Sunday, February 8, 2009

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!"


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 :)


  1. (((HUGS))) Shasta...sounds like you definitely need one!! Hope things get better for you girl!!

  2. WoW. What a day! Im sorry you have to deal with those types of situations :( I started to get teary at the end...but then his note to you made me giggle a bit.

  3. Shasta, I am so sorry you had such an awful day. You and Kasoma are such great parents. I am not just blowing smoke up your you-know-what either. I mean that. My Mom and I have met really awful parents AND children over the years in our daycare and let me tell you, your family is NOT one of those families. My Mom and I were just saying after the last meet up that we want to have you, Kasoma and the kids over for dinner. Aaron is such a sweet kid. I know, I know, it is easy for me to say that because I am not his parent but I adore him because I understand why he is the way he is. I don't blame you for having such thin skin in this day and age. It seems like if you don't have some what of "model children" people always jump to the worst possible conclusions. If people would take the time to educate themselves on ASD and really listen to what you and Kasoma due for your children, maybe then they would begin to understand what you go through on a day-to-day basis. I have said it before and I will say it again, if you and Kasoma EVER need anyone to come over and just give you a break, please don't hesitate to call or eMail. I have NO problem babysitting the kids! Seriously. You don't have to pay me and more importantly, you don't have to feel embarrassed by anything that is said or done because while I may not fully understand what you guys go through as parents every day, I understand enough to know that any kid would be damn lucky to have you and Kasoma as a Mom and Dad. Ed has yet (obviously, as you know) meet you and Kasoma but he already feels like he knows you so well because my Mom and I talk about you guys all the time. Our family has SO much respect, admiration and love for your family. You are amazing people. I really, really, really, REALLY mean it though, Shasta, please take me up on my offer of babysitting. Even if it is just for 45 minutes at first for you and Kasoma to get a quick hamburger. I have dealt with worse kids than Aaron (whom I don't think is a bad kid at all! I am totally in love with that little jackass LMAO I had to use Kasoma's touch!! It was too priceless!!) and Aaron nor Adrian's behavior scares me, intimidates me or worries me. I would LOVE to babysit the kids. Heck, I would love to just come over and hang out and scrapbook or just drink some bottled water with you. I should be a better friend and ask you more if you want to get together but I never want to impose or bother you since I know how much you have on your plate.

    Do you think I could ramble on ANYMORE?! I am sorry for making this so long. I just want all of your blogger friends and you to know what I think of you and your awesome family.

  4. So sorry Shasta! I can't imagine how frusterating that is. (((hugs))) and I think you should take Caitlin up on her offer and go on a date with Kasoma! ;)

  5. Oh Shasta...BIG HUGS!!!!!

    Are there any kind of support groups in your area? Sounds like you could use some other moms and dads that know what you are going through :(

    I hope today is a MUCH better day!!!

  6. Oh Shasta, big, big hugs girl! Hope things get better for you!!!

  7. LOve and HUGS Shasta! I can't begin to know what it's like to be in your shoes, but you are an AMAZING mom!!! That note is hysterical! xooxoxox

  8. YOUR STORY made me laugh and cry. I feel such deep admiration, respect, and compassion for you and Kasoma as individuals, as a couple, and as parents.

    I have thought many times that in life there are trade-off's. You have two beautiful, spirited, humorous, soulful, loving, intelligent children with the man whom you love more than life itself, and equally stunning is that he nor you would trade your lives with each other and your children for all the money, fame and fortune in the world. The trade-off for putting up with lil' jackasses periodically, regardless what their challenges are in life is that you and Kasoma have been gifted true love for one another which sustains you during years together. I, for one, envy you and Kasoma. And those close to you must be so proud of the parents you are during good times and "jack-ass moments".


  9. I'm sorry your day sucked. Motherhood is always so hard, I can't imagine autism being part of the equation. I think you are a superhero.

  10. Well I have seen Aaron in good times and not so good times and he is just a neat kid that maybe just has a brain that is not like everyone else's. I do know some of what you are going through. Remember Jack as a little boy??? Who can forget. Maybe that was God's way of paving the road for you. I also know all about "the looks" that others send your way. A good way to relieve stress is: If you can hear what they are saying, answer them, or tell them off. It brings such a good feeling to the day. :P I always admire how you parent you kids. Each person is given a child/ren that they can cope with and raise according to the gifts they have. You my dear, have a gift of patience and unconditional love. Stay strong, love much and remember to breathe. Love you.

  11. Shasta, it is my clinical opinion that you are AMAZING! I can't imagine what you go through on a daily basis, and you are entitled to days where you just want to scream and quit; however, you are awesome for sticking in there and doing all that you do! Sounds like you and your husband make a great team, which is so important. I loved the note. Great sense of humor!

  12. I just came to your blog via the ranger blog and read this post.

    As the mother of 3 almost grown children who have their share of special needs - oldest(21) is Bi Polar, middle(18) suffers from Anxiety disorder, and youngest (16) is Aspergers - I can tell you I have been there...Many times. You are fortunate to have a supportive husband and it sounds like some good friends. Accept their offers of help whenever you can. It is so easy to get overwhelmed by it all.

    Just remember we all do the best we can with what we have available at the time. God bless.