a little attitude

The past several weeks Jake’s behaviors have been up and down. I’ve mentioned before how he is like a 3-year-old at times because he’s discovered he doesn’t have to do everything we say. Of course he is required to do what we ask of him but he thinks he doesn’t. Makes me smile in a way. Jake is thinking more for himself and able to verbalize those thoughts more and more each day. But the attitude, his constant use of the word ‘no’ and my least favorite “I can’t”. Oh, and let’s not forget the crossing of his arms and turning away from me when I am talking to him is just the best (sarcasm)! We had this conversation a few days ago;

Me: Stop crashing into the couch.
Jake: Why?
Me: Because I don’t want you to hurt yourself, okay?
Jake (after pausing to think): I won’t hurt myself! (He crosses his arms and gives me the “look” and turns his back to me)
Me: Yes, you will! Do as I asked and quit crashing into the couch.
Jake: I. don’t. like. that! You’re mean!
His arms are still crossed and trying to act mad but there is a hint of a smile on his face. He stood like this for a minute, waiting for me to react. I just looked at him and said “I’m sad that you think I am mean because I don’t want you to get hurt.”
Jake continues to look at me but doesn’t crash on the couch anymore.

The conversation went on a minute with me explaining that I wanted to keep him safe etc. But afterwards, when he was back to being a good listener (we use this term a lot), I was in awe of his verbal and thinking skills. This time last year he would have cried and not said anything when I told him to stop. He wouldn’t have asked ‘why’ because that word was not in his vocabulary.

I am still not used to him questioning me. I am really not used to him talking to me without me prompting a conversation. 

The other night I was reading Jake a story at bedtime. We were reading a book called “Pete’s Big Lunch”; in the story Pete is making a huge sandwich. In the middle of the story Jake says “Hey, I like a chicken sandwich!” I said “you do? that’s great!” and he said “I like it with the rounded bread but I don’t know what that is called.” I ask if he is talking about a bun. Jake said, “YES! I love chicken on a bun, it is gggoooooddd!” I almost didn’t know what to say.

Seeing his progression of behaviors and speech over the past year has been hard but it feels so good to see all the years of therapy coming through. Jake’s had a few weeks at school where he was crying, falling to the floor and telling his teacher or aide that he couldn’t complete his work. He quickly learned that these behaviors were not going to work. Fortunately, his teacher is on the ball and worked with Jake’s resource teacher where they created a behavior plan; it seems to be working and he has had some great days. Like any kid Jake wants to push the limits and see what the consequences will be if he goes too far.

I am pleased that he is testing to see what will be allowed and what won’t be. I am overjoyed that he is using his speech to tell me he loves me and even saying that I am mean. I am glad he is able to understand how the consequences can be good and not to so good. Although it isn’t fun to go through the daily battles; I get so frustrated and it can be really really hard! But I am seeing that Jake is learning, processing information and able to understand more each day! And for that I am thankful. 

 

 

 

 

 

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Autism Awareness & Acceptance

What comes to mind when you hear the word Autism or Autistic?

Autism Society explains autism in this way; “Autism spectrum disorder (ASD) is a complex developmental disability; signs typically appear during early childhood and affect a person’s ability to communicate, and interact with others. ASD is defined by a certain set of behaviors and is a “spectrum condition” that affects individuals differently and to varying degrees.”

June 26, 2011 was the day we received Jake’s diagnosis. We were told his autism was moderate to severe. I was told that he might not ever speak, he would probably not have friends and require special care for much of his life. As I sat in that room I didn’t know what to say so I didn’t say much; I just cried. This doctor was telling me that my child who was full of smiles and who was adventurous would basically not make an impact in this world. Those are not the words he used but he might have gone ahead and said just that. Once we were home I looked at Jake on that hot summer day and I did not agree. I agreed with the diagnosis of autism but how could my boy who laughed, said a handful of words receive such a doomsday report? I didn’t see it and I was bound and determined to learn as much as I could and prove that anything was possible!

From the time Jake was 18 months until he was 5, he received countless hours of therapy. Not to change him but to help him. Early intervention is so important and we wanted to do all we could to help Jake be the best he could be. I had some specifics that I wanted to ensure didn’t get lost. I wanted Jake to keep his happy demeanor. I didn’t want him to lose that smile. Two of my most favorite therapists would tell me, ‘don’t be afraid to trust your instinct. Hold on tight to the things you want for Jake’. I knew I didn’t want Jake to be like everyone else. I just wanted him to be Jake and wanted to help him find that he could do a lot of different things. Like any other parent, I want him to be healthy, happy and to feel and know that he is loved. Jake wouldn’t be who he is without the spinning, the crashing into things, the need to line toys up over and over again, repeating things he has heard over and over again and he wouldn’t be the boy I love with all of my heart without autism.

This year we will have lived with the autism diagnosis for 5 years!! I have learned a lot and many times Jake has shown me the way. He is an incredibly smart boy, he loves people; he actually told me the other day he has a best friend and he loves going to school. This face of autism is not what you might see if you google kids with autism. This face is purely his own and I wouldn’t change him or his diagnosis for a minute.

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The things I would change are the challenges he faces every single day. He has a hard time sitting in his seat and just listening. Jake needs to move and fidget. Many times he pops out of his seat and is asked to sit back down. I am fortunate that his teacher sees this for what it is and not that he is disobeying her directions. Yes, Jake needs to sit and listen but his teacher and the special education staff at school have given him some tools to help make sitting easier. They give him breaks so that he can walk around, jump or do whatever it is his body needs at the time so he can come back to the group to listen. When Jake is given these breaks he is able to follow instructions, complete his work and earn the praise he loves so much.

Jake told me one night that his brain tells him listen but his body wants to do something else. He is exhausted when he comes home from school each day because he works so hard to follow all the instructions that are given. At home he is moving, nonstop. If you were to drop in my house you would see a kid bouncing on his ball, crashing into the sofa and running around. I let him continue this until he goes to bed because it is what he needs. The nights he doesn’t get to move we have meltdowns, he cries a lot and he just can’t focus on anything. I don’t know what it is like to feel that kind of pressure from inside. I asked him one night why it was so hard to sit still and he said “because it hurts if I don’t move.” 

This is one of the several challenges Jake deals with on a daily basis. Autism is difficult. Autism can leave me scratching my head and wondering what to do or how to do something. Autism is a part of my child and it is up to me and my family to help him learn how to handle certain situations; it is up to us to teach Jake the things that are hard for him to learn. Jake can do anything if he is given patience and time to learn.

April is Autism Awareness month. I think it is a great way to learn, understand and accept kids and adults, like Jake, that are on the spectrum. Autism is challenging and a struggle for the person who is autistic as well as the family. A kind word of encouragement, a helping hand or just a simple smile goes a long way!

 

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For I know the plans I have for you,” declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11