Sunday, December 30, 2012

Seizure Free Saturday

As y'all know, Kyle had a return to Seizure Street on Friday. (you can read about that here)

We were prepared for a real rough day yesterday... but Kyle had a much better day. He had a "Seizure Free Saturday".

In the am, we took him to the doctor to check out his cold so we could nip an infection in the bud...especially since the cold/ fever may have brought the return of the seizures.

The dr's office was a little rough. The Sat after Christmas & the place was PACKED with sick kids!! So we had to wait over 30+ minutes. But we got thru it...

Before the dr came in, we threw Kyle on the scale and he was 68.6 pounds!! Up 7 pounds in a month!! His increased appetite is mainly thanks to his anti-seizure med, depakote.

The doc then came in and checked him out and found nothing. His chest was clear, his ears were fine. Kyle wouldn't let him in to see his throat, but whatever. The dr said he was fine. So $25 copay down the drain, we were on our way...

We made a quick trip to the supermarket. Since Kyle was prone to possibly having seizures, we put him in the cart instead of having him walk/ push the cart. He was pretty ok for the supermarket trip...and we got it done fast.

On the way home from the supermarket I'm driving and the wife is checking her personal Facebook page from her phone. She had put this picture of our Christmas tree up...



...with the caption: "Should I fix up this sorry tree? Or is it time to let it go?"

She's reading me her friends witty responses when I said...

"But you never told them the reason the tree looks like that... You should tell them that your son had a seizure and fell into the tree yesterday."

And we both burst out laughing.

You gotta laugh about this stuff....or....  :-)

We got home from the dr & supermarket trip around noon and had no plans for the rest of the day because (a) we were expecting snow and (b) we wanted to watch Kyle like a hawk and watch for more seizures and be close to him in case be fell.

Normally the king wants to watch tv all day and is always going to turn the tv on. And we are usually trying to redirect him to his playroom after the tv has been on for awhile.

Yesterday since we wanted to watch him like a hawk I said "let's let him watch as much tv as he wants so he'll stay in the living room and it'll be easier to watch him"

But of course wouldn't you know it, on the day we left the tv on all day, he wasn't that interested. And he kept leaving and wandering around his playroom.

But he was a good boy all day. As long as his belly was full he was fine and happy and the cold never really got any worse...although we kept giving him ibuprofen every 6-8 hours just to keep any potential fever away.

All afternoon as we were watching the king like a hawk the wife and I were singing

"seizure boy, oh my little seizure boy"

to the tune of the song "Soldier Boy" by The Shirelles.



You gotta laugh about this stuff....or....  :-)

In the afternoon the wife decided to take down the Christmas tree aka "seizure tree"



And when all the decorations were off I carried the tree out the front door, held it above my head and threw it down into my driveway.

The wife was watching me so to get a laugh out of her as I threw it I yelled...

"F--k you seizure tree!"



We both laughed hysterically. I wonder if the neighbors heard/ saw that.


You gotta laugh about this stuff....or....  :-)


At around 5pm I went upstairs to put my pajamas on and just mysteriously disappeared for an hour to take a nap.

At around 6pm the wife kicked me out to take a nap herself. She got up around 7.

Kyle had a little dinner, watched a lot more tv, and fell asleep on the ottoman at about 8pm, a little earlier than usual probably due to an increase in his anti-seizure med and probably because he was bored and weirded out that we were watching him like a hawk...lol...

I carried him upstairs. The wife started cooking dinner. And the two of us ate sausage & potatoes at around 9pm while watching an "Everybody Loves Raymond" marathon on TV Land.

That was our exciting Saturday... pretty uneventful... but most importantly it was seizure free.

Hope you enjoyed this boring recap of our Saturday...

THE END!

Saturday, December 29, 2012

Saturday Night Flapping

Just a quick silly video of the king flapping away in front of the tv on this lovely Saturday evening...while dad & Paula look on...





The Christmas tree had just been taken down by Autism Mommy so the living room is finally back to normal...

That is all... nothing earth shattering, just a quick video of his majesty trying to fly away...

Flappy New Year everybody!

Friday, December 28, 2012

A Detour From Autism Avenue To Seizure Street :-(

The king had a few pretty big seizures today. His first in a while. He's been pretty much seizure free since starting on the med Depakote after his seizure related hospital stay in mid-October.

But today he had 3 "episodes" this evening that were the complex partial seizures where he's not there for20-30 seconds and his body looks & feels different. He hasn't had one like these since back in May.

Thankfully our new neurologist was "on call" this weekend and she called us back right away.

Her first question?

DR: "Is he sick?"

WIFE: "Well he's got the beginnings of a cold..."

DR: "Well I'll bet he's got a fever brewing. Kids with epilepsy are prone to having worse seizures during a fever."

On her orders, we are going to increase his dosage of depakote.

And we are going to give him Advil and/or Tylenol to keep the fever away.

This all happened around 6pm. And after that we tried to keep him contained on the couch.

And just as she predicted, his cold got worse in front of our eyes. No fever yet, but everything else...

