As a mother, I will never give up on my child. As a mother of a child who has autism, I will never give up hope.
I look into his eyes and I see all the potential that he has to offer to this beautiful world and I just know that one day the world can see what I see.

Follow my blog as I share my life and my experiences as a person who loves someone with autism.

Friday, April 30, 2010

iBryce

Bryce loves the iPhone & YouTube.

Bryce’s favourite YouTube video is the fireworks show from Livecity Yaletown during the Vancouver 2010 Olympics. Bryce was at the fireworks… and he didn’t like them at all! He kept saying, ‘all done’, ‘all finished’, ‘go home’ the entire time. The problem was the noise and the proximity to the fireworks show.

However, the fireworks on YouTube, he loves them! He can’t get enough of them.

If you watch the video, you can actually hear Bryce talking in the background during the performance.

Now for the exiting part. Bryce loves the iPhone.

He knows how to press the home button to un-hibernate and how to slide the slide the lock. He knows how to flip pages to find the page with the YouTube App. He knows how to access his favourite video from his YouTube favourites! We we’re so amazed. I know most 8 year olds are probably masters of technology, so no big deal, but it’s great to see iBryce doing some normal 8 year old activities.

Daniel

Wednesday, April 28, 2010

An Endless Debate: The Aftermath

“Aftermath: the consequences of a catastrophic event”

Since the airing of The Vaccine War it was discovered that half the story was not told. Jenny McCarthy states in her blog on The Huffington Post:

Jenny McCarthy“When the producers of PBS's Frontline approached me to be interviewed for their new documentary "The Vaccine War," I accepted with a simple condition: doctors and scientists on our side of the vaccine-autism debate needed to have a voice, too.”

Frontline’s response to McCarthy was:

"Frontline will carry out a detailed and even-handed investigation including voices from all sides of the controversy including parents, activists, physicians, scientists, lawyers, politicians and vaccine manufacturers."

Read the full story here.

Like I said in my last blog, I don’t know what causes autism. I do know that it’s treatable. It just really saddens me that PBS’s Frontline, for whatever reason, felt the need to cut out the other side of the story, which is against vaccinations and the connection with autism, especially since it’s still Autism Awareness Month!

With that said, I’m glad this was televised and being talked about as it’s the only thing I’ve seen any media coverage regarding autism this month, aside from Holly Robinson Peete appearing on Celebrity Apprentice.

Thanks for reading,
Tanaya

Tuesday, April 27, 2010

An Endless Debate

Studies shown to prove or disprove something are financially motivated. In many cases the “public” studies are paid for by the companies that benefit directly or suffer directly from the results of those studies. These types of studies are more suspect. The problem is that studies are either expensive or access to proprietary or copyright information isn’t available or plausible for independent research companies with no financial gain or benefit from the studies.

This doesn’t mean the studies results aren’t true. It just means they are more likely to present positive or beneficial results and downplay negative results and reengineer products internally.

Like the controversy with vaccines. A hundreds of billions of dollar industry per year which governments are advocates for, it’s difficult for them to make changes or agree with studies that show evidence that it could be harmful because it’s all politics. They use fear to persuade you based on short run benefits. It is also difficult to prove a link between vaccination’s and negative side effects because vaccine’s are constantly changing and the period of time required to conduct legitimate studies takes too long. You have to track it for dozens of years to find out if there is a related side effect, and even then you have convince other people to agree with you, which is often the hardest thing to do.

9 out of 10 scientists agree that 9 out of 10 scientists disagree.

We may not know for another 10 years what the side effects of the massive Swine Flu epidemic are, but no worries the US Federal government protects your friendly neighbourhood billion dollar drug companies from any future legal compensations.

These thoughts come from after watching The Vaccine War. Everybody has their own opinion, everybody can prove their own opinion. The problem is that both sides have creditable arguments and can provide convincing proof and can often discredit the other for being “conspiracy theorists” or having a lack of scientific evidence. It’s an endless debate.

The Vaccine War

I don’t know what causes autism. I do know that it’s treatable.

Thanks for reading,
Tanaya

Monday, April 26, 2010

Taking a Stand Against Autism

Please read an article we wrote that was featured on Tonic.

Taking a Stand Against Autism

Tonic Taking a Stand Against Autism

Tonic

Tonic. Do Good. Make a Difference. Share the Experience.

