Our Family's Journey Through Autism And The Untold Beauty Of It. Megan is an amazing child with autism through her we have learned the beauty of autism.

Tuesday, January 29, 2008

Dad's Chronicles-Meeting Megan

Hi, Jason here. I'm taking my first stab at writing a post on this blog about Megan and my introduction into the world of autism. I will title all my post's with the title "Dad's Chronicles" followed by a post title.So here we go, hope you enjoy =]

When Kelly and I first moved in together I knew she had children, and that they were girls. I knew that one of them had Autism and the other was hyperactive, but wasn't sure which one was which. It became apparent immediately. Stephanie was hyperactive every second of every day for the first 2 years of our relationship, and that was interesting to watch *wink* Megan on the other hand wasn't hyperactive at all, don't get me wrong though she was active, just not overly active. Her and I started our bond with play as most of her most established relationships start. The first time I tried playing with Megan it became obvious that this kid liked to be thrown around. This was a flaming contrast to her sister Stephanie whom didn't like being picked up at all let alone being thrown around and spun upside down, but Megan reveled in this kind of play, and I being the oldest of seven in my family was well equipped to give her what she liked. With play came friendship, and later became trust. Now this may make it sound like our introduction was all fine and dandy, but this couldn't be further from the truth. Walking into Megan's life without any knowledge about autism was firstly unlike me to walk into any situation uneducated, and secondly a full out culture shock. The world of Megan was abrupt and the switchbacks were frequent. Her inability to communicate with us made it hard. Screaming fits over giving her milk when she wanted Cheerio's, guessing everything wrong more than half the time, was straining. Not being able to get her to listen let alone follow any of your requests was foreign to me. Not that my family was good at listen or following request *wink*

Everywhere Megan went, to this day I might add, was a disaster. She would take down shelves and throw everything on them to the floor. She would dump anything with a lid, anything. One time she dumped ever bottle of shampoo conditioner and body wash in the bathroom and proceded to take off all her clothes and slosh around in the soap. The funny thing being, she got the whole bathroom covered and couldn't regain any sort of control of where her body was going. She moved she slipped, she tried again she fell. She learned a lesson that day, when dumping soaps, keep it in one area. And the poop, OMG the poop. Megan @ 4 would not learn anything and potty training was no different. So for the first year of me knowing her I was constantly stepping in poop. And not just poop, but poop covered foam. Cause that's another thing Megan did that was a bit off you might say, she ate foam. You know the foam kids things are made out of (floor puzzles, pool noodles, etc.)So logically that has to come out, and it comes out covered in poop. That's disturbing the first time you step in someones poop and it's got foam in it. Looks like little pieces of cut up steak marinated in something dark. *Sorry if that image offended anyone* But it was something I got used to, had to, would've gone crazy if I hadn't adapted to it. But a relationship with Megan was worth all the work, she's a loving caring child once you're in her inner circle. All this eventful stuff and only the bigging. Thanks for reading and hope to write another post soon.


Thursday, September 27, 2007

Happy Birthday Megan!!

On a cool September morning 11 years ago, I was given a most precious gift my daughter Megan, I had already been blessed with a beautiful daughter Stephanie, so you could say I was doubly blessed that day. For early in my pregnancy, I knew she was going to be something special, just a feeling, I always felt a sense of peace carrying her. At 7:41 am on the morning of September 27th 1996 my life changed, I would not know the full extent of it then but I could sense she was sent here to bless us.

Megan was a wonderful baby! But as we starting nearing the 18 month stage and she was not yet talking we started a series of Dr's appointments that would lead us to the final diagnosis of Autism. Autism is a devastating diagnosis to some but for me it would be a journey would bring change, a new outlook, a deeper sense of understanding, the journey has been a beautiful one! I have learned so much looking at the world through my daughter's eyes.

I am convinced Megan was sent here to change the way that autism is viewed, she has softened my hard heart and the wild beast that once lived inside of me, a barrier no one had been able to break through, all that have come into contact with Megan have been changed. I am told all the time of how she was able to change their views and opinions on autism, she has triumphed over so many hurdles.