If only the kid knew how to blow his noise and cough and spit up phlegm things might be easier in his life.

So this weekend looks like it's going to be home bound watching the king LIKE A HAWK.

This seizure/ epilepsy stuff is still relatively new to us and it can be really frightening to watch. And dangerous if he falls and hits his head. And now it sounds like every time he gets a cold we have to be prepared for a possible detour to Seizure Street.

Good times, good times. :-(

When does school and work start again?

The King Is Packing On The Pounds This Holiday Season!!

I've written on here many times about the king's struggle with appetite and weight gain.  There was a 6 month stretch about 2 years back where he lost 6 pounds. Doesn't sound like a lot, but for a then 7 year old, it was 10% of his body weight. And his pediatrician was kinda concerned.

The wife took upon herself to get those pounds back on him BY ANY MEANS NECESSARY. And she did, but the feeding process was was always excruciating and put a strain on their relationship.

I wrote about his weight issues HERE. You REALLY should read that to get a taste of he feeding problems before moving forward.  Please read that one now...

Don't worry, I'll wait for you... I'll look at this pic of Mariah Carey in a Santa suit while I wait for y'all...


Are you back already?   Did you read it? Ok, so now moving forward.

So that post was written in June 2011. And things had gotten a little better in the 17 months since then. She got the weight back on him and he kept it on, maybe going up a pound or two...but still in the same weight range he was in when he was a chunky 6 year old and he's now 9.

But the feeding process hadn't gotten much better. We would check his school lunch. It was almost all there, left over. And wifey would try to force feed him dinner...maybe using popcorn or Cheerios as reward/ bribery :-)

Then in October we wound up back in the hospital for more seizures.  (read about that hospital visit HERE).  Kyle had a 24 hour EEG & they put him on a new anti-seizure med, Depakote.  And this new med came with all the usual warnings.

"it may cause him to have an increased appetite and gain weight"

And the wife & I were like, "yeah, we've heard that before with a bunch of other meds he's been on and it's never happened... we would welcome some weight gain, but we don't expect it."

And in mid-October Kyle went on Depakote, and we slowly worked up his dose.  And thinking back, maybe we did see some increased appetite.  He definitely had more aggression / meltdowns and thinking back, maybe those were hunger related.

But it never really kicked in til around Thanksgiving.  It was around then, that we worked up his dose to the full amount that his neurologist wanted him on.  And I wrote about how on Thanksgiving Day he was raging, with multiple meltdowns (read here).  I even said that maybe they were hunger related.

Well, they were!  We don't have a scale in our house, but from Thanksgiving to Christmas, I'll bet he put on 6-7 pounds.

He now snacks all day long and also has 3 meals a day!  He actually comes and sits down at the table when he wants a true meal!

And when his belly is full, he is a delight to be around!  But if you don't feed the beast :-) in time...WATCH OUT!

Having an increased appetite, and eating more comes with some new challenges.  Mainly he has more bowel movements and has to pee more... and sometimes has more gas than before... and he doesn't always know what all these different feelings feel like... so he's been having alot more pee-pee accidents lately...sometimes probably from trying to push out some gas and then a little pee comes out...  lol

But all in all, we are truly happy with this new increased appetite... but it's amazing how quickly things change.

We went from trying to fatten him up.  Wifey adding extra butter or whole milk to lots of his favorite foods or deep frying them....to now trying to offer him more fruit and hoping he gets satiated on the healthier lower calorie options.

And before you say it... we tried GFCF diet years back.  He was on it for 18 months and we saw no improvement.  In fact he kinda regressed & got worse while on it.  (I wrote a little about that HERE).  So we are not looking to try any new diets right now.  :-)

But anyway, for now we are kinda thrilled to have a healthy looking kid with a good appetite vs the skinny bony kid we had just a few months ago.  And hopefully the weight gain will level off

However, once we get him on an actual scale and see where we are at, we might be shifting into diet mode!  But one step at a time....

Here's a before and after pic.



On the left was October 2012 and on the right was yesterday...



As y'all know, Kyle holds his breath and protrudes his belly... which makes him look "fat" in the before pic...but look how BONY he was... and look how healthy he looks now!

Yay Depakote!

That's all for now...

Over and out!

THE END..

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If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box below?  This way I can make a little money.  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, December 25, 2012

A Christmas Eve 2012 Recap

Christmas Eve Dinner was at our house last night...as it is every year...

Early in the day, the wife ran out for a few hours to go to the chiropractor and to run a few errands...and I hung with the king...

At 1:30pm, I picked up my mom and visited my dad in the cemetery, along with my grandparents.

Dinner was at around 6pm. In addition to my wife's parents and my mom, we had 2 friends with their 2 ASD boys. So it was autism x 3 for Christmas Eve last night...a bit of a whirlwind...but it all turned out pretty well.

We tried something radically different this year and hopefully started a new Xmas Eve tradition.

Instead of my wife slaving and cooking and making the "7 Fishes", (a silly Catholic Italian Xmas Eve tradition, in my opinion, especially since I hate fish :-) this year we threw tradition to the wind and ordered from "Outback Steakhouse".

