What We Need

     C attended two different kindergartens, because the first one we tried was so terrible. There was a little girl in his class who had Wilson’s Syndrome, which is an autism-like genetic illness that has at its base a high copper content in the body. I went in for lunch a number of times and sat with the kindergartners outside. Several of the kids were making fun of this little girl behind her back and saying very sophisticated and horrible things about her. Frankly, I wasn’t exactly sure what I was supposed to do or say given it was a Montessori school whose main tenet seemed to be that adults weren’t supposed to get involved in much of anything.

     I later brought up the incident with the principal, while attempting to explain to him my concern about C’s future and his complete lack of friends in his class. Mr. M’s response was that this little girl often hit other kids and that explained why the kids didn’t like her and therefore made fun of her. It seemed completely okay with him that she was the brunt of vicious comments. This wasn’t my first clue that Mr. M was not the kind of person I held much respect for, but it was one of the most telling. It broke my heart that his answer to the problem was to blame the little girl instead of working with her aide to make sure the incidents lessened as well as perhaps helping the other children understand why she often lashed out.

     The most damning moment for Mr. M, however, was the day after a particularly unpleasant IEP meeting. My emotions were raw as were my eyes from crying, and as I tried to get out of the school after dropping C off with a minimum of interaction with anyone, Mr. M called me into his office. As he was yelling at me, with door open, teachers, parents and students wandering in and out, he made a comment I will never forget. “I don’t care if C has any friends,” he screamed. “That is not my problem!”

     This, from an elementary school principal. I understand it’s not in a principal’s job description to help children have friends, but that comment brought on a light bulb moment for me. We pulled C from that school right in the middle of the year and never looked back.

     I’ve seen autism do many things to many families, and more specifically, to many mothers. I’ve been struck by two types of mothers I’ve seen, and I can see how it can go either way.

     First, the Mom who has such a grasp on her own kids and how they function. She recognizes the difference between autism behavior and kid behavior. She has the delightful ability to advocate for her children without being confrontational, and I envy her that skill. While killing the school staff with kindness, she manages to get what her kids need into their IEPs (Individual Education Plan) and probably makes the IEP team members think it was all their idea in the first place. She is calm, cool, collected, and I want to be around her in the hopes some of it will rub off.

     The second Mom, (sadly, I’ve seen many more of these), breaks my heart. She is beaten down, either by difficulties with her child, frustrations with the school system or the inability to find any doctor who can help. Recently at a meeting for parents with special needs children, she spoke her piece, shaking with anger and rage, and stormed out of the room. I didn’t know whether to be relieved or to cry, and frankly, it made me feel horribly lucky and terribly sad for her at the same time.

     I can see how it could go either way for many parents. We struggle so to help our children, to make sure they are getting what they need in life and school. Nothing is what we thought it would be, but we of course adore our children. We try to maintain a balance between the time we want to spend with them just playing with no agenda and the time we need to spend with them teaching them important life skills. We stay up late researching, sorting through medical bills, trying to read lab reports, and all the while trying to make sure we are taking care of everything else in our lives.

     But I know which Mom I want to be.