Wednesday, November 16, 2011

Be careful what you wish for!

We have identified several social skills goals over the past six months that Rye has been working on in therapy, at home and at school.  You know various trials of how would you address a person you know, a person you don't know, etc.   Tonight after leaving speech therapy I decided I was not up for cooking so we stopped at Culver's for drive thru.  I ordered, pulled up to the window, and was asked to pull ahead and wait.

The wait wasn't bad maybe three or four minutes.  A very nice young man came to the window with food in hand.  I thanked him, he thanked me and he turned to walk away.  Out of no where Rye yells from the back seat "Hey Mister, Hey Mister come over."  "I'm over here Mister."  The poor guy looked confused so I quickly encouraged him to come back because I wanted to reinforce the behavior of Rye reaching out.  He came back, walked up to the window and from the back... "Hey Mister, What took you so long?"  Poor guy looks at me with that well are you going to say something to your kid or what kind of  look.  I smile at him, turned to Rye and said "Good job talking to somebody you don't know and I really like the way you used a What question," and I drove off. 

Probably not my best moment in parenting, but I'll take what I can get! 



Tuesday, November 15, 2011

Please don't label my child

I began my day this morning with the usual routine of settling in, checking email and Facebook before officially starting my day.   I read a post by a Mother Warrior I know named Tammy Wheaton.  She has a son on the spectrum and is a wonderful advocate.  Tammy was outraged, as am I, over a clip from The Family Guy where there is discussion in a doctor's office waiting room over "an autistic lady."   The clip is on Youtube if you must see it, it is ridiculous, annoying, and the kind of thing that makes you want to write the President of Fox (I'll bet Tammy will), etc.  

Everything about the clip is offensive but the part that stands out the most to me is probably the part that would not stand out to most people who don't have a child on the spectrum.  Here is the deal folks, the term "autistic" is offensive, it makes my skin crawl. People who are not informed about autism don't know this and that is okay we need to educate them.  Using the term has been deemed acceptable for so long and it's origin comes from the official diagnosis of Autistic Disorder.  That being said, I am so glad the change is being made in the new DSM to Autism Spectrum Disorder (ASD).

Our children are first and foremost our children, that is children with autism, folks on the spectrum, individuals with autism, and people.  "Autistic" is a label.  Please don't label my child.

Tuesday, November 8, 2011

"I don't like people mom".

Maybe he understands his autism a little more than I give him credit for?  As usual I am encouraging, prompting and pretty much demanding that Rye participate in social experiences.  Following the Premack Principle to a tea and using positive reinforcement to muddle our way through a play date.  But when it comes right down to it guess what Mom, "I don't like people".  This is the one thing I wish I could change, if I was given a magic wand for one day, this is what I would change.  Until that happens I will keep pushing, keep scheduling those play dates, premacking that schedule and reinforcing the positive interactions!

Sunday, October 9, 2011

Far from "typical"

Wyatt and I were having a conversation tonight and he was telling me about how kids at school ask him questions about Rye sometimes.  I asked him what they ask and he said, "You know like why is he so interesting and how old is he?"  He says he responds "well he has autism and he is eight!"

As a parent of a child on the spectrum it is easy to worry about your child who has autism, it is natural, ever present.  What they failed to tell you when they handed out the "'your child has autism " information was how much it was going to affect your other child, your "typically developing" child.  Having a sibling with autism is far from "typical".

Wyatt has many roles.  Son, brother,  interpreter, constant companion, and most importantly the "hawk".  Not much gets by him.  I love hearing him tell Rye how he should not do something because "he will get in trouble with mom" or "it's not safe".  When we don't know what the heck Rye is talking/scripting about, Wyatt is quick to jump in to inform us what movie it is from.  I'm glad they are friends, I'm glad they love each other, my biggest worry ever is that if this changes no one will be around to look after Rye when we are gone.  My second biggest concern is that I don't want Wyatt to be resentful in anyway about the situation because he thinks he was not given the time and attention he needed because his brother needed it more.   I have to try everyday to make sure that Wyatt knows how much I love him and that he is far from "typical" but in a really extraordinary way.  

I think it is essential to be open and honest with siblings from a young age.  Find a sibling group, educate them about autism.  Here are a few links to check out for more information:

http://www.autism-society.org/living-with-autism/family-issues/siblings.html

http://www.autismsupportnetwork.com/news/siblings-perspectives-some-guidelines-parents-332881




Tuesday, September 27, 2011

Perspective

Never underestimate a child's ability to put things into perspective for you. I am always so worried and concerned about how other children treat Rye, will they like him? do they think he is weird?  I was doing exactly that tonight while Rye was playing with a friend.  She was attempting to play with him and he was "doing his own thing" as usual.  She asked him a few questions and he had a somewhat bizarre answer.  She leans over to him and says, "Rye I love the way you always look at things in a different way".   He looked her right in the eye and said "thanks, that's my scooter but you can play with it".  She laughed and down the hill they went.

I have to remember to keep things in perspective by opening my mind more to the fact that he is going to be okay.  He can learn to engage more with people, he can learn to read, he can  learn to be more socially appropriate.  Here I am the one advocating for him on every level and when it comes right down to it I am also the one who is judging him the most.  Note to self...stop doing that! 

Sunday, September 25, 2011

third time is a charm

I haven't posted to this blog in eight months.  I'm a slacker.  It's true.  Okay so I'm not really a slacker (most of the time) but I am a very busy working mom.  I have revamped my blog and it is now called Autism Pirate.  I'm hoping to commit to writing and sharing information at least once a week.  Well that is my goal, I guess we will have to see if it really happens. 

Sunday, January 2, 2011

Still around Still busy!!

So much for my "I'm going to write more on my blog" thing! It has been another 7-8 months in between entries. I guess I will add it to my new years resolutions. We have had an extremely busy summer and fall. As planned Scott and I both took a leave of absence in August and we participated in the intensive family program at Touchpoint Autism Services. Rye finished up behavior therapy sessions with Janice at the Thompson Center and in September he began a Social Competency Program that consisted of 2 group sessions a week for 12 weeks. He also has received 2 speech therapy sessions a week for the past 6 months and will continue with 2 a week sessions starting again at the end of January.

Having a Para at school has been fantastic and Rye's Speech Pathologist at school is great, working with him 3 days a week. I am so happy to report that he is doing awesome!! I mean really awesome. He is looking at us, talking to us, retelling a story the right way. He does continue to script a lot of his play and conversation however he is more "present" all of the time.

Both boys continue to enjoy 2 a week swimming lessons which continues to help with focus and listening and following directions. Rye has a special connection and bond with his swim coach "Mr. Scott" and we are so happy to have somebody so vested in the kids.

Over the summer I fulfilled a bucket list item and met and attended an all day training with Temple Grandin. All I can say is amazing!! It is so interesting and exciting to meet somebody on the spectrum that has figured their autism out and how to cope. I really am hopeful that Rye will be able to the same if we keep working hard.

Wyatt continues to excel well at everything! He is competitive and sweet natured all at the same time. He started preschool in the fall and is happy with being around more kids his age.

The Shade's are hanging in there!!