Tonic is by definition anything morally, mentally, or physically inspiring.

Tonic is a platform for brands (consumers, celebrities and causes) to educate, interact and engage consumers around positive actions. We started as a destination for good news content, now we want to generate news of its own by bringing together the worlds of Silicon Valley, Madison Avenue, Philanthropy, and Hollywood.

At Tonic, we also see ourselves as a service company — one that strives not only to inspire our readers, but to equip them with the resources to make a difference.

Sunday, April 25, 2010

A good night…

Canucks win.

Bryce had a friend over today while we were watching game 6 Vancouver vs. LA.

Bryce played appropriately and enjoyed playing today with his friend. We had only one small incident, but for the most part they played together. Bryce likes to copy play, but he was fairly interactive as well today.

All in all was a good day for Bryce.

Daniel

Saturday, April 24, 2010

Rediscovering Childhood

You know when you walk by that one room in your house and you look at it, and you dread the day you have to clean it, and it drains all your energy just thinking about that day? Well today I decided to take on the challenge of cleaning Bryce’s playroom. Now, in Bryce’s defense, this room gets a lot more play out of it from other kids when they are over, but it still had to be cleaned. I also have a hard time letting go of some of the toys we have for Bryce, so he does have a lot of toys. He never really played with anything that he had, so I tend to keep them over the years in hopes that one day he’ll get into imaginary play and rediscover his childhood.

While I was putting things away in containers, Bryce came in and started taking toys out of the containers. It was one of those days that you find a toy that you ‘haven’t seen in forever’ and all of the sudden it’s your favourite toy.

This toy was Bryce’s Superman chest piece.

He asked for help putting it on. He said he needed a hat and grabbed his hard hat, which he never played with when he got the construction set as a gift many Christmas’s ago. Lastly he needed a torch (he has been into torches since the Vancouver Winter Olympics) and found a train whistle would be good enough. He then sat down putting penguins into his little toy car and ‘put on seatbelt’. He was finally playing with his toys.

Thanks for reading,
Tanaya

Friday, April 23, 2010

BINGO!

Tonight we went to Family Bingo Night at Bryce’s school. It was our first time going to this much anticipated outside of school hours event, and Daniel’s first time playing Bingo. The school even had the Canucks vs. Los Angeles game 5 Stanley Cup Play Offs projected on a big screen to keep all the boys entertained.

At one point, closer to the end of the event, just in time for draining all the kids energy for bed, all the children started to run around all the tables and running outside. Bryce was enjoying watching all these kids, and we told him he could join the kids if he wanted to. At that very second he got up and began shadowing all the kids, following them and laughing and running with them. You have no idea how beautiful this sight is. To see Bryce engaging in other children on his own and interacting is such a huge breakthrough from his social difficulties.

Oh and if you’re wondering if we won at Bingo, Daniel and I took turns who was doing the Bingo cards and watching Bryce, and during his turn he won! We came home with a Tim Horton’s travel mug set with a tea collection.

Thanks for reading,
Tanaya

Thursday, April 22, 2010

MedicAlert - No Child Without

My sons SEA gave me this brochure the other day that was the MedicAlert - No Child Without school program. I had heard of MedicAlert before, like if you were allergic to something you could wear this piece of jewelry to let first responders know if you were unable to communicate, but I never knew it was more than that. It turns out, that MedicAlert is not just for allergies anymore.

Please note: To my knowledge this service is only available to Canadians, and I am not aware if their are similar programs outside of this country.

Here is what the brochure displays:

Safe guarding your child’s health is MedicAlert’s priority. That is why the Canadian MedicAlert Foundation is partnering with the Lions Clubs of Canada and with the assistance of the Government of Canada to introduce the No Child Without program at no cost to families. With the rise of childhood diabetes, asthma and allergies, it’s estimated that one in five children has a medical condition, allergy or special need that should be communicated to emergency medical personnel in an emergency. The No Child Without program has been created to provide these students (age 4-14th birthday) with the 24-hour protection of the MedicAlert emergency information services.

During the school day a child will interact with many different individuals. It could be at recess, during lunch, in the classroom, after school at a friend’s house or during a sports activity. Parents want to ensure that vital medical information about their child is readily available and can be accurately communicated in an emergency.

Feel confident knowing your child’s MedicAlert identification can alert school staff, friends, coaches and others about your child’s medical condition should an emergency occur.