Megan didn't speak until she was 5, she didn't point or use signs she just cried until you figured out what was wrong or what she wanted, trying some days but it is from those days that I would truly learn, that there is no mountain my daughter can not climb.

Megan has defied a lot of the stigmas of Autism. she makes eye contact with all, she loves cuddles, backrubs and hugs, she know has a vocabulary of over 10000 words, she has the most empathetic and generous heart I have ever seen. When a classmate is hurt or crying Megan is right beside side them rubbing them crying, sharing their pain every step of the way,when a classmate succeeds she is right there to cheer them on and i mean cheer like a cheerleader........LOL!The beautiful thing is Megan is teaching her classmates about acceptance it is a most beautiful sight, there are other children in our school with autism, but Megan is the only one who has manged to not only be integrated into her class(they all are integrated)but has become the heart of her class, her classmates watch over her there are there for her through every triumph, they too have returned the favor of being cheerleaders!

I feel so blessed to be a part of Megan's life!! i can't wait to see what the next year brings!!

Happy Birthday Megan!!!!!

Love Mom, Dad and Stephanie

Sunday, May 27, 2007

Megan is So Cute

Just wanted share this cute moment with Megan.

I have to tell you all something so cute and kind of funny.......LBMO....already. As most of you our youngest daughter Megan has autism, now Megan is getting really good at reading! So we were at burger king on Friday and Megan and I were sitting at the table waiting for Jason to bring our dinner, when she starts looking at the menu board, so she turns to me and says fish sticks???!! I say yes fish sticks good reading! Megan says fish sticks with a puzzled look on her face, the it dawns on me how strange this probably is to her, she knows what a fish is and she knows what a stick is but a fish stick.....ROTFLMBO!! She must think we are the weirdest people for wanting to eat fish sticks....LOL! So this morning while I was stamping she was coloring beside me and she draws fish sticks, fish that look like sticks.......SO CUTE!! and kind of funny!.....LMBO! Just had to share!

I hope to be posting another chapter in the next few days!

Tuesday, May 8, 2007

The Terrible Years

Over the next couple of posts Jason and myself will be switching off writing, this is the point where he became involved in Megan's life and has many stories to share with. In the next couple of post you will notice a difference these were the worst years, not only because Megan had no services but also because these were her worst years behaviorally. When asked would I do this again I always say yes I have witnessed miracle after miracle being in Megan's has been so very rewarding! However had you asked me during those years I not quite so sure I would have had the same answer..... LOL! From the ages of 3-5 Megan was a holy terror as wild as they come!

During these years Megan had very limited to no speech, and all her tactile issues were at their worst. Megan could not cope with noise, people, smells, lights most sounds, she also had food and potty issues. Megan had also developed some very strange behaviors. Let me give you an example of an odd behavior she would chew all fuzz off of all her teddy bears ears, and buts, she loved to eat paper, foam, string....... ever tried to remove sting from someones behind I'm sure Jason will elaborate more later as this became his area of expertise.

Ever thing Megan did was like a full out assault on our house, she would run from one thing to another dumping shampoo, cereal, toy boxes, shelves full of videos and anything else she could get her hands one. Every cupboard and drawer had a lock on it, all closets and rooms other then her room had locks on the doors, the fridge the stove and even toilet found themselves on lock down , she just loved putting things in the toilet we have lost rings, necklaces, watches, tubes of toothpaste, toys, sock and only God know what else. She has been a full out assault on our plumbing, Jason has become very good at removing the toilet......LMBO!!

I have to tell Megan was a smart kid she had incredible problem solving skills, she was always one step ahead of us rather the preventative measures we played damage control. I am so happy those years are behind us......whew......I am far too old now....LOL! The motto in our house was if you can't strap it to the ceiling you can't have it out! She went through this terrible stage of cracking eggs on everything, Oh my egg is not all that easy to clean off of carpet, wall toy boxes etc. to this day I got into a panic attack if she goes near the eggs!

