Bryce was born July 2nd, 2001 at 7:06am. He weighed 7 pounds, 7 ounces and was 19.5 inches long. He was a very happy baby, always smiling and cooing and slept through the nights. People would always comment how happy and relaxed he was compared to other babies.

This is Bryce’s story.

When Bryce was 12 months old, it was brought to our attention from a pediatric physiotherapist that regularly visited the daycare Bryce attended, that Bryce had a tendency of looking at things through his peripheral vision instead of making direct eye-contact. It was her recommendation to speak to our pediatrician as she said it wasn’t ‘typical’. Bryce had all his vaccinations, recommended by his pediatrician, and he met his baby milestones like crawling and baby talking. Anything we thought he may be behind on learning was disregarded by people telling us that all children are different and learn at different times. We didn't know any better as young, first time parents.

Bryce had little development in communication and social behaviour but improved in gross motor skills yet hadn't started walking. Bryce was 18 months old and it wasn’t until I was fed up with carrying him and pushing strollers everywhere that I physically put him against a door and made him walk to me repeatedly until he figured out that he had legs, and that’s what they were used for. It was at this time that we discovered that Bryce had to be pushed and taught skills that ‘typical’ developing children pick up naturally by observing parents and peers. From that day on Bryce would walk everywhere.

In February 2003, a subsequent referral to another pediatrician indicated that Bryce had a “global developmental delay and some abnormal mannerisms” that needed further investigation. She was concerned about Bryce’s language development, social development and thought he had possible features of autism. She made a referral in June 2003, when Bryce was almost 2 years old, for a full developmental assessment at Sunny Hill Health Centre for Children because of the pediatric physiotherapist that expressed concerns about autistic features she observed in Bryce at daycare. The pediatric physiotherapist reported: frequent sideways cocking of the head while looking at lights; lack of eye contact; no words; inability to follow commands; delayed gross motor milestones; fascination with wheels, tags, and fans; and self-feeding with fingers only (no utensils).

Bryce was almost 3 years old when we finally got to see Sunny Hill Health Centre for Children for diagnostic testing. The majority of the diagnostic tests were play based due to his young age and lack of verbal or signing communication skills. A month later, we sat down in a little room with a doctor, and were informed of Bryce’s results.

On June 9th, 2004, Bryce was diagnosed with Autism Spectrum Disorder by the Pacific Autism Resource Centre at Sunny Hill Health Centre for Children. The summary said that he displayed several features consistent with autism spectrum disorder including, delayed language, limited eye contact, self-stimulating behaviour, repetitive play, and delayed pretend play skills. His receptive and expressive language skills were also severely delayed and based on his age, his symbolic abilities, such as pretend play, were also delayed.

I remember crying and feeling so sad and not fully understanding what it is that they were telling us. We didn’t know anything about autism. I remember thinking to myself about the future and what was going to happen. We were told not to look too far ahead and to take each day by day.

Please consider making a donation as we walk to raise money for research and awareness at the 6th Annual Vancouver Walk Now for Autism Speaks Canada, Sunday, September 29th, 2013. It took 2 years for Bryce to be diagnosed. Those two years could have been spent on early intervention. It’s with your donation that families won’t have to wait as long. Please help. Thank you for your support and contribution!

Follow our blogs as we share our lives with you and our experiences as people who love someone with autism.
https://www.bubblesmakehimsmile.com

Thanks for reading,
Tanaya, Daniel, and Bryce

Donate here: http://events.autismspeaks.ca/index.cfm?fuseaction=donorDrive.participant&participantID=16164&referrer=cmr:99E426AA2124

By the end of grade three, Daniel and I noticed a huge improvement on Bryce’s behaviour and his communication. I honestly and strongly believe that it had everything to do with the people that he worked with on a daily basis at his school, including his classmates.

When Bryce’s 9th birthday was nearing, a couple of his classmates asked if they were invited to Bryce’s birthday party. I didn’t even think about it since our first attempt of inviting 60 friends from school resulted in 6 classmates attending. But after talking with Daniel, we felt that this year was different. We invited Bryce’s whole class to his birthday party and for the first time since kindergarten, Bryce had a birthday party with people outside of close friends and family. A real birthday party. He was accepted.

