While Nathan was inpatient at the hospital, his Tae Kwon Do instructor came and presented Nathan with his orange belt for bravery. I can attest to the amount of bravery that Nathan showed by staying in the hospital even when Mom and Dad could not. I would also like to say a very heartfelt thank you to Jason for taking the time out of his day to come and see Nathan. The kindness you have shown is amazing and is not lost on us. You are a prince of a man and there are not many like you!
We have now been patients of the hospital now since the middle of July and we are seeing a lot of improvement. We are also having our set backs, which is to be expected. When Nathan was inpatient his entire day was mapped out for him. Every 15 minutes they had him doing something, (they also have the staff to support that). Nathan has never really had a strict routine and now we realize how important structure is for children who are Autistic. It reduces the amount of chaos tin his head that he is trying to sort out. So while it may look like Nathan is having a tantrum, it really could be that he is over stimulated in so many different areas. He could be reacting to a loud noise, or a touch or pain that he can’t communicate and it is our job to determine what the triggers are before they happen. Trying to implement a structure at home has probably been the most difficult aspect of him transitioning back to home life. He is very resistant to change but I believe that he wants it and needs it. It is also very difficult with his vision disability to figure out what he can do and struggles to do. He has worked extensively with the Occupational Therapist here at Children’s Hospital and she has given me some wonderful suggestions on how to help him on a sensory level. One of Nathan’s teachers is actually coming to the hospital tomorrow to see what they do here so that they can mirror it at school. I am feeling a huge sense of support from everyone who we are coming in contact with.
We took him to the Opthalmologist on Friday and received a glimmer of hope. He said that at this time he does not believe this to be a progressive disease. His eyes actually improved some since his last visit. He did caution us that this could change at any time and that we will constantly need to have him checked. When asked how this could have happened, he shrugged his shoulders and said “prayer?”. I could not agree more. I know that Nathan has a lot of people praying for him and we are so thankful. He has lost all peripheral vision. He can not see anything up, down or on either side of his midline. Which means that it has to be right in front of him for him to see it. It also helps us to know that we can’t come up to him without verbally announcing ourselves or it frightens him. We meet tomorrow with a Low Vision Specialist who will help make recommendations for everyday living and how to best help him. Again, another person from the school will be coming to help me translate all that is needed:)
From the bottom of our hearts, Jay, Madison and I want to thank everyone who has taken the time to send a postcard or a note or a message or a prayer. Every single one of them matter and they have all been so important to Nathan and us. This has truly been the most testing thing we have ever had to go through. We have so many amazing friends who have contacted their friends and the generosity is just plain overwhelming.