Our New Reality – Autism

Autism – a word I didn’t think about or use very often. Not until a couple of months ago when I started to have concerns about our identical twin girls, Sophia + Jule. And then two weeks ago we had a psychologist assess them both individually and her words to me that day were “they are definitely on the spectrum”. I felt a sense of relief in a way. We finally had a diagnosis and had direction in where to go from here and maybe it would be easier for those around me to understand and accept my concerns now that I had a professional diagnosis.

It’s been a really overwhelming couple of weeks. I didn’t think having a diagnosis was going to effect me so much because I had prepared myself pretty well for one. I had a pretty good idea the girls were on the spectrum based on things I was reading. But for the first few days after the diagnosis I was a wreck. I was irritable and scared. I laid awake at night wondering what the future held for Sophia + Jule. I worried if I would be strong enough to do this practically on my own, with a husband who works far away. I am sad that this means we wouldn’t be moving this fall like we had planned so we could be close to my husband and his work. I wondered how this was going to effect John. I wondered what I did wrong during pregnancy, was it the vaccinations, was I exposed to chemicals during pregnancy…so many questions.

Autism Spectrum Disorder (ASD) is one of the only disabilities where you really don’t know how this is going to effect your child’s future. You could have a room full of children and adults with ASD and each person in that room would have different symptoms or behaviours. It’s practically impossible to predict how this is going to effect the girls as they get older.

There is a lot to wonder about and stress about, and believe me, I have for the last couple of months, especially the week after we had the diagnosis. But now I am just ready to take this challenge on. I ordered 8 books about Autism from Indigo, they have been a huge comfort for me. Reading about other Mother’s and parents experiences with this has been therapeutic already.

This is just the beginning of our journey and I know there are going to be many challenges ahead. This week was very exciting for me because we started the girls therapy. They had their first physiotherapy assessment on Wednesday. On Monday they have their first appointment with a Speech Language Pathologist (SLP). The ball is starting to roll.

One of the most frustrating things I’ve had to deal with this past two months is the long wait times for the Early Intervention Program and Speech therapy programs. Up to 6 month wait times. I was not willing to wait that long, especially after reading that if you start therapy before 18 months it can make a huge difference and even reverse the symptoms of Autism. That was very exciting news for me. The brain is a truly amazing and complicated thing, and I am just beginning to learn. We have the ability to practically rewire the girls brains with therapy and by changing the way we interact with the girls and engage them on a daily basis. How powerful is that?! That is the part that is giving me strength and hope. I just know the girls are going to be ok and grow to live happy, healthy lives. I know that in my heart. I know that with hard work, these girls will have a bright future ahead of them.

So what is Autism? I’m sure some of you are wondering. I know I was, and I am still trying to really fully understand it. The best description I have found is this:

“Autism is an umbrella term for a wide spectrum of disorders considered neurological in nature. The disorders affect how a child communicates and interacts with others, how she learns, how she plays, and even how she imagines.” – Nancy D. Wiseman

Most people when they think of Autism have some preconceived idea, and usually it is quite severe. Sophia + Jule are very smiley and happy girls. They have been since very young. When people greet them both look and smile so big. That surely isn’t how people picture a child with Autism. Just look at those smiles!

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So what was it that I noticed? Why was I concerned?

Here are some of the “red flags” the girls had and what had me wondering if this could be Autism:

– Sophia + Jule have been “easy” babies since birth. They can sit and play on their own for up to an hour or more without making much noise or trying to get my attention.

– They would do repetitive movements such as rocking on the floor on their bum or shaking their heads “no” often.

– Both girls had no interest in solid foods until around 12 months old when they finally started to eat pureed foods. They gag on anything with chunky texture and do not eat finger foods yet at 16 months old.

– They do not say any words and rarely babble to themselves.

– They don’t put their arms to be picked up.

– When playing with toys they focus on one part of the object vs the whole object.

– They do repetitive movements with objects in their hands.

– They don’t imitate me (talking on the phone etc.)

– They don’t make eye contact often when I feed them.

– Jule grinds her top teeth together

– They do a repetitive stiff movement in their high chairs while looking down. Sometimes to the point of being unaware of anything going on around them. This only happens when they sit in their high chairs.

– They are delayed with motor skills. Only recently Sophia has learned to pull herself up to stand. She’s getting close to cruising furniture. Jule is getting close to pulling herself up to stand but we still have to help her build her strength up. Both have low muscle tone.

Those the main behaviours that I have noticed. I have to admit that it was hard to get people to see what I was seeing. I often heard “oh that is just what kids do!” or “Every kid does things in their own time, they can’t have Autism” or sometimes I had people tell me it was something I was doing wrong…that it was a result of me not having enough time to spend with the girls because I was so busy and home by myself. If that were the case, every child who had older siblings and a single Mom would have these behaviours. Obviously that is not the case.

Mothers know their children best. So if you think there is something going on, trust your gut and don’t take no for an answer. If you have troubles getting professionals to take your concerns seriously, find someone else. Navigating through the health care system has been really difficult and frustrating, and I still have a ways to go. You just assume that you will be taken care of. This is so not true. Informing yourself and being your children’s advocate is so important. No one cares for them or knows them like you do. You have to fight for whats best for your child. Don’t take the “wait and see” approach many professionals encouraged me to take. Diagnosing Autism in children under 2 years old is not common, but there are signs between 12-18 months of age for Autism. Don’t ignore them.

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7 thoughts on “Our New Reality – Autism

  1. Karlee, I’m so happy you’re connecting with resources that the girls and your family need. Such a big step! You know your girls best and are their best advocate – don’t stop fighting or learning. They’re so lucky to have you! And remember, you are supported, even if it’s just a sympathetic ear. 🙂

  2. Thank you for sharing your story. I know it will comfort other moms who are also just receiving a diagnosis. I’ll be here for you to help how I can from afar, even if that only means listening to your writing!

  3. So well said & I applaud you for voicing your feelings and what the road to your girls’ diagnosis has been like! I was once in your shoes with a son who was diagnosed at the age of two. He is now 8 and its a crazy fight with the system to make sure he’s continuing to get therapy. I am a strong believer in early intervention (as I’m sure most moms are) but good for you for being their voice and battling autism. Good luck with the books! There’s so much information out there & it’s tough to decipher the good information from the bad. I hope we can meet one day (hopefully with Julie also!) and can chat. What’s helped me the most are people who can relate to what I’ve been through. If you ever need some support, I am here!

  4. Hi Karlee. We we sorry to hear about the girls. If you get a chance, watch a movie called Temple Grandin, a movie about an autistic woman who completed a PhD and works with autism groups in the US. She is an amazing person. I wish you strength to get through this and have faith that the two of you and your family will be fine. Love Aunty Pat and Uncle Don.

    Sent from Pat’s iPad

    1. I will check that movie out for sure! We feel confident the girls will lead happy fulfilling lives, and could possibly do extraordinary things! We appreciate your encouragement and support.

      Love, Karlee & Jason

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