that our lives are a constant struggle...  that every day we are living a high wire act of stress and emergencies... and nothing could be farther from the truth...

And when I say many people, I mean many people who read the blog and don't know us... and some people who read the blog and kinda know us (like co-workers, old friends), and a few people who are close friends & family and should know that we aren't really that stressed on a daily basis...  :-)


I have two examples to share...of people thinking they have a good idea of what we are going through...

1) A coworker was telling last week me how his wife went through quite a scary cancer scare a few weeks back.  Surgery, a stay in the hospital, some real scary stuff.  And as he was telling me the story he was looking at me like "you know what I'm talking about" and then he even said "i'm sure you could appreciate what that was like"

And I said "no, none of the stuff we ever deal with for my son has ever been life or death... that must have been really scary... i have no idea what that must have been like"

And it's true... We've been thru some scary procedures & surgeries with my son... but none of them were life or death...  yes the seizures are scary, but most of the stress that comes with any hospital stay with the king is whether he is going to behave and be a good patient.


2) The second example is even harder and more in line with what I'm talking about and what this post is about.  My uncle passed away this April.  He had lots of medical issues.  He lived very close to me.  In fact, you could say that I was the relative that lived the closest to him.  And we were close  emotionally too.  We would see him every couple of months... he was in our lives.

In the year before he died, my mom would tell me stories about how he had to go to a doctor appointment or even a trip to the ER and needed a ride, but asked a distant relative to drive him.  And I would call him and say "Unc, I'm here.  I'm close.  I get home from work at 6:30pm.  You can always call me.  I'd be happy to drive you."

And I would always hear from him, "but I didn't want to bother you... especially you... you've already got so much on your plate..."


And I would think in my head?  Too much on my plate?  What does he think goes on in this house?  I get home from work at 6:30.  The king is usually asleep by 8:30, and I'm sitting on my couch picking my nose and watching "Survivor" and "The Goldbergs" til 11pm.












So those are my two examples...

So let me say loud & clear, every day raising our autistic and epileptic 13 year old is not filled with stress & emergencies.  Every day is not a high wire act.  It can be really quiet and boring around here.  

And I think wifey would have plenty of her own examples.  There's been times when she would say to people (relatives, close friends) "if you ever need a sitter for your kids, I'd be happy to do it..."
or even "if you're ever in a bind and need someone to pick up your kids from school let me know..."  and they either yes her but never take her up on her offer... or they look at her like she has three heads, or they say something similar to what I hear, "thanks, but that's ok... you've got enough on your plate..."

So let me say loud and clear that we both have free time...  We both have more room on our plates...    

Our families know by know that when the really stressful times do come and when we do have too much on our plate we always let them know and ask for help.  We are not shy about that...  :-)


However, for the most part, yes my son, can be quite a handful, and can have lots of challenging behaviors...and his weekly seizures can be scary as sh-t...  but even at his worst we've got time on our hands to take on more, we've got room on our plates... 

And since we started giving him melatonin back in 2009, he normally sleeps well at night, and now since seizure and seizure meds entered the party in 2012 he sometimes sleeps too much, so we really do have a lot of time on our hands.

And when he is sleeping for those 11-12 hours a night it's not like we are up at all hours searching the Internet and stressing about autism and epilepsy.   We were never those kind of parents.   Ok, maybe we were a little more like that when we were younger parents, with a younger kid, and this autism world was more new to us.

However, now, for better or for worse, we are sitting home watching tv at night when the king is asleep... and besides writing this blog I really don't think about autism and epilepsy that much.  

So, basically, now we live each day as it comes.... and each day is not a hire wire act of stress and emergencies..












And our lives are not a constant struggle.  

Yes, we have stress in our lives.  Yes, I'm on antidepressants...  but I've come to the realization recently that I'm quite positive that I'd be on antidepressants if we had typical kids... and perhaps I'd be equally stressed, but over typical parent stuff.... that's just my internal make up.

I think that's all I want to say... not sure what the point of this post is... I think that my first example above about my friend with the wife with the cancer scare just brought this post to the forefront of my brain.  The fact that he thought that because I had a a kid with special needs I would know what it's like to have a spouse go thru a cancer scare just made me realize that maybe people don't really know what our lives are like...  Maybe me having this blog makes people think that we live and breathe autism and epilepsy and special needs issues 24/7... and nothing could be farther from the truth....

