Around the Web

There is always a lots of discussion about "curing" autism. I always wonder what about Luke is due to his autism and what is due to him being a fantastic kid? I wouldn't want to get rid of the fantastic kid, but I sure would love it if he didn't have to struggle as hard as he does. 

Why There Shouldn't Be a Cure for Autism

An Op-ed in the Sacramento Bee written by a dad after a trip to the movies. 

A Night at the Movies Tests Autistic Boy's Family

Some very interesting perspectives on inclusion ...

Sometimes Inclusion Isn't the Right Choice

Why Isn't Accommodating the Same as Inclusion?

A little bit of hogwash to give you a chuckle ...

Circumcision and Autism Linked

And finally, a business in the St. Louis metro area that I just heard about. I can't wait to go shopping. Sammysoap is owned and operated by a great Mom and Son duo all while making a difference in our community with employing adults of ALL abilities! (They also ship!)

sammysoap

10 Years Ago

10 years ago my son and I met for the very first time in a government office in Nanjing, Jiangsu, China. It was hard to hold him. I had a big winter coat and he was in 4 layers of clothes with the outer most layer being a thick snow suit. And as I would come to learn later, at 27-months he didn't know how to hold on. He was concerned but didn't cry when he was handed to me. He loved the musical glow worm I had brought and walking around the office lobby was lots of fun. While he didn't cry, he also didn't talk. I wasn't concerned at all, because after all it had to be scary to have lived your entire life in an orphanage and then to be passed off to a strange white woman. He would always smile and look when I called him "BaoBao" which is what he had been called. He loved to eat and would eat until he looked pregnant. He also loved his bath and having water poured over his head.

10 years ago I didn't know

• My son had autism spectrum disorder, sensory processing disorder, and a language disorder
• That he had a killer smile and a contagious laugh
• All of the wonderful people I would meet in person and on line that would be there to help with the journey
• There was something call hipotherapy where kids get to have OT, PT or speech therapy while riding a horse
• How his very first daycare teachers and therapists would check up on each other to make sure he was being treated right
• How wonderful and caring the bus drivers are that drive the sped buses
• That you talk deficits at evaluation meetings and building on strengths at IEP meetings
• The wonderful organizations there to help
• That he would need 10 (and counting) sets of PE tubes
• That he would use an iPad to talk to me on the phone

And in the words of the King of Siam in The King and I , "etcetera, etcetera, etcetera". (Can't you just visualize Yul Brynner saying that?!)

Makes me look forward to the next 10 years.

I am no longer missing

No, I didn't vanish off the face of the earth! Baseball really did take up the month of October. St. Louis didn't win the World Series, but it was still fun to watch.

Then there was November. 

I spent lots of time getting ready for Luke's IEP meetings. It took us 5 hours over 2 days, but I think a good one was developed. After an observation type evaluation takes place, the IEP team will be meeting again to discuss some additional educational options for Luke. 

My oldest turned 15 in November. There was the high school play - See How They Run. And of course Thanksgiving.

December brought the middle school winter choir concert. My middle daughter's 12th Family Day celebrating the day we met in China! Then Christmas and her 13th birthday the day after. New Year's Eve. 

Luke's Family Day 8th Family Day was January 4. January 5th brought about 10" of snow. Followed by -11 temperature on the 6th. 

The kids finally made it back to school today and I went back to work.

One of my goals for 2014 is to do more blogging. I'm working on a 2013 in Review and Hope and Dreams for 2014.

Until next time,

Janet

Wordless Wednesday

What I Learned in September

• I re-learned how emotionally hard it is to fill out the parent evaluation form for Luke's special education re-evaluation. I filled out ABAS II (Adaptive Behavior Assessment System). It took a long time.

• Through Amazon.com you can by French versions of the Harry Potter audio books. Since she can't go to Paris and sit in a cafe reading French and taking a French lesson each day, Olivia thinks this would be a good way to improve her French.

• Strawberry Lake, Michigan is a delightful place to spend Labor Day weekend, especially with Aunt Becky.

