I’m Just an Autism Mom- Making Things Up As I GO!!!

As I try to write about something that left me so raw, so emotionally drained that I just could not help but fall into bed last night exhausted; I have the boy in the other room Screaming “POW”, “WHAM”, THWAP” as he watches his batman DVD and the girl is sitting behind me giggling over an online episode of Victorious she is watching on the Ipad. This is my life! It is noisy, loud and totally chaotic and I would not change a moment of it! That is not to say that I would not prefer to fast forward thru some parts of it and speed up to get to the happily ever after parts I so pray we all have. Although then I would not appreciate those endings when I got to them I guess. Anyway  I digress.

The point is that as I try to write, to capture the true importance of what happened last night, I know there is no possible way it is going to happen. I am unfocused, one ear tuned into what is happening in the other room and behind me at all times. My attention is torn, the way it is always I guess.But even if I had focus and quiet and the ability to write so well that you could feel as if you were actually there, I still don’t think I could possibly express what happened.

Yesterday started out pretty normal. We ran errands. In fact I was even going to post on my Facebook page that we actually made it through an entire grocery store trip without one complaint, argument or meltdown. MAJOR ACCOMPLISHMENT!  We came home, and still it was a high. The kids helped me bring in groceries and then played quietly while I put them away and started dinner. We ate and had wonderful conversation. I was on the high of all highs actually!

After dinner when I went to walk the dog I noticed all the other neighborhood kids were outside enjoying what was actually a cool summer evening. I ran back inside to invite my children out to play. Grace needed no prompting… Jay well as many of you can relate to when faced with a chose of watching his favorite shows on TV or going outside where he would have to socialize… you see where I am going here. But to my surprise he chose to come outside! I was beyond thrilled. We have lived here a month now and he has rarely made an effort in that time to play with the other kids.

The kids were already in the middle of a game of tag and Grace easily incorporated herself into the game. I sat back and watched wanting so desperately to interfere but knowing that Jay needed to do this on his own. I beamed with pride when I heard him say to the kids, “Can I play too?” To other parents this may not seem like a big deal, but to an autism mom or dad… those words, those beautiful words, are pure gold!

The kids shrugged and said sure and then tried to tell him what team he was on. But Jay not knowing the rules got confused. When Jay gets confused about something he does whatever he can to try to get a hold of the situation. In this case that meant him trying to take over the game and tell the other children how they should be playing… HIS RULES. Well as you can imagine this did not go over well. The other children started to protest, Jay started to get upset. I looked to Grace to see what she was going to do. Would she try to smooth things over, try to explain  to the kids what the problem was… the reaction I so prayed she would take… or would she side with the other kids, wanting so desperately to fit in, be part of the IN CROWD. Much to my disappointed she did the later. She even went so far as to yell at Jay and isolate him even more. Jay of course became emotional and ran from the scene. My Mama Bear instincts took over and I went after my boy who thankfully stopped himself before he went into the street. Instead he plopped his crying self onto the sidewalk and did his best to try to pull himself together. He was half way in the middle of a yoga pose, breathing heavy in and out when I heard one of the other kids say to Grace, “What is the matter with him?” It was curiosity  mixed with concern and would have been the perfect opportunity for Grace to educate her friends to explain, “My brother has Autism. He gets overwhelmed sometimes. My mom is with him so he’ll be okay. But thanks for asking about him!” But Grace did not say that. Grace did not come over to see if he was indeed okay, she dismissed him. Ignored the situation… even rolled her eyes in disgust! The same reaction that the little girl I wrote about in the post I A letter to the mother who rolled her eyes at my son did!!!. (CLICK HERE TO READ IT IF YOU HAVE NOT ALREADY)  Perhaps it was a typical almost 9-year-old sibling reaction… but we are not the a typical family. My heart broke. If the other children saw Jay’s sister treating him like that… well how do you think they would treat him?

After making sure Jay was OK I called Grace over and told her that we are a family and family looks after one another and that the way she treated her brother was unacceptable. In fact that was an unacceptable way to treat anyone whether they were family or not. She argued with me saying how Jay was not following the rules and how he was not playing fair and all the other typical responses that siblings do and say when they are trying to get out of trouble. And I stood there staring at my girl and my heart broke even more.

Once inside the house I tried again to talk to her. I tried hard to explain how I was not even mad, I was sad. Disappointed. She sat there unsure of what I was trying to say. I told her I was going to stop blogging and writing because everything I do, everything I write and advocate for and beg other people to do, to be tolerant, compassionate and understanding… how could I expect others to do it if I could not even get my own child to do it! I know it was a lot to put on a 9-year-old child but I was hurt and sad.

