This mommy needs a time out. I’m a walking trifecta… pressed, stressed and depressed. It’s funny how everyone deals with their issues differently. Jess pushes people away and then wants to isolate herself. Husband either plays his guitar or watches grass grow. For me, I have a spot on the couch that calls my name. When I’m not there, my cat holds my place.
Long range planning for Jess is what pushes me over the edge. No parent knows what the future holds for their child, however, when dealing with special needs (specifically Angelman Syndrome), it’s hard to find the supports needed to help build her a full life.
Over the years, I’ve learned that my emotions are like a ball. As soon as I hit the floor, I immediately bounce back. Hitting bottom is just the kick in the ass I need. And no, I don’t mean I have to drink to get through this, that measuring cup of wine is just a prop to prove my point. The words to the song go “nobody knows the trouble I’ve seen…”.
Last week I spoke with an autism expert. Someone who navigates families through the system. Many things he said I completely agreed with, however, the assumptions he made with regards to autism and angelmans were dated. Even so, momentarily I felt that he was someone that could help. He added that we would need to hire an attorney. The following day I received an email detailing his fees. It should have come as no surprise, this service is not cheap nor does it guarantee any results. Just like those new fangled weight loss schemes that tell you “they hold the secret to success”, this expert wasn’t going to share his secrets either and I was going to have to pay through the nose if I were to have any hope to get an appropriate day program and eventually housing.
Apparently, my process is to wallow while I regroup. While mulling over the information that was shared, I’m kicking myself that I did not take better notes. Just like when you are dealing with a serious medical condition, it’s important to bring another set of ears. When you are emotional, you don’t hear everything that is said.
Note to self, TAKE NOTES. If they speak too quickly, tell them to slow down so you can gather information.
The only thing to do after feeling defeated is to take control. One take away from the conversation was that he knows how to present information to the state. Just like when we were fighting our school for services, they know that we don’t know what our rights are, what they are suppose to provide and what the law allows. This is the big secret to advocacy. I have to stop relying on what people say and find the information out for myself. I may need a lawyer, but I’m going to have to prepare the case.
The “expert” said that “95% of people do not question the validity of the information shared and they just roll over and accept what they are told. By this point in time, they are tired and have no fight left”. Yes, the system takes advantage of us. Just like when dealing with an insurance company, they will delay services till you make them accountable.
There’s a saying in life, you have to be your own doctor, lawyer and accountant, so why should this be any different? One thing I will promise, as I find out information, I’m not going to keep it to myself. I’m going to share with any family that asks me “how did you do it?”. If anyone has any pearls to share, I’m all ears.