Some conditions first responders may need to know in an emergency:

    • Anaphylaxis or server allergies to drugs, food or insects
    • Asthma
    • Attention Deficit Hyperactivity Disorder (ADHD)
    • Autism
    • Diabetes
    • Epilepsy
    • Hemophilia
    • Needs Epipen or Twinject
    • Visual or Hearing impairment

April 22nd, 2010I absolutely love this idea, I think that every parent should take part in this. The thing about this is it’s a program that is run through your child school. You may not even know about it, like I didn’t. When you sign up for this you have to enter a barcode and a pin number (provided on the brochure) as well as say what school district and school your child is from. I am not sure if you can get this MedicAlert jewelry free without the barcode and pin number, and I would totally snag more brochures from my sons school, but like I mentioned already, you would have to provide your child’s school information too, so it wouldn’t be too helpful. Regardless of costs, this to me is a must-have for any child.

To enroll, call toll-free 1-877-282-5378 or visit www.nochildwithout.ca and see if your school is participating.

If your school is not participating, you need to get your school involved! Here is some more information if you are a parent, principal, or school board.

Thanks for reading,
Tanaya

Wednesday, April 21, 2010

My Not-Typical, Typical-Like Child

Somebody asked me if I ever get tired of talking about autism. I asked them if they ever get tired of breathing.

Bryce may have autism, but autism doesn’t have Bryce. Today I thought I’d share with you some ‘not-typical child, typical child-like’ moments. He really is just like every other kid. He loves playing in activity centers:

He loves playing in the pool, er, I mean splashing daddy with water, while playing in the pool.

He likes animals, well… most animals. He’s not a huge fan of dogs or birds.

His mommy makes him pose with random things, just like every other child’s mommy does.

He has cut his own hair, twice. We heard laughing and giggling and found him playing with his hair that was on the floor.

Bryce likes Batman and Spiderman.

He loves amusement park rides.

He is forced to wear costumes that mommy picks out.

He really is just like every other kid.

Thanks for reading,
Tanaya

Monday, April 19, 2010

Everybody Poops!

If I had to see another diaper again, I was going to scream. Toilet training had to of been our hardest challenge with Bryce. Children are so confused when it comes to this. All a child’s early life they are supposed to pee and poop in a diaper, and then out of no where they’re supposed to forget everything they have learned and use a toilet. It must be so frustrating.

Bryce was almost 6 and still not toilet trained. We had done everything you could possibly imagine and then some. We even went to a seminar hosted by ACT BC (Autism Community Training) called Toilet Training for Everyone: It’s Never Too Late! (available on a their website to purchase as a webcast). In the days event we learned a ton of techniques and tricks to apply in our daily life to help us achieve our goal.

Their are six phases of toilet training, and I’m going to talk about the urination phases, but I highly recommend anybody to invest the time and money and watch the webcast. It is great for people of all ages, stages, phases, autism or not.

Two words: Trip Training.

It involves some math and a lot of patience. First we had to figure out how often to take Bryce to the toilet. For about a week we calculated every time he had a wet diaper/pull ups and then calculate the average length of time that he could stay dry. From that we could determine roughly how often he had to use the washroom and manually take him their every X amount of time. With the support of Bryce’s daycare and school we determined he had to be taken to the washroom every hour and a half. This was a great opportunity to introduce him to saying ‘bathroom’ or ‘pee pee time’ so he could associate going to the washroom with the keywords we used. Based on how often he should have to use the washroom we’d have him sit on the toilet for 5-10 minutes and if he didn’t go, we’d take him off for 5 minutes and continue that until he went.

When he did pee we celebrated like it was the best thing on Earth (which it was) and this embedded in his head as ‘Oh when I go pee, good things happen’. Their was the occausional time where Bryce would be wet in-between times, and we were taught from the seminar to not talk, scold, explain, lecture, to not spend a long time on cleaning him up and to just make a notice of him being wet because he had an accident. This is mostly to not destroy his confidence. Nobody wants to think they failed.

Eventually we decided that Bryce had mastered trip training and moved onto self-initiation where he could pee in the toilet without somebody taking him. This is when you discover the ‘pee-pee dance’ or your child grabbing themselves. The biggest lesson we learned was never to ask “Do you have to go to the bathroom/pee/toilet?” instead acknowledge their behaviour and say something like “Oh, I see you need to go bathroom/pee/toilet!” and just go.

