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 .