One of Those Days

Yesterday was one of those days when you wish that the people 'Who think they know' were here.  It was a crazy morning.  Colby tried to hit dad on the way out the door to school.  He told us both to shut up. 


God, please hear my prayer.  I am desperate.  Please send us the behavior people soon! 
All things through you, Amen!

12 Great Tips

These are some great tips from the Autism Society.  On each "tip" how we, Colby's Family, deal with it will be in RED

 

 

Twelve Tips for Helping People with Autism 

and Their Families Have a Happy Holiday

While many happily anticipate the coming holiday season, families of people on the autism spectrum also understand the special challenges that may occur when schedules are disrupted and routines broken. Our hope is that by following these few helpful tips, families may lessen the stress of the holiday season and make it a more enjoyable experience for everyone involved. The following tips were developed with input from the Autism Society, the Indiana Resource Center for Autism, Easter Seals Crossroads, the Sonya Ansari Center for Autism at Logan and the Indiana Autism Leadership Network..
1. Preparation is crucial for many individuals. At the same time, it is important to determine how much preparation a specific person may need. For example, if your son or daughter has a tendency to become anxious when anticipating an event that is to occur in the future, you may want to adjust how many days in advance you prepare him or her. Preparation can occur in various ways by using a calendar and marking the dates of various holiday events, or by creating a social story that highlights what will happen at a given event.
 Colby's Family find it helpful to talk about the upcoming event with Colby.  We also host many things at our house, so that Colby is in a familiar environment and can go to his "quiet place" any time he likes. 

2. Decorations around the house may be disruptive for some. It may be helpful to revisit pictures from previous holidays that show decorations in the house. If such a photo book does not exist, use this holiday season to create one. For some it may also be helpful to take them shopping with you for holiday decorations so that they are engaged in the process. Or involve them in the process of decorating the house. And once holiday decorations have been put up, you may need to create rules about those that can and cannot be touched. Be direct, specific and consistent.
 Colby loves the decorations.  All of Colby's Family, including Colby, help decorate.  We each get to put up our own stocking. 

3. If a person with autism has difficulty with change, you may want to gradually decorate the house. For example, on the first day, put up the Christmas tree, then on the next day, decorate the tree and so on. And again, engage them as much as possible in this process. It may be helpful to develop a visual schedule or calendar that shows what will be done on each day.
 See above

4. If a person with autism begins to obsess about a particular gift or item they want, it may be helpful to be specific and direct about the number of times they can mention the gift. One suggestion is to give them five chips. They are allowed to exchange one chip for five minutes of talking about the desired gift. Also, if you have no intention of purchasing a specific item, it serves no purpose to tell them that maybe they will get the gift. This will only lead to problems in the future. Always choose to be direct and specific about your intentions.
This is a MAJOR problem with Colby.  I made him tell me EVERYTHING he wanted while I wrote it down, and I posted it on the fridge.  Whenever he tells us what he wants for Christmas, we tell him that we know, and that it is on the refrigerator. 


5. Teach them how to leave a situation and/or how to access support when an event becomes overwhelming. For example, if you are having visitors, have a space set aside for the child as his/her safe/calm space. The individual should be taught ahead of time that they should go to their space when feeling overwhelmed. This self-management tool will serve the individual into adulthood. For those who are not at that level of self-management, develop a signal or cue for them to show when they are getting anxious, and prompt them to use the space. For individuals with more significant challenges, practice using this space in a calm manner at various times prior to your guests' arrival. Take them into the room and engage them in calming activities (e.g., play soft music, rub his/her back, turn down the lights, etc.). Then when you notice the individual becoming anxious, calmly remove him/her from the anxiety-provoking setting immediately and take him/her into the calming environment.
 This is why we host most events in our house. 


6. If you are traveling for the holidays, make sure you have their favorite foods or items available. Having familiar items readily available can help to calm stressful situations. Also, prepare them via social stories or other communication systems for any unexpected delays in travel. If you are flying for the first time, it may be helpful to bring the individual to the airport in advance and help him/her to become accustomed to airports and planes. Use social stories and pictures to rehearse what will happen when boarding and flying.
 We do not travel for the Holidays, but we do travel with Colby quite a bit.  In order to travel with Colby, it takes a lot of prep on our part.  We have to look into EVERY restaurant that we may want to eat, and make sure that they have something Colby will eat.  


