Nate didn't "fit the mold" right from the start. He never slept, yet he was perfectly content all of the time. He didn't meet the typical milestones according to "What to Expect in the First Year". He didn't roll over until he was 7 months old. He never crawled... except that strange army crawl where he used his forehead to help push him along the floor. He didn't walk until he was almost 18 months. When we were concerned, our doctor simply attributed it to his big head. He said, "I cannot wait to see this kid play soccer"! I was so lost, I literally threw that book in the garbage.At one year, Nate began having night terrors. Every. Single. Night. If you have not experienced a night terror with your child, you are NOT missing out. These are literally terrifying. Nate would thrash, scream, kick and hit. Sometimes his eyes would be wide open and sometimes they would be closed. They would last anywhere from 15 minutes to an hour and a half. Before we understood what we were dealing with, Matt and I would take turns holding him, rocking him, taking him outside, and rubbing his back. And then he would simply be done. And look at me and say, "hi mom". We were exhausted. And number two was on her way.
Around one and a half, we noticed obsessions. He would line up cards, cars, food (before eating it), and pretty much anything else he could get his hands on. And you better not dare to move things out of their place. We also noticed that he had a "tick" when eating or concentrating deeply on something. Once he started walking, he was walking on his toes. We saw a paediatrician who stated, "He's walking like that because he likes it". The list of idiosyncrasies we saw was extensive: loud noises and certain fabrics bothered him, he was extremely textile sensitive to food, he scheduled himself, he couldn't sleep with any light in his bedroom, he would not get dirty, he would get tired easily, and the list goes on and on.
Alarm bells were ringing.... but nobody else seemed particularly concerned. Against better judgement, I pushed these alarms away full force. Every bit of my intuition was screaming and I found a way to ignore it.
When Nate entered Kindergarten, he was visibly behind in his letter recognition and had a speech issue (an interdental lisp). I thought briefly about holding him back (and here's one of my most shameful parenting moments) but I didn't do it because daycare was costing us a fortune and we simply needed to dig ourselves out of a financial hole. I opted to push him forward into Kindergarten. It became very apparent in Grade 1 that Nate had a learning disability. Matt has a learning disability and we were told before having kids that it was likely genetic and we should keep a close eye on our children. Sure enough, we knew it and it was confirmed with some testing not too long after his incredible first grade teacher reinforced our concerns.
By grade 2, Nate was depressed. He was struggling socially, emotionally, and educationally. He was bullied repeatedly, he was called stupid, he had no friends to play with at recess, he stood alone on the playground waiting for the bell to ring, he begged me to stay home so that he did not have to go back to that place, and he told us that he wished he were dead. My heart was breaking for him. I pleaded with the school to help us - to give Nate some emotional and educational support to help him through his day. I asked if he could be referred to a district counsellor. His teacher plainly stated that in her opinion, "Nate was a typical grade 2 boy". When he didn't get his sentences written in Language Arts, he would be forced to remain in the classroom while the rest of the students attended PE. He was pressured to read 4-6 books a night at home, even though he could not read. He never did get a referral to the district counsellor. The school did nothing to stop the continuous bullying he experienced. I felt completely helpless and alone. My world was shattering around me and I was overcome with anxiety.
And then something incredible happened. I met a friend who introduced me to Autism. I treasure my friend, Lisa, and everything she has done to ease me into this new world that I am now living in. Because of Lisa and her support, I now knew Nate had autism. I also knew he was highly functioning. Now I just needed a doctor to confirm it.Between the time that we decided to see a psychologist and the time we got a diagnosis, we made some major life changes. My cousin-in-law, Brooke, suggested that I meet with the Principal at Devereaux school (a small rural school) and we were instantly sold! This school was different and the Principal was on board with helping Nate in any way she could. We changed schools instantly and noticed almost just as instantly a change in our son's demeanor. Although still clinically depressed, Nate smiled more and spoke more. He made two friends at school. And most importantly, he was accepted by his peers. However, this was a major change for our family. Although my amazing mom had volunteered to drive Nate to and from school for the next four and a half years (an hour-long drive morning and evening), we didn't feel it was fair to her so we took a giant leap of faith, sold our home, and bought property Arras. This was one huge and stressful move for us.... it meant living with my parents while we built a new house (my parents are amazing but 6 of us in a 3 bedroom rancher makes for a whole other story) and a change in school for Arielle, who was thriving in her current situation. But we did it! We made it! And we are here!
Nate is a changed boy from two years ago! It's been a LONG two years, but he has come so far. However, we have learned some very painful, heart-wrenching, and life-changing lessons from him.
1. We learned to let go.
This was a very difficult challenge to overcome. We have had to let go of some friends that did not support our parenting style. I may not be as strict with Nate as others feel I should be. But, I am one of the few people that Nate trusts, feels safe with, and shows him unconditional love. After all the pain he's been through and all the tears he has cried, I will parent MY way because I am HIS mom. And if you see me parenting him a different way than you would, show some empathy instead of judging me. Look at him and I through eyes of compassion. Maybe you could learn something.
I've also let go of friends who have not supported me in understanding Nate's disability. The long and short of it is this: if you want to be close with me, you need to understand Nate. And what I mean by that is, you need to show my son compassion, patience, and love. I NEED him, but I do not need you.
2. We learned to trust.
3. We learned that we have a support system.
We can ask for help. You know it could be tough with Nate and you help anyway. This is absolutely huge in our world because we feel like nobody wants him. And he is part of the package. If you accept us, you have to accept all of us and that means our autistic son. There are no conditions. There is compassion.
4, We learned to advocate and sacrifice.
We learned to ask for what Nate needs and not accept no for an answer. We learned that we will forego anything in order to help him. We have and will continue to sacrifice our needs for his. We didn't want to leave our home. We don't want to have those difficult conversations with teachers and friends. We don't want friendships to turn into acquaintances. We don't want to have to deal with two hour meltdowns that result in our daughter feeling ignored. But we are doing the best we can.
And so, I've written this long post with a message. That is.... I know what it's like to face adversity. I have been "face down in the arena" so many times in the last ten years that you would think it would get easier. But it doesn't. That said, I have learned how to face these challenges and come out stronger. I know what it means to FAIL.... but I also know what it means to CONQUER. And I do feel regret... for so many things.... but I choose to turn that into a lesson and become stronger because of it.
Thank you all for being in my life. I appreciate you in your many forms. And I thank you, from the bottom of my heart, for reading our story about Nate.
Much love, The Spencer Family.
