In one word, I describe life with an autistic toddler “unpredictable”. I’m sure that word can be used to describe life with a neuro-typical toddler as well, but the difference is that NOTHING can be expected. From one minute to the next things can change in a heartbeat.
As I said before, every child with autism is different. No two children are the same or have the same set of symptoms.
One of the big things my daughter does is something that is common in most autistic children. She toe walks, flaps her arms, flicks her fingers and spins. These odd, repetitive movements are referred to as “Stimming”. I noticed that with Bella, she stims, almost as a way to show her emotions.
Bella has serious issues with self expression. She is unable to express her emotions and can not read or sense emotion in others. An angry voice to her sounds the same as a happy one. So when she gets a surprise visit from my mother, instead of jumping around and smiling like her older sister, she’ll spin in circles and look out the corner of her eye. When something is bothering her, instead of pouting or frowning, she will cover her ears and rock back and forth. When she wants something and we can’t quite figure out what it is, she flap her arms in frustration. Careful observation has allowed us to identify which stims she uses to express which emotion. We don’t get it right every time, since it’s not a fool proof system, but it helps us to avoid meltdowns or putting her into situations where she doesn’t feel comfortable.
While we thought, at first, that these gestures were odd, or quirky, we realize now that it’s just her way of making herself feel better. Before I knew what it was, I would try to get her to stop. I worried that her spinning would make her dizzy or her toe walking would make her fall and hurt herself. It does neither of those things. So instead of stopping her from spinning in circles, we join her. It makes her smile and she doesn’t spin as long. Although none of us can last nearly as long as she can.
It does get hard to deal with sometimes, but I realize that it’s other people that make it hard. At home, she can stim all she wants too and it doesn’t bother anyone. In public it’s a different story.
Once at the grocery store, Bella was having a hard time with the loud crowd. An older woman looked over and all she could see was me, standing there with my hands over Bella’s ears, while Bella was crying and trying to rock back and forth. The look the woman gave me was that of total judgment and disapproval. It hurt at first but the more I thought about it, the more angry it made me. This woman knew nothing of what I was doing or going through. She didn’t know my daughter or her condition. I was covering my daughters ears because the sound of the crowd and the overhead PA system was incredibly overwhelming to her. It comforted her to have my hands there. She continued to try to rock, but while she did that, she would bump her head on the front cart handle. I can understand why the woman thought she saw a mean mommy pinning down her child. The first few months were difficult, but now, I’m an advocate for my kid. Strangers who don’t know her can think whatever they want. If anyone wanted to take the time to ask me what was going on, I’d gladly explain it to them. No one ever does though.
All of this has taught me that, even though it’s a long process, things can and do get better. Slowly. It really depends on how long it takes to accept that things aren’t going to be the way they were. You also have to develop a pretty thick skin in order to deal with the reactions of others. Family and friends can be your closest support. Surround yourself with people that you love and trust and it will be easier to handle.
I read a quote that I really relate too and I wanted to share it with you all. It reminds me that it’s okay that your child doesn’t quite fit the mold. Trying to force them will only do more damage.
“Autistics are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It's that you're destroying the peg.”
― Paul Collins
Tuesday, January 31, 2012
Why Blog?
I’ve decided to start this blog to chronical our everyday life living with Autism. I know that I’m not the first, and I surely won’t be the last, but the way I see it, the more information out there, the better. This blog will be my way of keeping track of Bella’s progress as she begins the long journey ahead. She will be starting speech classes soon. This will give me a place to get all my thoughts out. To brag when she reaches a goal and to cry when we’ve had a bad day.
I want to share our story. Not only to try to help others but to simply give others a view of what life is like. Granted, this blog won’t be Autism, all the time. I’m sure that other things will slip in every now and then.
Every case of autism is different. No two children will show the same signs or act the same way. My daughter, Isabella, is on the higher end of the spectrum. She’s happy, and very loving and affectionate. I found out that we’re quite lucky since a lot of children with autism have issues with being touched or held and some go their entire lives without ever hugging their parents.
I began to notice the “signs” when Bella was about 15 months old. She wasn’t talking yet. In fact, she wasn’t making any kind of sounds at all. She would squeal. She reached all her milestones on time and was walking by a year. She would try desperately to walk on her toes, even if that made her lose her balance and fall. She would flap her arms and flick her fingers and her favorite thing to do was spin. She could spin in circles for twenty minutes straight and never get dizzy. She would pace our house for hours. Walking back and forth, always taking the same route. The biggest issue was that she would not respond to her name.
