Up and Down With Uncle Aaron

Many of you have been wondering how Uncle Aaron is faring with his little nephew, Ryker.  Well, since a picture is worth a thousand words, let me share our family Christmas picture that our sweet neighbor was kind enough to take for us in the middle of some cold temperatures.

You can clearly see the struggle on Aaron’s face.  And also the love that his sister, Andrea, has for him as she helped him tolerate standing there long enough for some pictures by holding his hand.

It wasn’t just the cold that was bothering Aaron.  Not even the promise of eating dinner out right after this was enough to make Aaron smile.

Reality was setting in for Aaron.  Andrea worded it perfectly last night as we talked after Aaron had left the room.

“Ryker has infiltrated Aaron’s life,” she wisely said.  

I can illustrate Aaron’s way of viewing his life by what happened as he and I were getting his blankets on his bed a couple nights ago.  He got two new blankets for Christmas.  Since it’s been so cold, he wants to put both new blankets on his bed along with the three he already uses…for a grand total of five blankets!

I have written before about the order of his covers.  Nothing has changed.  He has decided that on top of his already well-ordered blankets, he wants the Christmas blanket first and the grey blanket on top.  I made the dastardly mistake of reversing that order.  I went ahead with things, wondering if Aaron would mind.  He did.

“Mom, I want the Christmas blanket first!” he said.

“It doesn’t really matter, Aaron,” I naively answered.

“But I want them the way I like them!” he declared.

He was already removing the offending grey blanket as he spoke.  Knowing better than to fight his need for this certain order, I complied while keeping silent.  

Pick your battles, right?

Aaron’s initial reaction to Ryker was precious.  He gave Ryker his special bear, as I wrote about earlier.

Within three days, Aaron had taken back the bear.

Up and down.

After friends graciously took him out to dinner on our Christmas Eve, and then he survived our Christmas day, he was much improved.  After some encouragement from me, he gave the bear back to Ryker.

But the realities of autism rule Aaron’s mind and his relationships. 

Again, look at another picture.  This is Aaron’s place at our dinner table one recent night.  He set the table, and his setting is exactly as he wants…and needs…it to be.  Fighting it is useless and unproductive.

Watching Aaron in every area of his life is exactly as described years ago by M.P. Everard:  “…one is instantly aware of how different they are and the enormous effort they have to make to live in a world where no concessions are made and where they are expected to conform.”

The reality of a baby in our lives, even his precious nephew, is not precious to Aaron.  He sees the laughter and the joy that Ryker brings.  Aaron is not the center of attention.  His egocentric tendencies rebel against this fact.

Conforming to our desire for Aaron to love and accept Ryker is a huge mountain for Aaron to climb.  

When Ryker is with us during a meal, Aaron literally spends the entire time talking about things like the core of the earth, whatever video he is watching, aliens, etc., etc.

Andrea is so good to try to focus on Aaron, but we all know that Aaron also needs to understand and to share that focus with Ryker.

Ryker, the offending nephew.  

The infiltration of the nephew is not acceptable to Aaron.  

“I want life the way I like it!!” Aaron is inwardly…and sometimes outwardly…saying.  

I wish he was only referring to blankets and silverware.  But Aaron is also wanting his immediate family to focus on him when we are all together.  Ryker is not cooperating with that demand from Aaron just by nature of being a baby.

Today I spent lots of much needed time with Aaron.  We went to Wal-Mart, picked up Taco Bell for lunch, watched two episodes of All Creatures Great and Small, and played Yahtzee.  

While shopping, Aaron picked out a cute little yellow stuffed bee that he wants to give Ryker.  I talked to him about how the best thing he can give Ryker is his love and kindness.  I believe, from Aaron’s responses, that he really does want to do that, but his desires are overtaken by how his brain is wired.  He reacts spontaneously to his environment, no matter who he offends.  

So, we keep plugging away as we try to understand with patience the huge task in front of Aaron.  And trust me, sometimes our patience wears very thin.

Our prayer is that Aaron will learn to love sharing his love with Ryker as much as he loves sharing stuffed animals.   

Through the ups and downs of this new journey, I do not want to forget all the goodness of God that He has shown us.  The answers to our prayers have been amazing.  

May I not lose sight of the fact that even when I feel like Aaron’s heart is out of our reach, his heart is never out of God’s reach.  

Thank you to each of you who are caring and are praying.   

