Autistic Child: "Mommy, I hate my brain, I just need a new brain"
Being the mother of a child with autism, I describe my experiences with noticing and denying my child had autism, difficulties with communication, getting services, and how the family coped and improved our lives.
I knew something was wrong even before she was a year old. She had many of the warning signs of autism. But I was in denial. I did not want to admit that my child may have autism. I think I thought that if I denied it long enough, it would go away. Even so, I did realize she needed to be tested for a disability, so at age two I took her in. The fact that she could not communicate made it impossible for testing to occur. For reasons I do not understand, we were told they denied her placement in the county preschool for children with disabilities. So, a few weeks later when she turned three, I had them try again. This time, she qualifed.
At this point, she still was not diagnosed with autsim and I was content that she was getting services. But the word autism rang through me each time she would have a meltdown because she could not communicate with us. She would cry and throw things, such as Christmas tree decorations. One year, she destroyed a large part of the tree ornaments. As I watched other children in her class who were autistic, I think it slowly crept into my mind that my daughter needed more help. I began to accept that autism was not necessarily a bad thing. The day she bolted in front of a large bus in the road, I knew I had to get her some help. She was diagnosed with high functioning autism soon after.
She did not begin to talk until she was four, a common sign of autism. The school had been teaching the children how to use sign language and this was the major starting point for her. We wanted to learn sign language of course so we could work with her at home, but no classes were offered for the parents. We found this to be the case with many struggles that she had. No insurance also meant that fewer services would be available to our daughter. Many of the ways we adapted was through reading books, talking with friends who had disabled children, and sometimes begging for help from the public school system. One psychologist spent his own time to teach us some skills to use with the many different behavioral issues that come up with autism. I will forever be thankful for that man who offered his help without compensation.
We still struggle, and we have to fight to get what we need. The wonderful schools that are available for children with autism cost money that we do not have. We do not get counseling or training because we do not have the money, and when classes are held for parents with children with autism, we often cannot attend because we are working during those hours and variable times for the courses are not offered.
Many of the struggles we went through when she was younger are now gone, but with changes in age come more struggles. She often has severe meltdowns, sometimes to the point of being violent. Finding a doctor to help manage these autistic behaviors was like pulling teeth. But when we finally found one, I felt like crying because I knew we could help our daughter and help the family as well. A small dose of medication began to help her impulsiveness and with the scaled down meltdowns, we could then work with her. Each family member takes a part when she is melting down. The younger ones know to leave her alone and the older ones know that sometimes their presence actually gives her a sense of comfort.
One day I asked her what made her so sad to cause a meltdown. She hit her head with her fist and said, “I hate my brain. I just need a new brain.” With tears streaming down my cheeks, I held her in my arms and stroked her hair. We are so thankful for this little girl in our lives. We may hate autism at times but she brings such joy to us that we never would have known without the autism. Sure, we want to give her a new brain and cure the autism so she could be normal, but would we have those same blessings in our lives if we changed her? Would we have grown and developed like we did if we changed her?
Note: The picture is the child mentioned in the story