Wednesday, November 5, 2014
I should be doing the dishes since everyone except me is sleeping and it 's only 8pm. I considered deleting my blog today too, all of it from day one. Some day I may want to look back on it and see how far Abe and my family have come. It might help or inspire other people, it may give someone with a child in a similar situation a ray or hope or it might just flat out offend people. It's from my heart and what is currently happening in my family. What is occupying my heart, mind and soul at the time. I decided it's probably not the best idea to completely delete. I felt compelled tonight to write this entry about doors. Abe has had his power wheelchair since summer time. We have had a few set backs with it especially during his inpatient stay. ABA worked tremendously hard to motivate him to drive it. The title of this entry is "Doors". The reason behind it is Abe has a huge aversion towards driving his chair thru doorways. He often verbally says "I need help", "help me". This is fine when there is an automatic door that is wheelchair accessible that I can quickly press a button and it opens back up. However at his school we have to maneuver through two door ways. The external door way has two doors but is separated by a metal divider and the internal doors both can open. Luke is now one years old and I often put him in a Tula baby carrier I borrowed on my back so I can use both arms and legs to hold the doors open. I can't be chasing a busy toddler and help a 5 year old that does not feel comfortable driving his wheelchair thru door ways or onto or off elevators. The Tula or Ergo baby are truly necessary for me right now and I am so thankful to have the option. I heard on Spirit105.3 last week about a high school senior with cerebral palsy doing funding raising so his school would automatic doors for children in wheelchairs. I really don't want to copy his idea but I thought wow how awesome would it be for all the children in wheelchairs that attend Abe's school for an automatic door to be put in. The senior in high school had people donate $20.00 for a ride on his wheelchair. He raised enough money for it be purchased but will graduate before it is installed. Abe is only in kindergarten right now so if this does happen then he will benefit. If you have seen me struggle to hold the doors open and help Abe drive his chair into school while trying to make sure I don't hit Luke into the other side of the door you would completely understand this request. Some times someone is available to help us but most of the time there is no one because we typically arrive during the school day. Eventually he will gain the confidence and maturity to drive himself thru doorways but when he does sadly he will still require someone else to hold the door open for him since they are not handicap accessible. This will make him still dependent on other people as well as all the other children in wheelchairs. I mentioned the idea of automatic doors to assistant director of special education but all that was probably was heard is "this cost too much money, this cost too much money". I assume that's all that went to his mind, I really have no idea. The topic was quickly switched. Most likely true because these doors probably require maintenance beyond a typical door. Also during a lock down could it be properly locked to prevent a bad person from entering the school? I have no idea if we did the fundraising if the school would even consider it. It's probably been needed for several years but sometimes it takes a loud parent to make things happen. I am open to ideas and suggestions about this. Especially from parents that made the playground in Bremerton get remodeled so their children can play. Who do I approach, what research do I need to do, do I find out prices and vendors? Should I approach the PTA about this? I should have someone take a video of what's involved with getting Abe thru the door ways just to get into school. The door that he goes in to and from the bus is locked during the day which is understandable. It still is not that easy to use that door way with the power wheelchair. On a different note Abe used a reserve walker today and yesterday at outpatient PT and did an amazing job. He is making good progress. We just need to keep his tummy issues under control and keep him healthy.
Posted by Karen Goddard