No cooking, no pots & pans to clean! And it was still probably less expensive than buying all that fish that we used to (shrimp, lobster tails, crab legs, etc)

We got steak, ribs, shrimp, and of course the "Blooming Onion"!

I think it turned out well, at least for me and the wife. Our folks probably weren't thrilled with Outback...lifelong traditions dying and all...but whatever...they'll get over it...maybe...
:-)

Next year, maybe Chinese food!

Dinner from 6-7:30pm with kids shows blasting from 2-3 devices at the same time.

7:30-8pm some gift opening

The autism family rushed out quickly at 8pm as autism families are known to do... lol...
:-)

And then Kyle got some alone time with his grandparents before falling asleep around 9pm.

After that all the old people :-) had desert and coffee / tea and watched "A Christmas Story" before we kicked them out at around 11:15pm

What did Kyle get for Christmas?
Clothes, money, and silly hats & lots & lots of beads...

Today Christmas Day dinner at my sis-in-laws...

MERRY CHRISTMAS EVERYONE!

:-)

Thursday, December 20, 2012

2012 Can Suck It! Bring On 2013! :-)

The wife and I were online last night trying to choose a photo card design for our annual holiday card with the king. Since we are not that religious and since our card will be late and probably arriving after Christmas anyway, we were looking at "Happy New Year" designs.

A few New Year's cards designs leave enough room for you to write your own caption.

So I said "how about we write something like..."

2012 can suck my ---- bring on 2013!

And we both laughed cuz 2012 was a pretty awful year in the ol' AD household.

So I guess this post is gonna be the best of the worst of 2012 for ol' Autism Daddy...with links to blog posts about the awful things that happened... lol

This is not what I set out to write when I first started writing this...but that's where this is headed...

January to mid-May were pretty uneventful & somewhat happy in the AD household...no major complaints.  And then in mid-May the sh-t starting hitting the fan and the year of 2012 went in the crapper... lol

In May the king starting having seizures and spent a few days in the hospital.
(you can read about this here)

In June my dad with Parkinson's had a fall at the nursing home that required hip surgery and he never really recovered and we had to make some difficult decisions about his care.
(you can read about this here)

In July my dad succumbed to the Parkinson's and passed away.  You can read the eulogy I wrote for him & read at his funeral here.

In August while having a great time on vacation, Kyle started having dizzy spells / possible seizures and we also found a lump in his groin area
(you can read about this here)

In September the king had hernia surgery and the recovery was tougher than we expected (read here) &  in general September was tough for the king (and therefore for us) for a variety of reasons which I wrote about here

In October after a lot more dizziness and a few big falls we wound up back in the hospital because of seizures.  We spent a few days in for a 24 hour EEG and to adjust to a new seizure med.
(you can read about this here)

Whew... May thru October was a f--king whirlwind of sh-t for us personally!

And then November & December had Hurricane Sandy & the Newtown massacre which much like after 9/11, while not affecting us directly...because we live in the NYC Metro area it does affect our lives.

It affects friends of friends.  It affects friends of friends of friends... and because of FB it's almost like 6 degrees of separation.  Yes, we know people who know people who were absolutely devastated by Hurricane Sandy.  Yes, we know people who know people who lost children in the Sandy Hook massacre.

So thankfully 2012 is almost over!  Wait, there's still 11 days left in 2012...what else bad is gonna happen.  Oh, that's right, the Mayans say the end of the world is tomorrow, so we got that to look forward to!  lol

Good riddance 2012!!  Bring on 2013!!

ok, so some good/great stuff did happen this year to Kyle/us too...maybe I'll do another 2012 wrap up post about that soon... but in the grand scheme of things it really did suck for us personally..... I don't know how I got thru it with it all without losing my mind...Thank god for my little white pill!
(read about little white pill here :-)

sorry, this post was just a weird downer... i started just writing about the funny holiday card caption the wife & i talked ("suck my ----") and then i started recounting all the sucky things... and we all ended up here...that's where stream of consciousness writing takes you...

oh well, happy holidays everyone!

the end...

Wednesday, December 19, 2012

"I Think He's Trying To Trick Us! He's Being Sneaky!" something he's never done before...

So Kyle's doing something the past few days that he's really never done before. He's trying to trick us. He's trying to play us. Let me explain.

Kyle is pretty much potty trained (knock on wood). I wrote about our potty training methods HERE.

Now what I mean by potty trained is that he doesn't have many accidents. He still can't communicate that he has to go, but he can hold it and he will wait til someone takes him...or at home or in familiar surroundings he will drop his pants and enter the bathroom and "void".

The dropping his pants. That's where the trickiness comes in.

Lately he is OBSESSED with looking at his reflection in the mirror. I recently wrote a blog post about it with video of him laughing looking in the mirror (read).

He's gone thru this mirror obsession before but never to this magnitude. He will go from mirror to mirror around the house and look at his reflection and laugh and laugh.

