04/02/2022
April is Autism Awareness Month, but it's everyday for us. We keep our blue lights lit up everyday.
This is our son Sean. He was diagnosed when he was 3 years old, he is now 16. We noticed things before then such as limited interest in various things, limited eye contact, then he regressed on his already limited vocabulary. The few words he had learned he suddenly stopped using. He didn't "explore" like atypical children, during floor time he'd basically sit and seemed disinterested in toys or crawling around.
As he got a little older then he got into his running phase. It was scary because he would just take off running. Mix that with his lack of fear and it became very scary for us. On playgrounds Kim would be on one side of the playground while I was on the other and our eyes would never leave Sean. Just anticipating when he'd run. Lol.
Then came his screaming phase. At any given time he would let a blood curdling scream. We were always looking for triggers so we could try and prevent them. At this time he was considered non-verbal so we figured out that he was frustrated because he couldn't communicate with us so then we'd have the meltdowns. Needless to say there was a lot of frustration on our parts too because it's hard seeing your child not be able to communicate feelings, ideas, thoughts, etc...
We learned basic sign language and that helped for a while. Then came the PECS, picture exchange system. He could speak with pictures. Some of his great teachers we met along this journey helped so much. They printed out different pictures we asked for and then we took pictures of different stores, parks, restaurants. Kim made a picture board where Sean could go get a picture and bring it to us to express his wants or needs. We also would have him use words to describe what the picture was to hopefully get basic speech back again.
Then we graduated to a sound board where he would push a button and it would say the word. Again we had him repeat the words. Then came the iPad and software from the school district for speaking. Eventually his speech came back, still limited, but now he can speak to us. He still has meltdowns, but more limited now. He has learned a lot from the iPad and he carries it everywhere.😊
He loves animals and drawing. He is very affectionate, but he'll let you know when he's had enough. Lol. Sean uses words now, for the most part. Limited vocabulary and we can't really have a conversation, but he is able to express his needs. Sean has a great sense of humor and tends to make more eye contact now. He loves to help, but will also let you know when he's done. He usually just stops and walks away. 🤣.
We have definitely met some great people along the way. He's had some amazing teachers in Wisconsin (teachers aide and great friend still), and here in Illinois along with some great speech therapists, occupational therapists, psychologists. I hope I didn't miss anyone. You can tell these people are doing what they do because it's in their hearts. We appreciate them.
There are obviously a lot more details throughout these last 13 years. It's been a rollercoaster ride for sure, a lot of things learned. We wouldn't have it any other way, Sean is a great kid. Everyone who comes into contact with Sean falls in love with him. We've never considered Autism a disability and we've never treated Sean different because of Autism. We've never made Autism an excuse for Sean either. We've gotten dirty looks and stupid comments from immature people in the world during a meltdown or when he makes his noises in public, but we've never announced that he has Autism as an excuse. We've let people know in other ways that they need to mind their own business.
Activities are limited and we usually hold any events at our house. The main reason for this is because Sean feels most secure and comfortable at home. Early on it was hard to go anywhere because the meltdowns were a lot more frequent and would draw a lot of attention. Even things Sean wants to do, our time is limited because when Sean is done he expects everyone to be done. 😊 We don't give into him, he still needs to learn patience and learn that other people are involved as well. Will he ever fully learn that? Possibly not, but we are his parents and won't give up teaching him and nurturing him.
Autism is not a disability, but a different ability. They learn different and they learn what matters to them. They don't have time for the typical games in life, they are direct and let you know if they are interested or not. The milestones in your children's lives are always an awesome experience and makes you smile, but the milestones with someone on the Spectrum are truly amazing and life changing!!!!
