Linnea | Life with Autism

Well, it’s been a very long time since I’ve written about Linnea and thought it’s about time to get my thoughts written down. So here it goes…This year has been incredible. Truly. On January 1st, 2012 Linnea and I had our very first little conversation, about coffee (something I enjoy very much every day). Now it is August, eight months later, and we are having full conversations. They are not often super long or complex, but we can converse about things she likes or has done, songs she likes, movies she wants to watch, and simple interactions during games or exercises. Music continues to be a huge part of her daily life. We listen to music for several hours a day. She enjoys Brahms Symphonies No 1 and 4, the new Metric album Synthetica, Hairspray soundtrack, a Sonny Rollins tune called My Ship (she actually hums along which I find amazing as it’s not a simple jazz tune), Politik by Coldplay, Take a Bow and Supermassive Black Hole by Muse, Teen Town by Jaco Pastorius, Billy Talent, and The Darkest One by The Tragically Hip. These tunes and bands are played on repeat right now, but thankfully in a few months I know we will be listening to something different. I enjoy watching Linnea love music. She’ll squint her eyes and rock on the couch or on her rocking chair completely engaged with the music…she knows the words to all the songs and sings along and knows the drum parts quite well and other intricate elements that I find are atypical of a child her age. She will dance a certain way or jump in time and respond to various things in a piece of music quite differently then I’ve seen from other kids. I find it very interesting and I do believe music is a big strength of hers. She has harmonized and picked out syncopation too. Music lessons are definitely in her future and possibly a drum set! 

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We put Linnea on the GAPS diet in mid December of last year and it has been amazing to see the results in her communication and behaviours. I’m thankful with the diet Linnea is on and the homeopathics and vitamin supplements she’s taking and that she continues to progress overall. She is on a restricted starch free diet and even though she can’t have bread or grains, or any starch, the variety of food she is intaking has significantly expanded especially in the vegetables department. She doesn’t know she is eating vegetables however as they are chopped up small and I’m feeding them to her while she is distracted so she can’t see what she is eating. Occasionally she’ll pull out a piece of bell pepper or squash from her mouth and say oops. I typically exclaim, “I wonder how that got there! Oopsy daisy!” She still won’t eat peaches or nectarines, fruit smoothies, bananas, avocado, cucumbers, carrots etc. but hopefully we will be able to work on food issues more when she is older. For now her developments have been in the verbal department.

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She exploded verbally and her melt downs lessened drastically over the last 6 months. We use a visual schedule called PECS (Picture Exchange Communication System) to give her predictability and routine thanks to Innovative Intervention Services who works with us helping Linnea each week. She loves following schedules. If there is something on the schedule that she doesn’t want to do she will still do it, because it is on the schedule (like bath time). Linnea has made friends with our neighbors and greets everyone when she is outside or on a walk. She doesn’t bolt any more and waits for me when I ask or does it on her own. She holds my hand when we go to the store and “helps” me get groceries and pay for them. She even tried walking out with two field tomatoes once as I didn’t notice she grabbed them and had them in her hand at the check out. Linnea is a very rigid girl so changing things on her can be difficult and transitions can sometimes be challenging for her. I continue to prep her for everything we do and it helps her with predictability and keeps her regulated. 

Below here is Shawna (teacher), Nori and Des (aides) with Linnea on her last day of school in June. They meant a great deal to her this past year at her first year of preschool and next week she will have a new teacher and new aides. This adjustment will not be easy, but I know for a fact it will go smoother than last year’s months of tears. The first week she had cried for the full 3 hours at school. Now we can communicate better and she understands she will have a new teacher and make new friends. Exciting!!

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She is making huge headways with bathing. Washing her hair is still a fight but at least her recovery time after the “event” is pretty quick. She recently started dressing and undressing all on her own and learned to do her snap on her jean shorts. I am so proud of her. She made gains going into the neighbors kiddie pool several times and playing with the sprinkler although she still hasn’t actually run through it yet. She loves to jump on her trampoline and swing and these activities are very regulating for her.

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The biggest development for Linnea though that happened in the last two weeks is that she is now toilet trained during the day. It happened in one day. I just said, “No more diapers. You’re a big girl now and pee goes in the toilet.” One big and a few tiny accidents and then success in the toilet the first day was all it took. From the next morning to date she hasn’t had a day time accident and is a proud little big girl.

