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!

Back to School - Part I

Here is the post I promised last week.


Last Thursday was the first day of school for the 2013-2014 school year. This year is a 3-kids-3-different-schools kind of a year. 9th, 7th and 5th grade.

Last year was not the best of years for Luke. One positive is that with the many meetings I had concerning his education, I did get the opportunity to develop a working relationship with the new principal. I already have a good working relationship with the assistant principal in charge of special education (or at least from my point of view ;-) 

Since Luke has an entire new team this year, they all made time for us to meet to talk about "all things Luke". Attending the meeting was the general ed teacher, special ed teacher, SLP, principal, assistant principal over sped, assistant principal working with 5th grade, and the head Vacation Station (before/after school program) -- plus me! 

The new sped teacher is right out of college and is super excited about this coming year. She has experience working with children on the spectrum - which is a big plus.

The new SLP is also a sweet young thing who has been working now for 3 years. She also has autism experience (which last year's SLP did not!).

The gen ed teacher is experienced. While she has taught students on the spectrum, she hasn't had one with as many communication, sensory and developmental concerns . She asked lots of great questions about how she can get Luke involved in her class. It had already been decided that she will be teaching Luke social studies and science. Her structured classroom style is going to be a big plus.

Some of the things I shared about my guy are...

• He is an expert at acting incapable. He is small, non-verbal and has a killer grin, it is very easy to fall for. 
• If you let him get by with something one time, he will assume he can get by with it all the time.
• His behavior will tell you much if you pay attention. Asking him a stupid question (e.g. show me your foot), you will be ignored. Keep doing it, he will start to whine, continuing to escalate the behaviors until hitting or throwing might become involved.
• Loud vocalizing is often a way of expressing that he doesn't know what is going on. For example, if he missed the exchange that we weren't going home after grocery shopping he will let me know.
• Hitting, that appears to be out of nowhere, most often means he needs to tell you something and doesn't know how. 

The main goals for this school year are communication, communication, communication!

He has to learn how to communicate using the Proloquo2Go on his iPad. If he can't communicate then he can't learn. Or at least he won't be able to let us know what he has learned. Communication skills should help eliminate inappropriate behaviors that are being used for communication.

This year they will be using visual schedules for all parts of his day, including the before/after school program. The sped teacher already had most of Luke's put together. I now need to asked her to email me a picture so I can start to implement a visual schedule at home.

Till next time...

What I Learned in July

One of my favorite blogs is Along Came the Bird. It is mostly about a sweet little girl named Lily. It is written by Lily's mom. It is a blog full of hope, prayer, and family. Check it out if  you have a chance.

One of today's posts was titled "What I Learned in July". Lana (the mom!) got the idea from yet another blog. (Isn't that how things work in the world of bloggers and blogs?) 

What I learned in July is...

1. Luke can pick beginning sight words from fields of five. His ESY (extended school year) teacher did some fabulous things with him. I can hardly wait to see how far he can go.
2. The email address for Luke's new special education teacher. Email is my favorite way of communicating. We have already corresponded. I will be meeting with all of Luke's new team on Tuesday afternoon. I have very thankful they are all willing to take the time away from preparing for the new year. Meet the Teacher night is Tuesday night and school starts on Thursday, so this is a very busy time for them.
3. Not all people providing in-home services for autism really understand how autism effects every aspect of family life and that there isn't always time to do as much therapy as they would like. I refuse to allow someone to try to make me feel guilty for what I can or cannot do. That service provider is no longer being used.
4. I need to do a better job of identifying poison ivy when working in my front/side garden. But I am thankful for the Walgreen's TakeCare Clinic. Hopefully the steroids I got tonight will start working.
5. Luke will whine when he has to use his iPad to order his meal at McDonald's. He has learned that if doesn't order it, he won't get it. The whining and opposition is less each time we go.
6. Both of my daughters have a really good group of teachers for the upcoming school year. The 14-year-old has already checked out the high school teachers with friends who have older siblings. We know the 12-year-old's is good from our own experience.
7. Blogging is fun.

Wordless Wednesday

A chalk drawing that appeared on my driveway courtesy of my 14-year-old daughter.

How to encourage a special needs mom (when you aren't one)

This week I read a delightful post written by Aprille at Beautiful in his time. The post is

How to encourage a special needs mom (when you aren't one). 

Jump over and read it. Then come back and I will share my two cents on a few of the pieces of advice.

4. Ask her questions.

Asking questions is great. If you are a stranger in the middle of the grocery store, you might not get the whole truth. If Luke is with me, you might not get the whole answer. Even though he doesn't talk, he hears everything. There are just some things he doesn't need to hear. 

6. Keep advice to yourself.

Unless you are a knowledgeable about autism, sensory processing disorder, verbal apraxia or education, I would rather you keep your advice to yourself. On the other hand, while I have done lots of research, it doesn't mean I have heard or read about all the latest-and-greatest methods. Telling me about something that sounds promising or interesting is OK. This is not the same as offering advice. Better yet, send me the link then I won't have to remember enough to Google the information.

I also love, love, love to hear stories where a child has made great strides. It gives me hope.

