As a mother to a child with special needs, sometimes I get into my own head especially at the end of the school year when kids are graduating, going to prom, learning how to drive, and the like.
It makes me think of the things that I will likely miss out on. This is a common part of the grieving process when you have a child that won’t be able to do many things. I have spoken about this in my daughter’s blog and how it feels when your child first gets diagnosed.
My beautiful child was diagnosed with a moderate intellectual disability (formerly called “mental retardation”. We don’t use that word anymore and if you were to say it to me or my daughter in my presence, I would take a trip back to the psych ward gladly). She is 16 but her cognitive age is likely to get to the age of 8. I did not expect that diagnosis when I took her for evaluation (see: The Day My World Changed).
At her age, I was a reader, a great student, and I had dreams. My daughter can’t really read but her grades are good in her SpEd classes. She makes the Honor Roll and does her best. I spray her bear with lavender every day (the one she fought me for in February), kiss her on the head, hug her, and tell her I love her every day before school. I am so proud of what she has done in her life so far.
Loving WHO My Child is and is Becoming
People say that I underestimate her, and I did in the beginning. I don’t anymore but I also am realistic. She has a yellow belt in Taekwondo. I can’t even get through the first form. She is extremely observant. She can memorize choreography and make friends wherever she goes. She is a light to the world. She’s smart in a way that other people aren’t. I’m getting her tested for autism as they didn’t mention that in their original diagnosis, but she has the signs, and I am working with state programs to help. The ARC and DORS have already contacted me, and she is registered in Ready at 21 which is to help the kids, once they get out of high school, to get out there and take care of themselves. I will get her a huge dog though. I know I have to let her go but I also don’t want her to be taken advantage of.
I need to learn to appreciate those things about my child and stop looking at what I was doing at her actual age. Eight was a good age though, I’ll say that much. I was pretty happy. We got to go to the library every week or two and I would get my Babysitter’s Club books (we were allowed 5 books each when I was little) and I loved to read so much that I got an award in elementary school for being an outstanding reader. She doesn’t read and reading to her is hard because she will stop you to ask a million questions. She doesn’t understand a lot of things, especially death and, when I try to explain things to her, I feel that it’s a gift and a curse that she doesn’t understand this world, but I need her to be safe.
While I was looking into getting my Master’s (that I literally can’t afford), I saw advocacy programs. One thing that I have a problem with when it comes to the government is the fact that, if my child makes a little over what disability will give her (when she turns 18 because I make too much for her to get it now), she won’t get it anymore. They want them to work menial jobs in many cases, so they don’t have to pay the money that is rightfully theirs. They didn’t ask to have a disability. Also, if my daughter were to get married and both were getting disability, it would be taken away. I feel that it’s unfair personally and would like to do something about it but don’t know where to start. But the last time I tried to speak up on behalf of my daughter that doesn’t really pay attention or care too much about the thoughts of others, I was literally bullied by disabled people (yeah, it happened. I talked about it here) on Twitter so I did kind of say they can all go to hell, and I will advocate for my child that needs my help.
I want to change the world for my daughter and people like her and there are entities out there that want to do the same. I can learn from them and take it from there. But I’m constantly worried about my child and her survival in this world more than mine. She has a village. She is loved. She is valued. But there are some shady people out there and I don’t want her to have any parts of them. I can’t keep her in a bubble.
This is just me thinking. I’m on pain pills or what might be a cracked tooth I’m having all the fun now. I’m lying. I have a lot of things to blog about, especially being turned down for writing jobs. That hurt and so much more. I might assign myself one day a week to do this but I’m currently attempting to get a second job. I took the test for it, have to take a drug test, and then get on the project. Times are hard and my child is asking about Melwood which is a great summer camp for kids with special needs but the price this year is $440/wk. I don’t know if I can swing it.