Before Kids

I would like to tell you our story  but I’m not exactly sure where to begin and so I will start with when Tammy and I got married. We were married on August 4, 2007. I’ve actually known Tammy since 1994, we went to the same high school, Semiahmoo Secondary in White Rock, but that’s for a totally different blog post. We moved into our first home in Surrey that same year, it was a very exciting time. We were both working for a software company called Top Producer Systems in Richmond. She was in sales and I was in technical support. We were making a pretty good income and we were rock climbing, snowboarding, going to concerts, hiking, camping, attending church regularly and a lot of other social functions. We were living the dream!

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Josiah the Ninja

Fast forward to Nov. 27th, 2009 Josiah was born. This was one of the most memorable moments of our life. Holding your first baby in your hands for the first time is something you never forget. As a father, I had so many dreams and ambitions of what my son would do when he grows up, who he would marry, the things we would do together. Our first year with Josiah was an adventure. Besides some challenges with breastfeeding and not sleeping through the night until 6 months later, everything was pretty normal, he met all of his milestones.

Now it wasn’t until Josiah was 2 that we began to wonder why he wasn’t saying any words yet. He’d make also kinds of crazy sounds but not words. In hindsight, we should have noticed sooner and acted on it but we thought maybe he was just a late bloomer and we chose not to worry about it too much. The other interesting thing with Josiah was that he liked to group objects of similar size and shapes together. For example, he’d move all of the chairs on our main floor in a circle touching each other. Or he would link up a bunch of toys all in a straight line on the floor. He was very visual and really enjoyed creating different patterns. He was also unusually fit for his age which I don’t think has anything to do with his autism. But he would climb our shelves and counters and jump into the air fearlessly and land gracefully on the floor barefoot without getting injured. He was like a miniature ninja running around the house. Which kind of made me happy because as a rock climber, this is something I plan on teaching him when got a bit older.

By this time, Josiah had also developed a very strong gag reflex. He was only able to eat food that had been processed through a blender otherwise it would make him throw up. He was very sensitive to different textures and this made it impossible to give him any other type of solid foods. It also took a really long time for him to eat, over 2 hours sometimes and that was being spoon-fed by me. I remember one time my arms were getting so sore and injured from feeding him that I had to wear a sling to support my arm as I was developing really bad tendonitis. I was popping Advil just to numb out the pain. It felt like all I was doing all day was feeding him. This went on for years.

Josiah was officially diagnosed with autism as well as speech delay when he was 4. We were on waiting at Sunnyhill for 6 months until we received the diagnosis. To us, the diagnosis is just a label, Josiah was still the same person. This just gave us access to support services and funds that we wouldn’t otherwise have. This was also the year that he said his first words. As you can imagine, Tammy and I were overjoyed. Before that, he communicated mostly through gesture or he would point at things. His vocabulary grew slowly that year, still well behind for this age but we didn’t care. He still had a lot of trouble eating solid foods and so we employed a feeding therapist for 6 months to help him. That was one of the best decisions we made. Josiah’s eating went from gagging and possibly vomiting from a small piece of meat the size of a tic tac to eating a full on meal with veggies, rice, meat on his own without our help. It still took him about an hour or more to eat and he still gagged once in a while but that was a significant improvement from just eating blended food. It felt like we won the lottery.

Josiah attended Kindergarten briefly at a public school until we realized that the EA mostly ignored him, attended to other students who also had disabilities. He didn’t receive the proper guidance and support to help him learn and focus on school. A large class just wasn’t working for him. We pulled him out and decided to homeschool him through TLA (Traditional Learning Academy) https://schoolathome.ca. Another really good decision that we made. My wife arranged this in a way that she wasn’t the one doing the teaching but she did help design the curriculum for him and the teachers would come to our house to teach. The nice thing about homeschooling kids with autism that it is completely paid for by the government! But you have to know how to access those funds. That will be another blog post for another time.

Josiah is 8 years old now and has been homeschooled ever since. He is also taking behaviour therapy to work on things such as anger management, sharing, negotiating and other useful soft skills. He took speech therapy for a few years but we have pulled him out from that as he is now very capable of speaking in full sentences. Sometimes his choice of words are bit strange but we just help by correcting him and he doesn’t mind. Another thing about Josiah is that he has a brilliant mind. He has a photographic memory, can hum music exactly as he hears it, can figure our the notes on the piano for a song, amazing at video games, reads above his age level now and is really good at solving puzzles-puzzle that I can’t solve as fast! But with all this talent, he still needs help with being patient and being kind to others and waiting his turn. I have high hopes for Josiah and his future, such a sweet, funny and super creative boy.