He will also find his reflection in other things you and I would never think of. He finds his reflection in the window, and the bathroom tiles, and the door knobs, etc, etc.

But back to the going from room to room. At night he goes back and forth between mirrors in his playroom...


the dining room...



and the bathroom....



The dining room mirror play is kinda is dangerous. The bathroom mirror play is dangerous and destructive. At least once a month he knocks out the pipes under the sink and water goes over the bathroom floor.  So, at points during the night, the wife and I are literally playing goalie and pulling him off the bathroom sink every 3 minutes.

"No climbing!  Get down!  What are you doing in here?  Do you have to go potty?  Do you wanna sit down and try to go pee-pee or cocky?  No, well that's the only reason to come in here, so get out!"  :)

So the past few days we've locked the bathroom door at points...like for the 19 minutes when the wife & I try to sit down to eat dinner.

Now, in the past, during the other phases where he was mirror obsessed, we would lock the door too, but we had to be careful that when he did have to pee or poop (go cocky) we got there in time.  In the past we'd find him with pants & underwear off, completely bottomless, at the bathroom door desperately trying to get in... or in the worse case scenario-- (only once or twice)-- he would pee on the floor if we didn't get to him in time.  It's was like a classic case of "The Boy Who Cried Wolf"... :-)

So the last thing we want this time is a potty training regression.  So during those 19 minutes when we are scarfing down dinner I'm continually checking to see if he's bottomless.

And for the past few days, maybe for the first time ever, it seems like he's trying to play us...he's trying to trick us.

We will see him run past us bottomless and say, "I'm sorry buddy, do you have to pee, I'll open the door" and he goes in and goes straight to climbing on the sink & looking/laughing in the mirror!    "Do you have to go or not?  What's going on here?!"  I make him sit on the toilet and nothing.  He doesn't have to go.  He's been tricking us.

He's used his noggin to figure out that being bottomless means bathroom access...

And as much as the goalie work of pulling him off the bathroom sink every 3 minutes is mind-numbingly annoying... his sneakiness is something I'm kinda proud of...

And I guess sneakiness is a kind of progress...

So you can file this as another example of what I wrote about in my post "What Progress Looks Like On My Corner Of Autism Avenue" (read)

THE END!!

Sunday, December 16, 2012

We're Doing Something Completely Mind-Blowingly Radical Tonight!

We're doing something completely mind-blowingly radical tonight! 

The wife and I are going to a family member's house for a pre-Christmas family get-together without Kyle!  This is gonna blow our family's minds!

First, a little back-story.  We had my extended family over for pizza last night.  We were 15 people altogether.  We usually host a Saturday night pizza night for my side of the family a week or two before Christmas.  And my aunt does something similar.  On a Sunday evening before Christmas she hosts a coffee & desert get-together at her house.  

So pretty much the same family members we saw last night at my house we would see tonight at my aunt's.  

And lately on Sunday evenings the wife & I have had some respite.  We have a great sitter / respite worker.  He is the older brother of one of Kyle's ASD friends.  He is 19 and he is awesome!  And Kyle loves him and is always so mellow when he is around.    Let's call him "Bill"

We currently get 6 hours of respite per week through our Medicaid Waiver.  I know I need to write another blog post about respite workers and medicaid waivers, etc, etc.  So save your questions about that.

But anyway... So we've had a nice routine for the past few Sundays.  We would get Bill around 5pm.  And the wife and I would sneak out to dinner & a movie...or we'd do a little shopping or whatever.

But tonight we thought we cancelled Bill because we were going to my Aunt's house for desert around 5:30pm with Kyle.

However, around noon today Bill texted the wife to say, "what time should I be there today?"

First we were like, "let's cancel him"

And then it dawned on us.  We could go to my aunt's house without him!  

ME:  "but is that wrong?"

WIFE:  "well where would Kyle have a better time?  home with Bill or at Aunt Linda's house where he goes once a year?"

ME:  "that's true...but it's gonna BLOW THEIR MINDS when we show up without him..."

And it is Sun 5:20pm and that is where we are headed.  We are headed to my aunt's house for desert & coffee...without Kyle.  And for some strange reason I'm more excited about this than getting out for dinner & a movie.

The wife and I both get to sit down at the table AT THE SAME TIME and enjoy our desert?  No taking turns & tag team parenting?  AWESOME!!  

Maybe I'll even have a few glasses of alcohol...just to celebrate!  :-)

Do I feel guilty?  Not really.  If it was somebody's birthday or actually Christmas dinner or a big occasion maybe I'd feel guilty... but this is the kind of occasion that a typical 9 year old probably wouldn't want to go to anyway.    

And right now Kyle is sitting on the couch next to Bill with a big smile on his face.  He is so happy to have Bill here.

So I go back to what the wife said.  "where would Kyle have a better time?"

So we are heading out...  but it is gonna blow our family's minds!

"Where is he??  With who?  But, huh?"