It wasn’t until Bryce was almost 7 years old where he said ‘pee’, went to the bathroom, went pee, and came out. He skipped flushing the toilet and washing his hands, but this was a huge breakthrough. It was one of the most rewarding experiences I ever had. That night we went and bought his first pair of underwear as a reward and ever since that day he never wore a diaper again.

Experts say setting a potty schedule helps teach your child to use the toilet. But how do you keep to that schedule - and minimize conflict between yourself and a stubborn child? Answer: Pull-Ups iGo Potty app.

Here’s a couple of suggestions that are great for any children (mostly boys) for toilet training:

  • Drop some Cheerios in the toilet and have your child try to sink them when they go to the washroom
  • Put an aluminum pie pan into the toilet and when your child goes to the washroom, it makes a fun sound
  • Add one of those 2000 Flushes bar into the toilet tank which dyes the toilet water blue, and when your child pees in it, it changes it to green
  • Monkey-see, monkey-do. It is not inappropriate for mom or dad to show their child how to use the bathroom, in fact a lot of children will feel more comfortable with the idea if ‘mommy does it’ or ‘daddy does it’
  • Use visual aids to help with the process of using the toilet. Feel free to click on the graphic below to save or print ‘Using the Toilet’ for your own use. (JPG file)

Using the Toilet

Have any tips or tricks you want to share? Did you use any of the suggestions and have success? Leave us a comment!

Thanks for reading,
Tanaya

Sunday, April 18, 2010

Bryce Sings?

Even though Bryce is challenged everyday of his life with communication, understanding and development, he enjoys music and singing! You will always find Bryce singing when his favourite songs come on. He may not always have the right words, and he may not always keep in tune, but that doesn’t stop him from enjoying the music and singing his songs.

I think its important that he hears that words alone don’t make communication, that tone and pitch, etc. can change the meaning of words and the response from others to those words. Honestly, he struggles with his own speaking volume and tone and development of language, but you can see it on his face when he sings that he’s enjoying what ability he does have to communicate.

I thought I would share that with you all. Some of Bryce’s favourite songs that I’ve heard him sing are:

  • Songs from the musical Rent
  • A couple of songs from Black Eyed Peas
  • Boys, Boys, Boys by Lady Gaga
  • In My Head by Jason Derulo
  • Sweet Caroline by Neil Diamond

Just to name a few.

Daniel

Saturday, April 17, 2010

Yoga for Autism! (sneak peak)

My sister-in-law wanted to help Bryce. Partnering up with The Yoga Studio, she has offered her services to help raise awareness and funding for the Bubbles Make Him Smile Therapy Fund.

She has 9 years of teaching, facilitating and practicing yoga and has developed a reputation as a hard working and caring healer. We are very excited about this event!

SAVE THE DATE!

DATE: Sunday, June 20th, 2010
TIME: 10:00 am – 11:30 am
WHERE: The Yoga Studio in Squamish, British Columbia, Canada
REGISTRATION: At the door by donation

All proceeds will go to the Bubbles Make Him Smile Therapy Fund!

If you have any questions, please don’t hesitate to contact us!

Thanks for reading,
Tanaya

Friday, April 16, 2010

The Naughty Step

I am a huge fan of The Super Nanny and if it wasn’t for her creative ways of handling temper tantrums and time outs, I have no idea what we would of done. Advice for everything you could think of and even the things you didn’t think of. I absolutely love her! One of my favourite little trademarks of hers is The Naughty Step. It’s a place that the child goes when they have been misbehaving or being unreasonable or frustrating, needs a time out, or whatever you consider to be ‘naughty’.

Now I know you’re thinking, how could my innocent, little, baby Bee ever know what a naughty step is… trust me, he’s not always cute and innocent. He throws a tantrum just like any other kid, especially if he doesn’t get his way. He screams, he kicks, he throws things, he pours things, he stomps, he does it all. He’s very aware of his feelings when it comes to emotions like excitement and anger.