We got her a two wheel bicycle with training wheels but she can’t ride it yet. This will be something that will take time to learn over the next year but the school will help with this too. She is excited to go to school again next week as we visited there this past week and she was quite social and excited about being there. Tuesday she meets her new teacher and aides and her new friends. Thankfully there is a boy from her class last year that will be with her this year so there is some familiarity.

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This summer Linnea developed her artistic drawing skills and draws characters from the movie Hairspray (Tracy, Penny, Link, Seaweed and Edna). She also draws Mickey Mouse, Donald Duck, Goofy and Minnie Mouse including the bow and eyelashes. She is starting to type words on the computer to find the songs or artists she wants in iTunes. She is learning math skills (she knows some of her multiplication tables the best), loves to count to 100, learning to read on her own and has learned many sight words already. Her writing skills are improving all the time as well. Her memory is one of her biggest strengths and she proves that to us and her aides daily. 

Socially she played fairly well with the neighbor kids and we had a few play dates with other friends. She still will end up playing on her own as pretend play skills are difficult. She fights well and often with her younger brother and they love to hit, scratch, push, and scream at each other just like all other siblings at this age. They also can play together and will be found taking apart Linnea’s room and giggling. They play “chase” and “tickle” which are their two favorite games to play with each other. I even found Linnea reading stories to Toby a month ago. It was truly adorable to see! She even was a little protective last week when she caught Toby chewing on a long spring and she said to him, “No Toby! Take it out!” 

This week has been more of a difficult one because of the seasons changing and school starting soon. We’ve experienced less sleep, more meltdowns, regression in her behaviours and stimming and a lot of yelling and screaming. It continues to be a roller coaster ride of ups and downs with her and our son Toby who is now 20 months old. Overall we’ve had a much more positive summer with the kids and have enjoyed being outside. Below is Toby at the park a month ago.

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I look forward to what this next year will bring for her at school and I’m hoping she’ll continue to grow socially, verbally (she’s not as echolalic as before and she is getting her pronouns switched around occasionally and this is awesome!!). For example the other day she had two personal pronouns in the same sentence. “Can you get my cup please?”  

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I successfully cut Linnea’s hair while she wore headphones (so she couldn’t hear the scissors cutting) and danced and sang to her favorite Metric tune of the season (Breathing Under Water). Our recent family session done a couple weeks ago shows her hair much shorter. The photos throughout this post are from this entire year although the ones of her in our tree are from this past summer. 

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I am a grateful and thankful mom for both my kids. Just in case you were wondering about our son Toby, he is doing very well and developing neurotypically. He is talking a ton now starting at around 19 months of age and he mimics much of what we all say. He will speak in sentences to Jeff and I but most of the time we can’t understand him. He loves to greet people at the door and always says hello to anyone who comes over. He is a boy that is into anything and is a lot of fun right now. He likes to draw lines on the chalkboard and scribbles spirals on paper. He likes to play with cars and dolls and loves to splash in water. 

I wanted to really focus on the positive developments of Linnea this post and less on the frustrations we deal with daily. With Linnea’s autism comes the continuous sensory issues, feeding difficulties, behaviours that aren’t very pleasing (squealing, loud pitched sounds or screams, spitting, peeling paint and wood off our walls, picking skin repetitively until she bleeds, meltdowns over the smallest detail we may do wrong or missed in a routine, etc), hyperactivity (unable to sit still for a meal), scripting movies, and lots of stuff on repeat (whether they are books, music, movies, drawing the same characters, or an activity done the same way each day). I am quite used to how things go and am finally settling into our own routines. Toby fits in pretty good most of the time but doesn’t get a chance to play with other kids besides Linnea very often so I’m hoping he can make some new friends this coming year to play with. 

While looking for photos of Linnea to put in this post I realized I didn’t have very many to choose from and didn’t get a chance to really edit them so I hope you can see who she is in the images - a vibrant, smart and passionate young girl. And to top it off she is a lot of fun! Her laugh is contagious! 

Here are some my friend Jaleen of Sweet Life Photography took of our family and Linnea a couple weeks ago. These are the most recent photos of her. Thanks Jaleen!! *note her short hair - YAY!!*

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Thanks for reading if you’ve made it to the end and I hope you’ve learned a little bit more about our girl and autism. 

Much love,

Rachel

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