7. Know your loved one with autism and how much noise and activity they can tolerate. If you detect that a situation may be becoming overwhelming, help them find a quiet area in which to regroup. And there may be some situations that you simply avoid (e.g., crowded shopping malls the day after Thanksgiving).
Unfortunately, having a child with autism disrupts your life like a typical child would not.  There are things as parents we have had to learn that we can not do. Our children have to come first.  In my instance, I love to entertain, but due to Colby's lack of wanting people around, I just can't and won't do it as often as I would like. 


8. Prepare a photo album in advance of the relatives and other guests who will be visiting during the holidays. Allow the person with autism access to these photos at all times and also go through the photo album with him/her while talking briefly about each family member.
This is not something we do.  Most of the people coming over, Colby already knows. 


9. Practice opening gifts, taking turns and waiting for others, and giving gifts. Role play scenarios with your child in preparation for him/her getting a gift they do not want. Talk through this process to avoid embarrassing moments with family members. You might also choose to practice certain religious rituals. Work with a speech language pathologist to construct pages of vocabulary or topic boards that relate to the holidays and family traditions.
In Colby's family, we only give out one gift at a time, and we all wait until that person has opened their present to give out another. 


10. Prepare family members for strategies to use to minimize anxiety or behavioral incidents, and to enhance participation. Help them to understand if the person with autism prefers to be hugged or not, needs calm discussions or provide other suggestions that will facilitate a smoother holiday season.
We try to prepare people for Colby, but until they see it first hand, they do not get it.  The best thing we have found is to tell people not to take Colby's lack of acknowledgment personally.  


11. If the person with autism is on special diet, make sure there is food available that he/she can eat. And even if they are not on a special diet, be cautious of the amount of sugar consumed. And try to maintain a sleep and meal routine.
Again, this is why we host many things at our house. 


12. Above all, know your loved one with autism. Know how much noise and other sensory input they can take. Know their level of anxiety and the amount of preparation it may take. Know their fears and those things that will make the season more enjoyable for them.
Yes, please do know and understand your loved one with Autism.  Know that behaviors are a way of communicating.  Help them be comfortable with their surroundings.

Getting into the Christmas Spirit

Twas the Night before Christmas Poem

Twas the night before Christmas, when all through the house
Not a creature was stirring, not even a mouse.
The stockings were hung by the chimney with care,
In hopes that St Nicholas soon would be there.

The children were nestled all snug in their beds,
While visions of sugar-plums danced in their heads.
And mamma in her ‘kerchief, and I in my cap,
Had just settled our brains for a long winter’s nap.

When out on the lawn there arose such a clatter,
I sprang from the bed to see what was the matter.
Away to the window I flew like a flash,
Tore open the shutters and threw up the sash.

The moon on the breast of the new-fallen snow
Gave the lustre of mid-day to objects below.
When, what to my wondering eyes should appear,
But a miniature sleigh, and eight tinny reindeer.

With a little old driver, so lively and quick,
I knew in a moment it must be St Nick.
More rapid than eagles his coursers they came,
And he whistled, and shouted, and called them by name!

"Now Dasher! now, Dancer! now, Prancer and Vixen!
On, Comet! On, Cupid! on, on Donner and Blitzen!
To the top of the porch! to the top of the wall!
Now dash away! Dash away! Dash away all!"

As dry leaves that before the wild hurricane fly,
When they meet with an obstacle, mount to the sky.
So up to the house-top the coursers they flew,
With the sleigh full of Toys, and St Nicholas too.

And then, in a twinkling, I heard on the roof
The prancing and pawing of each little hoof.
As I drew in my head, and was turning around,
Down the chimney St Nicholas came with a bound.

He was dressed all in fur, from his head to his foot,
And his clothes were all tarnished with ashes and soot.
A bundle of Toys he had flung on his back,
And he looked like a peddler, just opening his pack.

His eyes-how they twinkled! his dimples how merry!
His cheeks were like roses, his nose like a cherry!
His droll little mouth was drawn up like a bow,
And the beard of his chin was as white as the snow.

