The Sound of Silence
29 Aug 2011 5 Comments
in Autism, Inspiration Tags: Asperger syndrome, Autism, Big Time Rush, Minnesota State Fair, music
The dog is barking loudly at the Cocker Spaniels next door. Although it is irritating to me, LB is unphased. She is too focused on the chewing sounds exiting from her brother as he eats his dinner.
“I can’t take it!” She screams.
“Make him go in the other room!”
Why do some noises bother her while other sounds are ignored, tuned out and dealt with? Some answers I’ll never know.
Many people with Asperger’s have various triggers. Routines and predictability are the key to maintaining calm. However with LB she craves the excitement of doing new things. Even as a toddler she wasn’t afraid to try activities. A rock climbing wall, a roller coaster or even horseback riding.
So when we attended the Minnesota State Fair this past weekend it was not surprising to me that she begged to go on the Sling Shot, Skyscraper and Turbo Bungy! Needless to say she did not meet the age, weight or height requirements (thank goodness).
Typically when we attend the fair, which is an annual tradition, we visit the birthing barn to see all the newborn animals. We have even witnessed a cow delivering a calf the last few years. We also walk through the stables and fantasize about owning our own horse. We eat foods on sticks and wander around in search of gluten-free options for LB.
This year our routine changed. A popular boy band Big Time Rush was to appear at the fair. News of their concert as well as their appearance at a local radio station KDWB spread like wildfire. Teenage girls camped out to see the boys and crowds gathered as the time of their arrival at the station approached. Our neighbor and friend Big D who is a DJ for KDWB generously and spontaneously gifted the experience of meeting the band and attending the concert to LB and her brother.
Screaming fans, crowds of people and flashing lights did not dull LB’s excitement nor affect her tolerance. She danced the night away, sang to all their songs and it truly was a joy to watch her enjoy the concert just as her peers would.
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On the Road Again
19 Aug 2011 Leave a Comment
in Autism
Road trips with children are always an adventure. The preparation for activities to keep them occupied is key. However, with LB the preparation begins before we enter the car.
The day prior to leaving started with excited yet anxious questioning as to when we would begin the packing. Reminders during the day as well as questioning when we would be getting on the road, and the schedule of who we would be seeing. Suddenly and frantically LB realized that her goldfish “Goldie” and “Swimmie” would be left alone at home with no one to feed them or take care of them.
We had made arrangements for our dog and cat to be cared for, but I had completely forgotten about the fish! How these fish have lived this long is beyond me. We’ve had them for a year and a half. LB’s brother had fish too which died after 2 days. They are goldfish!
LB wanted me to hire someone to come feed them in our home. I suggested they go to her Grandma’s house. That began the line of questioning and worry as to how well they would be taken care of.
On our way to Grandma’s house, LB sat in the backseat holding the fish tank tightly. We had covered it with plastic wrap to prevent “Goldie” and “Swimmie” from escaping. Luckily we only had to travel 2 miles but unfortunately due to worry and fear I was instructed to “drive slow” which I did!
LB gave her Grandma specific instructions for the care of her precious fish. How often to feed them, where to place them and to please make sure the dogs don’t knock them over!
Oh, and if “Goldie” and “Swimmie” happen to “flop out” she was instructed to “very quickly scoop them up and put them back in the tank”.
Problem solved.
Now onto the next line of questioning.
“Do we have enough gas in the car?” LB asked.
“Yes, the tank is full” I answered.
5 minutes later…
“Are you sure we have enough gas?” Said LB.
This is going to be a LONG ride!
A Sticky Situation
03 Aug 2011 Leave a Comment
in Autism, Parenting Tags: Asperger syndrome, Autism, special needs, Tantrum
I have tons of patience, and usually that is the compliment I receive from friends and family. But everyone has a breaking point, don’t they?
My day started with a phone call from my husband who had left the house at 6:00 am on his way to the gym and then work.
“I have a problem. My car is smoking from the back.” He said.
“Ok, so what should I do?” I asked.
“I don’t know. It has a burning smell but is still running.” He answered.
Do I go get him? Should I wake the kids? What exactly did he want me to do?
After chatting a bit more he decided to drive it himself to the mechanic and then caught a ride to work.
Problem solved. Now I can get on with my day. The kids were at camp and I had meetings scheduled with clients.
Then came another phone call later in the day, once again from my husband announcing the needed car repairs. Discussion of excessive costs and the timeline began to stress me out. Needless to say, not a pleasant call.
Then before I knew it, it was time to pick up kids from camp. After being there all day, going on fields trips to water parks, indoor playgrounds and then participating in swimming, camp songs and games, you’d think they’d be worn out. But NO, not my kids!
As soon as their little bodies entered my car, shuffling wet backpacks, water bottles and crumbly lunch boxes, they began with the demands.