We found that sometimes it’s hard to punish Bryce. You tend to think to yourself ‘Oh he’s just doing that cause he doesn’t understand’ but I really hate making excuses for things that he does. Having autism doesn’t mean it’s a get out of jail free card, but at the same time, you have to handle everything a lot more delicately. You can’t just say, ‘Go to your room cause you did this’ he’ll go to his room, but it doesn’t mean he knows why. Daniel and I tried that approach, but when it came to bedtime, and we sent him to his bedroom, he’d confuse that as punishment and would get upset and frustrated. He associated his bedroom as the place he goes when he is in trouble, so we had to find a different solution.

The Naughty Step Technique:

  • Bryce gets 1 warning when he misbehaves, and he is informed that the next time he does it he will sit on the step. He usually replies ‘No no no no’ in a whimpering voice, knowing what the step represents.
  • After the warning, if he misbehaves or needs a time out, we take him to the naughty step.
  • We designated the bottom stair on our stairs as the place to go when Bryce needs a time out, or is being punished. It is a very quiet place in the house facing a wall and a bathroom, so it’s not the most pleasant place to be.
  • We come down to his level and in a firm voice explain why he is there. We don’t go into huge details on the reason he is sitting on the stair, we make it very brief and as little interaction as possible.
  • We tell him how long he has to sit there. The Super Nanny recommends 1 minute per year (so 8 years old would be 8 minutes) however, we have always done 5 minutes.
  • If he leaves the naughty step at any point before the time is up, we bring him back to the step again, being very calm and not interactive. If he keeps getting up, we just sit him back down, and reset the timer until he’s sat there the whole time.
  • When the timer is up we go to him, get to his level, and again in a firm voice remind him why he was sitting on the naughty step and we ask him to apologize for what he did.
  • Bryce usually says ‘Sorry mommy’ or ‘Sorry daddy’ and we accept that. We then say ‘Thank you’ acknowledging his apology and then we hug so he knows we’re not evil parents and we do this because we love him. :)

A couple of key things that are important to know:

  • A firm voice is very important. If you’re laughing, or if your child hears you in your normal voice, they may not associate this as something different than every other day you talk. It needs to stay consistently firm.
  • If you do not have a stair to use as a naughty step, you can use any part of the house. Personally, I’d say stay away from corners. Designate a little area in your house strictly for the naughty step.

What about when I’m not at home, like at school or in public areas?

Hopefully you have a great supportive team at school, and you can discuss with the people who work with your child to implement the same techniques at school as you do at home. I’d recommend a quiet place where their would be limited distractions, not in a closet, or behind a closed door, but somewhere in the school where your child can be supervised like an empty classroom.

Everywhere you go in the public is now your giant naughty step. At that park you go to after school, or the grocery store you do your grocery shopping, you can designate a spot in each location and if your child needs to go there, you can bring them to the spot you thought of and they can have their time out there.

Now I am no Super Nanny, but have implemented this technique for a couple months and I find it has really decreased the amount of time out’s Bryce needs because he is not a fan of the stair at all.

Let me know if you use this technique, or tell me what techniques you use.

Thanks for reading,
Tanaya

Thursday, April 15, 2010

Wednesday, April 14, 2010

Bryce’s Portfolio

Today I got to take home some of the art Bryce has been making throughout the school year and wanted to share.

Thanks for reading,
Tanaya

Tuesday, April 13, 2010

This ain’t no fairytale!

Holly Robinson Peete and her husband, Rodney, founders of HollyRod Foundation, are inspirations to all parents with a child on the spectrum. They are loved and respected by the autism community, and use their celebrity status to spread awareness. They even wrote a couple books to tell their story, My Brother Charlie and Not My Boy!: A Father, A Son, and One Family's Journey with Autism.

I recently read a blog entry by Holly Robinson Peete on The Huffington Post called ‘Shifting Focus: 8 Facts About Autism the Media Is Not Covering.’ You ever notice how the media has a tendency to soften up the story like a fairytale and leave out the behind-the-scenes reality about ... everything?

Two of the facts she mentions are close to my heart and I wanted to talk about them in today's blog.

Fact: Parental guilt.

For the longest time, I always felt guilty, that maybe it was my fault. maybe I gave him autism. Did I do something wrong? Maybe if I did something differently during my pregnancy, or maybe if I didn’t get him vaccinated, or maybe I had ‘the autism gene’. All these speculations and conspiracies surrounding autism today, have run through my head over and over again. If we had more money, maybe we could of provided more early intervention, and maybe this and maybe that. All these maybe’s and what if’s running around our lives.

