“Often times as parents we worry about everything. We check every milestone, compare our children to their peers and even sometimes brag about their accomplishments. When something is off it can be troubling. Is it ‘normal’ for them to do that? Why aren’t their friends doing that? Then the looks from other parents begin.
Going through the autism evaluation process is grueling. It’s long, painful and feels endless. You hear things about your child that you never want to hear. Your heart rips into pieces because it’s your baby and all you hear is what is ‘wrong’ with them. You think this is the worst of it; but it’s not.
When my daughter, Chloe, was 2 years old I knew something was off with her. My husband had recently finished six rounds of chemotherapy for advanced stage cancer and I figured it was a difficult period of time for our family. She was unable to sit in a chair, listen to a story, had tantrums that seemed to last forever, wasn’t speaking in sentences and did not make eye contact. I put her in a two-year program at a local preschool and thought some socialization would help her catch up. I was wrong. From the get-go Chloe did not do well. She did not interact with her peers, follow instructions or participate. I had her evaluated through Early Intervention and she passed. She was only 2 and some behaviors were age appropriate. I kept her in preschool and even enrolled her for the following year. Then the problems began.
My husband’s cancer had returned, and I was pregnant with our younger daughter. A month into the school year the teacher informed me Chloe was still not doing well. I had just given birth and my husband was finishing chemo again. I wanted to give Chloe more time, so the teacher and I agreed to revisit this after the holidays. I was confiding everything in my friends, my best friend in particular. She would often ask me how things were, mainly with Chloe and I figured she was being supportive. After the holidays passed Chloe’s behavior deteriorated. She would yell but was never violent. I contacted the school district and set up more evaluations and eventually went to a developmental pediatrician and received a lengthy diagnosis.
When we took her to the Developmental Pediatrician she was diagnosed with Autism Spectrum Disorder level 2 with accompanying language impairment, ADHD, Sensory Integration Dysfunction, and Developmental Coordination disorder. It was a major shock that she had all of these things diagnosed and became clear she would need occupational therapy and speech language therapy. Having so many problems with the people surrounding us made this all too painful and hard to accept
My husband and I received a phone call in April from the teacher. Parents were complaining about our daughter. It was clear it was just one…maybe two parents. ‘Friends of [mine] who know [my] family and situation’. It was clear it was those whom I was confiding in. My best friend. She demanded Chloe be removed and sent to an alternative school with ‘those kids’. She and another cited situations that were outside of school and used things I said in confidence as leverage to get my child removed because she was a ‘distraction and a disturbance’. Despite the objection to Chloe being them in the class she was able to finish the year with her friends.
How can we teach our children to be accepting of all if adults can’t do so? Why are we preaching kindness to all if we behave in such a cruel way? Parenting a child with a disability can be emotionally and physically draining. It can break your heart and already makes you feel like an outsider. Hearing that your child is not wanted or accepted is beyond painful. As parents all we want is for our children to be accepted. To have not kids but other adults, friends, not accept your child is gut wrenching. How can we expect any different of our children if we can’t be an example ourselves? My autistic daughter, now five, is not a ‘distraction’ or ‘disturbance’ to your child. In life we have to deal with things and people that may not be pleasant. After all my family had to deal with this. It’s a part of life. If a friend is experiencing difficulty or you don’t understand what is happening, it’s not disturbance. It’s an opportunity to teach your child to be empathetic, to be kind. Be all of the things to someone that you hope someday, someone does for your child.
The upside is that our children are amazing. They are just as smart, funny and loving as any other child. They work harder to accomplish things than others. When they do accomplish those things that may seem mundane to some it is exhilarating to us. I have a lot to be thankful for and I wouldn’t trade my daughter for anyone in the world. Through this all I have found comfort in a lot of great friends. Friends who advocate for my daughter as if she is their own. Friends who stand behind their word and defend those that can’t defend themselves. Friends who are raising amazing children who will grow up to be amazing friends to mine. A good friend once told me that my daughter picked me to be her mother. To advocate for her, to love and protect her because I had the strength to do it. I firmly believe her. Regardless of the hurt, sleepless nights and daunting days I do have the strength because my love for her is so strong. Raising a child with autism is hard but it becomes easier when you have great people surrounding you. Your child is not defined by this diagnosis and neither are you. Don’t be afraid to say goodbye to those who don’t accept you or your child. You may find that you already have exactly who you need to weather this storm, and trust me, you will.”
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