The stump of a pipe he held tight in his teeth,
And the smoke it encircled his head like a wreath.
He had a broad face and a little round belly,
That shook when he laughed, like a bowlful of jelly!

He was chubby and plump, a right jolly old elf,
And I laughed when I saw him, in spite of myself!
A wink of his eye and a twist of his head,
Soon gave me to know I had nothing to dread.

He spoke not a word, but went straight to his work,
And filled all the stockings, then turned with a jerk.
And laying his finger aside of his nose,
And giving a nod, up the chimney he rose!

He sprang to his sleigh, to his team gave a whistle,
And away they all flew like the down of a thistle.
But I heard him exclaim, ‘ere he drove out of sight,
"Happy Christmas to all, and to all a good-night!"

 

Happy Birthday

TO HAILEY! 

Being a part of Colby's family means that we love you very much!

Hailey, you are truly the best kid I know.  You are patient, kind and free hearted.  You are brilliant and beautiful!

Hailey is the only 11 year old I know who knows what she TRULY wants to do with her life.  She wants to be a scientist.  She does not want to cure cancer or autism, she wants to cure BOTH! 
Now that is ONE AMAZING KID!

We love you Hailey,
COLBY'S (and your) Family

Life as we know it (part one)

Normal Means: "conforming to the standard or the common type; usual; not abnormal; regular; natural."  

 

Needless to say, we do not "CONFORM" much in this family.  We are not a typical family.  We are abnormal, and not the "common type".  And do you know what?  WE ARE OK WITH THAT!!!  

 

Like other families, we have our good days and our bad ones, but ours go to the extreme.  Our good days are what other families would consider bad ones, and our bad days are REALLY bad!  Our days are long, full and exhausting.  And I LOVE the fact that there are some who think they KNOW all about our life, when in reality, they know nothing!  

 

Well, this is life as we know! 

Brothers

Here is a picture of Nicholas dressing up as BUZZ LIGHTYEAR so that he can play TOY STORY with Colby.  

He was trying to hide behind Hailey as Hannah was taking the picture.  He was not very happy with us taking a picture of him dressed up as Buzz.  I think he thought that girls would think he was dorky for dressing up to play with his little brother.  I, personally, think that is very nice.  I think nice girls would think so too!

I know that most 9 year old's do not want to dress up and act out movies, but this is just part of our life!

Should we eat...

Pizza for breakfast? 

We are an ANYTHING goes kind of family.  Most of the time, breakfast is "Fend For Yourself".  Colby does not eat breakfast food...well, he eats cereal, but not for breakfast. 

Yesterday, while in Costco with Daddy, Colby asked for one of their HUGE, fresh, pizzas.  He started asking for pizza at 5 am, and Mom held him off until 7:30. 

Pizza it is this morning!  It was good too!

FROM: Hailey

Thanksgiving...

...IS OVER!  

While we have been hearing this for several weeks now, it is official!  Thanksgiving is over!

Now it is on to the better holiday (in Colby's opinion)...CHRISTMAS!!!!

I hope you are all having a wonderful holiday season!

Thanksgiving from a Colby Point of View

For many American's, Thanksgiving is their favorite holiday, but I thinks Thanksgiving is terrible. To me, Thanksgiving is the worst holiday of the year. Mom spends all day cooking, and it is nothing I will eat. I have to wait until the turkey and the ham are done before Mom can cook my french fries. Some of my favorite people come over (like Uncky Ed), but instead of doing what I wants to do, they yell at the TV. That actually rattles my nerves slightly...I know they are mad, but are they mad at me? I want to hang out with everyone, but with all the different conversations going on, I can't keep up.

Ok Good, my french fries are finally done. I think I will go to my room and watch TV.  

I hope you all have a

'Twas The Day Before...

...THANKSGIVING

When all through the house, not a creature was stirring, because they were all afraid of MOM.  

She is cooking and cleaning, better stay out of her way. 

When she's in her zone, go to your room or she'll make you pay  

If she doesn't see you, she doesn't give you anything to do

We all sneak past for a snack in the kitchen or off the the loo

Hold on a sec, she is taking a break

I wonder if I can sneak a piece of that cake?

Just so you know, we all eventually get caught, and the chores are handed out! 

