asd · aspergers · autism · family · family time · gratitude · HFA · special needs

My Autism Struggles: Part I

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Walking through the autism maze with D has certainly left me puzzled and frustrated at times. Intellectually, I know the answers to my questions, but as a human being, sometimes I just cannot grasp it. 
Sometimes, to be quite honest, I want to say, “You’re too darn smart to give in to the autism, so suck it up and deal with it. OK???” 

Go ahead, you can yell at me for saying it, but if you are the parent of a child with high functioning autism, you can’t tell me that you have never thought the same thing. If you do, I wouldn’t believe you. That may not be the most Christian thing to say or feel, but sometimes I just cannot help it. 
I’m sorry. Really, I am, but I can’t help how I feel. I do, however, hope to find a way to overcome these feelings.
Here’s the deal. We do a LOT for our kids. We have cut expenses way back in some areas and have started trying to better budget in others (and honestly, we also sometimes spend money we should not be spending). This has freed up some extra funds for doing more fun things rather than being stuck in the house every time Chad is off work. 
When we do something, the girls always declare it the best day we’ve ever had. They also thank us repeatedly for whatever it was we did. It does my Mama heart good to hear the sincerity and gratitude in their voices. I know that we are teaching them to appreciate the little things in life. 
D, on the other hand, does not show that same gratitude. When we prompt him with the appropriate social cues, he certainly does not have the same sincerity in his voice. It is much more of an irritated, grumbling, thank you. It’s the kind of thank you that leaves you adding the rest of his intended sentence in your head. You know, thank you, jerk or other things of the sort. 
I completely understand, intellectually, that this is part of the HFA (high functioning autism). I do understand that, but sometimes I just want to ask him, couldn’t you at least fake it for my sake? Good Grief?! Just pretend to be happy and say that you had a good time today.

The example that prompted this post was our adventure on Saturday. We set out to go play miniature golf, but decided that based on the competition involved we would rather not. At the last minute we decided to head over to Monkey Joe’s (the post about the trauma caused by that visit will come later). We went to this place and let the kids run, jump, bounce, and climb for over an hour. Their little faces were as red as a ripe summer tomato when they finally came over asking for something to drink just before collapsing. It was clear they all had a great time and it made visiting that place worth it all! 
Once everyone was safely buckled in their seats and we were headed home, I asked who had fun. Both girls and Samoo all started yelling, ME! MEEEE!! ME TOO!!! D said, It wasn’t as fun as going to Disney. I ignored the statement at first and asked who should tell their Daddy thank you for letting us do this. I heard 2 thank yous from the back and something with 2 syllables from Samoo’s seat. I asked D if he should say thank you and he replied with I said it wasn’t as fun as Disney. 
What I said and what I wanted to say were two different things. 
I said something like, I’m sorry we didn’t go to Disney, we couldn’t go to Disney for one day.

What I wanted to say was, I know it wasn’t as fun as Disney. I know you would like to go to Disney, but frankly, we don’t have an extra few thousand dollars (or however much it would cost) lying around. We can’t just run down to Disney for the day, few days, week, whatever. We don’t have anyone standing by offering to send us to Disney. So, GET OVER IT AND SAY THANK YOU!!!

I completely understand that he has high functioning autism. I completely understand that while we have trained him to say please and thank you, his brain does not understand that you should sometimes say it even if you don’t really mean it. I completely understand that while he knows we are not going to Disney anytime in the foreseeable future, his brain also tells him everything must be compared to Disney because that’s what I really want to do. That does not mean I have to like it all the time, right? Right??
Trust in the LORD with all your heart and lean not on your own understanding; 
in all your ways submit to him, and he will make your paths straight.
Proverbs 3:5-6

This is my autism struggle. Sometimes, I just don’t understand it. The great thing about this being my struggle, though, is that I do not have to do it alone. God says that if I give this struggle to Him, HE will help me. He will take my confusion, struggles, inability to understand this and make it more clear. He will give me understanding through peace and comfort if I lean on Him. 
Isn’t that amazing?
No matter how abundant the intellectual knowledge a person has about a situation, sometimes there is no emotional and spiritual understanding. If we give that lack of understanding to God, He will give us peace and comfort. Some things we may never understand, but peace and comfort through those times certainly makes it an easier road to travel.

I have another autism struggle post coming soon. Autism does not just affect D, it affects our whole family and those around us. I think it is important to let others see that it is normal for everyone who loves the child with autism to have challenges.


4 thoughts on “My Autism Struggles: Part I

  1. We're still in the process of getting an official DX for our 10yo daughter. Two docs suspect Asperger's. I totally understand this post. 1000%. Ours will say Thank you, but follow it up with what she wants next. Like, "Thanks for the movie, when are you gonna take me to the ballet". Geesh kid… I just forked over a fortune for the movie theater.

    I'm looking forward to the post you hinted about. We have some issues with our 7yo dd and I'm suspecting many of them are from her trying to cope with the way dd10 treats her, and the stress at home because of issues with DD10.

  2. Prayers and hugs for assistance with patience and understanding.

    Please find a publisher for your fantastic blog. This will help and inspire so many people.

    Janet

  3. I fully admit I expect a lot more from K than I probably should, and there are times I think she should just get over it and do something. That she is smart enough to KNOW. They aren't cognitively affected, are verbal, why don't they get it! Right, yeah, totally been there.

    K actually does the opposite of D. She will overly thank us for something…ha. It's the same every time we do anything. A big, dramatic, sweet as sugar THANK YOU. Totally scripted, but I think she also totally means it. At least a little. She's a girl, too, though, so that just makes things a bit different anyhow. They clasp on to the manners thing a bit easier. And she really loves Barbie movies and I think copies how they speak. Probably D wouldn't appreciate a Barbie movie, though, right?

    But, yes, I expect K to act typical sometimes. I struggle with not doing that b/c I want to have high expectations, but Autism is Autism…HF or not…

  4. I can understand your struggle. Ryan has moderate/mild Autism and it does get nerve racking at times. Sometimes he is right on with everything and other days it is whine and meltdown central. You just want to tell them to act normal.

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