Despite that, my biggest fears did come true. Bryce has never been invited to any of his classmates birthday parties, or have a play-date, and sometimes kids make fun of him. But it doesn’t get us down.

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.

Our lives changed forever after that day. Everyday was going to be a new learning experience. Even something as simple as walking up the stairs was a task for Bryce. He couldn’t grasp the concept of walking one foot after the other up the stairs and would step up with both feet on one stair. Daniel had to physically grab Bryce’s ankles and motion his feet where they had to go, over and over again, for Bryce to realize that he could walk up the stairs one foot after the other.

The first thing we did was literally Google’d ‘What is autism?’ so that we could understand it a bit more. I’ll tell you right now though that their is no amount of knowledge in the world that can get you ready for being a parent of a child with autism. You literally have to learn each day by day because everyday is different.

So after educating ourselves, we learned that the British Columbia Provincial Government had an autism funding program to financially support families with the costs of early intervention treatment. Initially the $20,000 a year, paid out monthly, seemed impressive, but we soon found out the true costs of an early intervention treatment program.

The government program required us to independently interview and hire a Behavioural Consultant to develop an intervention plan. Then we have to hire a Behavioural Interventionist, who is trained by the Behavioural Consultant, to implement the plan. At the time, there was no formal training or certification to become a Behavioural Consultant so we relied on a reference list from the government website and a reference list from ACT BC’s website. More than half of the Behavioural Consultants we contacted quoted us for more than the $1,667 provided per month by the government to develop, manage the Behavioural Interventionists and revise the plan as Bryce progressed. That spent our entire funding without a single hour of treatment in a month!

Bryce was still in the Infant Development Program provided by the city, and had a Supported Childcare Consultant provided by the city, and we were recommended a Behavioural Consultant that had worked with other families in those programs. We found one that would cost us a little over half the funding to meet the program requirements to receive the autism funding. The other half of the autism funding we spent on a daily Behaviour Interventionist, split between two of the commonly recognized Early Intervention treatments for autism. First we went with an ABA program that could teach Bryce the fundamental aspects, and mechanics of the day to day skills he would need. These were activities like colors, numbers, letters, shapes, identifying food and dangers, etc. The other treatment, which we discovered and researched through seminars provided by ACTBC, was DIR/Floortime. The interventionists instead worked on the social and interactive dynamics in a structured approach. Instead of learning repetitive skills he learned how to participate in activities that involved communication, sharing, and appropriate social behaviours.

Daniel’s work group plan insurance covered a small portion of costs, and allowed us to have both a Speech and Language Pathologist funded by the city, and a Speech and Language Pathologist funded by us at $100 per hour plus travel once a week. We also had an Occupational Therapist provided to us, and we enrolled Bryce in a pre-school program in an attempt to interact with other ‘typical’ developing children. We tried a RDI style program, however, as this was an emerging style of treatment we didn’t participate for more than a couple months in the program. The speech language therapy allowed Bryce to develop non-verbal communication skills through the use of sign language and PECs. As Bryce’s parents we were pretty good at knowing exactly what he wanted, and it took skill and discipline as his parents to wait until he asked and then to derail him throughout the process to allow him to ask for help. Bryce’s DIR/Floortime Interventionist and Occupational Therapist helped him with self-care skills like toileting, dressing, feeding, sleeping routine, and play skills.

Here’s a little breakdown of the costs we incurred for behavioural and communication skills only.

$800 a month for a Behavioural Consultant
$700 a month (roughly) for Behavioural Interventionist
$550 a month (estimated) for Speech and Language Pathologist

That total is $2,050 a month. $1,600 covered by the government

When we moved from one city to another city (literally 3 blocks away), we were forced to transfer all of Bryce’s previous city funded programs to the new city’s programs. Sadly for us the city we moved to provided much less and we lost most of Bryce’s support team and had to start all over again. We went from Speech and Language Pathologist once or twice a week to once a month for three months with a three month block break in-between. It literally felt like we were going backwards.

