Simply Nerdy Mom: Why Autism Parents See Things So Differently

Monday, February 9, 2015

Why Autism Parents See Things So Differently



Milestones are an exciting part of raising a child. We document, share, and cry happy tears over every first thing our child does. There are the obvious things like first steps and first words, of course, but no one knows the happiness of a "first" like an Autism parent.

As an Autism parent, our firsts don't always come so easily or on time. Sometimes, our firsts don't come at all. If and when they do, it becomes an occasion that only we can understand. 

Our daughter Lexus was a normally developing child. At 18 months she knew a few words and when asked an animal (almost any animal) she could make that animal's sounds. At some point though, and we aren't sure what happened, she just stopped. She stopped talking what little words she knew all together. It broke our hearts to see our happy baby become a completely different child all together. 



At age two, she was officially diagnosed as being on the Autism Spectrum. At this time, she should have met so many milestones and yet, we seemed to be stuck at just trying to get her to say something, anything at all. She made sounds when she wanted something, but she couldn't tell us she needed a drink or wanted a snack or anything else for that matter. It frustrated her that we didn't know what she wanted, as well us frustrating us. 

What really broke my heart was when she was around other children. They didn't know how to play or interact with her and she had no idea how to play or interact either so often times, she was left out at the playground or at parties and gatherings. Kids would ask why she was still wearing diapers way past the time when most kids were potty trained and parents would sneer at us and assume it was just lazy parenting. 

At home, it was just as heartbreaking. I would watch her sit on the floor with dolls and not know what to do with them. She had no idea how to pretend play. We bought her a play kitchen and while most kids her age would be pretending to cook, she would just stand there and stare at it or if she did play with it, it was just opening and closing the doors on it. That's it. She wouldn't look at books because she didn't know how. I know that almost seems ridiculous, but it's true. I would sit with her on my lap and try to read to her and show her the pictures, but she just stared off into space. 



She wouldn't look at you when you talked to her or acknowledge her name when it was called. She couldn't look in the mirror and realize that the person staring back was her. 

People in public were awful. We took her to Dollar Tree once to get a balloon as a reward for no outbursts while we were out shopping for the day. She was singing to me while I was holding her. No real words, it was her own language of course, but the cashier looked at us and asked us if she "ever shuts up". Then there was the time at a relative of my husband's wedding. I really fought my in laws about taking her because I thought she wouldn't be able to handle all the people and loud noises, but they insisted we bring her along so against my better judgment, we did. And we regretted it. She had an outburst at the wedding because she just could not sit through it and then she had quite a few at the reception which was accompanied by loud screaming. While at the drink table, my husband had overheard two women talking about how the parents of the screaming child should be slapped and that someone should also go over and slap the screaming child. It's probably best that my husband managed to defuse my temper after he came back to the table and told me what those two women had said. It's not her fault and it wasn't our fault either. We did our best to keep her from getting over stimulated, but it was out of our hands. And we couldn't just leave because we didn't bring our own vehicle. Naturally, it was times like this that I would cry and ask God why people are so mean as well as wonder why she couldn't just "be normal", but in asking that, I realized I was no better than those cruel people who didn't understand what it was like for her or for us. 


We did early intervention and a special pre school which we credit with her incredible progress. Of course, sometimes the things we tried did more harm than help. For instance, we enrolled her into a program through her therapists office which consisted of a therapist coming to our house once a month and basically teaching our daughter how to play. During each session, the therapist would video tape how Lexus was doing and progressing and then at the next session we would get a copy of the video from the month before so we could compare and see her progress. I still have one of the videos and its really hard to watch. The therapist is seen pushing her and pushing her to do something and she doesn't understand what the therapist is asking so she gets frustrated and has an outburst. She just wanted to play her way, but the therapist wanted her to play a different way. In the video you can see the signs of an impending meltdown. The pitch of her sounds get higher and higher and she starts stimming, which is a "quirk" of sorts that Autism children do to help them calm down when they get overwhelmed. You can just tell she was getting over stimulated and you can see me trying to defuse the situation by holding her tightly to try and calm her down as well as talking to her in a soothing, calm, and hushed voice, but the therapist was persistent. It got to the point where both my daughter and I ended up in tears by the time the therapist left. Needless to say, that didn't last long. We quit the program and never looked back. We felt it was doing more harm to her than anything. It was stressful enough doing everything we were already doing to help her, but this was the icing on the cake. 

