The Circle of Autism – Part 3 Blog
The last thing I’ll talk about as far as the negative aspects of this circle of Autism is the effect on the marriage. Marriage is hard, right? Marriage is beautiful and a gift from God and most always is awesome, but it’s also hard work. Throw in a kid with special needs and it kicks it up a notch!
For some reason, Presley didn’t really bond with Bob when he was little. He always wanted me to do everything for him and be with him, not Bob. It got so bad that I had my Bible study group praying about it. It really hurt Bob’s feelings, understandably so. When Presley was about a 1 ½ years old, Bob and I had a HUGE fight. I remember that I was standing in our bathroom and Bob walked in from work. Presley was in our bedroom watching Dora. I don’t remember what happened to cause the argument, but I remember that Presley had hurt Bob’s feelings and Bob was upset. Bob said angrily, “It’s like he’s autistic!” I.Was.Furious. The only time I had even heard of autistic was from the movie Rain Man. And I knew that Presley smiled at me, he had conversations with me, and hugged me – how could he be autistic????? I snatched Presley up and stormed out of the house. I put him in my car and we drove around and around until I had calmed down. I don’t remember the rest – like what happened when we got back from our drive…probably a good thing. It’s crazy to think now that Bob was actually right!
Of course parents disagree on parenting from time to time; that’s natural, right? But when you have a child on the autism spectrum, it becomes a little more difficult. For me, I always have autism in the forefront of my mind – it always comes in to play when I’m dealing with anything concerning Presley – from school to sports to church, everything. Bob tries to make it nonexistent. He wants Presley to overcome the obstacle as much as possible and push him in all aspects of his life, despite the autism.
Somewhere in between there is probably where we both should be – and where we both try to be, but man it’s hard. There have been MANY heated arguments with me saying “You’re pushing too much!!!!” And him saying, “It can’t be an excuse!” I vividly remember me being in the bathtub and Bob in our closet and me yelling, “You’re RUINING him!!!!” And then getting out of the tub and cleaning the house until after midnight…I was fuming and couldn’t sleep. I was convinced that Bob was ruining Presley and he wouldn’t listen to me. I remember looking out the kitchen window into the pitch black and watching a spider wrap it’s prey up to eat later…and thinking, why does this have to be so hard?
With a typical child, you push them – you can push them past their limits. But with kids on the spectrum, it’s like, how far is too far? Should I push? There’s a real disability with this person…so will I harm them if I push? And when you have two parents on opposite sides, it’s so hard y’all. It just brings in an added dimension to the marriage that isn’t there with typical children.
OK…I’m tired of crying, I’m tired of talking about the negative aspects of the circle of Autism, and the heartache. I’m so ready to move on to the positive, aren’t you?
I’ll start with Presley, since he’s the star of this show anyway. J I have watched this child overcome obstacles, and watched him succeed IN SPITE of Asperger’s syndrome. He used to be aggressive in certain situations, but now he’s not. He’s learned the language tools to use instead of just acting out. He deals with his sensory issues and explains to people, “I’m just a little more sensitive than you.” It’s so inspiring. He knows that he has Asperger’s, he knows that he will always have Asperger’s, but he dreams of playing either in the NFL or NBA – he totally believes that they are both very real options for him. And he wants to live with his momma and daddy as long as possible. One night, after we had already tucked him into bed, he came down the stairs. Bob and I were sitting on the couch and we looked up to see him standing in front of us with crocodile sized tears in his eyes. He said, “When I play in the NFL, I won’t be able to see you everyday.” I said, “Baby, if you play in the NFL, your daddy and I would fly every single weekend to watch you play and stay with you!!!”
The Asperger’s keeps him a little immature, and in a way, I absolutely love that. He will hold my hand anywhere, kiss me smack on the mouth in front of his entire class and not even think twice. When I drop him off at school, he always turns around and waves to me. I yell, “I love you baby” out the window and he yells, “I love you too mom!” He doesn’t care what other people think because he doesn’t really know to care what other people think – and he just wants to make me happy.
