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Our Grade One Experience

Erika Rowden

Last summer I was so worried about Conor’s transition to Grade 1: the full days, more academic demands, eating lunch at school, recess. Of all these, recess was the one that scared me the most: would be on his own, was he able to make a friend to play with, would he run? So many scary thoughts.

We started to prepare for Grade 1 towards the end of Kindergarten. A “Welcome to Grade 1” story with lots of photos was a big help! During the summer, with lots of assistance from Candice and Jessica, I put together an “All About Me” folder describing Conor’s “superpowers”, along with the areas that he struggled in. I wrote a letter to his teacher and support staff, as well as the parents of the children in his class, so they could understand Conor better. We were also very fortunate to meet with his Grade 1 teacher before school started again. It was so good for Conor to see his new classroom and have some one-on-one time with his teacher, and it allowed me to discuss my concerns about the upcoming year.

 

We are now almost at the end of Grade 1, and I am so thrilled to say it has been a very successful year for us. Conor has made great progress not only with his schoolwork, but more importantly to me, with his regulation and social skills. He has friends at school! It makes my heart smile to see him run to the door in the morning to hang out with the other kids – in Kindergarten I had to carry him to the door and then try to get him through it. He is not alone on the playground, and has not attempted to run. In fact, he watches the other kids and informs the supervisors if anyone is trying to leave the grounds!

 

Of course, it has not all been smooth sailing. His teacher and I brainstorm regularly to help him regulate and stay focused on tasks. Every week I have a copy of their schedule, and I load it onto his iPad so we can chat about the school day. I have advance notice about any changes to their day, and whether there will be a substitute teacher or aide. A “quiet corner” has been set up in his classroom, and there is the option of working outside the classroom to help with regulation. And of course, he can access the sensory room whenever he needs it.

I have also had to address quite a few social skills issues. I did a presentation to his class on ASD to help them to understand some of the “whys” with Conor’s behaviour. I contacted our school liaison worker to source out additional support when he is at school. I volunteer as much as I can to give back, and have met with the Principal and Vice Principals just to let them know who I am and to advocate for my son. I know I need to be a presence in the school for as long as he is there.

 

I am very happy to say that I am not dreading Grade 2, because I now know what we need to do to be prepared for the new school year. I’ll update my “All About Me” folder and letters to staff and parents. Over the summer break we will continue to work on academics (a little every day), keep a bit of a schedule, attend a summer camp, and continue to work on social skills and regulation. But we will always keep in mind that he still needs to enjoy his summer and have fun, just like any other child.

Sue Thomas is an Educational Assistant with over twenty-five years of experience. She has a passion for working with children and adults with autism. Gerry Gabrielle is an Educational Assistant with a dynamic background, working with special needs children and adults in the classroom setting and in care facilities. Myles Bingham is a classroom teacher with a Master’s of Education Psychology with a focus on Special Education. As a part of Institutional Services Schools within the Edmonton Public School Board, this team works to support positive behaviour and build life skills for success in school and in the community.

January 30, 2012 was the day my son Joshua was born. It was one of the happiest days of my life, along with the birth of my first son. What I didn’t know then was that my new son would soon be teaching me the meaning of life.

From that day Josh was born, he was different. He didn’t have the natural ability to feed; the doctors were puzzled. After a few scary weeks of battling with weight loss, he finally learned how to feed. I knew then that we had a fighter.

As time went on, he was not meeting his developmental milestones, both physically and mentally. We went through a lot of testing, and he was eventually diagnosed with autism and other special needs before his second birthday. I cried, but I was relieved to finally have some answers. I knew it was going to be a long journey, but I wanted to be positive and focus on getting him the help needed. A diagnosis of autism can lead to heartbreak, poverty, grief, chaos, and even divorce; I was not going to let that happen. If I allowed this negative perception to take hold, how could I expect my son or anyone else to see the beauty in his autism? Autism can lead to courage, patience, commitment, understanding, problem solving, and strength that you never knew existed.

We have always treated him equally, and have never limited him. We have gone camping, visited busy malls, attended events, visited attractions, and taken long car rides and flights across Alberta and Canada. Some days it was rough, and yes, some days I wanted to give up, but I couldn’t. If I did, what kind of example would I have set for my sons? We don’t give up in this household – we improvise. If my son needs his music, air purifier and story theater in order to sleep, so be it. If we need to sing the ABCs a hundred times to get through the day, who cares? And if he needs to spin, jump, flap, rock and roll, well then, sometimes I will join him.

