Why gifts are sometimes hard in the ASD world

Yesterday was tough.  It was a hard day in the Autism vs. Me world.  I shared it here, and I will share it here as well. 

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Some days Autism really sucks. I have a love/hate relationship with it. Today, it was the latter. Today, it broke my heart and my daughter's.

My little girl isn't girly, and pink has been a four letter word in my house for quite a few years. Gone were the days when she wanted pink socks, a pink backpack and pink bows in her hair. Pink rain boots, pink sheets and pink notebooks. Pink tights, pink plates, and even pink undies. These days, nothing can be pink.   Absolutely nothing.

A few months ago my daughter asked if she could have a pink hoodie. Specifically, a pink camo hoodie. I was thrilled. I asked friends, family and even clients where I could find such a thing. I wanted to go to an actual store, to touch it and feel it. To make sure it not only fit, but that it was the right texture. That the tags wouldn't be too scratchy or the seams too tight, for the one of two sensory driven children of mine.

So I found a store that had this magical thing that she wanted. Wanted it so much she practically asked for one every day for months. I drove 56 miles one way to Cabela's. I walked around the giant camo clothing section a multitude of times to find it. I spent close to an hour searching. The little kid ones were too small, and the adult ones were too big. It was like Goldilocks and the 3 bears. I finally found a rack on the outskirts in the sea of clothing, an oasis of pink camo fleeces.

Lo and behold, there was one in her size. It was camo printed, and it was pink. Only one problem.

It had no hood.

Typically you'd think, it's not a big deal. Yeah, that's what I thought too. That was my mistake and I should know better.

I should know, because Autism doesn't know any better. It doesn't know that 9 out of 10 isn't good enough, or that even 99 out of 100 isn't good enough. A solid "A". It only knows that it is or it isn't. It's up or it's down, right or wrong, black or white. Period. End of story.

Autism doesn't know the excitement this mom knew was going to be in her daughter's eyes. It doesn't know the hour I drove each way just to get this special thing for her. It doesn't care.

It only knows inflexibility, rigidity and boundaries set in stone. It only knows that 9 out of 10 isn't good enough, and that expectations must be met. They must be met, or everything falls apart.

Do you know what happens when a pb&j is expected to be cut in squares, not triangles? Or if a piece of paper is folded that was not supposed to be? A blue marker instead of purple? When Mom and Dad have had a long day and bed time is at 8:59 pm, not 9 pm? When you run out of goldfish crackers and get pretzels in your lunch instead?

When you get a pink camo fleece jacket without a hood?

You get tears and stomping feet. You get screams and a temper tantrum. You get heartache and vicious disappointment. It doesn't matter that it's only about a hoodie and that your 9 years old. The world ends and the sky is falling. Autism doesn't care.

But I do.

I say love/hate because I cannot have one without the other. I can't have my children without Autism. I can't. It is part of who they are and how they were fashioned. How they were built and how their brains were wired.

I sat here tonight to type out my feelings on this subject with disappointment and sorrow weighing heavily in my heart. I had no room for anything else, and it consumed me.

But I am not going to let Autism win today. I am going to fight back, because I care. I too want that 10 out of 10, that 100%, an A+. Sometimes it does, and sometimes it doesn't. But my sky isn't falling and my world is not ending.

And tomorrow I will go in search of a pink camo fleece with a hood. Next time I will cut squares in the pb&j first, or make a paper airplane out of that folded paper. I will have a blue marker in one hand and a purple one in the other. And I will buy a pallet of goldfish crackers, or maybe 2 pallets...

Just in case.

 

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So that was yesterday, and after a flood of Facebook support and suggestions from friends, I am on the hunt again.  I found them online at Kohl's and Wal-mart, and hopefully they will have them in the store as well.

Once again...

...Deep sigh, and I guess I shouldn't be suprised.

Today was the wedding reception of one of my regular clients. I have been doing her and her mother's hair for over 11 years, and we have become friends with the rest of their family. Her nephew is a year older than Aaron and we have spent several afternoons with them out around town.

Every time we go places, especially these types of events, we talk about how to behave and what is acceptable. Everytime. And everytime, he repeats what is expected of him and what isn't. He repeats the consequences of bad behavior and the rewards for good behavior. He knows them backwards and forwards, and backwards again. My husband and I are so consistent, so consistent! Always, everytime, without exception.

So it ends like it does every time, and yet again I sit here ashamed of my son's behavior, even though I know it is not his fault, our ours. We had to leave after not even a half an hour because he started jumping up and down and yelling and screaming, and was out of control. The scary part is that he is now too big for me to just pick him up and carry him out to the car. To pick up an 86 pound child doing everything in his control to evade your grasp is no easy thing!