It should be an interesting evening


Saturday, December 15, 2012

"The Autism Holiday Challenge" written by Jené Aviram





My child suffers from sensory overload during the holiday season. I suffer from emotional overload. We have a holiday bond. We love it, we hate it, we look forward to it and we dread it. By the time the holidays are over, we’re totally frazzled and a complete emotional wreck.

Parents of autism spectrum kids have a holiday bond too.


We don’t have time to gossip about Aunt Maggie or figure out what to wear. We’re far too concerned about location and environment.


“Where are you celebrating this year”? “We’re going to my cousin for dinner. She has a garbage disposal in her sink that Matthew loves”. “Ah! Oh! Dear Me!” Comes the empathetic reply with an understanding nod of the head.


As parents of children with autism, we become more religious during the holiday season. We pray at every moment. We pray our children will show interest in their gifts. We pray they will behave when we’re out visiting. We pray they will sit at the dinner table. We pray they will have a good time. We pray they won’t hit a well meaning aunt as she tries to plant a kiss on their cheek. Most of all, we pray for the courage and strength to ignore the judgments, well intentioned advice and sympathetic looks from friends and relatives.


We scout the stores for gifts for our children when we know what they really want. The perfect gift is a box of “Exemption”. Exemption from crowds, malls and stores. Exemption from smells, noise and strange food on their plates. Exemption from large gatherings and family occasions. Exemption from chaotic unstructured days where nothing seems to make sense.


Don’t throw up your hands in despair just yet. These holiday tips will help you sail through those toughest moments.



SOCIAL GATHERINGS

The bigger the gathering, the more sensory stimulation your child will have to process. A great strategy is to turn your child’s attention away from the noise by focusing on something else. Get a money box and give your child a bag of coins. For each new guest that arrives, let your child put a coin in the box.
Rather than dread each new guest, you will find that your child will look forward for people to arrive. This way, he gets to put another coin in the box. If the occasion is not at your house, make sure you arrive a little early so your child can gradually adjust to the increasing noise level as new guests arrive. Make sure to take the money box and coins with you. The money in the box is for your child to keep. Make sure you let your child know he can buy whatever he likes and
MARK the shopping day on the calendar so he can look forward to it.



SHOPPING EXPEDITION

Prepare your child ahead of time. Setting a schedule will help your child know what to expect. A good example is to say “On Monday we’re going shopping. First we’ll eat breakfast and then we’ll get in the car. We are going to four stores, then we’ll buy a snack and then we’ll come home”. Be as detailed as you can. Name the stores and the items you plan to purchase. If possible, get to the store early in the morning when it’s still relatively quiet. Take a small entertaining toy with you that will hold your child’s attention. A great idea is a stress ball that lights up when you squeeze it. Buying your child a treat for good behavior is very motivating. It doesn’t have to be big. Noise putty and laser wands produce hours of entertainment.


GIFTS
Two important skills are learning how to give a gift and accept a gift. Start by teaching your child to accept a gift. Wrap at least 5 different items. These gifts should be FUN and contain toys your child enjoys. Examples are “a snake that jumps out of a can”, “light-up maracas” and “neon fans”. Give your child the first gift and use visual or written prompts which demonstrate “Thank you”, “opening a gift” and proclaiming appreciation such as “Wow, this is great!” Teach as many times as necessary but make sure the gifts are unique and entertaining to your child. Use a similar strategy when teaching your child to give a gift. Visual or written prompts should demonstrate “This is for you” and “You’re welcome”. Make sure gifts contain fun items as this will encourage your child to remain present when the recipient is opening the gift. Practice with a sibling or another parent. Teach your child give the gift and use the correct responses such as “You’re welcome”.


THE DINNER TABLE

How long should my child stay at the dinner table? This is a common question among parents of children on the spectrum. The dinner table is often one of the most stressful parts of social gatherings. First of all, there is “meltdown fear”. If a child chooses this time to have a meltdown, it will certainly be one of the main events of the evening. If a child is unable to stay at the table but has a tendency to place himself in dangerous situations or wreak havoc in someone’s house, it’s impossible to relax and enjoy a meal. Invariably, parents have to take turns to ensure their child is safe. Try some of these helpful tips for a more relaxed evening. If your child is a picky eater, this is probably not a good time to encourage him to try new foods. Let him eat foods he is comfortable with and don’t put anything on his plate that bothers him. If your child refuses to eat anything, that’s OK too. He’ll probably make up for it when he gets home or perhaps the next day. If your child is doing a great job staying at the table but needs a break, use a timer. Set the timer for 5 minutes. When the timer rings, guide your child back to the table. Encourage your child to remain at the table for about fifteen minutes before the next break. If your child is very resistant to being at the dinner table, try using small toys that can be kept on your child’s lap. Some examples are action figures, small cars or simple objects that your child enjoys touching and playing with. This will help direct your child’s focus on the toys, rather than concentrating on staying at the table.


