Our family's journey with autism. An honest view into living with severe autism, the heartache ,the joy and everything in between. Join us on this adventure of autism, love, and chaos .
I’d like to say Alyssa has always been Daddy’s little girl , but that wasn’t always the case .
It is the most horrible feeling to see your child in pain and not be able to help her . It makes you feel absolutely helpless . It was even worse for her Dad , as a father you want to be able to protect your daughter.
There was a time at the peak of her sensory issues that Alyssa would scream for hours . It was heart wrenching to watch .Only me or her Nana could go near her. If her father tried to go near her she would escalate and scream louder . Her own father could not touch her . There was nothing we could do to help her . Eventually she would calm down and go back to herself, these screaming episodes would last 2-3 hours .
This was her hardest phase and believe there have been a lot of them . We didn’t know what to do for her or why this was happening . We didn’t even know she had autism , or what that meant , for our family or our little girl .
Today she feels safest with her Daddy which how it supposed to be ! They have an amazing bond .
Alyssa began early intervention at 22 months . This was just 5 months prior to her diagnosis .
Most of the time she was only in a diaper if even that. Her sensory system was out of control .
We were about to enter a world that we had no idea about ; no idea how to navigate , or the difficult road that lay ahead . There was very little awareness then and it seemed almost no girls with autism .
I was still living in the bubble of thinking that she has some sort of speech delay and sensory intergration , now know as sensory processing disorder , which explained many of her tantrums and avoidance behaviors .
I had no clue to the world we were being thrown into . No idea about the heart break and the devastation that was about to come , the life long struggles she was going to face . Here I thought she was going to learn to talk and get some therapies and everything would be just fine .
Never in a million years did I look at her face and imagine the severity of the situation. With an autism diagnosis you get this period of time that you are in the dark … You have no idea what’s coming and I’m not sure if that’s a positive or a negative . It allows you to have hopes and dreams for your child to then have them ripped away and crushed .
At the same time you have this bubble where things are seemingly typical and you get to have the feeling of normalcy .
When I look at these pictures that seem like a life time ago , I know these were the beginning of the most difficult times . There were some very dark days coming some had probably already started , but when I look at these pictures I see my beautiful little girl . She was so funny and cute ! She loved her brother so much ! ( when she wasn’t attacking him, poor kid ~ but he adored her too )
I don’t see the pain , the frustration and the confusion that I know over took many of these days . I can’t help but to wonder if there was more awareness then if things would of been different . Either way underneath it all she was our little girl full of mischief , stubborn as could be , and beautiful . We loved with all our heart and of course still do.
Many times I have just randomly asked Alyssa something I know full well she doesn’t know . Why I do this? I have no idea . It’s never intentional .
I strongly believe in expectations . Alyssa needs to have someone expect more out of her . Even If it beyond what she knows or where she is . For example ; if I don’t expect her to talk she won’t , or if I don’t expect her to understand or be able to complete a task , she won’t . Although in reality She has suprised me many times .
One night about 6 months ago me and Lexi ( my youngest daughter 13 at the time ) were sitting at the Kitchen table writing our names on a piece of paper . Alyssa kept coming over and seemed curious to what we were doing .
I had her come sit and write her name which I knew she could do and then her last name which she did . Then I randomly said can you write sun . I l knew she can copy it if you wrote it first and sun was a word she always would copy . But never on her own , well she wrote sun and about 10 other words I asked her too . Me and Lexi stared at each other in disbelief . Like what !!?Now some words were spelt wrong , but you could tell what that were .
She was actually able to write the whole alphabet . Then I decided to turn the paper over and write a word just to see what she would do . I mean there is no way she would know A: she can’t talk , B : she needs pictures or some kind of visual symbols to under stand . So I write a word she knew it , so I write another she knew it , then another I almost fell out of my chair could not believe it .
Since she has been at the new program and they don’t work on stuff like this .. She has lost some of this skill , I tried to have her write some words and she couldn’t really do it . She could only do a couple and not spelled right . But , I wrote some words down and she knew what they were .
A couple of nights later I did it again and added a few more and she knew ( most ) not all of them . Now it’s hard because she doesn’t talk and her speech is unclear so I tried some words that she could at least attempt to say .
She likes animals so I started with some simple ones . She is funny though because if she can’t say it she will tell me the sound the animal makes. She has a lot of difficulty with certain sounds the C sound especially so when I write cow she will say moo . I think it’s good though because she is finding another way to tell me what It is .
That is all I want , for her to be able to communicate in some way . This shows some potential for communication in her future . Could she learn to write or read ? This opens up a whole new avenue of communication for her . The person they said would never talk , never understand without visuals , is so severely delayed that she just can’t function past her sensory and cognitive delays .
Always believe ! Believe in your child , believe in your instinct , expect the unexpected .