I feel like we are unable as a family to go anywhere or participate in anything, and it makes me sad. I wish I could just ignore the stares and rude comments of people, but my skin isn't thick enough. It should be after 8 years, but it isn't...

I wish we could go places and enjoy ourselves, instead of just waiting for the bomb to drop. What is it like to go somewhere without a quick get-a-way plan?? How sad is that that we have to discuss beforehand what we are going to do when things get out of control? I know that this is my life, but sometimes I just wish it wasn't.

I am not saying that I wish my kids were different, because I love them so much. I love how Aaron calls me "Mother", and I love that Adrian likes to pick me flowers. I love how he asks me if I have to go to work, because he doesn't want to be anywhere without me. I love how she likes to snuggle with me every morning. I LOVE that he isn't embarassed to kiss his mom in front of people, and I LOVE that she asks me if I am smiling because she made me happy. I love that he can tell me that there are 612 minutes until bedtime, and I don't even have to check and see if he is right, or that August 12 in 1952 was on a Tuesday.... (You don't need to look it up, because it is) I love it.

But I would also love it if I could go to anywhere and not have to wonder if he is going to lose control while we are there. I would love it to do spur of the moment trips to someplace, and I would love it if I could come home and think, "Gee, that was FUN, I can't wait to do it again!" and mean it; the words not dripping with sarcasm.

That's all.

Speaking of tv...

Kasoma and I watched the 2 Autism shows this week on the Discovery Health Channel. One was Autism x6, abot a family with SIX children all on the Autism Spectrum. The other was called Unlocking Autism. Both were very interesting and good to watch!

http://www.youtube.com/user/Dadof6Autistickids

So how was your day?

You know, the question that usually gets a "Oh fine, how was yours?"

Well, NOT today people! Here's a little insight into the world of a family with Autism for those of you that don't know much about it. Yes, I said FAMILY, because although my son is the one diagnosed with the Autism Spectrum Disorder (Asperger's Syndrome), it affects our entire family.

Oh where do I even start?

One of the ladies that I work with has 4 grown children, and she loves little kids. She often babysits for another co-worker, her two dd's, ages 3 and 6. She lives right down the street from me and invited my two and the other two girls over to get out the scissors and glue and make Valentine cards. My ds is 7 and he has met these two girls before, though it had been while. So I think OK, this will be fun, right? All the other play-date disasters are a faint memory and I think this time will be different.

We get to her apartment and it is small, I mean SMALL. It is cute, and decorated very nicely, but with her, my other friend and her 2 dd's, plus me and my 2 dc's, plus 2 other girls that were there? There is tables with cute breakable stuff, oh my... Small warning bells are starting to go off, but I think hey, it's ok, right?

So we all sit around the coffee table with an array of tissue paper, glue sticks, scissors and cardstock. Everyone gets into, and what are my two doing? Fighting over who gets to roll the toy ice cream truck through the 'car wash', which is a tassel hanging from the end of the table runner. Well there is only one, so now there is a kid at each end of the table tugging on the tassels, and did a mention the scissors and glue on the table??

Then ds decides he wants to have juice, so we go into the kitchen, and see all the pizza boxes on the counter... We had eaten leftover pizza from the night before for dinner just before we got there, and he wanted more. So he starts yelling at the top of his lungs that he wants more pizza. he wants more pizza, and getting louder, and he says he is going to keep asking me until I give him the right answer.

Did I mention how small this apartment was? We are around the corner out of sight, but literally like 12 feet away from everyone. The little kids sitting and working on their projects so nice. So now my ds is crying and screaming that he wants more pizza, and I tell him that if he can't calm down we will have to leave, right now. My dd heard me say this and comes running, screaming that she doesn't want to leeeeeeeeeeeeeeeave!! So now both of them are crying and screaming in the itty bitty kitchen. Fun times.


So he calms down after our host offers him something to drink. My dd had already had some OJ, so she goes to get him some, and he starts up all over again that he doesn't want OJ, he wants water, OK fine, he gets some water. He drinks the cup, and fills it and drinks it, and fills it again. By then, we are laughing a bit and cooled off some, so I think, OK, we'll give this one more shot.


so we go back to the coffee table with the Valentine stuff, and he sees dd with the ice cream truck, and it's game on again. He starts yelling that he doesn't want her to play with that and that he is just going to grab it out of her hands if she wont give it to him. The he says that he wants to run away. WTH?? He says he wants to run away from me because I am not nice and sister is not nice, and yada yada. He says he wants to hide, so think OK, I can find a quiet corner and he can cool off and re-group. so he goes around the corner and sits on the stairs for a few, and that is well for a bit. Until dd decides she wants to play on the stairs too...