And my 2nd example about my uncle... it just always kills me that some of our friends and relatives feel like they can't lean on us / depend on us more. It kills me that they think they can't call on us in case of an emergency because they think we've got too much on our plate...  To think that my uncle needed a ride to the hospital and didn't think to call on me, and all I was doing was sitting home watching "Better Call Saul" is tragic.

So I will say again, for the last time.  Our lives are not a daily struggle.  We have room on our plates.

I'm sure as the wife and I age and in 10 years or so as our son grows into a 6 foot tall, 175 pound adult, and ages out of the school system our lives are going to be a lot more stressful and a lot more of a daily struggle / high wire act...  so lean on us now while you can!  Cuz we will definitely be leaning on you in 10 years when those crazy times come!

That's all I've got...

THE END





-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!



Monday, October 24, 2016

A Rave Review of My Son's Special Needs School







It was on August 13, 2015 that I wrote a blog post called "My Son Didn't Get Into the School We Wanted for September" 

And wifey and I were hurting.  We found a school that we felt was a great fit, but due to lots of bureaucratic red tape we couldn't get him in,  

At that time back in August 2015 I wrote:

So we had to settle on his "safety school" which is a 30 mile, over a bridge, 30 minute drive away... 
So for the first time EVER we're going to have to put the king on the school bus each day. 
And that is going to be a HUGE adjustment for all of us. And the king who likes to sleep late sometimes and sometimes has seizures in the mornings will have to get his butt up extra early to get on a school bus...
And don't get me wrong, this safety school really is a great school too...  it's just not as great as the other one and much further away and so much more of a life change and adjustment for all of us...
Big bummer!!

Well he's been in that "safety school" for way over a year now and we couldn't be happier!  It is an excellent school for so many reasons...

But let's take this step by step...

The bus ride...

Yes, the bus ride is quite long.  It takes us 30 minutes to drive there directly, but on the school bus with picking up two kids after my son it takes them an hour to drive there.

Because of his potential for seizures we fought to get the king his own nurse on the bus, and she is great.  She's always texting wifey keeping her in the loop, giving her the "5 minute warning" each morning & afternoon so she knows exactly when the bus is coming.  She also sends little pics of him on the bus...

And all in all, the king loves the bus ride!  He just chills, watching videos on his iPad, having snacks, etc.  He gets frisky sometimes and hits or acts out, but it is pretty rare these days (knock on wood).  He also never had a seizure on the bus so far (knock on wood)...


The swimming pool...

As many of you know the king loves swimming.  Well this school has a heated indoor therapeutic swimming pool.  Every class in the school goes once per week.  However, when we mentioned to his teacher last year how much he loves the water and how we thought it would help calm him down for the school day she said "oh, i'll write a report and we will make a case with your school district to get him in the pool 5 days a week"

Knowing how hard it is to get anything thru the red tape at my school district I expected we'd have a battle on our hands, but by the end of the first month of the school year last year we got a note home saying "send him to school in his bathing suit under his clothes each morning and he will go in the pool first thing."

And so since last October we put the king on the bus in his bathing suit each day and he goes into his classroom to drop off his bags, and then spends the first 30-45 minutes of the school day in the pool!

What is better than that?!  Isn't that freaking amazing?!










The teachers & staff

So far, two school years in, and all the teachers and staff we have interacted with are awesome!  The king had an amazing teacher last year, and her staff was so great.  They made that classroom such a loving & welcoming environment.   And we thought / hoped that he would be in that class again this year (and for several years to come).

We found out in late August that he was assigned to a different class with a different teacher and my instinct was to get upset and to fight it.  However, wifey said "let's just wait and see how it goes."

And I guess we have an autistic kid who is ok with change, because even though I was freaking out he is handling it like a champ!  

I know schools rarely hear this, but sometimes they really know what they are doing!  

The classroom that he is in this year can possibly be considered slightly lower functioning, and the classroom is a bit more simplistic / less cluttered, and I think the lessons are a bit more on his level, and I think they might be a little stricter with him.  
And I think he is enjoying it a bit more.  The main reason I feel that way?  He is napping less at school.  He was napping upwards of 2 hours per day last year.  This year they are cutting his naps off at the 20-30 minute mark and he is ok with it.  And that is a good thing for many different reasons...

The other thing I love about this school?  They "get" my kid.  Both the teacher / staff last year and this year.