They say that early intervention is key, which is completely true. What they forget to mention (based on where we live) is that when your child reaches school-age, all those free services provided by the city are gone, and your $20,000 a year drops down to $6,000 a year and eventually dissipates when your child is 18 years old. Why, you ask? Because the government expects your public school system to take over the future developments of your child. With that said, we were really fortunate to have this community team available to us. Some disabilities do not have any funding or city support at all, we just wish it could of lasted longer.

Bryce was born July 2nd, 2001 at 7:06am. He weighed 7 pounds, 7 ounces and was 19.5 inches long. He was a very happy baby, always smiling and cooing and slept through the nights. People would always comment how happy and relaxed he was compared to other babies.

This is Bryce’s story.

When Bryce was 12 months old, it was brought to our attention, from a pediatric physiotherapist that regularly visited the daycare Bryce attended, that Bryce had a tendency of looking at things through his peripheral vision instead of making direct eye-contact. It was her recommendation to speak to our pediatrician as she said it wasn’t typical. Bryce had all his vaccinations, recommended by his pediatrician, and he met his baby milestones like crawling and baby talking. Anything we thought he may be behind on learning was disregarded by people telling us that all children are different and learn at different times. We didn’t know any better as young, first time parents.

After meeting with our pediatrician, he had expressed some concerns about mild developmental delay primarily involving gross motor and personal/social skills. He felt this was probably associated with mild hypotonia (low muscle tone), and placed Bryce at the eight to nine month-old level. As a follow up to some of these concerns, our pediatrician wanted Bryce to be screened for metabolic disorders, chromosomal abnormalities, hypothyroidism, and seizures. All the tests came back normal.

Bryce had little development in communication and social behaviour but improved in gross motor skills yet hadn’t started walking. Bryce was 18 months old and it wasn’t until I was fed up with carrying him and pushing strollers everywhere that I physically put him against a door and made him walk to me repeatedly until he figured out that he had legs, and that’s what they were used for. It was at this time that we discovered that Bryce had to be pushed and taught skills that 'typical' developing children pick up naturally by observing parents and peers. From that day on Bryce would walk everywhere.

In February 2003, a subsequent referral to another pediatrician indicated that Bryce had a “global developmental delay and some abnormal mannerisms” that needed further investigation. She was concerned about Bryce’s language development, social development and thought he had possible features of autism. She ordered similar lab work to the previous pediatrician, put in a referral to have Bryce’s hearing checked, and began the process for having him enrolled in the Infant Development Program. The lab work produced unremarkable results and his hearing was deemed normal.

She made a referral in June 2003, when Bryce was almost 2 years old, for a full developmental assessment at Sunny Hill Health Centre for Children because of the pediatric physiotherapist that expressed concerns about autistic features she observed in Bryce at daycare. The pediatric physiotherapist reported: frequent sideways cocking of the head while looking at lights; lack of eye contact; no words; inability to follow commands; delayed gross motor milestones; fascination with wheels, tags, and fans; and self-feeding with fingers only (no utensils).

Bryce was almost 3 years old when we finally got to see Sunny Hill Health Centre for Children for diagnostic testing. These tests included simple tasks like putting a Cheerio into a small glass container, to test his fine motor skills, and then seeing if he could get the Cheerio out, using problem solving, by turning the container over. They also used blocks to test his ability to sort by color and shape, ability to stack vertically opposed to lining them up horizontally, and ability to recognize patterns and copy them. The majority of the diagnostic tests were play based due to his young age and lack of verbal or signing communication skills. A month later, we sat down in a little room with a doctor, and were informed of Bryce’s results.

On June 9th, 2004, Bryce was diagnosed with Autism Spectrum Disorder by the Pacific Autism Resource Centre at Sunny Hill Health Centre for Children. The summary said that he displayed several features consistent with autism spectrum disorder including, delayed language, limited eye contact, self-stimulating behaviour, repetitive play, and delayed pretend play skills. His receptive and expressive language skills were also severely delayed and based on his age, his symbolic abilities, such as pretend play, were also delayed.

I remember crying and feeling so sad and not fully understanding what it is that they were telling me. We didn’t know anything about autism, but anything labeled as a disorder couldn’t be a good thing. I remember thinking to myself about the future and what was going to happen. We were told not to look too far ahead and to take each day by day.