I can’t fix this by myself. I know that. This is bigger than me. I am his mother, and I can’t make it go away. I am great with ‘boo-boo’s and ‘owie’s, anything a band-aid can handle, but this, I couldn’t kiss away. I can’t even tell you how many times I have sat their looking at Bryce wishing away his autism. How many tears I cried just thinking, if he was just autism-free for one day, what it would be like for him. What would he say? What would he do?

Fact: Autism can be tough on a marriage.

I remember reading somewhere that 80%-90% of marriages end because autism can put a toll on a relationship. That’s a scary thought! I couldn’t imagine in a million years the amount of stress, conflict, financially, emotionally, and physically draining a relationship had to be in to end in a divorce over a child, let alone a child with autism.

That was until I lived it.

Daniel and I aren’t the perfect couple, far from it, but we’re perfect for each other, and try to be the perfect parents for Bryce. I can’t even begin to tell you how different we are when it comes to raising Bryce. Not only because Bryce has autism, but because we are his parents and we are both strong and opinionated individuals coming together with the soul purpose and goal of raising a child.

Of course we’ve had arguments and disagreements about everything from when Bryce should go to bed, and if he’s allowed to have dessert if he hasn’t finished dinner. Somehow, we seem to meet in the middle, and our different ways end up working together. I am just so fortunate to have him by my side with me on this journey. Thank you, Daniel.

Thanks for reading,
Tanaya

Monday, April 12, 2010

Birthday Blues

Bryce’s birthday is the day after Canada Day (July 2nd) and we have learned from past experiences that it’s near impossible to actually celebrate his birthday on that day because people tend to be busy with events. Summer also starts in the end of June, and most people start vacationing and aren’t around for Bryce’s birthday. As a result we usually planned Bryce’s birthday a week or two before his actual birthday so we can have an attendance.

Bryce didn’t have birthday parties (outside of close friends and family) until he was in school full time. I remember for Bryce’s 7th birthday I invited all his classmates, his group daycare classmates, and friends outside of school. To get the group rate for the location we were having it at, we needed at least 10 children to show up, so I figured the more children we invited the better. A total of 60 children were invited. Since it was Bryce’s first real birthday party, we were willing to pay the costs. This was really important to us, for Bryce to have this experience, he deserved it.

I sent out all the invitations to have his birthday 2 weeks before summer break started, almost the same amount of time before his actual birthday. On the last day of RSVP’ing, the day before his birthday party, we had a total of 8 people confirmed to attend. A couple of parents called to say they weren’t attending, and exactly 49 people never RSVP’d at all.

Initially this didn’t bother me. I didn’t participate in any PTA meetings or invited children from his school on play-dates. All social interaction between my child and other peoples children was completely during school hours. Some people may even consider us to be strangers for all I know. There are a couple of parents that I say hi to everyday, and our children have been in the same class every single year. I know that their child knows my child, and I hoped that would of counted for something. It ended up bothering me later on. I can’t exactly explain why it bothered me. I guess it had something to do with being Bryce’s mother, combined with growing up with these people. They may have not been in my ‘circle of friends’ outside of the school, but I still considered them part of my life.

Regardless of the lack of attendance at Bryce’s birthday party, we all had a blast. However, since that year I’ve never hosted a birthday party inviting his classmates. It just hurt me too much. We would do our own little thing with friends and family on his actual birthday.

Would you be surprised if I told you that my worst fear of Bryce entering the school system came true? That he has only been invited to one birthday party, out of the 5 years we’ve been at this school? Growing up with at least three quarters of these children. That hurts more than having a lack of attendance at his birthday party. Bryce gets high-fives and hugs almost everyday from his classmates. He’s always been so loved and cared for by his classmates. In fact, in every class he’s ever been in, he’s always had a person that’s helped him throughout that year. Sort of like a big brother or big sister who helps put his jacket on, or read a book, and we never even got an invite to those peoples birthday. I can’t imagine that any of his classmates go to make their birthday invitations and intentionally skip Bryce’s name.

Is it because parents are afraid of things that they don’t understand? Or is Bryce too much of a disturbance and they feel he will ruin a party?

Thanks for reading,
Tanaya

Sunday, April 11, 2010

No is an Amazing Word

Bryce continues to struggle on a daily basis with verbal communication skills. Throughout his life he’s had constant speech language therapy, and it continues to be a primary goal at home and at school to work on everyday.