We went to the school open house last week as well and met with the teacher and staff.  And these people have only had my kid in their class for a month and a half.  And they already seem to get him.  They know when he can't do something VS doesn't want to do something.  They seem to talk to him appropriately, and push him when it's necessary.  
 Basically, they get his personality, and I am so happy to see that.  That is HUGE!    

So far this school year, he seems to be doing well, and is happy and not exhibiting too many problem behaviors ("PBs").  

However, that is how the king usually works.  He gives everyone a honeymoon period and then starts acting out in January.  However, another thing that we love about this school is that they seem to be able to handle everything that my son or any kid can throw their way.  At previous schools we would get calls on bad PB days or on multiple seizure days.  Here they have 3-4 nurses on site and are dealing with multiply disabled kids all day so a few seizures doesn't freak them out.  And PBs?!  They can handle all sorts of PBs!  We never get a call from them saying "please come pick him up" 










The atmosphere of the school / the parent involvement / the administration

This might be the best thing about this school.  It is a fairly large school with kids with all special needs from ages 5-21.  And they have TONS of activities throughout the school year.  The reason that I thought about writing this post is that wifey and I attended /volunteered at their "Fall Fest" last Friday.  

Fall Fest consisted of the staff & PTA setting up Fall / Halloween related activities & prizes in the cafeteria.  Throughout the school day classes entered and walked through the activities.  This was maybe the 5th or 6th activity that I have attended.  Halloween parties, Thanksgiving parade, Christmas show.  Lots of parents attending.  And the thing that sticks out the most at all these events?  The joy.  Both from the kids and the teachers and staff.  Everybody just always seems so happy to be there.  From the principal down to the custodians, just smiles all around.

You have no idea how important that is for a parent to see.  After being at so many schools during his 13 years on earth it is so nice to be at a school that welcomes family involvement, that celebrates all holidays, and that is so joyful.


That's about all I want to say.  

Just a short blog post raving about my son's special needs school.  So many people only write when they have bad things to say so i really wanted to write a post about how great his school is...

I'll leave you with this one image that encapsulates everything...

When my son came through the fall fest with his class he was accompanied by his 1:1 aide and his Occupational Therapist.  The fall fest time must have come during his OT session time.  So she accompanied him, and a few of the activities had an OT slant to them so she was helping him.  It was great to see.  And he had a real nice time.



However, as he was leaving he was having a bit of a difficult time transitioning and his OT was massaging his back.  It was just so nice to see that interaction!

We are so happy that the king has the potential to be at this school until he is 21 years old.  

THE END








-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!



Tuesday, October 4, 2016

What Doctors Don't Get About Autism Parents












Not sure what this post is gonna be about yet.  And based on the title it might not be the post you were expecting.

The idea for this post has been in my head for a few months now...ever since I attended an autism conference a few months back.

At that autism conference were a lot of bio-medical doctors and medical professionals who were recommending lots of different / alternative treatments for kids on the spectrum and suggesting lots of different / alternative medical tests for autism parents to consider running on their asd kids.

And this post is not about bashing any of those treatments.  I've written before how we tried many of these treatments years back and...


I believe that some of those treatments work!  When people rave about the amazing improvements in their kid after ___ treatment I don't think they are lying... and I am truly THRILLED for them.  They just didn't work for my kid.  I covered my take on biomedical in two posts that you can read HERE & HERE


Anyway, so this post is not about bashing any of those treatments.  This post is just about the look I saw in some of those parents' eyes at that autism conference.  How overwhelmed they looked.  Some of them were at this conference for several days and their heads were spinning.

And I know that feeling.  I remember feeling that way.

And it's not a feeling of disillusionment.  It's a feeling of hope.... "if it worked for that kid maybe it will work for mine"

but it's also a feeling of "where the F do I start?  Which treatment should I start with?"

And it's also a feeling of "How the F am I going to be able to afford this?"

But it's also a feeling of "how am I going to get my kid to do this or take this or sit still for this."

That's what this post is all about.

This post is about the fact that most doctors don't have a freaking clue how difficult some of these simple things are for our kids.  

One bio-medical protocol required parents to bring their kids in for blood work every 3-4 weeks or so.  Simple enough, right?

No.  Not simple for my kid at all.

Do you know how hard it used to be for my autistic kid to sit thru blood-work.  Do you know how many phlebotomists (the folks who draw the blood) he's kicked.  Do you know how many times we've put off getting blood work done because wifey or I weren't in the right mental mindset to take that on?  