RELIGIOUS SERVICES

Go to your regular Church, Synagogue or place of Worship. If you are out of town for the holidays, try and give your child a brief tour when it’s still relatively quiet. Educate your child about the holidays and explain the customs. Whether it’s decorating the Christmas tree, lighting a Menorah or any other tradition, an understanding of the holiday will make your child feel more connected. Write a social story about religious services so your child is prepared and knows what to expect. The story should contain elements such as who will be leading the service, who your child will sit with and actions your child will be expected to perform such as sitting quietly, greeting people or singing. The story should define when you will be leaving so your child knows there is a finite end. Take along small, non-distracting toys to keep your child occupied. During services empower your child by allowing him to make decisions. For example when your child is expected to sit quietly you could say “We have to be quiet now. Would you like to read your book or play with your Zoo Benders?”


JUDGMENT
One of the hardest things parents face are the perceptions that others have about their children. They cringe when people stare at their children or make comments within their child’s earshot. While it may appear that children on the spectrum aren’t paying attention, they’re usually taking it all in and parents are afraid for their child’s self esteem. If you notice this happening, stand in the way of your child and the stares. Direct his attention so that he can focus on something specific rather than the comments around him. Because people care so much, they regularly offer advice. While this is well intentioned, parents of autism spectrum kids are tired of receiving advice from people who often have very little understanding about autism. While it’s tempting to give that person a mouthful, try this strategy instead. Imagine their advice written on a piece of paper. See yourself tearing up the piece of paper into little bits and dropping it on the floor. Stomp on the paper, crushing it beneath your feet. As you smile in satisfaction, a big gust of wind blows the bits of paper out the window and the advice is gone. Judgmental comments are sometimes harder to bear and many parent with autism spectrum kids have heard statements like “You should discipline your kids”, “No child of mine would get away with that” and “You shouldn’t let your child behave that way”. If the comments continue and you absolutely can’t refrain from replying try responding with “I totally get where you’re coming from because I used to think exactly the same way. Now that I actually have a child with special needs, I’m far more enlightened. I’ve learned that strategies for typical children simply don’t apply to my child. However, I’m sure you have the best of intentions and I thank you for your concern.”


ENJOY YOURSELF

Don’t forget - it’s your holiday too! While you’re so busy taking care of everybody else, make sure you make the time to enjoy yourself. Having a child on the spectrum has given you a more stressful life than you anticipated. This year you’ve taken care of your children, spent time in meetings, read IEP’s, communicated with teachers and therapists and learned about new services. You’ve also had to take care of your “regular life”. Just like the rest of us, you felt great about yourself when you were being proactive and you felt awful when you thought you could be doing more. That’s how it is when you’re the parent of an autism spectrum child. Well it’s time for you to kick back and relax. If your child needs constant supervision, accept help from nieces, nephews, aunts and uncles. Designate specific times for you and your spouse to take turns watching your child. This way, you know where you stand. As an example, you will eagerly look forward to 7:00pm because for the next hour you’re free to relax and spend time chatting with friends and family. Make the most of this holiday because you deserve the break.


Written by Jené Aviram


Your friends at Natural Learning Concepts would personally like to wish you and your family a safe and happy holiday filled with love, laughter and joy.

FOR MORE GREAT RESOURCES VISIT http://www.nlconcepts.com  
This article is property of and copyright © 2003-2011 Jené Aviram of Natural Learning Concepts. Reference of this article may only be included in your documentation provided that reference is made to the owner - Jené Aviram and a reference to this site http://www.nlconcepts.com
Jené is an accomplished author and developer of education materials for children with autism and special needs. She is a co-founder of Natural Learning Concepts, a leading manufacturer for special education materials and autism products. Visit the Natural Learning Concepts website at http://www.nlconcepts.com or call (800) 823-3430 
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  If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above?  This way I can make a little money.  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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Friday, December 7, 2012

"I'll Take Aggression Over Seizures Any Day...."






"I'll Take Aggression Over Seizures Any Day...."

These are the types of trade-offs we are making these days.

I posted last week about an email we sent to Kyle's psychopharmacologist (read) about Kyle's increased aggression, mostly at school.  It's gotten to pretty much legendary proportions.  He just acts out big time  for a big chunk of the day while he's there.  

We see a taste of it at home, but not nearly what they see in school, (maybe because we ask less of him?)

So we got the aggression going on.  

We've also got the return of one of my least favorite stims/habits...playing with saliva.  Not spitting, per se, but using his thumb and index finger to take a dollop of saliva out of his mouth and placing it around the house.

And his breath holding which had been slowly decreasing thanks to a year of behavior therapy is back with a vengeance. 

And he's slowly having more pee-pee accidents of late.  He wet the bed again last night.  :-(

And he's been a bit more OCD-ish and high energy lately...constantly climbing on the bathroom sink, constantly stimming in mirrors all over the house

So, add all of that up and you could say that Kyle's had a bit of a behavioral regression lately...which really sucks.  And some of these regressions can kinda/sorta be timed to Kyle going on an increased dose of his anti-seizure med, Depakote, last month.  

But with this behavioral regression comes two pretty big positives.  He's been seizure free since going on the Depakote and he's put on a few pounds and has quite an appetite.  He also seems less clumsy, seems to have better balance.  