• There is now a diagnosis of Impaired Glucose Metabolism in our family. 

What I Learned in August

What I learned in August...

• My 14-year-old won 3rd place in high school division of the library's summer bookmark design contest. The theme was "Seek the Unknown". (You can see all of the winners at teenbookmarks.)

A little after the end, quite a bit before the beginning, mostly toward the middle, is where our story starts...

• My 12-year-old auditioned for and is a member of Singing Sensations, the after-school show choir at her middle school. She has auditioned for the St. Louis Metro 8 choir and find out soon is she is a member.

• Vacation Station (the before/after school program) has been fabulous for Luke. Through funding provided by the St. Charles Country Developmental Disabilities Resource Board, he has a wonderful one-on-one para. 

• The move to high school has been wonderful for the 14-year-old. I have only seen this amount of enthusiasm one other year in her entire education. She has joined the art club and is busy helping to build the homecoming float (they almost always win best float!). She is also a part of the drama club. For the first production, See How They Run, she is a part of the paint team.

• Luke is expanding his list of acceptable foods. He loves hot dogs and bratwurst. They need to be bite sized pieces (he can't take a bite with his front teeth) and dipped in ketchup and mustard.  

Until next time...

Back to School - Part II

or to use Luke's teacher's words -- Playing the Mom Card

School has now been in session for 6 days and we are getting into a rhythm. I like the rhythm, I like the structure. So does Luke. The girls do too.

Before school started there were trips to the office store and to Target to get schools supplies for the girls. Each time we went I would always try to get Luke to choose something, a new pencil box or crayons or markers. He would always say no using sign and voice. When combined it means No! Not nasty, but definite. Anytime anyone would ask if he was ready to go back to school, they would get the same answer. 

The Tuesday night before school started was Meet the Teacher Night. He wasn't happy when we piled the supplies in the car and headed to school. He did help carry some to the building, but that was a far as he was willing to go. Once we were in the building he turned into a huge pill (to put it mildly). 

The first stop was the special ed room. As soon as we got in and the teacher tried to introduce herself, he was whining and pulling me out. The second stop was across the hall to the SLP's room. He completely ignored a friend who was leaving the room and tried to pull me past the room. He did give the SLP a two second opportunity to say hi between the whines and pulling.

The third and final stop was the 5th grade classroom. The room was full of parents and students and he wanted nothing to do with it. As a side note, the classrooms have been just as full and noisy on the other Meet the Teacher Nights, so this wasn't new. I managed to get his supplies put on a desk, sign up for school T-shirt, say hi to the teacher and leave ASAP. At this point, describing him as being a pill would be a complement.

On the way out of the building we past teachers, principals and paraprofessionals that he knew and likes. With the exception of one resource teacher who got a wave and huge smile, he was unable to even acknowledge them. 

I was becoming very concerned that the start of the school year was going to be very challenging for all involved.

Thursday morning everyone was up bright and early. The high school bus came about 6:40, I dropped the middle schooler at her stop about 7:25, then headed to the elementary school (1/2 mile away) with Luke. The whining started as soon as I turned into the parking lot. He wasn't happy when we headed into Vacation Station (before/after school program). Once we met his paraprofessional I left reminding them that they had my phone number.

The Thursday report from the teachers and VS was that he had a great day. 

Friday morning he again whined and protested when we got to VS. Again I quickly left. A few minutes later I went back in to leave my check. He was happily playing the piano. Hmmm.

The Friday report from the teachers and VS was that he had a great day. Hmmm.

Each day this week the drop-off has gotten easier and easier. All the reports from school continued to be positive. He is now happy to go off with his para. 

I know change isn't always easy for him. And I know he doesn't (yet!) have the skills to tell us what he needs/wants/thinks. But I also know that a part of his behavior was a show for mom. While developmentally making-mom-feel-guilty-for-leaving-me is more of a toddler or preschooler thing, he must have thought he needed to try it one more time!