Posted by Rachel Johnson on
This post has taken me some time to write and now that I’ve completed it - I find that it is very freeing for me.
Let me begin to tell you what our family has been experiencing over the last few years. We began to notice that our eldest daughter wasn’t developing like other typical children her age especially when it came to communication and language skills as well as noticing some intriguing behaviours. 2011 was a particularly challenging year. Being her mom, deep down I knew something was not right and that there was a lot more going on here than just a speech and language delay. She adored swinging (much more than the typical toddler), displayed repetitive behaviours (same song or movie over and over and over), rocked to calm herself, and placed her hands over her ears in noisy and uncomfortable situations (like entering a new environment or meeting new people). In the summer of 2011, Linnea was assessed by both a Speech Language Pathologist and Occupational Therapist. Her behaviours were very challenging to me and she was given a prognosis of a severe language and communications disorder at this time. She was registered in a preschool where she would get help with socializing, self-care skills, speech and language help and more in September. Currently, she attends a few hours, four days a week and has grown to enjoy it. Some days are difficult when she is being challenged by the educators and therapists to learn and do new things, especially when it is sensory related or unfamiliar territory. Thanks to her teachers and therapists for all their hard work with her.
In November 2011, Linnea was diagnosed at the Glenrose Hospital with Autism Spectrum Disorders. After receiving her diagnosis, it took some time for us to adjust to the reality of what this meant and how it would affect our lives forever.
I had already started researching autism in the summer because of my suspicions, but since the diagnosis, everything I research now pretty much is related to autism. My husband and I have been looking into alternative therapies to help Linnea, teaching her to further her strengths (like visual and rote learning), changes in diet, behaviour therapies, and more. I am exhausted. I find that some days I can cope on little to no sleep (having a teething one year old boy at the same time doesn’t help) and most days I feel impatient and find coping difficult. One of my best friends, Lia, has been a sounding board daily on what goes on: the struggles and the joys. Thank you Lia for being there for me. You are a rock in my life.
The littlest improvement (like having our first conversation on New Years Eve this past year) brought tears to our eyes. Linnea is now holding conversations that are simple and she is communicating better all the time. Today she even asked a “Can I…” question for the very first time without prompting or cues. I was very proud of her!
The reality of autism is difficult some days. The daily ultra early morning wake up calls are hard (4am-5am), but I’m getting used to it now. The tantrums and outbursts over the littlest things are frustrating and I often feel like I’m walking on egg shells around her. It is difficult to bring Linnea to birthday parties or the mall or the grocery store. Line ups aren’t fun for any toddler, but for an autistic child this can quickly turn into a tantrum and there is nothing you can do about it. Since Linnea is so visual and her memory is very sharp, even driving into the doctor’s office parking lot can stress her out and start tears. She is making better eye contact now and loves to do puzzles. She is very active and doesn’t like to sit still for long unless she is tired and watching a movie. She loves to play on the computer and gets around websites very easily and plays video games. She loves reading and has most of her books memorized after only reading them a couple times to her and she loves to script movies throughout the day. I’ll hear her repeat an entire scene from Curious George and act it out with monkey and dog sounds included. She is a happy girl most of the time and can be very silly. She is passionate and determined, stubborn and defiant. She loves to play at the park (swinging and slides are her favourite things) and go to the zoo. She loves animals and dancing. She loves music and has her favorite artists like Mother Mother, Muse, Mumford & Sons, Madonna, Noisettes, Brazilian Girls, and Veggie Tales’ Silly Songs with Larry that she sings along to. :) Despite our efforts to not have Barney viewed in our home she discovered elsewhere the show and loves to sing and dance along to every episode. She learned to ride a tricycle this past fall (finally!) and loves it! She likes to sit on Daddy’s lap and “drive” the car around the block too. I’m sure I did that as a kid too with my dad! Linnea loves playing with play-doh, colouring, painting and playing with balls (kicking, throwing, catch, etc).
A few more tidbits: Linnea turns four years old at the end of April and since she doesn’t eat cake or muffins, we will likely have gluten free pancakes (made with coconut flour) and sausages. There won’t be a big party or a formal gift opening. This would stress her out. Only recently is she not getting upset when hearing the Happy Birthday song. We try to expose her to as much as we can, but it has to be in small doses. Christmas this past year was quiet. We had a real tree with simple decorations and it was still overwhelming for her. We even tried to keep all the same daily routines.
Traveling is difficult as new environments are stressful and out of her routine. We love to travel, so we hope to continue to make small trips for starters and prep her as much as we can for the changes that will come.
I hope that some day she can learn to suck from a straw, blow bubbles in the water and maybe get her face and head wet and enjoy swimming. I hope that some day we can go for a walk in the mall without anxiety and I can teach her how we buy groceries and clothes. One day at a time and one development at a time. She’s a smart girl. She will learn!
Thank you so much to our close friends who have supported us and especially to our parents and family. My mother-in-law has helped incredibly by taking care of the kids so I can get a break or get some work done and I am indebted to her for that.
Our little girl is beautiful and precious and we love her so much. She is now beginning to look at the camera again instead of turning or shying away. Yay! I hope you’ve enjoyed seeing her in these recent pictures I’ve taken of her.
Thanks for reading and I hope that you learned a little about Linnea and autism.
If you want to learn more you can visit these informative websites:
Here is an article on autism written by CBC in 2010.
I will occasionally update on my photography blog about Linnea’s progress and development. Regression is common too, but I will remain hopeful that she will continue to progress and become more independent all the time.
Seeing Linnea in the tub with a smile on her face is new. This is a blessing.
Below is her favorite snowman and what she does when I ask her to smile now.
The picture below with the pouty lip is actually her making an elephant sound. She has made an extraordinary elephant sound since age one. :)
Thanks again for reading.