The seizures & appetite were two HUGE issues, that for the time being it seems like we don't have to worry about that much.  
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So, I think I have come to the realization that it's ALWAYS gonna be that when we kinda solve one problem we create another one.  It's NEVER gonna be perfect.  We are probably NEVER going to be at a place where all of Kyle's medical/behavioral issues are settled at the same time.  

It was hard enough trying to do that when we were just dealing with autism for the first 8 years.  Now throw seizures/epilepsy in the mix and it seems like we are always going to be in a place of adjusting meds to help reduce seizures, while trying to find the right balance of the behavior issues that we can live with.

And for right now, we will take aggression over seizures any day of the week.  And for right now...all you teachers are gonna hate this, but the school is gonna have to suck it up and break through the aggression they are seeing at school because even though the depakote might have made his aggression  worse, it's helping the seizures and it's helping him put on some much needed weight, so we are sticking with it for now....  (the aggression at school actually pre-dates the depakote, but it has gotten worse the past few weeks)

So that's what we are doing.  On the advice of his psychopharmacologist & neurologist we are slightly increasing his dose of klonopin (which has been a godsend since last sept) to see if that helps with the aggression and ocd issues, but we are not going to make him a zombie to get rid of the aggression.  We're all gonna have to break through it...

What sucks about all this, is as usual, it seems like we are never ever talking about Kyle making any real cognitive progress at home or at school.  It always seems to be about managing behaviors and medical issues, and getting him back to being a healthy, happy kid.  Right now we've got the healthy part, not entirely the happy part.  

But it feels like it's been YEARS since we've seen any real significant cognitive progress.  His IEP's have kinda looked the same for the past 2-3 years.

But as I said in another post Kyle's happiness is more important that anything else to me (read), but it sucks hearing all these negative reports about from school every day.

I said to the wife last night when I got home...

"New rule.  I don't want to hear about Kyle's day unless there's something positive in there to tell me...cuz when you recap it you get just as annoyed retelling the story.  So, no recaps anymore."

And the wife & I sat and ate dinner without recapping whatever crazy meltdowns happened that day at school or at his behavior therapy appointment.  And it was peaceful and lovely.  

Ignorance is bliss...

I think that's all I got.  Wow, this post was like one of my old posts.  It is literally all over the place!!  Oh well, I hope it kinda makes sense...

OVER & OUT!
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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!!







Wednesday, December 5, 2012

I Need A Lesson In Typical Parent Small Talk...









(originally written & published on December 5, 2012) 



I was at a business lunch yesterday with a coworker and a couple of outside clients.  These are two very nice gentlemen who don't really know me that well.  They know virtually nothing about my private life.  I haven't seen them in a few years.  And at these types of lunches we rarely talk about work....even though they are trying to solicit business from us.  The conversation is about sports, news, the TV industry at large (I work in TV) , etc, etc.  

But invariably at some point the conversation comes around to more personal stuff.  
"If I remember you have a son, right?  Any other kids since last time?....  How old's your son?....  Oh, he must be getting excited for the holidays.....  Has he made out his list yet?....  What does he want?...Does he still believe in Santa"

All pleasant small talk kinda stuff.

But I freeze up.  

As y'all know, my son has severe non-verbal autism.  He doesn't get the holidays.  He can't make out a list.  He can't tell us what he wants.  And I don't feel like telling them what my son really wants is to play with & eat beads all day and laugh at himself in the mirror.  "What does my 9 year old son want for Christmas?  More beads & a portable, unbreakable mirror."











I'm not sure if it's obvious to the person asking, but in my mind, I freeze up.  I don't know how to fake it.  

I don't know how to have "typical parent" small talk.  I don't know how to muddle my way through it.

What I end up saying sounds like I'm in the witness protection program...

"He's 9 years old...Nope, no other kids, just the one.... Yeah, he's getting excited for Christmas...  Well, he hasn't really made out a list yet...or told us what he wants...but he's got some time...Santa?  I don't know... How about those NY Jets?  What a disaster, right?"

I'll just try & change the topic.  

Now, I'm not trying to hide that my son has autism.  I'm not ashamed about that at all.  But even though I have this page & blog, I don't like to or want to live & breathe autism 24/7.  That's not all that I'm about and I try not to let "The Big A" consume my life.  


So, in this situation, I just want to enjoy my lunch and not get sucked into talking about autism for a big chunk of the meal.  Without a doubt they will have some connection to autism and want to talk about that and ask questions...  And that would be totally fine.  i would be totally fine with that in certain situations... But these are not people that I want to drag down into the autism trenches with me on a Tuesday afternoon over Mexican food.  The fact that my son has severe autism is on a need to know basis... and I feel that they didn't need to know.  

But I got to get better about faking it.  

Anybody have any advice?  I need a lesson in how to have typical parent small talk.  
Is there a "Learning Annex" course on that?

:-)

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!!


The Torture Of Putting Kyle To Sleep On Some Nights... (with audio!)

Ok, so I'm writing this at 1:15am on Tues nite/Wed morning Dec 4-Dec5 cuz I can't sleep.  