Both of them are screaming that they want to be on the stairs by themselves and I want the lights on, no I want the lights off. I can feel the eyes of every single person in this little tiny apartment burning a hole in the back of my head.

They know he has ASD, and they know a little about it, but you know how it is with people that aren't family or close friends that don't see first hand. I could tell they were thinking Whoa!

So I maneuvered dd back to the table to make cards, finally, and told ds he had five minutes. He was OK with it and she was happy gluing for a bit. Then I told him he had 4 minutes, then 3 minutes, 2 minutes, and it was all good. When one minute came, then he decided he wants to make cards. OK fine, you can make one, and then we go. Nope, I wanna make a bunch! No, you can make one or we go right now. Back and forth and I said OK, time to go! Dd stands up and put her shoes on right away, which was nice! I turn around to ds and he wants hugs and kisses because you never, sniffle sniffle, give me, sniffle sob sniffle, aaaaaaanyyyyyyyyy!

Hugs and kisses, and then shoes go on, then I turn around to dd, and she has taken both shoes off and flung them across the hallway. Nice. So I get her shoes back on and just as we almost make a clean getway, I hear my ds say to the 3 and 6 year olds "I hate you and don't want to be friends with you!"

OMG

I wanted to die. I said I am sorry to my friends, I am sorry they aren't behaving and I am trying to leave with a shred of my dignity, and I can see that that may not even be possible at this point. I had each one by the hand and said bye and went out the door.

I can imagine the silence that followed our departure! I get about 1/2 way to may car and realize we left all the cards we made inside, but forget it I am not going back in there. A few more steps and I realize I have also left my camera in there. SH*T! So I turn around and open the door, and strangely enough they were both quiet, and I asked ds to apologize to the other 2 girls, which he did. then he reached into his pocket and pulled out 2 hazelnuts (he collects them when we go to the park) and said he wanted to give them each one. I could see they were not sure what to do or say since he had been pretty much screaming the entire time we were there and they were scared!

So off we go out to the car again, and before I even get my keys in the car door I am bawling my head off. THIS is why we don't do play-dates, THIS is why I shop by myself and why we don't do restaurants. THIS is why we don't have any close friends because it is just too hard. No one wants to be around a noisy, obnoxious kid all them time, no one.

I keep thinking after time passes that one of these days he will be OK and we will be able to enjoy being out of our house for a change. I think how nice it would be to go to someone else's house and letting the kids play and not wonder how I am going to get a screaming kid and a preschooler into the car by myself when one weighs 75 pounds when it gets ugly. I want to take them to some kind of music lesson or something, I want to feel like I am a good mother and not one that other people look at with pity or disdain because my kid is acting horribly. They either think I don't care or I am not raising him right.

And even if they aren't, that is how I feel. I have such a thin skin to this and I can't imagine what it will be like on Tuesday when I go back to work and see my two co-workers. I am so embarrassed. And then I am ashamed that I am embarrassed because of how my son acted. I KNOW it is the ASD, I know that. I know he has high anxiety and has to repeat everything over and over and blurts out the most inappropriate things and is rude... He has to have things just so, and I know that.

Our life revolves around him and his rigidity, his routines, his quirks. We do everything to accommodate it and make sure he will have predictability everyday. My husband and I have our schedules set up so that everything is the same, we eat at the same time, he gets the same foods, he wears the right clothes (the Hanes socks with the blue letters on the bottom, because one day I got the ones with green letters and oh what a fun day that was!!), you name it. We do it all. And I feel like it is just the endless cycle of nothing, because he is still obscenely argumentative, disruptive, irritable, rude and so loud all of the time.

And yet other times he is so sweet, and so helpful and every once and a awhile he will do what I ask without arguing and I about fall over because I am braced for this huge struggle, and it's not there! But that is hardly ever, but it is just enough to give me hope...

...And I think just maybe it will be better next time, after this memory fades, and I am sure in about 3 or 4 months we will get an invite to something, and I will try it again.



After I got home I came in and sat at the computer and cried. I took one look at my dh and he took the kids in the other room and got them ready for bed, and away from me for a bit to relax. My son just came in here and handed me this notebook and told me "Daddy told me to write this..."





I think I was laughing and crying at the same time! Gotta love that man :)