Monday, August 20, 2012

"It could be worse".....

I know it has been almost a month since my last entry. I started to come up with a few entries and then just got caught up in life. There has not been to much to report and what I do have to say I usually just put on H's Facebook page. I do have to say I am pretty impressed to over 100 people are following our page and that a lot of them are people whom we do not even know and found our page through friends etc. While right now that page is simply a means to not bombard my news feed with updates etc of H depending on the outcome of our next apt it might be used as a means to get the word out on fundraising. Here is the link to his page. https://www.facebook.com/HopeforH

 Why might you ask would we be fundraising. For a few reasons. One of which most of his therapy, testing and appointments are not covered by our insurance. If it is required that we would need more types of therapy, more therapy sessions etc we would have to find ways to cover the costs of them. There is also special things H needs for therapy reasons and some of which are just to much for us to cover out of pocket at this time. Lastly we keep tossing in the idea of a service dog.  This would be trained to search and protect H. It would keep him from getting out of our house but if he did this dog would be able to track him. It would be used as a means of comfort when he is feeling overwhelmed and keep him safe at night. Such as if he would wake up and wander from his room etc the dog would alert us and the dog would also try to apply pressure to help him find comfort and go back to sleep. This is amazing piece of mind but comes with a giant price tag!

As some of you have read on H's page and my personal page it has been a tricky few weeks in our home. I used to always tell myself "It could always be worse" I did it as a way to psych myself to think that things are not as bad as they seem. Not long ago I stopped saying that because it seemed every time I uttered those words it would get worse. I have taken that line out of my daily use and now think of it as an insult in a way. When people I know say it to me I want to lash out and say "Really do you think so? Please tell me how it could be worse? Tell me how much more do you think myself and this family have to take before we can say ok it's worse game over?!" Trade places with me walk a mile and tell me if you still feel that "It could be worse!"

The events of last week have still got me scared and depressed. My child got out of this house and wandered about at night. My child has almost set this house on fire twice, my child has found ways to make a seemingly safe home feel like the most unsafe place for him to be. It hurts to know that my child is not safe in our own home. That even thought I covered outlets, locked cabinets, lock up chemicals, don't light candles, baby gates on the top and bottom stair, use window screens etc it is not enough. H can break off those plastic cabinet locks if he yanks just right, he is starting to pull out the outlet covers, he can open our 3 step baby gate almost as well as an adult, he can move a chair to our front door move our dead bolt and turn the knob and walk out of our home. I am hoping to come into a small fortune soon because this how will make Fort Knox look like childs play! Our landlord is coming tomorrow to help us see what locks, alarms and sensors we can have them install for us. I have been given a few good sites to find industrial strength baby proofing items for all the other stuff. For now he resides in our bedroom with his bed in our room until I know without a doubt in my mind he is safe and we are safe.

Most parents at this stage of parenting are more concerned about the commonly known terrible 2's I have recalled to memory more and more lately a conversation with our old pediatrician on base right after H had turned 1. H was in the room waiting for his check up writhing on the floor arching his back screaming and yelling and she walks in looks down at him looks up at me and with a sympathetic smile said " Sorry looks like the terrible 2's came a year early for you" So while most of my friends have kids about to turn 2 and they deal with this I have been doing it for a year already and for now there is not light at the end of my tunnel. I swear with each passing day it gets a bit more dark and a bit longer.

I can say though that some good has come about lately. We recently acquired and iPad for H. This is his means of communication, helping with problem solving, hand eye coordination and learning to use ASL. So typically children at the age of two have an enormous vocabulary with the ability to say 2 and 3 word possibly 4 word sentences. H can do that but not verbally. He is now able to have a 2-4 word signing conversation. He can ask us for milk in a cup please, and thank you, he can ask for help, all sorts of things and understand when we sign to him instructions and directions. A small part of our communication barrier is crumbling down and it gives me hope. He is so independent however he can go to the fridge pull out a container of milk bring us a cup and tell us with those actions what he needs, or bring us a diaper and take off his wet one.

Answers is all I want. Not a pep talk to make me feel better. I hope next week can give us that or provide us with a clearer direction of where to go and what we are dealing with. That is all we want.