Bryce’s tendency for a while now has been his disposition to parrot back words or short phrases. This was a significant improvement in his communication because for the prior year or so he was only able to repeat a single word. Previous to that he was limited to non-verbal sign language, body language, and temperament.

With that being said, Bryce has recently developed the skill to answer questions appropriately with a no response. When we ask him, do you want some more Kraft dinner?, his response would be more Kraft dinner. Thinking he wanted more, we would go to give him more and he would push it away, or in some cases say all finished. He clearly didn’t understand the concept of a question. If we were going out for dinner to his favourite places, we would ask him, do you want to go to IHOP or Red Robin? He would always answer back, Red Robin. If we would ask him, do you want to go to Red Robin or IHOP?, he would always answer back, IHOP. He would just repeat the last thing we said. It can be frustrating as a parent.

As I said above, as is the title of this blog, that Bryce has developed the skill to answer questions with a no response. It shocked us, and we are so excited. I’ll be honest in saying it can be annoying as a parent, like when we’re not really asking a question. For example saying time for bed, and he responds no, but inside we are so thankful that he has developed this far. Of course that doesn’t mean that he gets away with it :). I love that I can communicate with my child by asking him if he would like to watch a movie, and he has the ability to say no. For those parents that have raised typical developing children they likely won’t understand the feeling, and for those parents with children that have still not been able to break through and make the connection, our hearts go out to you.

We have seen other families success with the Hyperbaric Oxygen Therapy and it kills us inside that our child goes without a treatment that may help unlock his ability to express himself to the world. I am fortunate enough to have the opportunity currently to work 12 hour days so that we can continue to financially survive and provide some treatment for Bryce, and we hope everyday that my wife who has been looking for work since September will be presented with an opportunity.

That is why we need your help, we realize it is asking all lot, but as a parents, seeing the results and the potential to improve the quality of life for a 8 year old child, our child, through HBOT propels us in our cause.

We are always hopeful that medical researchers spending time researching the causes of autism will have a break-through in Bryce’s lifetime, however, being able to provide treatment that has potential to significantly change the life of our child is an amazing feeling with your help.

Daniel

Saturday, April 10, 2010

A Late Easter

Since I was sick last week we didn’t do anything for Easter, so today we decided to have eggs to make up for it. Traditionally, we would have Easter breakfast at Daniels parents house with some close friends and family, but Daniel’s mom has been sick for a couple of months in the hospital and it was cancelled this year. With that said, Daniel and I never made hard-boiled eggs before, and it was such a part of our lives to eat those on Easter. With the help of Google we found the directions, pulled out the crayons, and dyed some eggs for dinner.

Bryce’s favourite part of our Easter tradition is smashing his egg against another persons having a contest to see who was the ‘winner’. Between the three of us, Bryce was the ultimate champion!

Thanks for reading,
Tanaya

Friday, April 9, 2010

Throughout the School Years

Going through all Bryce’s reports and assessments for Bryce’s Story series, I came across a bunch of school pictures and thought I’d share.

I can’t believe he’s almost 9 now, where has all the time gone?

Unfortunately I didn’t get pictures this year cause he was sick during the photo times.

Thanks for reading,
Tanaya

Thursday, April 8, 2010

Bryce’s Story (part three)

Entering the school system was our first time going into the community outside our little autism bubble. Everyone previously in our life were familiar with autism so we never had to explain it to anybody really. At first we didn’t know if we would be accepted by anybody. My biggest fears were Bryce never being invited to birthday parties, asked to have a play-date, or being teased all the time.

We enrolled Bryce into a parent participation pre-school, which I thought was a great place to start to help Bryce build some social skills with children his age. It was also great that I could take part in his learning curriculum and see how he would be in a school setting. This was also going to be the first time he would be somewhere without me.

We started to utilize all the school programs that were available for us since our free services were dropped. We were fortunate enough to be provided with a one-on-one support worker who would help Bryce throughout his time in pre-school. This meant that Bryce had a personal supervisor while he was at school that helped him transition throughout the day and kept him out of harms way. This was funded by the school district, and to my understanding, is allocated amoungst other children in the community with disabilities or special needs.

Prior to Bryce starting elementary school we had a meeting with the principal for several things.