My son is now four years old, and he has taught me that there is so much more to life. He has taught me that no matter how hard life can get, you can’t give up. He has taught me not to take the little things for granted, and he has taught me how to fight.

Our house is barely ever quiet these days. His little feet are always moving, and his little voice is always mumbling. Life is chaotic, there is no doubt about that. We suffer through tears, tantrums, sleep, worries, scheduling, fears, acceptance, and more, but I wouldn’t want it any other way. He is the light of my life.

Christine Lutz is the President of the Chinook Autism Society. You can contact the Society at chinookautismsociety@gmail.com, or visit their Facebook group.

Autism x 2: What Happens When Your Second Child Is Diagnosed

Maureen Bennie

Originally published in the Autism Awareness Centre Inc. Blog

My son Marc was 2 years and 10 months old when he was first diagnosed with autism. I’d had clues: Marc wasn’t reaching certain developmental milestones like responding to his own name or waving goodbye. When I found out that Marc was on the spectrum I was devastated, but I was also relieved that my second child was a girl, because I thought there was little to no chance of her having autism, too. By the time Julia was 16 months old, I was rethinking that. Like Marc, Julia wasn’t exhibiting age-appropriate behaviour: there was no baby talk and she wasn’t responding to her name. One year after Marc was diagnosed, I was told that my second child was also on the spectrum. I will never forget the moment I received the diagnosis. I went through so many emotions and felt life was being completely unfair to me. I was full of resentment over having a second child with autism. The second diagnosis seemed impossible – how could this happen in one family?

 

What was hard in the early years was the level of difficulty each child had and how differently those difficulties presented themselves.

 

Our son, Marc, had no language until he was almost five. He relied on stimming to help with anxiety and self-soothe, engaging in video rewinding and obsessing over ceiling fans. His play centred around arranging toys. It took him hours to fall asleep, and he woke up frequently throughout the night. Marc followed a strict gluten-free/casein free diet from age 15 months on. He had frequent meltdowns and was hypersensitive. A paper cut could result in a 3-hour crying fit.

 

Julia, two years Marc’s junior, had the same language difficulty and also didn’t speak until nearly age 5. She would fall asleep at night, but wake at 2 AM as if it were morning and run around the house like a whirlwind. She had more imaginative play, concentrating on figurines and dolls. Julia was not a stimmer. She was more stubborn than Marc, and socially anxious and withdrawn. Julia would hold on to my leg all day. It took one year of therapy to successfully get her out of the house to do outings. She followed the same diet as Marc but would not eat the same foods within the diet. She was hyposensitive, requiring a high degree of input, and had a high pain tolerance.

 

Even with siblings, one size doesn’t fit all.

 

While there were similarities between both children, like toilet training difficulties, sleep disturbances, restricted diet, difficulty transitioning, anxiousness, and sensory integration disorder, their learning styles and how these challenges presented themselves required different approaches. For example, Marc communicated using PECS; Julia used sign language. Both children had completely different therapists because their learning styles varied. Marc loved using a Time Timer; Julia felt anxious about it. Each child was motivated by something different. Marc was eager to please; Julia didn’t care what anyone thought.

 

When it came time to start school, Marc clearly needed a specialized setting with a high level of aide support; for Julia, an inclusive setting. The decision for these two educational settings was the right one, and both flourished. Marc received more therapy for a longer period of time than Julia did. Marc had speech apraxia; Julia did not. They are both in high school and are now in the same specialized setting, although Julia can handle more independence. Each follows a curriculum designed with their needs in mind.

 

While the original diagnosis sent me into despair, I have seen a beautiful friendship develop between Marc and Julia over time – something that many people with autism struggle to find.

 

They are best friends and rarely have a disagreement. They are interested in each other’s passions. They are willing to try what makes the other one happy. The most important thing for them is to be together, whatever the activity. Even though they have such different needs, I am impressed how they fold into each other’s daily routines. Julia takes on more of a caregiver role with Marc, and he is happy to be cared for by her. Marc can interpret every whine and facial expression Julia makes, and she does the same for him.

 

Having two children on the spectrum has taught me how unique each child is even with the same diagnosis. Boys and girls present differently. You have to be flexible in your therapeutic approach, because what works for one child doesn’t for the other one. You have to develop different strategies for each child. You can learn from your mistakes on the first go-round and adjust for the second child. I read many books emphasizing different approaches to find information on what I could try for each child.