I would book the blood-work appointment three days in advance and then stress about it for three days... and then if my son gave any indication of having a rough morning I'd cancel it last minute.  








This holds true for any kind of needles.  Needles for drawing blood and needles for injecting something (like vitamin B12 injections).  They can all be torturous for our kids.

Now I know many doctors would think we autism parents must be crazy for shying away from even trying a new treatment because of our kids fear of needles...

But do these doctors have any freaking clue how difficult needles can be for our kids?  Do they realize that it's many times a two parent job?  That means that still to this day, any time my kid needs to get blood drawn or an injection done I need to take time off from work so that he can sit on my lap while I pin his hands down, and wifey holds his legs down so nobody gets kicked.  

Most doctors don't have a clue what goes in to the planning for even the simplest thing.... 

Taking vitamins?  Supplements?  Any pill?  I didn't think that my kid would ever get the concept of take this pill and wash it down with that water.

And he still doesn't get that concept.  

One of the greatest days of my autism parenting life is the day that I realized that if you put a pill on a spoon with some baby food he would swallow it down no mater the size... stuff on spoons he will swallow...




but that's just my kid... many other kids on the spectrum can't or won't take pills... or if they will it's a DAILY BATTLE.

But many doctors don't have a freaking clue how hard something as simple as "have then take this pill twice a day" can be for our kids...

And of and it's not just many of the autism doctors who are pushing the bio-medical treatments that don't have a freaking clue... I'm not singling them out in their clueless-ness of the realities of being an autism parent...

it's many of the regular doctors as well.  

A couple of months back we thought my son broke his finger.  The doctor recommended an xray to make sure... and my instinct was to say "nah, let's just wait and see what happens"

My doctor must have been thinking.  "What they hell is wrong with this parent?  Wouldn't he want to know immediately if his kid has a broken bone?"

Of course I would... but does this doctor realize that taking my kid to get an xray requires us to give him benadrl and melatonin in the middle of the day so that hopefully he will be sleepy enough to keep his hand still long enough to get an xray.








years back they thought my kid was going thru advanced puberty and one doc recommended he get a special "bone age xray".

"What does that entail doc?

"Well he just needs to keep his hand perfectly still for 3 minutes"

"Yeah that's not possible... at least not while my kid is awake"

So we put off the test until wifey and I were both mentally prepared enough to handle it.

Then we stuffed him full of benadryl and melatonin and waited for our zombie boy to be completely sleep enough to get his hand onto the table for 3 minutes straight.  

I think we were there for over 3 hours.  

I could go on & on.  Most doctors don't have a freaking clue what we have to deal with

Forget about bringing my kid to the dentist.  

We gave up on brushing our kids teeth years ago... literally just gave up... he won't let us in and he's now too strong to fight...  

So every year or so we have to schedule an appointment with a special needs dentist, and he/she would do the cleanings / xrays / fillings in a hospital setting under general anesthesia.

That's right... tooth brushing was so difficult for our kid that instead of trying to brush his teeth everyday wifey and I decided that the concept of putting our kid under general anesthesia once a year was the less stressful move.

And that's not to say that it's not stressful.  This is one case where my son isn't stressed out at all.  In the days and weeks leading up to the dentist hospital visit, he is fine...probably because he's oblivious that it is coming up... but wifey and I are stressing and have to get ourselves in the right mental mindset for this appointment.

I have to take more time off of work.  And on the morning of, wifey and I are a barrel of nerves... but the king is pretty ok with it.

At the hospital they always try to give him a liquid sedative before the anesthesia and I tell them "he will spit that out... do you have a pill with some baby food instead?"  :-)

There was one time when he went in for his dental work.  It was around the same time that we were supposed to get that bone age xray test done... I think he was also overdue for some blood-work and was also overdue for an overnight EEG.

And once he was under the anesthesia and laying there peacefully I said to the doctors and nurses:

"While he's under anesthesia can we also get the bone age xray done, and the blood-work done, maybe clip his nails, and give him a haircut too while he's under?"

I was serious about the first two and somewhat kidding about the other two, but alas they couldn't do anything else while he was under...

...and these doctors probably thought I was crazy for asking...  but that's because most doctors don't have a freaking clue!

That's all I've got for now... I'm curious if you guys have similar issues with your kids and the doctors in your lives... maybe it's more of a severe autism issue or a non verbal autism issue?

Looking forward to hearing your thoughts.

THE END








-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!



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