In the past month or so Eliza and I have hit another few milestones. Six years since her due date, six years since she left the NICU and six years since I realized she would not have your typical childhood. But there are other milestones, not as easily measured. After almost 6 years of feeding therapy, Eliza will have her last feeding therapy visit at the end of August. The decision was a hard one to make, since Eliza has made progress since starting with this therapist three years ago, and frankly this is the only feeding therapist Eliza made real progress with over the years. I've had to come to this decision for two reasons. Eliza's school is moving in the fall and while it is not a far move, given the uncertainty of public transportation in NYC, it makes it physically impossible for me to work, pick her up from after school and get her to feeding therapy at the height of rush hour without the benefit of a teleport machine. There are also financial considerations since her feeding therapy, which is very costly, is not covered by either insurance or CSE (the Committee on Special Education). Since all of Eliza's other therapies (OT, Speech and PT) occur during the school day, I can work full time and pick up Eliza from after school when I get out of work. So starting in September, we'll be working on feeding on our own. Since we have breakfast and dinner together, I can still reinforce what we've both learned in feeding therapy. Eliza's health para at school is also on board with many of the protocols surrounding meal time and has been a great help to Eliza while at school. It is odd though to think that after six years of sitting on uncomfortable plastic chairs waiting for Eliza's various therapies to end, that I'll actually miss those plastic chairs.
I think what bothers me most about having to make this decision is that I would not necessarily have to make this decision if I wasn't a single parent who has to work full time. While I am sure many single mothers go through periods of guilt, for lack of a better word, about whether they have made the right decision to raise a child alone, it is particularly difficult when you have a special needs child and have to work full time. Some single moms I know are fortunate to have great family support, but that's not the case for Eliza and me. Our family support comes from my mom. But while my mom is pretty able bodied, she is 89 and lives 60 miles away. She is a wonderful Nana, but is not able to be a care giver to Eliza for more than an afternoon. And that's what she should be to Eliza, a really awesome Nana.
I think the other milestone that I have reached is an emotional one. I am tired. Very tired. I am tired of having to act like Eliza is just a typical kid with no struggles for the benefit of others because it makes them uncomfortable if I talk about Eliza's issues. I am tired of trying to hide how painful it is to watch Eliza struggle with things that come so easily to typical children just to make everyone else feel better about themselves. I am tired of having people say "but she's just so adorable, she'll be fine" because the people who say this don't know jack about raising a special needs child, they have no crystal ball, have never bothered to spend more than an hour with her and the last time I checked "adorableness" isn't necessarily something that will help you lead a happy and productive life. These people don't see Eliza struggle with reading, math and writing. I am tired of people seeing Eliza eat one-half of one mini pancake and saying "see she does eat, what are you talking about?" Try to have your kid live on that "meal" for a month and give me a call then and let me know how much fun that was. These generally are the same people who will tell me they know what it is like because little Sally or Billy only eats 27 kinds of food. I am tired of people who assume that because Eliza is a wonderful artist that this means that she actually has the fine motor skills to write and then having to explain over and over that these are two entirely different skill sets. I'm tired of the jackasses who think that my kid is lazy because she has weak muscle tone and doesn't have the stamina to keep up with typical kids. I'm tired of people telling me how tall Eliza is and then having to tell them she is 6 and not 3 and getting the response of "Oh." I'm tired of people who think it is OK to chastise my child because she is not sitting quietly and acting like an adult. And I am really, really tired of people telling me I need to take some time for myself. If you want me to do that, then feel free to let me know when you'll come watch Eliza, since I'm pretty sure leaving a 6 year old home alone is a pretty poor idea.
The list goes on, but I'll spare you all.
So to celebrate my overall tiredness, I'm paring down. Paring down on contact with the people who cause this tiredness and spending more time with people who bring joy and happiness to Eliza, and to me and to whom we bring joy and happiness. Life is just to short for Eliza and me to spend an inordinate amount of time with people who are never, ever going to "get" us and who are just going to wear us down.
We have been blessed with many kind and wonderful friends and family, far and wide, and I think it is time to focus on those relationships.