Yesterday I had the opportunity to meet an angel in the most obscure of places, the hospital waiting room where my daughter was getting her bi-weekly physical therapy and speech services. My daughter and I walked into the waiting room, found a place to sit, and began to look at magazines. RA has been learning English since coming home last September, so we use these moments to build her vocabulary, and yesterday was no different. This angel must have been watching us, because after RA was called for her appointment, she started up a conversation.
It is not unusual for people to comment on my daughter’s beauty. She is beautiful inside and out, and most people notice not only her wheelchair, but her amazing spirit as well. When the waiting room angel complimented my daughter, I did not really think anything of it at first. But then she began to ask me questions, very pointed questions that grabbed my attention.
She asked me if my daughter liked to sing, and for a second, this question took me back a little. There had been no music playing, no mention of music, and RA had not been humming or singing. After a couple of seconds I told the angel that my daughter loves music, but that she does not sing. The angel looked at me, and said that my daughter looked like someone who would sing, and that she may surprise me someday. I shrugged this comment off, and went back to my reading. After all, what did this stranger know about what my daughter will do someday?
She then mentioned that RA looked like a fighter. This was a more comfortable conversation for me, because my daughter is a fighter and anyone can see that. I told her she had a very big back surgery this past December, and explained about how far she had come. She told me that by the way RA presents herself, she could tell that my daughter had been through a lot in her life. Again, sort of a strange thing to say considering we had just met, but since my daughter sits in a wheelchair, and wears a back brace, a leg brace, and an AFO ankle brace, this isn’t really much of a stretch.
I did explain that RA had spent the first 13 years of her life in an orphanage, so she definitely had learned to be a fighter. Again, this usually ends the conversation, so I returned to my magazine. But, not this time. The angel continued by complementing me on fighting for my daughter. Now I was really starting to feel uncomfortable. Do I fight for my daughter? Yes, of course I do, but how would this woman, whom I had never met and will probably never speak to again, know what kind of mother I was to my daughter?
She turned to me, put her finger in the air, and began to tell me with great vigor how she had been a teacher for over thirty years, and most of this time had been in special education. She talked about how she had fought so hard for her students to have a fighting chance in a school system that was failing them. Her face was sullen and I could see that she was shaking from emotion as she poured her frustrations out to me. Just when I thought I was now going to have to comfort this strange angel, she adjusted herself in her seat, smiled a giant smile and again thanked me for fighting for my daughter.
She explained to me that parents would come in to what she called “M” meetings, and how much she hated these meetings for the parents. I can only imagine that these meetings were an earlier version of IEP meetings by how she described them. She said that she felt very bad for the parents, because there would be a room filled with education professionals who acted like they knew more than the parents.
She talked about how scared the parents would look as they waited for what the school was about to tell them. So to break the ice, she would tell the parents that they forgot to bring their cousins, aunts and uncles to the meeting. To which she said they would look at her with very questioning eyes. She said she would explain herself by telling them that the school had brought everyone except the custodian, so it was only reasonable that they would bring lots of people too. She smiled as she told me that the parents would laugh, ease up, and quite often find their voice during those meetings. To her, the meetings where the parents felt comfortable to be an equal team member always fared much better for the child.
As a special needs parent, I have been in more than one or two of these types of meetings myself, so I was intrigued by what she had to say. Just this spring I had to put my big girl panties on and fight for two of my children, including RA, to ensure they receive the best services at school. I had been feeling quite guilty for writing strong letters and having debates about the law with administrators.
There is such a fine line between being an advocate and just being a bully. Knowing where to step can be very, very tricky. Many times I feel like I am overstepping into the bully zone – especially when the school makes me feel guilty about their lack of funds, resources, and staff. And even though I have been advocating for my children for over twenty years, I still struggle sometimes with guilt.
The most important words she spoke to me during that conversation was that my voice, my fighting, and my struggles to help my children be successful is my most important job. She reminded me that it is okay to stand up and advocate for my children, and that by demanding the school provide my children what they deserve, I am not being a bully. In fact, she reminded me that as a parent, I have the power to do what many of the teachers cannot do – make requests of the administration to provide the services that best fit my child’s needs.
Good teachers see the needs of their students, but quite often have their hands tied when they try to service those needs. This waiting room angel spoke to me about students who would get labels by the teachers for being a “bad kid,’ and how this would spread. She talked about how this was not usually because the teachers really thought the kids were “bad,” but that they were so frustrated by not having the supports to help the child be productive.
She explained that when the teachers would ask the administration for support, they would be met with comments about budgets and how the teachers should get creative. She said that hearing this time and time again makes the teachers feel helpless. Having the parents step in is often a welcomed relief if done right.
Even as an educator, she understood the value of a parent in a child’s life. She understood that a degree does not make a person an expert. And, she understood that not everyone will look upon my children with love, understanding and support as I do. She knows the struggles of being on the inside fighting for her students, and is fully aware that empowered parents are the best weapon against funding, budgets, and the numbers game.
I had been questioning my ability to advocate, my ability to determine what was best, and my ability to be heard among the noise around me. This angel, in the most strange of places, helped me to regain my confidence and to restore my fighter spirit. She helped me remember that fighting for my children is advocacy, not bullying.
Special needs parents, don’t ever apologize for doing what is best for your child, or for demanding that others serve your child in a way that will foster their success. Their are many times I feel like I have become “that parent.” My angel helped me remember that being “that parent’ is the greatest job I will ever have. No parent should never feel guilty for doing that job well.