The amazing part of all of this, is that our daughter has an impeccable IQ for her age. At age four and a half, her preschool wanted to give her an IQ test because they told us they were highly impressed with her reading level at that age. They told us at the next meeting that she had went through the entire test booklet without missing a question. Flabbergasted, they didn't know what to do because as they told us, no child they have ever tested has ever made it through the book without missing a question. Once a child misses a question, the test is over and they tally the score. Since Lexus had not missed a single question the entire book, they actually had to scramble to either find a more advanced book of questions or to make up some until she finally missed a question. That's when we were told that at age four and a half, she was reading at a third grade level. 




She is now 8 years old and not only has she been fully potty trained for a little more than a year, which we thought was a milestone we would never achieve, but she speaks in full sentences, plays pretend, reads, and has even transitioned from her Autism Support class, into "normal" classes. The children in her class are great. They adore her and when they see that she is starting to get upset or overwhelmed, they come to her and comfort her. The staff at the school also love her. She eats lunch in the office instead of the cafeteria because of the noise and the office ladies adore having her there every day. She even helps them buzz people in! 



We never thought we would get this far. She still has outbursts and she still has problems understanding certain tasks as well as how to handle her frustrations and emotions, but it's amazing to see how far she has come. 

Our two year old son is developing normally and as he gets older and hits those milestones that were delayed for our daughter, it's become apparent to us exactly how much we would have taken for granted if we would have had a "normally" developing child first. I hear him talk and have conversations with me and I'm overwhelmed with emotion. 



The other day, I sat and watched him play as he made his Ninja Turtles interact with one another and act out scenes with them. He even had a good dialog going on between his castle dragon and Donatello. It's the little things like this that hit me hard. I started to cry. I was hit with so much emotion watching his imagination bloom and take off, that I couldn't stop the tears. It reminded me of the very first time my daughter, after years of not talking, said "Mommy, I love you"

Maybe I'm just an emotional person, but as an Autism mom, I've learned never to take anything my child does or says for granted and I know that we see the world in a completely different way.

5 comments:

  1. Oh you have wonderful kids! I am so sad and mad about the situation at the wedding, more than the one at the store. People can be so judgmental and I bet those ladies didn't even have kids. Props to your hubby for keeping his cool because my "boricua" side would have gone on in full effect! English and spanish! Thank you for sharing something so personal with us. I can totally understand now why you started with the phrase: "but no one knows the happiness of a "first" like an Autism parent". <3

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  2. It is so rewarding to read the milestones you shared with us. I have friends who have children with autism and these milestone hits mean so much for them and their children. I am cracking up at her posing at the desk (I think it is a desk, I'm trying to type w/o my glasses on), she has full ANTM swag going on there!

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  3. Bless you heart! Both of your kids are just adorable and I can only imagine how the milestones would be different for both of them. One of my good friends has an autistic daughter and she has shared with me over the years how difficult, yet how rewarding life with her has been! I think you have a very healthy perspective on things and will raise two fantastic kids!

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  4. First of all, your little girl is beautiful. I can’t imagine how hard it is for you to watch your baby struggle, but you are so strong for sticking by her and being strong for her. Aww you made me tear up when you said that it was hard watching her with other kids. That would be heartbreaking. I hate thinking about about how the public treats kids with Autism. It makes me so angry that people can be so cruel. I really enjoyed reading your story. Thank you for sharing!

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  5. I've worked with children with autism and I'm impressed at how far your daughter has come. Those milestones must have been wonderful for you all. Your children are absolutely beautiful

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