Monday, January 19, 2009

"Because I Have Autism"

Becca has been aware for quite some time that she has autism. How well she understands what it is, I don't know for sure. Last spring, she became aware of what it means in terms of being discriminated against. She doesn't understand bigotry, but she knows her autism resulted in her being excluded.

When Becca was still attending school in our district and was beginning second grade, her TSS decided to start a lunch buddy program. She would have Becca choose a friend and they would have lunch in a quiet room in the school, away from the noise and constant activity of the cafeteria. She had the full approval of Becca's teacher and the school principal, and the parents of the children also had to give their permission. There was one little girl in particular that Becca frequently asked to join her for lunch. I won't use her real name, I'll call her Cathleen. Initially Cathleen's mother gave her approval for Cathleen to participate twice a week. At some point, though, she changed her mind and decided she only wanted Cathleen to have lunch with Becca once a week. She made sure there was no chance of the girls having lunch together more frequently by sending Cathleen to school with a peanut butter sandwich, being fully aware that Becca has a severe peanut allergy. Still, there were a few other girls that would have lunch with Becca, and every day she and Cathleen would play together at recess. Each referred to the other as her best friend. The teacher also assigned Cathleen as Becca's "homework buddy" in the classroom. She was to remind Becca to write down her homework assignment and put her books in hr backpack. However, her mother suddenly decided that this was too much of a "burden" for her. Becca went in to school one morning to find her seat was changed. Cathleen was paired with another child. The teacher seemed unaware that Becca actually had feelings and didn't bother to explain the change to her.

Cathleen came over for a play date, and I spoke at length with her mother. Cathleen also attended Becca's Christmas party, and her mother was present the entire time, which gave her plenty of opportunity to see how well the girls played together. We talked a few times about scheduling more play dates. We finally came up with a date and time. Cathleen's mother had somewhere to go that morning but said she would call me as soon as she got back and then I would bring Becca over. This would be the first time Becca would be going to someone else's house without me present. It took a lot of work to prepare Becca for something like this. I think most parents with children on the spectrum can understand this. I had a social story prepared for Becca, and we read it together repeatedly. We waited and waited for Cathleen's mother to call. The afternoon passed by, and Becca was just heartbroken. I finally took her to the playground. There was no phone call, no explanation. I just didn't know what to tell Becca.

I accompanied Becca's class on a field trip, and Cathleen spoke to me about what a good friend Becca was to her. It was gratifying to hear another child describe Becca's positive qualities. Although Cathleen was protective and helpful toward Becca, it was clear that she truly enjoyed the friendship and didn't just befriend Becca out of sympathy.

Becca knew exactly when Cathleen's birthday was, and Cathleen must have mentioned a party because Becca assumed she was going to attend. She was in for a rude awakening. I will never forget her words as long as I live. "Cathleen's mother won't let me come to Cathleen's party because I have autism." She then repeated everything Cathleen had said to the TSS about why her mother wouldn't allow Becca to attend, all ridiculous assumptions about autism. I talked with the TSS, who confirmed everything. In the meantime, Becca started to go into denial, saying she WAS going to the party. There was no way I was going to tell my daughter that Cathleen's mother was a bigot who didn't like kids with autism. I lied. I said there was a misunderstanding and that Cathleen wasn't having a party after all.

I have often wondered what would've happened if I hadn't made the phone call. I am still convinced she would've put an end to the friendship over the summer break. I still think it was right to call this woman on her bigotry. But the price to pay was high.

I called Cathleen's mother and calmly asked her to please ask her daughter not to mention the party at school, as it was upsetting to Becca. She said she was sorry that Becca felt hurt. Then I asked her if she didn't want the girls to be friends. She started becoming very defensive and made excuses for her actions. She then said Cathleen was the one who chose not to invite Becca. I knew very well from the conversation that had taken place that that wasn't at all true. She turned it around on me and said I was taking it personally. Well, yeah, since it was my child being devastated, I guess I was taking it personally. She offered to have a "separate" party to which Becca would be the only child invited. Last I knew, "separate but equal" was not equal. I politely declined. Then she asked if I would forgive her. I'm pretty forgiving, but what she was doing was asking me to forgive her in advance for something she intended to do that she knew would hurt my daughter. She had the opportunity right then and there to turn everything around, and she didn't want to, but she wanted me to forgive her. I said nothing, and she got uncomfortable. We ended the call.