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Josiah

Caleb Bear

Let’s rewind a bit. Caleb was born on Dec. 31st, 2010. Yes, that is correct, on New Year’s Eve. We were actually planning to attend a friend’s party that night but I guess God had other plans. The interesting fact about Caleb is that Tammy didn’t actually realize she was pregnant until she was already 5 months in. She thought she was just gaining extra weight and didn’t give it a second thought. So now we have what is known as ‘Irish twins’, kids that are about 1 year or less apart in age. Like Josiah, Caleb was a happy baby and also met all his milestones in his first year. He was actually better at breastfeeding than Josiah. Josiah was breastfed for only 6 months but Caleb was for about 2.5 years! I am not joking.

Like Josiah, Caleb didn’t say any words in his first or second years at all. We started getting worried quite a bit and on the recommendation of the same doctor at SunnyHill, we agreed to get him diagnosed. It was until about 6 months later that he was also diagnosed with autism and speech delay. Caleb also displayed a lot of repetitive activities (stemming) such as tapping on the window and spinning things non-stop. He was so consumed with these activities that he seemed to be in his own world. He also didn’t respond to us calling his name which made us sad sometimes. However, he made up for it because he loved to be hugged all the time. He had an extremely difficult time doing anything, we basically have to do it for him all the time, feeding, drinking, washing hands, bathroom, etc. He also had challenge eating but unlike Josiah who gagged, Caleb would put everything in his mouth and swallow it whole without chewing it first which would of course cause him to vomit sometimes. He did take feeding therapy like Josiah and we’re happy to say that he is now able to feed himself regular meals. Both of our boys are have come a long way, not picky eaters anymore, and they love their veggies!

Caleb is 7 years old now and is considered non-verbal at this point. He has been taking intensive behaviour therapy, speech therapy, occupational therapy and physiotherapy since he was 3. He still communicates with a gesture but is learning to pronounce and actually say some words like ‘on, off, hi, bye, weee, go away’ and learning to make sounds like ‘buh, puh, muh’. This is significant progress for him and it was only in the last year that he has made this leap which is very promising. There are also kinds of exercises that he does to help make his lips and mouth stronger to help him improve his speaking such as sucking chocolate pudding through a small straw. Try it out if you get a chance, it’s super tiring. He does this every day! Such a brave little guy.  Also, his diagnosis has changed from speech delay to Apraxia of speech. It’s basically a speech disorder that makes it difficult for him to say words. There seems to be a disconnect or delay when he tries to say words we tell him to say. I know that he hears us and understand us because he looks at us with his beautiful brown eyes. It does make me feel sad sometimes that I can’t have a conversation with him.

I often have vivid dreams thinking that he was able to snap out of this disorder and started speaking to me. I have learnt to accept that he is non-verbal at this point but I will never give up on the hope that someday he will learn to speak, maybe not like we do, but enough for him to feel happy. He is learning to use the iPad to communicate his needs through an app specifically designed for his needs. He is picking it up very well and that makes my wife and I extremely happy. Unlike Josiah, Caleb is obviously quieter, but he doesn’t have any real behaviour issues other than he does throw tantrums and sometimes he tries to bite or hit himself or others when he gets frustrated. This usually stems from the fact that he can’t communicate how he feels as you can imagine how frustrating that can be. We allow him to have tantrums because he’s allowed to express himself. We try to redirect it to another activity if it becomes too much and he is able to transition fine. Caleb is not so mentally preoccupied as he once was when he was younger. When we call his name now, he comes. He is able to follow simple instructions and like Josiah has an exceptional memory, It must be an autism trait. He is very particular about how things are organized. If something doesn’t look right, he will correct it.

Another thing I didn’t mention earlier about Caleb is that he is extremely sensory to sounds. He doesn’t hate sounds or anything but he has super sensitive hearing, almost super-hero like. But it becomes an issue when it comes to sleep because the slightest noise wakes him up and before you know it he’s up all night because he has trouble putting himself back to sleep. He still has a lot of sleepless nights. We actually built him a box which is completely soundproofed that has his bed inside to help him sleep better. It’s helped quite a bit when it’s raining or windy outside or someone slams their car doors in the middle of the night, it messes up with his sleep. We are still working on trying to solve this one.