It got so bad that no one wanted us to come over anymore, they couldn't handle the stress of having her in their house, nice friends..... oh well that's another story, you do really find out who your friends are when you are in some of your darkest moments and mine had all but abandoned me. During this time my mom had also moved quite far away so there was no support for us, no family and no friends. The only escape we had was work, our poor babysitter we would find her in tears, she thought she was doing a horrible job, she was great and we tried to explain that anything Megan did was not personal it was just how she was and she did all those things when we were home too. Her sisters had babysat for me before they went off to school Megan was a baby then and not much trouble so she thought it was her babysitting ability because her sisters hadn't had any trouble.......poor girl I still feel bad all these years later.

So there you have it the next couple of post will be about these years and how we all survived them, boy do we have some whopper stories in our closet!


It is about a couple who decides they are going to Paris. They borrow books from the library, purchase maps from the local bookstore, rent movies,and watch television specials about Paris. They do everything they can possibly do, to get ready to go to Paris. They even seek out friends and family who've been to Paris...and learn everything that they can from those people. They spend months preparing for the big trip. The day finally comes. They have packed for Paris and saved up money for souvenirs from Paris. They get on the plane that is going to Paris. They fly for hours. Everyone on the plane is talking about Paris and how excited they are. As the flight descends, everyone is soooo excited! After all, most of these people have never been to Paris before - and even those who have...are so excited to go back! The plane lands and as the couple is preparing to get off the plane, the flight attendant comes back, points to the couple, and says: "this is where you are getting off. Welcome to Holland". HOLLAND? The couple is distraught. They hadn't planned for Holland.

They didn't know anything about Holland. Nothing that they had read or heard had prepared them in any way to enjoy a vacation in Holland. Their initial reaction was shock...and then it turned into anger. What was supposed to be a beautiful vacation in Paris...would be spent in HOLLAND? What are they going to do now? Well, they get off the plane and start walking around. First they saw the beautiful flowers and met some of the people. The people were very, very friendly. As they started slowly exploring Holland they realized that it, too, is a beautiful place. Not quite what they expected - harder to navigate in some areas; particularly w/the wrong maps - but....beautiful. They begin taking pictures and they begin enjoying their trip. after all, they are in Holland - and even though they hadn't planned it...would they change it? no....they wouldn't.

Obviously this story would parallel with those of us who prepared for a NT!

Monday, April 9, 2007

Where Do We Go From Here?

Where do we go from here isn't that always the big question. Well I wasn't quite sure, I had been told to contact the Infant Development Work, so I called and made an appointment for our first visit. for those of you that maybe unfamiliar an Infant Development Worker is someone who comes to your home and basically assesses the development of your child, and can tell you about all the programs available in your area.

Cora was our worker, an angel in disguise I'm not sure what I would have done without her, she supported not only the child but the parents while you get your feet planted on the ground. She was full of encouragement and ideas. Through Cora we learned a lot about Autism, we learned how ABA therapy was showing promising results although as mentioned before totally unaffordable. There were also some other therapies that were being provided in our community such as speech and music. We were put on a waiting list for speech, we waited for 3 years before moving away, the speech therapist met Megan once and decide that she didn't want to work with Megan, we were told she had no experience with Autism and didn't feel comfortable working with her. I complained to the Dr's they called the speech therapist but to our avail the answer was still no. No other speech therapist would take us on either as we were told we had one in our community and that was who we had to go to.