I mentioned the story earlier about Presley defending the boy who didn’t invite him to his birthday party…this is another thing that I love about Presley. He doesn’t judge people. He doesn’t ever consider himself above anyone else. There’s no ‘cool factor’ that Presley considers with others. He just accepts people for who they are and gives everyone more than one chance, even when Bob and I feel like maybe he shouldn’t!
Here’s an amazing positive story about the circle of autism that comes from Presley’s fourth grade year – the first time around. His elementary school goes from Pre-K to fourth grade. I mentioned before that we didn’t get the Asperger’s diagnosis until right before third grade. During the middle of his fourth grade year, we decided (after much deliberation, arguing and prayer) that we would have him repeat fourth grade that next year. Socially, we thought he would do really well with the kids that were a year younger. He definitely didn’t need it academically, but because of the Asperger’s, we decided it would benefit him.
The time came for the fourth grade advancement ceremony. It’s a big deal at his school. The fourth graders get all gussied up, invite all their family members, and attend a big ceremony. Obviously, we weren’t going to have Presley go to the advancement ceremony since he wasn’t going to advance to fifth grade. I emailed his teacher to let her know that we were keeping Presley home the day of the advancement ceremony. She said that some of his classmates had been asking her why Presley was being held back. She said they didn’t understand because he was so smart. They all knew that he was being held back, because he told everyone in his class…he was pretty upset about it. I told Presley’s teacher that she could tell the class about his Asperger’s and our reasoning for wanting him to repeat fourth grade.
My parents had come in town from West Memphis to visit and celebrate Presley’s fourth grade year. We took him to the mall to eat pizza and get a double doozie cookie (two of his very faves) and we got him an Xbox. We wanted him to have a positive experience and celebrate his wonderful year, despite the fact that he was going to repeat fourth grade.
His teacher emailed me that afternoon and said, “Wait until you see what Presley comes home with tomorrow after school.”
The next day, as I saw my kids walking towards my car, I noticed that Presley was holding something and had a huge smile plastered on his face. As he climbed into the car, he looked at me and proudly said, “MOM, my classmates voted me the Best Classmate of the Year! Nobody else was even up for it! Just me! It’s never even been given out before! Wait until you read this mom!” When we got home, we quickly got out of the car and hustled inside to see the book. Every single person in his class had handwritten him a note and drawn a picture. Some drew pictures of race cars, some drew football fields, an Arkansas Razorback – all of his favorite things. But the notes that went along with the drawings stopped me dead in my tracks.
“We will miss you next year.”
“You’re going to face many challenges in life, but never give up.”
“You’re the smartest person I’ve ever met.”
“You have the best comebacks!”
“I feel very sorry for you having autism. I never knew. If I had, I’d have definitely treated you differently.”
Hot tears streamed from my face as I read these precious, heartfelt notes to my child, who so often seemed to be left out. You see, all it took was just a little awareness and explanation of what made Presley a little different. Now they understood. I realized then the importance of autism awareness…Perspective… Understanding…Acceptance.
I can’t tell you how many times Presley has read through that booklet. Probably hundreds. And that next year, when he repeated fourth grade, there were days when I would walk into his room to find him flipping through that booklet with a smile on his face. It gave him such self-confidence. Especially when he’s had a rough day, he’ll still pull that booklet out, sometimes with big tears in his eyes and a quivering chin. Proverbs 16:24 “Kind words are like honey, sweet to the soul and healthy for the body.”
Bob and I have two other children, Bella and Cross. Bella is 10 and Cross is 7. Bella and Presley get along great; Cross and Presley, not so much. Cross is a little too young to understand Presley’s Asperger’s, so he isn’t quite as patient as Bella.