See all of you tomorrow,

Colby's Family

It is the simple things

It truly is the simple things that makes Mom and Dad smile.  Most parents can take only 1 or 2 'knock-knock' jokes, but Colby had us rolling this afternoon in the car.

Here are the knock-knock jokes Colby was telling us today:
COLBY IS IN BLACK-WE ARE IN PURPLE
Knock Knock-Who's There-Banana-Banana who-Knock Knock-Who's there- Apple-Apple Who-Knock Knock-Who's there-Grapes-Grapes Who-Grapes Grapes Grapes.

As a parent of both "Typical" and "Special" children, I know that Knock-Knock jokes from a 9 year old is not all that impressive, but I have to say, I am PROUD of Colby's silly knock knock jokes!

Working From Home

I know most people think that they would LOVE working from home...let me tell you, it is not always as easy people would think. 

On one hand, it is a luxury to work from home.  We don't have to find a baby sitter when the kids are out of school.  We can and are always home when they are.  We get to help them with school work.  We get to cook and eat dinner with them every night. 

BUT, on the other hand, it is not a luxury to work from home.  We get very little alone time.  We have to work all hours, and have to stop working because the kids need something.  Because we do not have a set schedule, we have to work from very early (me) until very late (Patrick). 

I did try working outside the home, but I could not find anyone to keep Colby for more than 1 week.

Well...All in a DAY IN THE LIFE AS COLBY'S FAMILY!

Behavior Therapy and Us

On Friday, we had one of the ladies for Scarab Behavioral come by to see about getting services for Colby.  She asked a bunch of questions and told us a little about Scarab.  She told us that they are similar to "Super Nanny".

One of the questions she asked us was, if we are REALLY willing to do ANYTHING to make this work.  Yes, we are willing to do anything.  Even if that means someone is here 40-50 hours a month for a year.  Someone is with us morning, noon and/or night.  Even if I don't like what they say, I am willing to do it! 

At this point, if things do not change, Colby will not be able to stay here at home, so I have to be willing.  I am not willing to have the alternative happen!

Not in Books

I want to know what all these people write books about how great certain therapies, diets, etc. are, but yet, I can never REALLY find Colby in any of them.   

While this is a great book, GF/CF is not for Colby.  We tried it for 3 months.  We changed EVERYTHING including soaps, toothpaste...I mean EVERYTHING.  Colby did not change.  His behavior was the same as always.  GF/CF may work very well for some kids, but not for mine.  

I have read many other books on Autism and what, not cured but  "So-and-so's" child better.  We have tried it all, and nothing has made Colby better.  Wel,l on the next book!

Regression

Regression means: the act of going back to a previous place or state.  


What is going on with Colby can not even be considered "REGRESSION".  He is not acting like himself.   Until a few months ago, he was never aggressive and violent towards us.  We always had our good days and our bad ones, but now they are different.  It saddens me to no end to know that if this behavior does not get under control, that Colby will not be able to live at home any longer.  

These are just the ramblings of a Mom lost in the world of Autism. 

Make a puzzle

I just came across this really cool puzzle maker!  Autism Speaks has a Puzzle Builder, and you can make your own puzzle!  I made a few of my family, and they would make nice Christmas gifts for family members!

Love, REALLY???

Yesterday, I came across an article named "Do you REALLY love your child with autism?"  I went to read and realized that Ms. Rudy was not questioning my love for my child, but the title really made me think.

Nicholas: My very goofy, but very loving oldest child!

Hannah: Gorgeous and funny, but has an AWESOME smart aleck attitude!

Hailey: Beautiful, Sweet and Funny!

Colby: 3 Full Time Jobs!

Will:  Nosy, but cute!

So, to answer the question, "Do you REALLY love your child with autism"...Yes, I REALLY love all of my children!

Autism Jokes

No, I am not going on a tangent about another star's not funny "JOKES" about autism.  However, I wanted to find a "You Know Your Kid Has Autism When..." type of joke, that would only be funny to those of us who live with Autism.  You know the type of joke I am talking about..."You know your kid has autism when you have watched the same movie scene a million times in one day."

I googled and binged it, and NOTHING, NADA! 

