Mothering Autism

by Guest blogger on November 10, 2009

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When our oldest, Emily, was just shy of 3, we learned that she had Autism. It was such a stressful time in our little family’s life. Our baby, Alex was almost a year old and was crying all of the time for unknown reasons to us then and my husband’s job was rocky and unpredictable, therefore, so was our income. I just remember feeling like our world was falling apart. For days after the diagnosis, I mourned. I cried randomly, usually during one of Emily’s many meltdowns of the day.

EmilyAlexKissI had many afternoons on the floor holding Alex, laying next to Emily and all three of us sobbing in unison. They were crying because they couldn’t communicate and were in pain and I was crying because I thought I lost my daughter. Days later, I saw a glimpse of her, I saw a fighter. I saw who she really was, peaking through that Autism armor she was wearing. She wasn’t giving up and neither could I. Instead of “Why me? Why Emily? Why us?” my thoughts quickly became, “Autism? BRING IT.”

Previously, doctors all pointed their fingers at me. I wasn’t letting her grow up; I coddled her and treated her like a baby. She was 2 and shouldn’t be sleeping in bed with us. I was criticized for not sticking her in a crib and letting her cry herself to sleep. I was criticized for holding her all the time and even for not yet putting her in a preschool program. It was my fault; I was causing her to act this way. I gave her the behavior issues and caused her to not talk because I refused to withhold things until she “used her words”.

I put her in a bubble, admittedly. I didn’t want anyone to talk to her, for fear that they would notice that she wasn’t babbling and start asking what was wrong with her, or give me the pity comments like “She will talk when she talks”, or, “my Uncle’s, son’s friend didn’t talk until he was 4!” I didn’t take her to story time or the playground, for fear of starting a meltdown. I kept her purposefully away from people, especially children, since she seemed to be scared of them. For that, the doctors pounced on me and ripped me to shreds. I created it.

Once we knew what we were dealing with, we jumped at any chance to talk to others who were experts in Autism or had a child with Autism. If I thought my parenting style was under attack BEFORE the diagnosis, I found that it was nothing compared to after receiving the diagnosis. I was told that her best bet would be to put her in full time school, to schedule every minute of every day, to put her in her own bed, to make her sit and eat at the table, to ignore her if she cries; the list went on.

EmilySwim

The most devastating thing that I was told was that I needed to be away from her during the day. I needed to let go and that my attachment style of parenting was only making things worse, as if my mothering was creating this monster inside my beautiful daughter. I refused to believe it. There had to be a way to mother her the way that we both loved and still help her achieve a higher functional level.

I wasn’t terrified of Autism until I started hearing what therapy was going to entail. ABA behavior therapy has been proven to teach our special kids how to cope in every day life, to give them life skills so that they can be functioning adults and contributing members of society. It will give them their independence and give us as their parents, peace of mind, knowing that they will be ok after we pass. It is essential in order to give them a life.

The therapy was described to me as being rigid, unforgiving and harsh. The sessions would be full of flash cards and tantrums so I better be prepared for that. I was afraid but willing to try it and put my daughter in the hands of the experts hoping that it would help her learn to function in our world and not just stay in hers.

EmilyRunningAfter a very traumatic therapy session, I broke. The ABA therapists, who were strangers to her, locked Emily in a therapy room for an hour and a half, taking away toys without warning and making her do flash cards. They did what they intended; they caused a tantrum, the worst I had ever seen. She was screaming, falling to the floor, throwing toys and at one point, even picked up the kid table and chairs and threw them across the room. She was crying out for me, her “ma!” and when I didn’t come rescue her, she started calling out for her baby brother.

She was in the therapy room and they put me in the next room behind a two-way mirror with full audio. I was able to see and hear everything that was happening and against my instincts, I let it go on longer then it should have. They wouldn’t let her out or me in as one therapist was in front of the door blocking Emily and the other therapist blocking me on the other side. They kept telling me that it was important to “see her tantrum all the way through” and that she needs to learn that she will not get what she wants if she cries. They treated her like a wild, caged animal, broken and beaten down and I let it happen.

It caused a regression in her that lasted for months. She started slurring her words, spitting and hitting again and she started randomly shivering and crying. She was lining up her toys again; her arm flapping and spinning were present constantly. She was having nightmares and refusing to eat; it was devastating. She was a mess and so was I. The amount of guilt I felt was unbearable. I let her down and thought that she had stopped trusting me.

I finally said enough and took control of her therapy and her progress. I refused to leave her in a room with a therapist and gave strict instructions on how they were to treat her. After months of trying to find a new ABA therapist, we found one and felt it was a great fit. I was upfront about the way that we do things and she embraced it and has since showed me quite a few things along the way. She teaches me just as much as she teaches Emily and has become an essential part of our lives. She tells me that we do a Hippie style of ABA. I like that.

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Alex is now almost two and after the first round of assessments has been determined to have Developmental Delays. His appointments to test for Autism are in January. I don’t need tests to know that he is Autistic, once you live with Autism every day, you just know. The diagnosis will help me get the other services that will help him. The best part about this time around is that I know what to expect, I know what to do and what not to do. I know how to mother him without a doubt in my mind of what is going to be best for him.

Autism? BRING IT.

*Note – I have since learned that the traumatic ABA therapy session was not typical. Our experience was not what ABA is about. If you have a child with Autism, please do not discount this therapy based on our experience. ABA is not for everyone, but know that it can be tweaked to fit your family’s needs. The therapist makes all the difference.

Camille is the mother of two special needs children, Emily who is 3 and Alex who is 1. Her passions are Attachment Parenting, Autism research, including biomedical treatments and just being Mom!

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