Megan was now approaching her second birthday and still had little to no speech, so Cora was teaching us how to sign, and use Pecs ( picture cards) I enrolled in an early childhood signing class, however Megan did not like to sign the only one she would use is the sign for more, and she destroyed every pec we gave her. We were persistent but so was she! It seemed as though she thought no matter what I should understand her, who doesn't want that? So for the next three year yes I said years, she would not sign, use pecs, or point she would stand in the kitchen and just cry, I had to figure out what it was that she wanted, these were some of the hardest days I had. It was always hard to determine exactly what she wanted was she tired, hungry,wet, bored in pain? I just went down the list and would eventually figure it out, I do have to tell you during this time I also worked graveyard shift four nights a week, I would get home at 6:30 am and Megan would wake up within minutes of that not to mention Steph would wake up too. So I would stay awake all day, take care of the kids, Dr's, preschool, infant development worker etc. then I would make dinner, bath the kids, and put them to bed. and get about 3.5 hours sleep, their dad didn't think he should have to help, he worked all day so he should be able to spend his evenings and weekends anyway he wanted to.

Cora was a wealth of information she always knew who was speaking where I saw a lot of speaker but one group that I really liked was a group called ANCA, it was a panel of adults with Autism, they were very insightful helped me understand all the sensory issues that surround people with Autism.They explained how lights, sounds, textures, touch and smells could overwhelm them. It was so helpful to understand these things. As Cora and Megan's relationship developed Cora started working with Megan at a little table, trying out some basic ABA exercises the first being look at me. From there they progressed into some other exercises but before we knew it Megan turned three and was no longer able to receive services from the infant development worker, a sad day in our house.

I enrolled Megan is preschool, the one that was run by the group that supported the infant development program, at first it wasn't to bad Megan seemed to enjoy going, then she started to regress........ she would not interact with any of the teachers, or kids, just sit in a corner and cry, we decided to hang in there and see if it was a stage and would improve.... it didn't at the age of three Megan had dropped out of preschool.

It would be another 2 years, a divorce, and a long distance move before Megan received anymore services.

Stay tuned for the next post, What we did during the 2 year wait.

I don't know who the writer of this poem is

Build me a Bridge

I have known that you and I
have never been quite the same.
And I use to look up at the stars at night
and wonder which one was where I came.
Because you seem to be part of another world
and I will never know what it's made of.
Unless you build me a bridge, build me a bridge,
build me a bridge out of love.

I long for the day that you smile at me
just because you realize
that there is a decent and intelligent person
buried deep in my kaleidoscope eyes.
For I have seen the way that people look at me
Though I have done nothing wrong.
Build me a bridge, build me a bridge,
And please don't take too long.

Living on the edge of fear.
Voices echo like thunder in my ear.
See me hiding every day.
I'm just waiting for the fear to lift away.

I want so much to be a part of your world.
I want so much to break through.
And all I need is to have a bridge,
a bridge from me to you.
And I will be together with you forever,
and nothing can keep us apart.
If you build me a bridge, a tiny, little bridge
from my soul, down deep into your heart

Saturday, March 31, 2007

April is Autism Awareness Month!

But most of you probably already know that, in honor of that we have created a slide show to give you a peek into the "Beauty Of Autism" This is our wish for our daughter Megan, and many other children affected with a form Autism.

Go check out Gina k's site she has released her Autism Stamps and $8.00 from every purchase goes to Autism speaks! Here is the link to Gina's site! Gina K

I hope you enjoy our slide show!

Stay tuned for the next chapter in The Beauty Of Autism, Where do we go from here?

Friday, March 23, 2007

The Diagnosis

Shortly after Megan had her first birthday, we started to notice that she wasn't yet making Mama, Dada sounds, and it appeared that she couldn't hear us! We could walk up behind her clap, stomp, make loud noises and she wouldn't turn head. So I took her to the family Dr. and he sent us for a hearing test, and a visit to the nose, ears, and throat specialist. First was our appointment with the specialist, she stomped, clapped, and made loud noises, Megan didn't even flinch! She examined her ears, not an easy feat for a child who won't let strangers touch them! After examining her ears, she determined that everything looked normal, and we should not only have a hearing test, but also an ultrasound of the inner ear. So off the the audiologist we went.