I may have start one!  Any of you who would like to help, please send me your, "You know your kid has autism when..." to me.  MELIAH_MIRANDA@YAHOO.COM

Monkey See, Monkey Do

Years ago, I started Colby monkey.  He climbed on, over and under EVERYTHING, including me!  This morning, I came across the perfect shirt for my monkey.

 

Image Credit: Autism Link Store

This shirt says it all!   

The Autism Link Store has some other super cute/cool things.  I love stores like these...they help Autism Awareness is so many way!

Chocolate, Tea , a Shrink...

...Or maybe just a GOOD STIFF DRINK??? 

Like this Pisco Sour???

. 

Actually, they all sound good right now, but since I have no pisco to make any pisco sour (and I am refusing to buy any until Thanksgiving), and I do not have any chocolate (besides baking cocoa), and I do not have time to see 'SOMEONE', I guess tea it is. 

Flash Back Feeling

We went to the Center for Child Development at Vanderbilt Children's Hospital yesterday.  The dr. seems to think that Colby also have Bipolar Disorder.  My heart is now in my stomach.  I had a flashback feeling of when Colby was first diagnosed with Autism.  I knew that there was something wrong with Colby.  I even knew that it was Autism, but to hear those words, "You son has Autism", from the Dr's lips really hit you hard. 

I had that same exact feeling yesterday.  In the past year, I knew there was more wrong than just Autism.  I even knew it was Bipolar Disorder, but to hear that yesterday hit me hard.  My heart is in my stomach right now.


I am not sure if I should laugh or cry? 

For the moment, in my mind, I am going to spend a minute in Chile (pictured below).

Our Idea of a Decent Day

Our Idea of a decent day is not that of a normal family. Most families think a 9 year waking them up multiple times a night and getting up for good at 4 am a BAD thing!  Most family consider tantrums VERY BAD!  Most families considering hitting, kicking, screaming, biting, pulling hair, and talking back, all REALLY VERY BAD!  We consider all of this bad as well, but we have to look at it relatively.

Did Colby go back to sleep?  Was there a reason he woke up (he is terrified of thunderstorms)?  Was Colby angry?  Why was he angry?  Did one of his siblings do something to him (they have been known to do something they are not supposed to do)?  How many times did he lash out?  Why did he lash out?  How long did the tantrum last?  Was he playing or was he trying to harm (he does not know his own strength)?

Our idea of a decent day is:
Waking up only once in the middle of the night, and I (mom) do not mind the 4 am wake up call.
A tantrum lasting less than 20 minutes is good too.
Hitting (kicking, biting, etc.) a family member only once.


Our typical day is not at all typical, but life is never boring!

3 Things (by Dad)

As everyone knows, life in our household is a constant adventure...and I wouldn't trade it for anything.  But, this blog is about our Colby and about the simple things in life.  I have promised my wife that I would write about my boy, so I will share 3 thoughts from today...three ways that my BFC (Best Friend Colby) made me smile:

First, happened this morning.  I watched, marveled actually, as Colby started drawing the Big Bad Wolf.  He is such an immensely gifted artist; I love to watch him work.  At any rate, my Monkey-doodle started with his outline and it was spot on...he had no picture, nothing to reference.  He had seen the Big Bad Wolf and a show and drew it from scratch.  It was simply amazing.  I love watching Colby draw; he is so good at what he does and he proved it again today.  He is loads better than his dad...who is lucky to draw a stick figure correctly ;-)

Second, Colby has taken to liking Soccer and Football.  He attended a game and saw his brother Nick play, and ever since that time, he has talked about playing football with me and "the boys".  Today, he found my 2 titans jerseys...he put on the smaller one and gave me the other and told me that we were playing football.  I simply could not help by laugh.  His perception of life never gets old...I loved it!

Finally, Colby loves Christmas..., or, rather, the idea of getting toys for Christmas (specifically Toy Story toys..Thanks Gran for buying those already!!!).  But, we are cleaning and re-organizing our house and Colby saw us getting out the Christmas decorations.  I asked him if he wanted a X-mas tree downstairs with him, and he has bugged us about it since.  But, that isn't the point of this particular observation.  This afternoon, as I walked downstairs, I noticed that my Colby had put up on our wall a Santa light fixture that goes in windows.  I am not sure how he did it, but he made it stick to the wall.  I am still impressed.  It looks great!