“Where are we going now?” Asked one.
“I want to go to another water park!” Stated the other.
On and on they went. I warned them to stop. I repeated that many kids don’t have the opportunity to go to camps. I told them we needed to go home and let the dog out and rest a bit.
“You have games at home. You can do an art project.” I suggested.
“That’s BORING.” They both agreed.
“REALLY? I know plenty of kids that would love all your books, toys and projects!” I was starting to really lose it.
We entered the house. They continued with their complaining. I refused to engage. I did not negotiate. I did however take away privileges. My younger child started to apologize and then found a quiet activity. However LB (my Aspie kid) was getting more heated and more determined to have her way. She opened the refrigerator and then suddenly slammed it shut! Bottles and food slammed together yet luckily nothing broke.
Remember when I said that being patient can only last so long?
Yep, I lost it!
But, I didn’t swear. I didn’t hit or scream or slam anything shut.
Instead I picked up the nearest object which happened to be the Agave Nectar (sort of like a maple syrup) and threw it to the ground. It was a plastic bottle so nothing shattered. However, what did happen was that my kitchen, my shirt, my hair and my feet were covered in sticky liquid sugar.
I will say this. It got her attention.
After the shock of the situation, a bit of cleaning up the mess I was able to get LB involved in an activity (coloring which is for her calming).
Maybe I should start coloring too? 
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Welcome to the Club
06 Jul 2011 Leave a Comment
in Autism, Inspiration, Parenting Tags: Asperger syndrome, Autism, Autism spectrum, Child, Parent
Isolating … the definition of a parent with a child on the spectrum.
An ongoing feeling that no one quite understands your fears, worries, frustrations and daily stressors.
Family members and friends think they “get it” since they watch your interactions, know your child well and in a sense feel connected.
But truly, they don’t know. The only person that really knows is another parent of a child on the spectrum. They are in “the club”.
Photo by Erica Mayer Puke Rainbows Photography
Club Rules ….
No judging
Full acceptance
Support one another
Find humor in situations
Offer a shoulder to cry on
The initial purpose of this blog was to allow readers into the world of a child with Asperger’s. However, through your feedback, comments and amazing response and support, this blog has allowed a community to form. One where we are all connected and where the feeling of isolation isn’t present.
Thank you for reading, for your stories, and for your words of encouragement!
And for those who have passed this blog along to friend or fellow parent with a child on the spectrum, thank you!
More Posts…
It’s all in the Delivery
25 Apr 2011 Leave a Comment
in Autism, Parenting Tags: Asperger syndrome, Behavior, Behavior Analysis, Health, Mental Health, Psychology, Role-playing, Social Sciences
Rarely do we have families and other kids over. I wish we did (or could) more often but truth be told, it’s a crap shoot. LB can be accommodating, sweet, creative and charming. But, if something sets her off it can shift dramatically and quickly.
Sharing toys, having other kids touch her things with their germs is a challenge. There are moments she is unaware and doesn’t seem bothered but then there is an awakening, following by explosive words and behavior. It’s a shift that can’t be controlled. Techniques we’ve worked on with the therapist seem useless during the heat of the moment. She truly has entered another playing field. One in which she is the solo player.
Recently the behavior seems contagious. LB has a little brother who does not share toys easily and also has fixated on germs. LB’s nervousness of using a bathroom or entering another room alone because she is “scared” has now translated onto her brother as well.
How do we explain to him why her behavior is ok (even though it’s not and we’re working on it) while he has stricter consequences? This is a tough situation, one that I’m treading lighting on now.
“LB has Asperger’s. She gets bothered easily by situations and explodes. It’s NOT ok when she does it and it’s NOT ok when you do it. But we’re working with LB to help her improve. You have more control over your feelings so please don’t copy your sister.” We try to explain.
After the storm has settled and I am able to talk calmly to LB about her behavior and the specifics we try to role play what it could have been like.
“If you are bothered and someone is playing with something or doing something that frustrates you, what can you do?” I ask LB.
“I don’t know. Tell them to STOP and Get off or MOVE away from it or they are going to get it!” She replies.
“How about you say, I have a hard time-sharing and get frustrated easily can you maybe play with something else?” I suggest.
“How about GET off Now PLEASE??” LB counters back.
“When you talk in that way, other people and kids think you’re mean and bossy. Is that how you want them to think of you?” I ask.
“No, I’m not mean.” LB replies.
“Then we need to work and practice your delivery and how you say things.” Is my suggestion.
Unfortunately, it’s not so easy. Weeks at therapy, my conversations at home, all of these practice sessions, role-playing and awareness seem like they are effective. But, in the heat of the moment, when frustration hits there are no emotions and feelings more important than her own. And that is the battle we are fighting. That is the battle LB is fighting too.
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