Once we had the ultrasound and hearing test completed the audiologist sat down with us to explain the results. Megan has better then average hearing, she can hear sounds and frequencies that most people can't, a very heightened sense of hearing, is what we were told! What?!! All this time she could hear me and choose not to! Oh my, my daughter didn't care to interact with me! That hit home really hard, what had I done wrong, why didn't she love me, these were some of the first thoughts I had, mind you they didn't last long but, it still hurt no the less. Megan was always very affectionate with me, always wanting back rubs and hugs, thankfully we did have a place where we could meet and just be.

So now we had to figure out why she didn't want to listen or verbally interact with us. Because Megan had always been very loving towards me, made eye contact, and progressed at a normal rate Autism never crossed my mind, until.......... One day my mom was over visiting and thought i should look up the symptoms of Autism, she worked with a man who had Autism, and she thought that Megan shared some of the same traits, he had. So off I went to my bible then "What To Expect in The Toddlers Years" it had a few paragraphs about Autism, pretty vague really. It mentioned things like, resists eye contact, rocking, lining up of items. It didn't really seem to fit for me, Megan looked me in the eye.......just me not anyone else my mom said Megan doesn't rock...... but she did bounce across the floor on her back.....Megan doesn't line things up.....she just reorganizes......no she lines things up my mom said, and she was right.

So I made another appointment with our Dr. to discuss the possibility of Megan having Autism. During our appointment the Dr. stated he didn't really know anything about Autism, and would send us along to the Pediatrician. At this time Megan was about 18 month old. So off to the Pediatrician we went, after reviewing Megan's file and examining her, she thought Megan did indeed have Autism, but did not want to make the diagnosis herself, so she sent us to a Dr. who specialized in Autism.

So off my mom, myself, Megan and her sister Stephanie went to see the specialist. Yep her Dad had no interest in coming along! Although he did take the day off work to play video games.... OK I can admit a little bitterness here! The appointment lasted a half an hour, he watched her play, in a room the had set up, he watched her interact with her sister, he examined her, and then watched her interact with me. He said it was unusual the way she interacted with me, most he had seen wouldn't interact to their parents. BUT......... based on everything he had seen, she had Classic Autism, Moderate..............CRASH the sound of my world coming down all around me, stunned I sat there while he explained, ABA therapy, speech, preschool......and so on. He explained that with ABA therapy they had made great advances in reaching children with Autism, the only problem it wasn't covered by medical, and you had to fly a behaviorist consultant in from California, to train a team to work with her, now we live in Canada! Cost to run this program $60,000 a year! So now there is a program that works but I can't afford it....... I have never felt any smaller as a parent then that moment. Just as we were leaving the office, he said on more thing, and I have carried this through the years, and shared with many parents of newly diagnosed children. He said " GO HOME AND MOURN THE LOSS OF THE CHILD YOU THOUGHT YOU WOULD HAVE, SO YOU CAN ACCEPT THE CHILD YOU DO HAVE" I did accept Megan, but he was right when your child is born you have all these hopes and dreams for them, and a diagnosis like this alters those dreams, so you have to create new ones. I have to tell you I have met a lot of parents over the years who have not accepted the child they did have, holding on to old dreams, never embracing new ones. It is very sad see.

So we left the office and headed back to the car, and there in the underground parking lot it hit me so hard............. I fell to my knees and cried like a baby.....I cried, and cried. My mom embraced me with a hug, and an assurance that everything would be OK, you know the only way a mother can. And that was it we have never looked back, we have embraced every moment along away, the good ones and the bad ones. So there you have it, Megan's journey had begun, and what a beautiful journey it has been to date!

I have to sign off as I am feeling a little overwhelmed, it's been a very long time since I revisited this chapter of the story.

I will leave you with another poem

It's Spelled Wrong!
By Donna Cooper

A mistake has been made.
The word doctors and neurologists
use to diagnose our children is autism,
but it should be AWEtism.
Just think...

Awe at my daughter's progress.
Awe at each accomplishment.
Awe that we've been blessed to be
part of a miracle
Awe to see God's hand at work in my
daughters life.
Awe to meet such wonderful people.
Awe for each little step in the right
Awe for the love I never knew I had.

It's not Autism, it's AWEtism!