Then it happened… somewhere the words just came out. I am crying as I write this just thinking about it.I admitted to my child something that I have never admitted out loud!  I pulled my girl onto my lap and I said,

“I  know its hard. I get it really I do because it is hard for me. I say all the time that I want everyone to accept Jay for the way he is but deep down I am thinking it would be so much easier if he was more like everyone else.”

(Saying the words out loud was freeing! I love my boy. I love everything about him which means I should love his autism? Or does it? That is a different post. Anyway I went on to tell her)

“But as hard as it for us just think how hard it must be for Jay, who is smart enough to know that we all are thinking that deep down.”

The tears that poured down my daughter’s eyes were no longer ones because she was in trouble… they were tears of sadness.

We continued to  talk and talk and talk! I realized that my girl really did not get as much as I thought she had. We throw around the word AUTISM and I advocate and do what I do and just assumed that she understood. How so wrong I was. So I explained in terms that she could understand what Autism really is, how even though this is what I think it must be like for him, i will never really know because I am not in his brain… his wonderful big and beautiful brain. We talked about how Jay gets when he is upset and how when he is overwhelmed and that volcano inside him starts to erupt, that he does not always make the right choices. How he could have run into the street and gotten hurt. I talked about how even though she is the younger sibling, she needs to keep an eye on him, because that is what family does. We look out for one another. We talked about how in his own way Jay would do anything for her. And he does too!

We talked and talked and talked.

I was honest and told her how I don’t know what I am doing most of the times and I am making it up as I go. I told her how scared I was to send Jay out into the world because I don’t know how people will treat him. I told her that is why I write my blog so that I can make more people aware of him so that he is treated nicely. I talked about to us he is just JAY but to others he may seem well… different. We talked about how people in the world treat different people. And we talked about how important it is for us to help Jay figure out where his place in the world is and make him feel welcomed and encourage him to be a part of our world!

And of course we talked about Grace. How special she is. How I know she has a heart as big as Texas and why it makes me sad when she does not let others see it! How what she says or in this case what she did not say but did makes a HUGE DIFFERENCE!

Then Grace asked to be excused.  I thought she was going to go to the bathroom to wash her face but instead she walked down to the basement where her brother was watching TV oblivious to all the chaos and emotion that was going on a floor above him. I sneaked down to see what she was doing. She quietly walked into the room and said, “Jay I could really use a hug from you right now. Would you mind stopping watching TV and hug me?” Jay looked up at his red-eyed sister and stood up and hugged her and then he asked, “Are you okay Grace?” and she replied, “I AM NOW!”



10 thoughts on “I’m Just an Autism Mom- Making Things Up As I GO!!!

  1. Sharon
    As you know I have two who are on the spectrum. It’s difficult for them to understand and accept each others’s differences even when they have similar issues. They both demonstrate more patience and acceptance of their friends with disabilities than they do for each other. So don’t feel like the bad mom here. We are all just doing the best we can with what we have on a given day. That includes you and Grace. We want to create this perfect bubble world to protect them from all of the pain we see coming there way. We know in our heads it’s impossible, but our hearts won’t let us stop trying.
    Love and hugs girlfriend…

  2. My son is 29 and has Asperger’s. His sister is almost 4 years younger. She, like your daughter, was put in the position of being the older, more responsible, sibling, many, many times. It’s a difficult road for a neuro-typical child, but extremely rewarding and full of blessings. You were amazingly right to tell her the truth of what’s in your heart. You opened up a line of communication that will prove invaluable on every level and in every facet of both of your lives as time goes on. God bless all of you and thank you for sharing.

  3. Sharon, you are an awesome mom! Perhaps the situation didn’t go as you would have hoped but you sure handled it spectacularly and it ended on a wonderfully positive note! What a special moment you got to have with your daughter!!!! Even with my 14 yr old, I expect her to know and understand and just “get it”. But Henry is still her little brother and she is still a typical teenaged, older sister. It can be heartbreaking but know that all of our kids will grow and learn so much more because of autism-and our world will be better for it because of them! (((((HUGS)))))

  4. Now you’ve gone and made me cry. I had a similar conversation with my now 11 year old when she was about the same age. She got so frustrated with her brother’s idiosyncrasies such as humming in the car. I even remember the exact words: “I’m sorry. But this isn’t something I can fix no matter how much I wish I could.”

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