 

Expectations change with raising multiples – not only for the children, but for yourself. I am an expert at self-preservation because I know how hard it is to keep two children with autism happy and healthy. I need to be as fit and well-rested as I can be to tackle each day. Nothing has come easily, but I want to encourage new parents facing a second diagnosis that it’s not the end of the world. Just remember that each child has unique needs, and what worked for one child may not work for the second or the third. It is easier for us to adapt to the children than the other way around, so develop flexible thinking. Learn what is motivating for each child, how they communicate, what their learning style is. As the saying goes, if you’ve met one child with autism, you’ve met one child with autism, and this applies to children within the same family, too.

 

At the start of my multiple autism diagnosis journey, I thought this was the worst thing that could happen, but now I wouldn’t want it any other way.

 

Marc and Julia will always be together and will always have each other. They take delight in each other’s company. They accommodate and respect each other’s difficulties and preferences. Julia is stronger physically and better with life skills, but Marc has better academic skills and is less socially anxious when in public. Alone they might have never developed the communication and support skills that they have learned with each other. Together they are stronger, and they make an excellent life-long support team.

Making Room for Interactions

Our journey towards integration of students with Autism Spectrum Disorder (ASD), acquired brain injury, and Fetal Alcohol Spectrum Disorder into our school posed some unique challenges. The school that we work in serves students with severe behaviour disorders, some of whom are on the spectrum and some of whom are not. All of our students are volatile and violent; in fact, this is the entry requirement to attend our school. In addition, a portion of our school population is involved in gangs and engaged in criminal activities. Adding to these challenges, our students often have mental health diagnoses such as anxiety, Tourette’s syndrome, and manic depression. We have a very complex population of students to manage.

• The frequency of positive interactions between interaction students and mainstream students has increased
• Teachers have welcomed interaction students into their classes with mainstream students
• Interactions students have been able to experience our daily physical activity program, Science Olympics, the Terry Fox Run and other school wide activities
• Interactions students have participated in off-site field trips including volunteering, newspaper delivery, and skiing
• Work experience throughout the school has demonstrated to other students that Interactions students have valuable real world skills, and has resulted in increased respect for their abilities rather than their perceived disabilities

 

When it comes to planning for the transition to adulthood, determining who should be on your transition team is one of the first steps in fulfilling your future vision. Who makes up your transition team will depend on your youth’s goals and aspirations, and may include people such as:

• family members
• representatives from Human Services programs:
  • Your Family Support for Children with Disabilities (FSCD) Worker
  • Persons with Developmental Disabilities (PDD)
  • Assured Income for the Severely Handicapped (AISH)
  • Office of the Public Guardian and Trustee (OPGT)
  • Alberta Works
• representatives from other government or community programs
• Teachers and/or health professionals
• service providers, friends, and others in your community you identify as being important in you or your youth’s life

Your transition team should consider what support may be needed to support achieving your goals. When thinking about this, your son or daughter should consider the following five questions:

1. What are my goals?
2. What skills do I need to learn to reach my goals?
3. What local programs, services and supports are available to support me in reaching my goals?
4. What responsibilities must school, government, cultural and community agencies, my family and I assume in order for me to reach my goals?
5. Are there gaps or barriers to address in order to reach my goals?

Visit the Human Services Transition Planning webpage to learn more about the integrated approach to transition planning and proactive supports that are available. If you have any further questions about how FSCD can support transition planning, please contact your local FSCD office.

From Autism Canada

About a month ago, I went for coffee with a friend who wanted some help putting together an article about motherhood and autism. I cherish those stolen moments away from the house and into the real world. Somehow, what used to be a simple cup of joe in a chatty, cozy coffee house has become as spectacular as a day at the spa, and sharing that moment with this friend made it even better. She’s the kind of gem everybody wishes they had on their friend list. When you’re with her, you know she’s listening. She’s beyond understanding – and if her experience is different than yours, she’s sincerely empathetic. She’s real. She’s raw. And she’s one of the gift’s I was blessed with when I embarked on the journey of parenting a child with autism.

Thank you, Candice, for sharing this story.

When we were younger than we are today, it was easy to slip into the pre-designed pictures of our futures. Our visions of tomorrow and the days beyond it were pretty, neat and tidy, and full of smiles and laughter. In our imaginative futures we’re surrounded by our friends and creating perfect birthday cakes for our children’s massive birthday parties. We’re sitting in our front yards with a cool drink in our hand, chatting with our neighbours as our children ride their bikes around the neighbourhood. Our friends would gather in our homes as we celebrated the significant successes our children reach – like Kindergarten and driver’s licenses and graduation.

Indeed, that might have been how life used to look. But then one day we find ourselves sitting in a doctor’s office with our perfect little babies on our laps, and we watch the professional’s lips form the word autism.