Showing posts with label SiblingsofAutism. Show all posts
Showing posts with label SiblingsofAutism. Show all posts

Tuesday, February 24, 2015

Not Editing Out Autism


Ben's whole life I've been editing.  I edit out the challenges mostly because I'm a glass half full kinda girl, but also because I want to be fair to Benjamin.  I've come to appreciate it is okay to be a little raw, and a little more forthcoming about the circumstances I edit out.  I think I need to commend my other children in what they have learned to accommodate and live with so that we can continue to enjoy all the activities and fun we have as a family.  When I edit, it leaves out the opportunity to recognize their efforts in helping their brother, or sometimes just putting up with him - they are human after all, but they love him and are fiercely protective of him.

Linus has the hardest role of all.  He is less than 2 years older and it is frustrating to him that Benjamin steals away so much attention.  This weekend was the Pinewood Derby and Linus was very excited to have the family come cheer him on.  Pete and I took the time to explain to Benjamin that it would be loud, there would be lots of people, etc..etc...  We let him wear his favorite jacket with the hood that muffles all that noise and hoped for the best.

Pete drove ahead with Linus and when I arrived I found a good spot to see, and be near the door in case there was a need to depart quickly for Benjamin. (we've learned to take 2 vehicles to a lot of events in order to give one of us an ability to leave if it becomes too much)


When we arrived Grandma and Papa arrived too, so we all walked in together.  See that smile, he was elated to see us there.  This was the first of what must have been 50 turn arounds to check to see if I was still there and still watching.


When the races began, the music was kicked into high gear.  The vibe in this space was electric and the excitement was dripping off the walls.  A very nice woman was standing in front of us unaware that she was blocking Ben's view so he began shouting "SIT DOWN LADY" very loud but thankfully she didn't hear him over the rhythm & excitement filling up the room.  Finally, she did sit down and a song with a low base beat came on so Benjamin started holding his ears and rocking.  He was unnoticed and not bothering anyone so I didn't want to move.  I'd just let this ride a little so that I didn't leave Linus.

*still checking*
Tobias offered to take Ben outside, but Ben doesn't really follow Tobi's direction very well and has a history of running off so I as much as I appreciated Tobi's offer, I thought we could hold on just a little longer.

*He Won!!!*
Linus won the first round and I got to see it and he knew that I, his Dad, a few brothers (others were working), and his Grandparents were all there to see it.  This guy has really had a rough year and to see the look of elation on his face still fills my heart.  Meanwhile, Benjamin had placed his head on his chair and start to beat his head into the chair a little in a stemming way of trying to find comfort.

*checking again*

Benjamin has gotten his head stuck in the chair now, which took a comforting activity straight to a full on meltdown in about 2 seconds flat.  I'm thankful for the noise because everyone around us was blissfully unaware.  Pete and Isaac were over on the side and had been randomly peeking over to make sure Ben was okay, they also knew the noise would be too much.

I'm absolutely torn at this point.  

We've had several tear filled break downs from Linus because of his trying to grapple with all of Ben's difficulties. 

 I get Ben's head free, Tobi is desperate to help, Isaac and Pete are waiting for me to give the signal of what we should do when my Mom says "Let me take him outside" and looks at Ben with the eyes of a Grandma and asks him "Do you want to go outside"?  He settles enough to nod "yes" and takes her hand (Ben doesn't take anyone's hand easily, and only a very few of us can count on him to take it at all).  Off they go and the storm settles a bit.



Tobi went to check on Grandma and Benjamin a few times so I would know if he was melting down on her or okay.  Grandma found a playground and he was playing.  Linus won the next round as well.  His happiness was so fun to watch.  Papa stayed to cheer Linus on with Pete, the boys and I. 

 Linus loved it, LOVED.IT!

*still checking*

For the final round we let Grandma know so that she could watch him get his ribbon.  Pete, Grandma and I all stayed at the door so Benjamin could remain in the hall (where the noise was a bit more muffled)...and he was happy.  When he began to get overwhelmed again, Pete sat down with him and showed him videos on his phone (Ben loves for us to take videos of him and then watch them, it calms him down to see them so Pete and I both have several to chose from when the situation calls for it).  

We could not be more proud of Linus and are so thankful we got to see him enjoy this moment.  If my Mom and Papa had not been there, I would have needed to leave and couldn't have been a part of this, building more frustration for Linus.  It isn't like he needs me to be at everything, but to keep missing everything can be rough on his little heart.  I'm so glad we had this day, and he had the Pinewood Derby.  He absolutely loves Scouts!



This post could have edited out all the Autism and been a great post about a fun day, and that is what I usually do - I crop out, edit out the Autism because what our family takes away from this is all about Linus or the fun we had.  

We don't focus on the Autism, we focus on Ben though. 

 I realize that we've just learned to do this and we dismiss the challenge as par for the course.  The older boys are great, and understand but for Linus it's like ignoring the white elephant in the room and he doesn't understand while he DOES understand. 

 It is hard to explain.  

I plan to share more posts that don't edit out the Autism, but I also will continue with my style of blogging which is to share what we take away from each of these moments as a family because that is only good memories of a time shared together.




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