First lets get something straight.
Our life… Our life… Is wonderful. We all work very hard for what we have, especially our son, but our lives REALLY are wonderful. This is not a poor us, or more importantly, a poor him. This is just us, hopefully relating to other families out there in a similar situation. Families feeling the same pain, the same frustrations, the same fear and HOPE.
It is the hope that this innocent, puzzling, beautiful little 3 and 1/2 year old can be whoever he wants to be some day. It is also the very real fear… that maybe he can’t. It is brutal. Regardless of your circumstances…Maybe all parents feel the same way…
Our oldest son is Greyson James. He is a magnificent young man. He has all of this potential, and I am not just saying that. However, most of the time we struggle to unlock it. His potential, this magic I have seen (it is the best way to describe it), it is there for moments, and then gone for days or weeks. This is our new life within the spectrum of Autism.
With sadness and fear, there are so many moments that cause concern. The scanning, the hand flapping, the grunting and groaning. No, no it is not all the time, but frequent enough to be noticed. Do not forget he is high functioning, so it is all on the very mild end. Even so, I find myself in a panic with some of these moments. I don’t think anyone can notice my panic, but my mind is everywhere it shouldn’t be. I am not concerned with others opinions. I am not concerned with any of that. I love my son. He is mine, and I am his. My concern is more so that I think his quirkiness may never go away, and that’s okay, if he can still be functional. I fear that he will never be independent, that he may never leave home. I fear we may never find the answer for him, even though I know he is not a problem, and we should not need an answer for him. And then I become overwhelmed with anger. Angry that this happened to me. Angry that because he is his fathers son, that maybe he is this way because of me. Angry at the world. Angry at myself. But then it gets worse… I become guilty. Guilty that I made this about me. Guilty that I put myself before my son, if even just in my thoughts. I assume those feelings are pretty natural, but it still hurts me all the same. He deserves all of me. All of me.
But these are just moments, right?
Speaking of moments, I would like to share with you two of my most difficult moments, and two of my most hopeful.
I will start with my two most difficult.
1. His first evaluation. This was a pre-ASD diagnosis eval, with his speech and SEIT therapists, among school district and county representatives. (Side notes: We had begun services when he was 2, as we saw many flags that most of us do. My sister-in-law is also a speech Pathologist, whom helped us begin the early intervention process.) It was a regular day, and I ran home from work on break. It was not the evaluation that hurt me (the most anyway), it was what happened after. Both therapists, along with my sister-in-law, went to our basement to try a few things on Greyson, to help them work together, focus, and be on the same page as one another. As I was on my way out of the house, I could hear Greyson crying, yelling, because he was so upset they were asking things of him. I felt as if he was a lab rat. He was being poked and prodded, and I didn’t know if it was right. I proceeded to observe it briefly. I watched as his aunt studied him like a test subject, rather than her sweet little angel (and don’t you dare mistake that comment for anything other than it is… His Aunt loves him VERY much… But it still affected me). I was torn between knowing what was right and wrong at this point, whether this process was necessary or not. I was so filled with hate towards them, and to be honest, I still am. Let me be very clear by saying how much I love them, his therapists. They care for him like a son, they really truly do. And I still hate that I know them. I wish we never met. This evaluation seemingly was the first of many, so I better figure out if this process is for us or not, and figure it out quickly. I then got into my car, and had one of the painfully deepest cries I have ever had. I hurt so bad as I drove away from him. I should be protecting him. I should be kicking them out of my house.
But at some point, it can’t be about what hurts me, it needs to be about what is best for our son. That has absolutely been one of the most difficult parts about all of this, trying to figure out what is best for him, without having our emotions affect the decision.
With that said, we let them stay. We let them stay in our lives and we gave them part of our responsibility as his parents. We let them teach him and love him. We let them shape and mold him. We swallowed our pride and did what we believe was/is best for him. I guess only time will tell.
2. The second moment was his ASD diagnosis. Even though we were prepared, and totally understood that we would leave with a diagnosis (and we did assume a high functioning diagnosis), it still was more to handle than I thought. However, there was no giant moment of grief. No overwhelming moment where tears fell and I prayed to God(God is a whole other topic, and I will spare you for now). The emotion was slow setting, and took an hour or two for me. It was like additional waves of gravity pressing down on my shoulders in almost perfectly timed intervals. It was like I was on a different planet, probably how my son feels every day. I could feel it setting in as we made the drive back home, getting heavier, and heavier. It was becoming reality. I had a piece of paper that said so. Now we knew. Now we knew for sure, that the road just got a little longer. It confirmed the number of hurdles in front of our little man… More than he ever deserved.
But don’t be upset. This is not about pity. This is not about sadness. This is about our life… Our wonderful life. It won’t be easy, but he can do it. Whatever IT may be.
Now on to the good. No. On to the GREAT.
Here are the two moments that give me the most hope.
1. The day he got truly excited for cake! I know that might not make sense to the “normal” parent, but it probably makes sense to those of you reading this. This was also pre-ASD diagnosis, but this was the really first big moment I knew he had it in him. It was St. Patrick’s day 2014, and we were at my sister-in-laws house. He was 2 and 1/2 then, and we had not seen any type of excitement out of him. None, at least not in your typical 2 year old excitement kind of way. We finished dinner and then Auntie grabbed dessert. She called Greyson over to make sure he was the first one to see it (as we always had done previous to this dessert, with next to nothing for response). We expected him to just walk away, or maybe stare at her blankly. But this time was different. And as naturally as you can possibly imagine it, Auntie showed him the cake (Greyson had just started using basic words at this point also), and without any type of hesitation, his face lit up brighter than the sun and he said “YUMMY!” He meant it. He truly meant it. And this time it was different. It was fluid. It made sense. He was genuinely excited, and genuinely engaged. I still remember how I felt, even right now as I type this.
It was overwhelming, and I cried as I sat in my chair. I cried for so many reasons, but mainly because I knew there was hope. I was so proud. So happy that he was excited. I did not think too much about anything, I just smiled and bathed in the moment…
The moment he was excited for cake…
2. The day he was born. This is a generic pick, I get it. But what do you want me to say. You know. You know exactly how I feel. A feeling that can be put into words in an infinite number of ways, yet will still never say everything that you need it to. It was miraculous. When he arrived, I could have faded away forever. Weird, I know. He was delivered via Caesarean section (the birthing process did not go as planned, as seemingly, not much does.). When I took him to the nursery, my in-laws waited anxiously for some news. Was it a boy or girl? And as they pounded on the glass from outside asking me for the answer… I stared in awe. I stared in awe of EVERYTHING. Everything he already was. Everything that he could be. But I… I could not find a way to use my mouth and say the words, “It’s a boy!”. When I finally got to bring him to his mother in the recovery room (to this place that was his home for 8 1/2 months) and handed him to her… Well that… That was the deepest cry I have ever had. What an overwhelming amount of indescribable emotions. Holy smokes! Knowing that I was part of this boy, and was able to hand him to the most deserving mother in the world for the very first time, is something I will not try to explain. There are not any words. Thanks for understanding.
You see… There is no beginning, or end to my thoughts. And the same goes for our families moments. They are a never ending sequence of up and down emotions that will most certainly carry us down the most significant journey we will ever take.
The life of Greyson James.
No matter what, we will keep having these thoughts. Our family will keep having these thoughts.
And we love.
We will continue to evaluate who we are as his parents, and make sure that he always has the best chance to be whoever HE wants to be.
We HOPE that you do the same.