I had to work late tonight.  I normally get home around 6:45pm.  Tonight I got home at about 8:15pm.

Based on the texts my wife and I traded throughout the day I knew that they already had a long day.  

When I got home, I found them in his playroom, in the dark, in his cozy nook watching a video on the iPad.  It looked like he was well on his way to going to sleep.  

Since I'm normally the one who puts Kyle to sleep (I am "The Sleep Whisperer") and since the wife already had a full day, I took over as soon as I changed out of my "work clothes".

I brought Kyle up to his bedroom, turned off the ipad and sat with him in the dark.  

As I've previously written in my "All Hail Melatonin" post (read) the going to sleep routine changes on a daily basis.  It's been going relatively smoothly lately, however, partially due to an adjustment period from a new anti-seizure med that may make him drowsy.  

Some nights lately, he'll fall asleep on the couch and I'll carry him up.  Other nights lately on the floor in his playroom nook.  Sometimes in his bed.  Sometimes in our bed recently.

But, all in all, the getting to sleep routine has been great lately.  He has had a few nights of waking up in the middle of the night and requiring more melatonin to get him back to sleep... but getting to sleep has been easy breezy.

Not tonight.

And I will readily admit before we get started... that I'm not proud of my lack of patience.  In the grand scheme of things he was asleep by about 9:30pm, which is only about an hour later than usual.  But listen to what that hour sounded like.

Here is what it sounded like at about 8:45pm, in the dark, in his bedroom.  You can hear him laughing, flopping around, holding his breath, playing with his saliva, kicking me, trying to get out of bed, etc, etc. 

(AUDIO ONLY)


 Again, I'm not proud of my lack of patience...or the tone of my voice.  My kid is laughing & giggling and I'm yelling....but sometimes my patience wears thin...especially when I'm being kicked.  That's just reality...  This had been going on for just about 30 minutes at this point.  And I'm starting to lose it.  And I know he's tired.  And once he settles down he'll go to sleep.

And on some nights like this, when the flopping around has gone on this long already, I'll cut my losses and bring him back downstairs to the living room, make him some popcorn, give him more melatonin, and let him watch a bedtime show in the dark on the couch.  

But I can hear the wife on the couch laughing at a sitcom, enjoying herself.  So I decide to suck it up and stay upstairs...even though my patience is wearing thin.

At about 9pm, after another 15 minutes like you just heard, I say "let's try going to the potty"  

I take him in there, and he proceeds to pee like a racehorse!  I'm like "Dude!  Why didn't you give me some sign that you had to go?!"

I'm thinking, "ok now maybe he'll finally settle down"

As a change of atmosphere, I bring him to my bedroom, and he plops onto my bed.  And he is a little calmer... but the next 20 minutes sound like this.  I recorded this at about 9:20pm.  

(AUDIO ONLY)


The breath holding in the calming minutes before he falls is asleep is INSANE sometimes!  It's like he has to almost pass out from breath holding in order to fall asleep.  (We've been working on a breath holding protocol / behavior therapy for over a year now...but it's a slow process, but that's for another post).

By 9:30pm, he was asleep.  By 9:35pm I was asleep.  At about 1am, I heard him stirring next to me and realized that my snoring may be waking him up!  So I carried him into his bed.  Then I found the wife downstairs passed out on the couch (with the tv still going) and I came into my home office and started writing all this down.

That is all.  The end.  Just a little "slice of life" that shows how torturous the bedtime routine can be sometimes...but as I'm writing this and listening to how exasperated I sound on these videos, it makes me flash back to the pre-melatonin days and I remember the every night was pretty much like that.  

And there was alot of yelling and exasperation and sleep deprivation for all three of us, pretty much every freaking night.  So please don't read this and think I'm complaining!  I thank my lucky stars that this is a once in a while occurrence.  And once again I bow down to the Melatonin Gods.

All Hail Melatonin!

It's now 1:45am.  Maybe I'll take some melatonin.

Good night all!

:-)

Saturday, December 1, 2012

Video Of The King Laughing Hysterically At His Reflection Tonight....


Sat Dec 1 @ 7:32pm


This went on for about 90 minutes straight between this dining room mirror and sitting on the bathroom sink and looking & laughing at the mirror in the downstairs bathroom...


Sat Dec 1 @ 8:03pm


Oh by the way, this is what his tshirt says.  It's one of my FAVS!!




This Year's Annoyingly Adorable Singing Christmas Dog Purchase... :-)

Last year I posted special sarcastic thanks to my mom for getting Kyle a singing Alvin & the Chipmunks Christmas doll (read).

Here's her annoyingly adorable or adorably annoying singing doll purchase for this holiday season.  She bought this singing dog for Kyle on Thanksgiving day, so we get a full 5 weeks of it before Christmas even shows up.

Thanks a lot mom!  :-)  

This one is cuter than the Alvin one.  I think I'll be able to tolerate this for the first 237 times I hear it.  After that it's going thru the window.  Let's hope the batteries drain before then... lol...






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