I have my regular blog. But I decided to have a separate one, solely focusing on my sons autism journey. It’s a sort of new adventure. If that makes sense.He was diagnosed with autism yesterday morning. The diagnosis is brand new, just the beginning. But if you know our son and family, this story is not really new. I’ll sum it up as best as I can.
Every single journey is not the same, they are kind of like a finger print. From far away it looks the same but if you look up close you can see how wide the spectrum is.This is Emmett’s story.
Emmett was about a year old when I started noticing things were a little different. Textures were the first thing. You would think it would be language, but I just assumed he’d be a late talker as he did babble a lot. If he didn’t like the feel of something he had a meltdown in his high chair. It wasn’t the taste, he would just feel it with a finger or two and be really upset. And it wasn’t just an “ew” face. It was almost painful for him. And if anyone knows me, this made me so upset. I chose my battle and stuck with the textures he was comfortable with at the time. I wasn’t really researching yet, because trust me , I became a big researcher still to this day about sensory issues now that I am more aware.
At fourteen months we went to his pediatrician appointment, he asked about his language, and there was nothing yet. He sent a referral to a speech therapist and one for a hearing test. Em had the hearing test, he passed. I knew he would because he reacted to noise quite often. This was another new thing. Loud pitches started to make him upset, like he’s want to escape. He started speech therapy. After several sessions she sent a referral to a program called All Kids, it has a different name now. But that was what it was called then. And she didn’t explain much. I didn’t really know anything until we had our first meeting with the head of it. An early interventionist, which at the time I had no clue what that was, came to our home once a week to help our child with anything he may need to work on. I remember looking at their pamphlet and it said “special needs”, and that feeling of not knowing why Emmett would be considered that. You have to understand, first baby, still learning, and I think at the beginning of these things you wonder so much. I didn’t consider it a negative term, but I was curious as to why the speech therapist thought he was.
As we kept getting closer to two years old, Emmett said about two words. “Mum” and “Up”. His communication was getting harder, he was struggling. I fill up writing this, because this was such a hard time. About a month before we started All Kids visits, Em was having a lot of meltdowns, not tantrums, meltdowns, there is a difference to me. He couldn’t tell us what he needed or wanted.Could you imagine that feeling? That desperation of needing or wanting something and having no way to communicate it. I remember than, the feeling came over of why he needed an early interventionist and this program. I couldn’t bear to see him struggle anymore. And I had no idea what to do. Jason and I would sit and talk for hours and try and figure out stuff and we felt hopeless, especially on the bad days. Em wasn’t pointing , so he couldn’t even show us the direction of where the thing he wanted was. You have no idea until you’ve been there, how much you want your little toddler to point.
Finally, the at home visits began. Gen was her name. And she opened up a whole new world of knowledge for me and therapy ideas for Emmett. And most importantly, Emmett genuinely liked her and eventually was excited every time he saw her walk in the door. This means a lot. Especially when someone is coming in to your child’s environment. It is such a sacred place.A safe place. We were only lucky enough to have her for seven months, and we had to get a new worker. But she is one of the good ones. And we remained friends. I continue to say she was meant to break the wall down for the beginning of Em’s journey. She handed us the tools. I will be forever grateful. And if I had a choice and chance, I would have hired her permanently myself to work with Emmett forever. This was my first emotional “breakdown” if you will. Her last day I cried for an hour afterwards. Because I had felt so lost before she came. She guided us and helped us. And the feeling of someone new was scary. We did end up with other nice workers. But I can’t help but say she will always be in that spotlight of our hearts in this area. She was the first touchstone of this world.
Within this time Em’s speech therapist told me she was going to send a referral for Emmett to have an autism assessment. Now, it may seem I am calm and cool today. I didn’t even cry when he was diagnosed. But I feel like my cry and fear and the overwhelming feeling of a diagnosis was back then during this time. It doesn’t mean my fears don’t come up, or I don’t get overwhelmed presently. But this diagnosis was a bit of a relief, because it opens doors for Emmett and to help make his world even better. You could not have told me that when she sent the referral for the assessment. I cried for two days people. Two days of ugly cry. This all did happen. I went through the time of denial. Things began to change though over the next few months. Within the two years the referral was sent and when he had his assessment. I opened my eyes, I opened them in to making the best life for my son no matter what. I cut out pictures of his bottle and food he liked and stuck them on the fridge, and he picked up right away what they were for. We jumped and applauded every single accomplishment he made. He ended up learning PECS and still has things to work on, but can now say “bottle” and “cookie” and not even grab the PEC for them. There is a lot to say. But in short. He had lots of progress. But we knew there was a possibility he had autism. I read Temple Grandin’s books, and every other book I could find that made things clearer. I read a lot of blogs too. Youtube videos, you name it. This is when my researcher hat was put on in high gear.
So we arrived at the day of finding out our answer. Amazing doctor. Couldn’t be better at his job. And as we sat there waiting until he came back. I remember Jason and I looking at one another with the same mutual feeling. But it’s like we were okay. I thought I would break and all these things crossed my mind. But we were okay. If you see Emmett, he is just so happy. His world is beautiful. And if this answer was autism, it only gave us more resources to help him in that world. And that was the focus. And is the continued focus.
It’s only been twenty four hours and I sit here tonight with Emmett, he keeps coming over for a hug, he loves to be squeezed. And all I can think about is how special he is. How that if we stay positive and go along with him, he will notice. Children notice. If you are there for support, they know it. The doctor even said yesterday how much he could see the love Emmett has for Jason and I, and the love we have for him, and at the end of the day, this is what matters. I have always believed you embrace your child, why wouldn’t you? God has created us all, and we are his masterpiece, every last one of us, and we all shine our individual light in to the world. Let your child’s light shine. If someone thinks it’s too bright, than they can choose to live in the dark. They do not realize the beauty they are missing. Our three year old is the most beautiful little soul we ever did see. And we are so lucky to be his parents.
I chose to name this blog Jump With Both Feet because I feel like it describes how we have dealt with this adventure. We have jumped in, both feet, entirely. And we will continue to do it. I hope you come back and read this blog from time to time. I am just going to share this adventure. Share Emmett’s story as it continues. His world is a pretty spectacular place to visit.