Any satisfaction I had in knowing I had addressed this woman's hurtful behavior was very short-lived. The following afternoon I received a phone call informing me that Becca's TSS would no longer be allowed in the school. Being the vindictive creature that she was, Cathleen's mother had called the school principal and said her daughter's confidentiality had been breached when the TSS confirmed to me what Becca had said. There was no proof of this, so the school had to find something else. They read the daily log book the TSS sent home to me, in which she had helped Becca obtain and write down the phone numbers of some kids so that she could invite them for play dates and parties. They had been looking for an excuse to get rid of the TSS, and the spiteful actions of an embarrassed woman gave them the excuse they needed.

The school year ended, and surprisingly Cathleen was allowed to attend Becca's party and come with us to a movie as well. Her mother and I acted as if nothing had happened. I really think she wanted to "prove" to me that she had no problem with Becca's disability. There were talks of more play dates, but then the excuses began again. When school began and she learned Becca was being homeschooled, I think she decided she could drop all pretense. Cathleen was supposed to attend Becca's birthday party, and Becca was so excited to know she would be there. On our way to the gym where we were having the party, Cathleen's mother called and gave us some lame excuse. I told Becca, and the look on her face was heartbreaking. She grew very quiet and had a look of resignation. She no longer had any real enthusiasm for the party. The day was ruined for her. A few weeks later the girls saw each other at another child's party. They were inseparable and had a wonderful time together. Cathleen asked me again if Becca could come to play at her house. I just told her to have her mother call. I made one last attempt to arrange a playdate. It was met with the usual "I'll let you know." However, this woman had no problem soliciting a donation from me for one of her pet charities. And that was the last I heard from her. The invitation to Becca's Christmas party went unanswered. Becca still talks about Cathleen and cannot understand why they can't play together. I don't know how I will ever explain it to her.

I learned that Cathleen's grandfather is the executive director of the human services agency where Becca attended preschool. This agency is the largest provider of services for developmentally disabled individuals in our area. I wonder if he knows how his granddaughter is being raised to discriminate on the basis of disability. Would he care?

I'm sure I sound bitter. I really try not to be, but my daughter continues to be hurt. It's not like this is the first time something like this has happened. There have been other children who have wanted to play with Becca. It's the mothers that have prevented it. I remember a little girl from dance class coming up to me and asking to have a playdate with Becca. Her mother grabbed her by the wrist, told her to be quiet, and nearly ran out of the building.

So much for autism awareness. Can we stop raising money for it? People are plenty aware. They're aware that they don't want their precious little darlings exposed to it. They don't want our kids in their classrooms, and they don't want their tax dollars spent on special education services when they could be better spent on sports programs.

Last year when the school principal wouldn't allow the TSS in the classroom, I was compelled to tell her exactly what had brought about the vindictive actions of Cathleen's mother. The principal suggested we have a parent training on autism. She thought the PTO could arrange it. My response? "She IS the PTO." Yes, the woman who had hurt my child so deeply was one of the most active parents in school organizations, and she would be responsible for educating parents on autism. I declined the principal's offer.

Becca does have one very good friend now. Her name is Victoria and she lives three hundred miles away. She is the daughter of one of my oldest friends. We only get to see each other a few times a year, but the girls get along great. When Becca does something a little quirky, Victoria will look puzzled, then shrug and join in with whatever Becca is doing. She seems to think Becca's little quirks are kind of cool. We're making plans to visit each other more often this year. But somehow, it just doesn't seem right to have to travel three hundred miles to see your one and only friend. It just shouldn't be this way.


  1. This made me so sad... and angry. I don't know what the answer is - I just wish every mother should have to experience just once what it's like to have to explain to her child that she cannot attend her best friend's party.

    On an up note, it seems to me that Becca knows how to be a good friend. "He who has friends must show himself friendly." She will cherish her friends; she will bless (and be blessed) with many friends in her life.

  2. You know, Ron and I have really been praying that the Lord will provide some real friends for Becca. And yes, Becca does try to be a good friend, to the best of her ability. She seems to be more capable of empathy than a lot of the so-called typical children she knows. She hates to see anyone sad or hurt. And when Cathleen was at the movies with us and was shivering from the air conditioning, Becca immediately took off her own sweater, said she didn't need it, and offered it to her friend.

    For the past few years she has enjoyed the company of her pretend sister June. When she was in first grade they wanted her to see the school psychiatrist because she kept insisting she had a sister. I guess I'm in need of psychiatric treatment as well because Becca will tell me I need to pick up June at dance class and I'll thank her for reminding me. June has her own schedule of activities and therapies. Funny, the two girls are never in the same place at the same time.

    OK, now I'm sure you really do think I'm insane.


Before autism