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Caleb

That’s one thing about life and autism in general, there is never a dull moment, you are continually trying to problem solve. Oh and a small detail I failed to mention, on April 6, 2018, Ella was born! So far all things pointing to her being neurotypical (crossed fingers). Actually, her eye contact is amazing and she’s already starting to communicate! I have a lot of other interesting stories to tell you but I will save those for future blog posts. I hope you enjoyed reading a little bit about our autism journey.  We haven’t arrived at our destination yet, not sure we ever will, but while we’re on this journey we have made great strides to make sure we have a balanced autism life full of fun adventures and happy and memorable times. Thanks for reading and visiting our blog!

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Ella

 

12 thoughts on “How Did We Get Here?

    1. Thank you Janet! We appreciate your encouragement and commenting on our stories. We try to stay focussed on being positive and our faith definetly helps in that regard.

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  1. I applaud your decision to stay home! I would have loved to have been able to do the same when raising my daughter. She has a severe learning disability and tested in the lower one percentile. She is 21 now and is very much like a young teenager, emotionally. She will not progress much passed a grade one to two learning level. It’s a bitter pill to swallow when your child has to struggle with things they should be able to do but there are counter balances in small ways. We find the silver lining and do our best. The worry never recedes and your whole life revolves around their disability but you learn to adjust, make compromises, accept what cannot be changed and fight for what you can change about the system. Keep blogging! Great therapy for you and important to share with families that are going through the same. Build a community or get involved as much as possible with any groups that are in your area. I wish there were more resources for peer involvement available to young adults with learning disabilities in the Burnaby area but I may need to just start building one. Great article!

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  2. Thanks Tracy! Working from home wasn’t really much of a decision. I didn’t really see much choice. It would be extremely difficult for my wife to manage everything on her own without my help. Although it is getting easier as the kids become more independent, it’s still a bug juggling act we have daily. I’m sorry to hear about your daughter. I have the same worries for Caleb. However he is still young and I am still hopeful that he will make some big strides in communicating and doing things on his own. Once I get a little more traction on my blog, I plan to join or maybe start a meetup group locally. Like you said, it helps venting and sharing with others. Thanks for you visiting and your support. I truly appreciate form one parent to another!

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  3. I find your point of view interesting. I raised a daughter with Lenox gastaut syndrome, Autism with sever epilepsy and mental retardation. All sadly a genetic deformity passed on by her fathers side. It’s a tough road hang in there. I be reading to see how your all doing. And if you ever have any questions please feel free to ask me. Sadly my Brittany has passed away now due to her illness but I’ve been through many challenges with her. I might be able to help?

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  4. Truly a heart felt story about your family. Praying for blessings to be on you all. We have our Jaiden who is amazing with his hugs, comic relief but hard to handle all at once with him being non verbal, aggressive at times and a slew of other issues. You inspire me to keep going and advocating. Thank you so much.

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  5. Thanks Maritza, I feel like our families have a lot in common. Your Jaiden reminds me so much of Caleb. It’s good to learn and connect with a family who also has a faith background, I look forward to reading some of your blog posts. Between you and your and husband, you guys have quite the online presence, I have lots to learn! Feel free to give me some feedback as I am still fairly new to this whole blogging/vlogging world. Thank you!

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  6. It is good to connect with other families going through similar things and it can be such a relief at times! As you and your wife may know, having children with autism presents with a slew of things and our faith has been tested for sure. However, despite all of the changes, we have made having faith in God and our marriage a top priorities. My husband and I decided a while back that we needed to change our family dynamic as we got through a lot of challenges with Jaiden. We went full force coming up with ideas and made some changes from brainstorming. Adolescence of course, presents with a whole new set of challenges and we are again back to brainstorming. Keep writing and putting your story out there as it is inspiring and you guys will be helping many people. You can always email us anytime! Kevin can be reached at gents21@icloud.com and I can be reached at maritzamolis@gmail.com. We are open books!

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    1. That’s so great to hear. My wife and I make our faith priority as well. We make sure to read our bible and do devotionals on a regular basis to keep our eyes fixed on Jesus, also so that we don’t give in stress or worldly thinking. I’ll be sure to connect with you guys to learn and pick your brains! I’m sure we will be going through similar challenges as well as the boys become older. Thanks for your encouragement!

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