Friends, these things may not seem like much (heck, my Willy is doing tons of things that blows my mind too), but these simple things mean so much.  For all of the frustration that autism brings, these are kernels of joy...they make us realize just how special and unique our Colby is...and how much joy he brings into our lives.  




 

My BFC (Best Friend Colby) By Patrick

The outsiders view of Colby:


Since everyone else is writing a blog about our monkey-doodle, I thought I would say some things about him as well.


As some of you know, I came into Meliah's life late and to Colby's even later.  Although Meliah, as any parent should, had reluctance at the idea of me meeting Colby (when she and I were still dating), she eventually relented.  I remember my first meeting with Colby; a sweet kid, who loved McDonalds.  That is where we first went to meet...the McDonald's on Charlotte.


From there, Colby and I became inseparable.  I don't know what it was, but that little guy changed my life and my relationship with Meliah.  I loved Colby as my own and I still do.  He is my other son and he calls me Dad.  Don't get me wrong, Colby can be a handful, and he can drive me nuts.  But, he is also sweet and caring and he now realizes that Meliah and I are not leaving him, no matter what he does at home.


I will write more as I can, but Colby is my sweet boy.  He is my "monkey".  I love him as my son and I look forward to watching him grow up.  And no, I will not let Meliah take pictures of me as Buzz Lightyear ;-)

Toy Story and Colby

One of the things I should have noticed about Colby was his love for Toy Story.  If Colby needed to stay out of stuff, I would turn on Toy Story.  If Colby was upset, and I needed him to calm down, I could turn on Toy Story.  I probably should have known that "Normal" kids did not watch the same movie over and over for hours on end, but oh well!

Now that Toy Story 3 has come out to DVD, Colby has a new fascination...Acting out all 3 movies!  He dresses up like Woody



and makes Dad dress up like Buzz.


They stand in the living room acting out the movies.  It is hilarious, but Dad refuses to let any of us take pictures or video.    As soon as we can sneak a picture or 2, they will be up on here!

Mom Found Some Cool Stuff for Herself!

Picture by: Sara Ronayne

I am no fashion queen, but I found a website with some super cool jewelry.  Puzzle Piece Jewelry  is helping spread Autism Awareness with some nice jewelry.  I have not ordered any yet, but I am hoping to put some of this stuff on my Christmas list! 

TV (by Hailey)

Colby likes to draw, eat McDonald's and watch TV.  Hannah and I do not like the shows Colby likes to watch.  Sometimes we have a fight about who gets to watch.  Sometimes we win, and sometimes Colby does.

Hannah and I need to learn patience.  We do not like it when we have to wait for our turn to watch TV.

Patience is a good virtue that everyone needs more of anyway!

A Little Background on Colby and His Family

As you have learned from the "About this Blog" page, Colby has Autism, and we are Colby's family.  We are all learning about how to live with autism.  Colby was diagnosed with autism 6 years ago, but every day is different from the one before.  Like AA, we take this life one day at a time.  Colby is a very hyper 9 year old boy.  We have a blended family.  Dad has not always been a part of our family, and Will is an even newer addition.   Mom and Dad have the luxury (or torture, depending on how you look at it) of working from home.  Actually, it is more that they did not have the luxury of working outside the home.  Mom tried to put Colby in morning care at school, but they would not keep him.

 This is Dad and Colby

We go on lots walks and hikes because Colby likes them, and it gets us all out of the house.  We like to travel as a family, but we like Gatlinburg a lot.  It is not to far away, and there are lots of places to hike there.  (we can write more about that later)

We have our good days and our bad days, but our days are NEVER dull.  Colby keeps us all on our toes.  Sometimes we cry over our frustrations.  We always laugh at Colby's antics.  Boring is not a word we use in our house!

Halloween is over...

For about a month, Colby has been asking, "Is it Christmas?"  We have been telling him that Halloween is has to come first.  Well, now Halloween is over, so I guess we better bring on Christmas!  

We have all been trying to tell Colby that first comes Thanksgiving, but he really does not care. 

We will be the first in the neighborhood to put up our Christmas tree...Halloween is over, so bring on Christmas in Colby's Family!