Bella defends Presley fiercely – she’s his protector. She’s always got one eye cocked making sure that nobody is doing Presley wrong. It’s so sweet. She’s also made the decision that she wants to work with special needs kids when she grows up. She wants to open a school for kids with special needs. She has a huge heart for them…and she told me that she hopes that God gives her a child with special needs, preferably Down syndrome. This circle of autism that our family is in has molded her heart in such a way that she wants to devote her life to kids with special needs – how amazing is that? There’s a boy in her class who has autism. He’s really smart, REALLY SMART, but he doesn’t ever do his homework or really participate much in class, so he doesn’t receive ‘bonus bucks’. With the bonus bucks, each quarter they get to bid on prizes from the treasure box. Since this boy doesn’t ever really have any bonus bucks, Bella always asks him what he likes and then she bids on it for him. She has gotten him prizes every single time they’ve had their auction. In fact, some of those times, she hasn’t even been able to get anything for herself because she spent most of her bonus bucks on him. It totally makes my heart explode with pride. I think I’ll keep her. J
Another positive in this circle of autism with my family is being able to be there for others who receive the Asperger’s diagnosis. We know two other families who have gotten an Asperger’s diagnosis with a child since Presley got his. I love being able to give advice, information and be a listening ear…and to let them know that it’s going to be ok. At first, all of the questions and unknown answers start swirling through your head so quickly, that you can get swept away in them and end up feeling totally discombobulated. So I love that I’m on the other side of that and they can see what it looks like a few years down the road. I love being a sounding board, an advocate and a shoulder to cry on.
My friend, Michele, was totally that for me. Michele lives in our neighborhood and I met her years back. She has two boys, and the oldest has autism. Over the years, we were around each other a lot more and got to really know each other. After I got the Asperger’s diagnosis, she was the only person I knew who would understand. My other friends could sympathize, but they didn’t understand. They have no clue what it’s like to have a child with autism. Michele does. She was there for me and continues to be there for me. She loves Presley and understands the challenges that being a parent of a child with autism brings. We celebrate the boys accomplishments and are there to listen and cry with each other when they have ‘off days’ or negative experiences. Michele has helped shaped my view of autism and I want to pay it forward and be that for someone else. If it weren’t for autism, Michele and I probably wouldn’t be what we are to each other now, so I’m very thankful for that.
My family’s perspective on life, on the day to day, has also changed because of the circle of autism. The petty, little things that many people get caught up in don’t even make it on our radar. I don’t care if my kids are considered ‘cool’…I don’t care if people think we’re weird because our kids don’t have iphones or Instagram. Life is simpler through this lens and it’s easier to find the peace and beauty in the simple. I don’t have time for pointless drama, selfish friends, and rude or inconsiderate people. My focus is on the positive, the encouraging and the loving people…those are the people who I want to be around and to be invested in.
Although I mentioned earlier that the circle of autism could have a negative affect on our marriage, it also has had a huge positive affect. I feel like we have been through the fire together…we have cried and grieved together about situations that we’ve faced because of autism, but it has changed us for the better. This may sound really silly, but it’s like when I was a little girl and played the game of Red Rover. “Red rover, red rover, send Melissa right over” – I was such a tiny thing when I was young; I’d always go running over to that other side when my name was called and try to run through two people holding hands and I would get thrown back about 5 feet every.single.time. That’s the kind of picture I have of our marriage now…whatever life may throw at us, we are holding on so tightly to each other, that whatever is thrown at us, it will get thrown to the ground. It just won’t make it through and it won’t break us. We are forever united, not only as husband and wife, but also as parents of a child with autism. That’s something special. We may handle situations with Presley in different ways, we may not always see eye to eye on those situations, we may end up hollering and crying, but the bottom line is this: neither one of us knew anything about autism, much less raising a child with it. But now we’re 12 years into it and we’re proud of ourselves. We’re proud of what we’ve learned about autism; and what we’ve learned about ourselves because of autism, and who our family is at its core because of autism.
I am fully confident that God doesn’t make mistakes. He knew Presley would have Asperger’s syndrome. Psalm 139:13 “For you created my inmost being; you knit me together in my mother’s womb.” God knew the struggles that lay ahead for our family, and He knew that we would have a unique platform to bring Him glory. And that is my goal…I want to advocate for people with autism and help bring awareness to autism and give all the glory to God for the beautiful rainbow of humans He has graced His world with. God made Presley, God loves Presley, and one day God will say to Presley, “Well done my good and faithful servant.” What a joy this circle of autism can be.