I haven’t written anything meaningful in awhile. The reason for that is that I have just been to overwhelmed with life. Things aren’t getting any easier at the Lost and Tired household. As of 2 days ago we are officially without a car. My parents have been gracious enough to allow us to use theirs in order to get the kids to and from school. The humiliating truth is that we are stretched far to thin to really afford another car payment. We are barely surviving as it is and extra burden might collapse us financially but what choice do I have. My reason for bringing this up is to show just one of the many problems/challenges facing the special needs parent. Often times (as is true in our case) the family is simply stretched to thin (do things outside of their control) to be able to accommodate something as big as losing a car. The costs associated with raising special needs children is unimaginable to most people.
I have been feeling very defeated lately. The computer business has slowed down a bit and the construction side has been hit by the unstable housing market. It’s like I just can’t win. Looking to the future is a very scary thing for me because I have no idea where we will be. We are trying to be ready for anything that can possibly come along. We were caught off guard by Gavin’s hospital stays this summer. I have started writing articles again but the mental and emotional road blocks effect that as well.
Lizze is physically worse now then she has ever been. She can literally barely move and is in immense amounts of physical pain. They re-adjusted her fibro meds but IF it works it will take awhile. Until then she will have little to no relief. She got the results back from the sleep study and she is not narcoleptic. However, the doctor said that 2% of the population needs 12 hours of sleep every night in order to function. Lizze is the newest member of the 2%. So we now have to figure out a way for her to get 12 hours of sleep a night. I’m not sure how thats going to work out since we are lucky to 4 or 5 hours a night. We will have to do something because she desperately needs it.
Gavin starts school on Tuesday. I am really worried that he will not be able to handle the stress right now. He is doing amazing behaviorally but still very manic and has regressed quiet a bit. He is really excited to go back and honestly we are excited to send him back. It has been a very long summer and Gavin’s problems pulled the attention away from Emmett John and he really needs help.
Emmett John is really struggling. I don’t know if he is regressing but he is so angry ALL the time. He screams constantly and it just makes my head want to explode and my heart break. He has also starting putting EVERYTHING in his mouth. That’s new for him. I don’t know how to help him. He is so frustrated with everything and everyone that he just lashes out. His therapies begin this coming week and I’m praying that will help.
Elliott Richard is an emotional wreck but is doing well at school. He really enjoys it there and they love having him. That is the one comfort I have at this point is that Elliott Richard is finally getting what he needs. I think in time as he adjusts he will start to get better.
I have been walking like crazy. It makes me feel good and I helps to relieve my back pain. I’m up to about 5 miles per day sometime less it just depends on the mood of the house.
Emmett is screaming so I am going to go relieve Lizze.
Wow Rob. I can't even find the words to tell you how sorry I am for your situation. I am a single parent of two; one of which has Aspergers. I know the profound effect and major challenge it has been for us, so I can only imagine how much you and Lizzie struggle…