Recently, I asked David to write a post for me. I know he has a ton of work and doesn’t have time to write a post at this time but I asked him so that he could think about it. I had no idea that my request would bring about some answers to questions that we both had or that it would bring healing in an area I didn’t realize I needed healing in.
Here are some of the specifics I asked for:
1. Share how you felt during the time that we were searching for answers about Daniel.
2. How did you feel about the answers we received?
3. What was it like for you in our relationship during that time?
4. Explain how you feel now and what you see after almost three years have passed.
5. What were your feelings during the time Daniel didn’t connect with you at all and I was his sole source of communication and help?
6. How do you feel now that he is interacting with you and reliant on you for things?
Those were some of the specifics that I requested but did not limit to and I told him to feel free to write whatever, those were just some things to consider.
I have on again off again felt the need for David to share his perspective because I feel like there are so many mothers who write but I wanted to know how a Dad felt. There are a few Dad’s out there writing and I like reading from their perspective but I wanted to know my husbands perspective. We never talked about it. During that time was the only time we have ever been disconnected and had arguments. Our relationship from the beginning has just been even keel with each other. We have always just talked things through and understood that we must have had a misunderstanding in our communication. Neither one of us have had relationships like that so our relationship we feel, was a God send and that is a story I do plan on sharing sometime.
We had several contributing factors to the imbalance in our marriage at the time we were trying to find out what was going on with Daniel.
David was the one who actually did research at first about autism. He shared with me and I went into freak out mode. I was with Daniel 24/7, David was not. He did not see what I saw and he was not the recipient of Daniel’s meltdowns. Daniel did not behave the same when David came home from work, he would do some of the behaviors but David was unaware of what our daily life was like until he started working at home. I tried to explain to him but he had not actually experienced it until he was with us all day. The first year that he worked at home we had a basement so he was still cut off from our daily life except for when he took breaks. It wasn’t until we moved into a house that did not have a separate office that David experienced what I had been experiencing.
The problem for me was that David had the attitude that Daniel would grow out of it.
During this time I had no support from the church we were in, about Daniel, no support from my family and what felt like no support from David. I was confused on what to do and what to believe. Even three years ago the web was saturated with misinformation about autism and the lead links were from resources that offered hope of recovery. Here is where there was a lot of confusion for me. David would say he felt like Daniel was going to grow out of a lot of things but he refused the “recovery” paths. There were various groups and organizations that I checked out. I would talk to him about them and he quickly dismissed them or their methods. He would encourage me to do more research to see what I could find, I discovered that a lot of them were snake oil. :-/
How was Daniel going to grow out of it if we didn’t do something?
David would suggest more medically based sites and he is the one who started buying me books or suggested ones from the library to help me to understand. I felt like he didn’t really believe that Daniel was autistic, I thought he was suggesting that I read these things so that I would see for myself but the more I read the more I knew for a fact that Daniel was on the spectrum. Even after seeing the doctors we knew but I felt that David didn’t really believe it. The other day when we talked about this I discovered that it is all semantics. I should have asked what he meant but I was so confused by all of my surroundings, that I didn’t realize that was what I needed to do. Since we had pretty much understood each other before, I thought that I did understand what he meant. The problem was I was operating out of fear and confusion instead of knowledge and understanding. Because I was hearing things through the filters of fear and confusion I was unable to really comprehend what David meant. I just wanted everything fixed and I wanted peace. Obviously, I have learned a lot, I am still am, and have a lot more to learn but new mental filters make a huge difference.
David thought I understood what he meant by his definition of autism.
For me I see a spectrum but autism is a whole. David sees it as separate spectrums. He has placed Daniel in a category that shows with therapy Daniel will become self-sufficient and be capable of leading a productive life. He already decided it and was done. I did not. I hope I explained that right, I am not sure how to word it properly. I was consumed by Daniel and David was not, so my perspective was stuck in the here and now. I was focused on the small details, while David saw a big picture. He would see the progress that Daniel was making because he was removed from the daily life. During this time Daniel was still pretty much like an infant in many ways. I had to feed him, give him his bottle, try to understand what his grunts, hits, meltdowns, hands motions all meant. Daniel was doing self harm, very aggressive, yelling at me, and there would be days that he would refuse to walk, I would have to carry him. He was between two and three years old during this time.
There was a lot going on and a lot of changes were on the way.
More to come in the next post.