As I sat down to write this post, I started thinking about what a long of a journey this has been. I am going to be candid with you, my family went to hell and back when Alex was diagnosed, and it took me some time to get to this point. But if I knew then what I know now, I could be rewarded with a happy life much earlier than I did. Autism is a disorder, it inherently made my kid different from the rest of the “normal” kids. He spoke a different language from the rest of us, and it was incredibly difficult for him to find his footing, and for me as a mother, to guide him through that. Nevertheless, autism is not something that should deny him, and us as a family, joy and happiness. Sky is the limit as long as we don’t draw the limit line ourselves.
It is crucial to note that all people on the spectrum are different, and you may think that this is not for you because Alex is a high functioning kid on the spectrum who goes to a typical school. But this blog is not about treating autism. It is about living with it, living happily and beautifully, and not letting autism define your kid, your family, and you. It is about not letting autism limit the good.
Alex’s journey with autism started when he lost his speech abilities completely by the age of two and didn’t speak for almost two years. He had no sense of hunger, severe sensitivities to food textures and wouldn’t eat solid foods until he was five. He was easily overstimulated and would talk to his hands, making non-verbal noises through a big chunk of the day. He’s gone a long way, and it took a lot of hard work from all of us, including him. No success ever comes without hard work, but hard work doesn’t have to be filled with dread and negativity. Through this blog, I want to share how we got here, and to inspire you to believe that you can build for your kids, your family, and you, the life you want.
After getting through the initial shock of realizing that Alex is on autism spectrum, I went into a “fixing” mode. I researched, looked for treatment options and therapists, and drove him to appointments daily. Between the beurocracy, filling out papers, and looking for help, I didn’t process what happened to my child and my family. I was determined to take care of things and get back to our ordinary family life. Processing was not part of the plan. I think I was so afraid to sit with the feelings that came with such a diagnosis that I took a task-based approach. I convinced myself if I did this, I would make it so things were normal again. But that’s not how it works, and know now how beneficial it could have been to let myself feel.
Time went by and while things were progressing, they were progressing slowly. His severe aversion to foods was a nightmare. Realizing that there was no back-to-normal-date, was tough. I was 38, working, and then working at home with Alex for tiny steps forward. Remember the avoidance from earlier? Well, it eventually came crashing, and I fell into a hole. My life felt like nothing but futile hard work, and darkness.
Climbing out of the hole was tough. Getting out of bed in the mornings was excruciating. While my mind was awake (sort of), my body felt too heavy for me to carry. For some time, a sense of duty would help me drag myself to work and to Alex’s therapies, but one day, I found that my sense of duty to my family and child was no longer strong enough to get me out of bed. I didn’t care about anything and anyone anymore. Disappearing felt like the only relief. It’s hard for me to talk about suicide, it scares me to write the word even, but it’s important because I know I’m not the only one whose experienced. I know how big the feeling of shame surrounding being suicidal is. If you’re at this place, you can get help. I did, and it was the best decision I could have possibly made.
Equipped with meds and therapy, that awful feeling of absolute exhaustion was gone; I had a boost of energy. I knew that this time I could not fall into the same trap of expectations and started looking for other ways to bring happiness back to our family’s life. It was clear that I could not wish autism away, but I could understand it and work with it.
You know, respect and communication in a relationship is the key, and remembering that, it was surprisingly not very difficult for me to learn speak Alex’s language; to understand why he does what he does and respect his feelings about things. This made night and day difference for us. If you only knew (you probably do!) how many times we had to walk out of restaurant because he would throw a tantrum. Before, we would walk out frustrated about how tough our life is which would translate into tension and more tantrums. But respecting his feelings about the way any given restaurant looks, smells, or feels, made a huge turnaround what led to the end of tantrums. There are restaurants that I hate too, which nobody would force me to go to. So why should I force him to go there? Just because I don’t share his feelings? If he is coming with us, then we can find a place that all of us would like, and there are plenty… I will leave the details to our outings to another time. I just want to make a point that respecting your child feelings and willingness to learn and understand his language, will give you an enormous opportunity to gain trust and ability to communicate with him or her, which eventually will lead you to the ability to teach your language too. And that can do wonders.
Is it too cliche to say that happiness is in a journey? Learning to understand what Alex feels and does opened up his seriously awesome personality. He is smart, he is funny, and compassionate. When he knows his feelings are respected, and he is not frustrated from the lack of understanding, he is calm and happy and more willing to open his world to us. When he sees that we are genuinely interested in his favorite subjects (from Tesla cars to Youtubers, to How It Works and Stranger Things), he comes to us to share. At the same time, when we get genuinely excited about our interests, he wants to know what we are excited about and participate. And that brings me to the final point for today. Bland and boring is not appealing to people on the spectrum, at least not to Alex. And while there are things they have to do, we had to learn to find something exciting about most, even routine, things we do. Cooking, tasting and learning about different spices, planting herb gardens to touch the leaves and smell them (the post is coming up tomorrow!), or animate Social Studies lessons to make them fun and memorable are a few examples. I never noticed, before, these beautiful little things that surround us every day.
So here it is, our journey as autism family so far. I promise I won’t be so wordy from this point on (at least not most of the time!). And I hope you will join our journey and will find some inspiration for yourself and your family.
I will be releasing a blogpost every week surrounding some of my favorite subjects such as ~
✦ parenting style tips
✦ self-care as an autism mom
✦ recipes and healthy living
✦ travel tips for the family
✦ fashion, beauty, home decor, and holidays
I hope you will find this blog helpful and inspiring. Always leave your comments please, I want to hear your points of view, ideas, what you like and don’t. And follow me on Instagram, Twitter, Pinterest, and Facebook.
And remember, Twitter Chats are every Wednesday 11-12. Just click on the link to join the Chats.
Lots of love, xo.