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Author: Patty hesaidwhatks

I'm Patty and I write about our adult son who has Epilepsy and Autism, who still lives with my husband and me, and who is a package full of many surprises and joys and challenges and TALK! Lots of talking, which creates laughter and some other reactions as well. I also write about how God shows Himself to me in everyday life.

39 thoughts on “Up and Down With Uncle Aaron”

  1. The Lord has blessed Aaron richly to have placed him in so loving a family. I have had some experience with those of special needs in institution settings rejected by family. I have always had a special place in my heart for those I call “God’s special children.” I look forward to your posts, Patty.

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  5. Beautiful family picture. It’s so sweet how Andrea is holding his hand. And I thought to myself, Aaron was not about to give up his coat, hat, and gloves for this picture lol. I appreciate your reminder that God can reach hearts. As you mentioned, I too pray that Aaron will learn to love sharing his love with Ryker. Blessings, Patty!

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  8. Praying for you and for Aaron! You are so wise in choosing your battles. In the end, the little things of how things are ordered, blankets or forks does not matter. As you and your family so clearly realize, love is the order of the day. Perhaps, in time, this beautiful little nephew will become less of an object of jealousy. There are surely signs of hope here. Sometimes, those little sprinkles of hope manifest in bigger and bigger ways. Who knows what the future holds. With Aaron, there is no pretending, no pretending to like sharing with this cute little person, no pretending about not liking change. We live in a world where change is so constant. The struggle for Aaron is that much harder than it is for the rest of us. One day at a time, like one blanket at a time, may change the dynamics going forward. The family love is such a joy to see!!! God bless you on this journey, holding hands and hearts together…every one! You are an inspiration to others and that is a beautiful thing!

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  9. What a lovely family photo! Sibling relationships with autism are so beautifully unique and trying. I like to think that no matter what ears look like God is heard. My child with autism was recently told about a baby’s death. When she heard he had passed away and went to be with Jesus her response was so concrete, “I’m not sad mommy, he’s in Heaven and Heaven is the best place to be.” Concrete ways with autism is so hard some days especially with others. Thank you for your post Patty! ❤️

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    1. You’re right, Jody. Those concrete comments can come across as uncaring or too blunt or lots of other things. And when others hear them it can be very embarrassing or even sound insulting. I tease about following Aaron and doing damage control along the way. Bless you, Jody, as you also parent your daughter with autism.

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  10. As hard as autism is, Aaron is very lucky to have you and your family. You understand him and his needs and do your best to take care of him. You will all get through this new challenge, with love, patience, honesty, and most of all, faith. I agree with Linda, you and your whole family are an inspiration to the rest of us!

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  11. It’s been a while since I’ve read the blog, Patty. While I catch up, I pray for Aaron the grace to share the attention with Ryker and for your family, the grace to be continually patient with Aaron.

    You’re loved, and I’m praying for you all

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  13. Continued prayer for you all. When I say I understand…I truly do, we experience the same with Uncle Jeff over here and often times his attention seeking comes out in bodily gas form from one end or another. It stinks, quite literally but God put these guys in our lives for a reason, as you know, and boy I can tell my heart and patience are both stronger from it!! I know that’s true of you all too. Love you, sweet friend!!

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    1. I know you understand so well what all we’re going through. Aaron is still up and down. He really is handling all the changes so much better than we thought he would but still we hope for more acceptance and a show of love. Yet Aaron does NOT think like we do – never has and probably never will. He wants to do good but his needs often overcome what he knows is right. You know. Love you, Alicia!

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  14. Dear Andrea, holding Aaron’s hand for the (handsome!) family photo, to help him feel more comfortable. One day perhaps it will be Ryker holding Uncle Aaron’s hand, offering the support his uncle needs.

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    1. Now this brought tears to my eyes, Nancy. Even now Ryker looks at Aaron with much curiosity as he tries to catch Aaron’s eye and make him smile. Aaron just doesn’t know what to do with that. I know that Ryker has many adjustments ahead as he gets to know Aaron, as Aaron will as he gets to know his little nephew. We pray for all the days and months ahead.

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  15. Patty, I am moved by the depth of understanding you have concerning the characteristics of autism. That is so important, as you well know! But in my experience, not everyone who deals with people with autism have that understanding. I thank God that you do! The fact that you understand him is a wonderful gift to Aaron. That alone is priceless. I will pray with you that Aaron will learn that little Ryker is not a threat to his security. I believe the Lord has has a plan and He will work it out in His timing and in His way. It may take a little longer than we would like, but that’s how our faith is strengthened. God is faithful!

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