Tell me…how does that make you feel?
I have been asked by many people, sometimes too many people it seems, how we are handling the diagnosis and everyday events since we found out Silas is autistic. Well, let me bring you on an emotional rollercoaster. Many compare how family members deal with finding out about the diagnosis on the autism spectrum to the stages of grieving. It is amazing, that is exactly how it was…at least for me.
I can honestly tell you after finding out Silas’ diagnosis I experienced a wide range of emotions. Sometimes I thought I was going insane (perhaps I really am but who am I to say if that is indeed fact). The first emotion, shock, was well-warranted and expected. Deep down I knew the diagnosis but actually hearing it come from a medical professional was tough.
The next emotion, and this one has been the hardest one thus far, is grief or sadness. I have overcame this emotion so many times but still continue to “revisit” it. At first, all of the hopes and dreams I had for Silas felt like they had been stripped away or taken right out from underneath me. My heart actually hurt for him. There were so many things that I had hoped we could do together that seemed like they would never happen. Of course at the time I did not know how this diagnosis would affect Silas but I assumed the worst. This emotion seemed to linger on for what seemed like forever. After a while though, it subsided and the next emotion hit with a vengeance.
I was mad. People with “typically developing” children actually really pissed me off. They didn’t know or could even begin to understand the mental and physical pain I felt for my child. When we went places and I saw other parents with their children walking hand-in-hand it hurt. I wanted to be able to do that with Silas instead of having to carry him since he wouldn’t walk in public. I wanted to be able to do so many things like other parents did with their children of the same age. I was just one angry, bitter little woman. Luckily though, this stage didn’t last too long. If it would have lasted any longer I don’t think my marriage could have handled it. I know that since I was so pissed off all the time I tended to take it out on those around me. Robert, that poor soul, was usually the object of my aggression. I didn’t mean to take all of my frustration and emotional pain out on him but I did anyways. It seemed like for a while, we didn’t even speak. He had his moments too but since this is coming from my perspective you get my side. You’re welcome and moving on.
In the process of grieving the next stage is denial. I skipped right over this one. This incontrovertible reality so rudely imposed on my family by this thing called life was not going anywhere no matter how much I wanted it to. I felt like I could validly say, life’s a bitch.
Loneliness. This stage sucked. Really. Bad. I felt all alone, all the time. I couldn’t talk to people because they didn’t understand what we were experiencing unless they too, had a child like mine. It seemed like I just did not have the time or motivation to contact friends or family for company or even conversation. I didn’t want to talk about what was going on so I just avoided everyone. I was an expert at changing the subject anytime it came up. Now that I am writing this, I actually see where we still are pretty good at being loners. I think this is mostly because we don’t want to put Silas into a situation where he feels uncomfortable and may have a meltdown. I enjoy the solace of just my little family in our comfy home.
Finally, the best of all the stages…acceptance. I accepted the diagnosis and am learning from it every day. I am Silas’ advocate in life. I am motivated to push him to excel in everything. I want the best people possible working with him. I want nothing but the best for him and will absolutely not settle for anything less, no matter what. I spent almost an entire year trying to get the ABA therapy approved for him with our insurance before it ever finally happened. Those people on the other end of the phone were not fans of me. The people in the Tricare office at the medical clinic on base repeatedly dodged me (though they couldn’t escape my devotion to Silas and his well-being). I sat in the clinic for three hours one time waiting for them to finally come help me when they realized I wasn’t leaving…persistence and patience are my greatest weapons when it comes to Silas. Being able to accept things for how they are now and not how I may want them to be has helped me tremendously. I was able to move forward instead of dwelling on things. I have utilized this time we have had since his diagnosis to always be productive.
There are days though when things get rough and we do throw ourselves a little pity party. Sometimes we find things that we wish were different and it makes us sad. Sad enough to cry and we do. But we accept things for how they are and move on. It can be very frustrating living in “Silas’ world” in a perpetual state of confusion. Why confusion? I say confusion because it is hard to judge Silas sometimes. Since he doesn’t communicate much with us we have to guess on almost everything. We never really know if he is understanding what we are saying or if he is even paying attention to us. He is the world’s greatest ignorer. I wish I could do that…all the time.
Even though we have our down days, the majority of our days are amazing. Silas has come so far over the past year and a half. He does so many little things that truly leave us in awe. I’m all for living in the moment. Don’t worry about things that may happen. Sure, make plans but if those plans change…that’s okay too. Some people may frown upon what I am about to say but I really don’t care. I let Silas dictate my plans the majority of the time…and I’m okay with that. If I’m reading a book for school and Silas wants to go for a walk, I drop what I am doing and we put on our shoes. I enjoy the spontaneity he brings to my life. Besides our usual routine and various rituals we do every day sometimes it’s nice for a change of scenery. But here I go rambling…I think I’ve just thought of my next post. I will leave you with this…