After ruling out hearing loss and getting her adenoids and tonsils removed, she still acted as if she couldn’t hear us, no matter how loudly we called her name. On the other hand, the alarm clock, the doorbell and even the timer on our stove would cause her to cover her ears and flinch. As if the sounds were so loud, they were hurting her ears, she would cringe and seek out either her father or myself for comfort.
Only 30% of all autistic children seek affection from others. We are very lucky to see that Bella is in that percent. While most autistic toddlers veer away from physical contact and dislike being hugged or held, Bella seeks it out as a way to comfort herself. When she is feeling too overwhelmed or something is too much for her to handle, she comes to us for safety. The thought that some mothers and fathers never get to hold their children breaks my heart. For her affection, I am grateful.
Although an official diagnoses is months away, our preliminary result is high functioning non-verbal autism with sensory integration disfunction. We are hoping that her classes and teachers can help with the non-verbal part. As far as everything else, we take it day by day. No two days are the same and we never really know what to expect.
Before all of this, she was a happy, loving toddler who loved to look at picture books and fall asleep on her daddy’s chest. Now, she’s the same little girl, only she has autism. All those little “quirks” we didn’t understand now have an explanation. There is some comfort in that.
I am not going to say that this has been an easy thing to handle or deal with. When all of this was just my speculation it was easier to put in the back of my head and ignore. After we got her first evaluation and they confirmed our suspicions, I cried. I cried for her. For all the things I know she’s going to miss out on. For knowing that now, her life is going to be harder. She’s might not understand that she’s different, but I know that part of her will see it when she notices that she doesn’t see things the way the rest of us do. I cried because I couldn’t help but think that I did something to cause this. I’ve been reassured by my husband and all her doctors, but as her mother, I feel like there should have been something I could have done. I know there wasn’t, but it took me a while to accept that.
I’m off to attempt sleep now. Bella has orientation in the morning to tour her school and meet her teachers. Fingers crossed that it goes well.
I want to share our story. Not only to try to help others but to simply give others a view of what life is like. Granted, this blog won’t be Autism, all the time. I’m sure that other things will slip in every now and then.
Every case of autism is different. No two children will show the same signs or act the same way. My daughter, Isabella, is on the higher end of the spectrum. She’s happy, and very loving and affectionate. I found out that we’re quite lucky since a lot of children with autism have issues with being touched or held and some go their entire lives without ever hugging their parents.
I began to notice the “signs” when Bella was about 15 months old. She wasn’t talking yet. In fact, she wasn’t making any kind of sounds at all. She would squeal. She reached all her milestones on time and was walking by a year. She would try desperately to walk on her toes, even if that made her lose her balance and fall. She would flap her arms and flick her fingers and her favorite thing to do was spin. She could spin in circles for twenty minutes straight and never get dizzy. She would pace our house for hours. Walking back and forth, always taking the same route. The biggest issue was that she would not respond to her name.
After ruling out hearing loss and getting her adenoids and tonsils removed, she still acted as if she couldn’t hear us, no matter how loudly we called her name. On the other hand, the alarm clock, the doorbell and even the timer on our stove would cause her to cover her ears and flinch. As if the sounds were so loud, they were hurting her ears, she would cringe and seek out either her father or myself for comfort.
Only 30% of all autistic children seek affection from others. We are very lucky to see that Bella is in that percent. While most autistic toddlers veer away from physical contact and dislike being hugged or held, Bella seeks it out as a way to comfort herself. When she is feeling too overwhelmed or something is too much for her to handle, she comes to us for safety. The thought that some mothers and fathers never get to hold their children breaks my heart. For her affection, I am grateful.
Although an official diagnoses is months away, our preliminary result is high functioning non-verbal autism with sensory integration disfunction. We are hoping that her classes and teachers can help with the non-verbal part. As far as everything else, we take it day by day. No two days are the same and we never really know what to expect.
Before all of this, she was a happy, loving toddler who loved to look at picture books and fall asleep on her daddy’s chest. Now, she’s the same little girl, only she has autism. All those little “quirks” we didn’t understand now have an explanation. There is some comfort in that.
I am not going to say that this has been an easy thing to handle or deal with. When all of this was just my speculation it was easier to put in the back of my head and ignore. After we got her first evaluation and they confirmed our suspicions, I cried. I cried for her. For all the things I know she’s going to miss out on. For knowing that now, her life is going to be harder. She’s might not understand that she’s different, but I know that part of her will see it when she notices that she doesn’t see things the way the rest of us do. I cried because I couldn’t help but think that I did something to cause this. I’ve been reassured by my husband and all her doctors, but as her mother, I feel like there should have been something I could have done. I know there wasn’t, but it took me a while to accept that.
I’m off to attempt sleep now. Bella has orientation in the morning to tour her school and meet her teachers. Fingers crossed that it goes well.
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