We had to sign documents saying that we knew Bryce had a disability and would never be eligible for a British Columbia Certificate of Graduation or "Dogwood Diploma” and come high school graduation would get a certification of completion instead. That was the hardest thing I ever had to do.

We were informed about Individual Education Plans. Students with special needs who are receiving ongoing special education service require an IEP. This plan is a concise and usable document which summarizes the student's educational program. The IEP should be implemented and reviewed/updated at least annually. Its development should be seen as a dynamic, ongoing process:

  • are written records of planning prepared with input from students, parents/guardians, school personnel and other service providers, i.e., preschool staff.
  • describe students' current learning, strengths, styles and needs, and identify appropriate goals.
  • help in determining the degree of intervention needed.
  • describe individual team members' responsibilities.
  • provide coherent plans for student learning and service needs.
  • should include planning for students' transitions.
  • Assist in determining criteria for evaluation.
  • help in determining how well students are meeting their goals, and form the basis of reporting students' progress.

In reality it’s just a piece of paper that gets filled in, revised once or twice a year through a meeting, and sits in a filing cabinet till it’s next revision. I know that the school means well behind it, and it’s probably great to have a record of it, but in the end it’s not very structured and doesn’t lead us anywhere further than we were before. However, I really enjoy the IEP meetings because we meet with everybody involved within the school system and I feel it’s important to have those meetings with the people who are helping you raise your child.

During the meeting we were also informed that we would have a SEA (Special Education Assistant) who give special attention to students with physical, learning, or emotional needs by:

  • implementing individualized or group instruction in communication skills, life skills, behaviour management techniques and adaptive physical education
  • assisting in the modification of curriculum, assignments and tests to accommodate students with special needs
  • attending to and providing personal assistance to students in toileting, positioning, mobility, feeding, grooming and dressing
  • transferring and assisting students to and from wheelchairs, desks, special equipment and work areas
  • supporting all students in classroom environments

They say that everything you need to learn you learn in kindergarten, so I was excited to hear that we would have somebody with these qualifications to assist Bryce.

When school started we had several temporary SEAs. By temporary I mean twelve. Every single one of them informed me that they would be Bryce’s temporary SEA until his full-time SEA was hired. Apparently working as a temp SEA makes more money and is more convenient in hourly work compared to 2 hours a day, 10 hours a week full-time work. At least that’s what a couple of our temps told us. I think the school year was about half way through when I actually took some charge and demanded to have somebody full-time working with Bryce. Fortunately a really sweet lady who worked in Bryce’s daycare was going to school for this and agreed to be his worker for the end of the school year. I can’t emphasize enough how important structure and routines are for children with autism. I honestly don’t know how Bryce coped so well.

So come grade one, being full-time in school, everybody said that the hours were more ‘appealing’ to SEAs. I was not about to go through a repeat of the year before, so I pleaded for the lady who worked with Bryce in kindergarten. Unfortunately SEAs are hired based on seniority and somebody with more years under their belt was hired. It’s really an odd system and I think a parents say, as well as the child's say should outweigh any decision. It’s not like I didn’t like our new worker, she was really nice too, I just liked the idea of structure and familiar faces, and not having to sit down and explain everything about Bryce all over to a new face.

Grade two came and Bryce’s principal informed us that the hours allocated between the school district had dropped and we would be losing 5 hours a week of paid SEA service. I kept hoping that we’d find somebody who wanted those hours and we were very lucky to come in contact with our next SEA. This lady is incredible. If I wasn’t Bryce’s mom, I’d think she was Bryce’s mom, because she just knew Bryce so well. You know those rare types of people that don’t do the job for the money but do the job because they love their job? She’s like that type of person. We noticed a huge improvement on so many levels with Bryce in grade two. She had taught Bryce so many things. Their is not enough Tim Horton’s gift cards to repay her and not enough Hallmark cards to thank her and tell her how much we appreciated her.

You can imagine my disappointment when we were originally informed that she would not be working with Bryce this year in grade three. Again, the seniority rule came into play, and her application for the position was bumped down. However, plans changed when the SEA we were supposed to have went on maternity leave after she got the job (don’t ask) and we got to have our old SEA back!

So it turns out the school system wasn’t as bad as I thought. We've been with this same school since day one. I could go on for hours about all the things Bryce's school does for us. We are so fortunate to be with a school that not only understands us, but accepts us.