7. Don't invalidate or downplay her hardship by saying "oh, my child does that too."

One of the first things that I learned when I took the parent training at Judevine (now Touch Point Autism Services) is that most of the behaviors our children with autism do, typical developing children will also do. The difference can be summed up with D.I.F 

Duration, Intensity and Frequency

8. Refuse to compare your child's development to hers.

Most children have what can be called a typical development. The development of a child with autism is all over the place. Neither one is normal or abnormal. 

I have a friend who has a son (also named Luke) who are the same age, same grade as my Luke. Her Luke is a head taller and academically very advanced, so it is almost funny to "compare" the two boys. What is hard is when the little ones, e.g. toddlers, preschoolers,  reach a developmental milestone that my Luke isn't even close to. But I still want to hear about it and celebrate. 

9. Offer tangible help.

Asking for help takes time and energy. It also takes a willingness to verbally admit that you can't do it all - even though I am often told "I don't know how you do it." (This is a big assumption.) I have two neighbors who will shovel my drive without being asked. 

10. Pray for her and her child.

In my book, this should be a given!

Aprille's best advice is --

Simply "Rejoice with them that do rejoice, and weep with them that weep."

Wordless Wednesday

A picture to cool you off on a day where the predicted high is 94 with a heat index of 100+. Did you know there could be such joy in roller skating in the snow?

It Takes a Village - Part 1

From the Therapeutic Horsemanship web sight hippotherapy is defined as:

Hippotherapy: Literally “horse therapy” or “treatment with the help of the horse." This is a dynamic treatment approach that uses the movement of the horse based on principles of classic Hippotherapy – neuromotor function and sensory processing. This program uses the horse as the therapy tool and is designed for individuals with disabilities to increase balance and control of movement on and off the horse. Specially trained volunteers are used as the direct link along with the therapist or instructor’s guidance to the client and the achievement of personal therapeutic goals using the movement of the horse. 

If I remember right, Luke started hippotherapy in the spring 2007. Except for January and February (when it is too cold), he rides every Tuesday night. Through the years he has had several different SLP's and OT's. His main goal has always been to meet some of his sensory integration needs. They have also worked on core strength, balance, fine motor skills, following directions, colors, counting, speech, and language. And I know there are things I have forgotten. 

It is when he is on his horse that he will actually talk. He will verbally tell the horse to "walk on", "go", and "trot". The movement of the horse helps his body in such a way that he is able to do the motor planning to get the words out. Trotting and trail rides are Luke's most favorite things to do. 

Laying on the horse allows the whole body to feel the movement.

 When Luke was smaller they had him standing on the horse while the horse was moving. He loved to do this. I always joked that it was sensory therapy and vocational training  all in one.

One of the wonderful parts of Luke's hippotherapy is the wonderful people we have met - therapists, volunteers, parents and kids. 

Therapeutic Horsemanship is an important part of our village.

(Nearly) Wordless Wednesday

Today's note home from school said: "Luke worked well today! We figured out at one point that he was only choosing the correct answer if I had a Skittle in my hand!"

Blessings

This week is the 3rd and final week of ESY (extended school year). Of all the ESY sessions my son has attended since starting ECSE (early childhood special education) in October 2005, this session has by far been the best. Most have been good. A few have been glorified day care. But this has been the best.

This past school year was not one of the best. It would rank close to the bottom. It wasn't good for various reasons. The good news is he will have a new team - sped teacher, gen ed teacher, & SLP - this next school year. He will have the same OT who we have known since ECSE evaluation time. I really, really, really want to be able to meet with this new team and not whine about last year. They had nothing to do with the situation. We need to start fresh.

The ESY sped teacher, SLP and para-professional have provided a super learning experience which will give us (the home school team) something positive to build off of for this coming school year. Every note sent home or email exchange with these ladies just puts a smile on my face. Just this summer he has shown that he does understand number concepts and he can learn sight words. He has also been effectively using his iPad for communication. Today's note home said he was easily picking a spoken word out of a field of three cards and had some struggles with a field of five. 

For the 2013 - 2104 school year his team will have a wide variety of experience. I know who the classroom teacher is, though neither of my girls had her. Word on the street is that her students love her and that she is strict in the classroom. When I told her this, her response was: I guess I'm strict, but I prefer to think I'm "structured." I have very high expectations and prefer to begin with high expectations and lower them, if necessary, rather than begin with low expectations. I find that most students will push themselves to reach higher standards and feel proud of themselves when they realize just how capable they really are. How perfect is that for someone with autism?! The sped teacher is straight out of school. She is taking the time to go and observe ESY. And she has experience working with people on the spectrum. I don't know anything yest about the SLP, but we will meet in a few weeks.

My son and I are very blessed to have to ESY sped teacher, SLP and para-professional.

Sunday Solace

"As the mother of a very young child with autism, one of the first things I learned that was on some days, the only predictable thing about it is the unpredictability; the only consistent attribute - the inconsistency."

Ellen Notbohn
Ten Things Every Child With Autism Wishes You Knew
"It begins ..."; page xiii

You Deserve a Break Today

I spent part of the 4th in the ER with my youngest. Being the strong, silent type (non-verbal), he wasn't able to tell me what happened. Around 10 a.m. he was unable to put any weight on his right foot. The pain was bad enough that he found some scissors and tried to find something to cut off the bottom of the foot (yes, I stopped him!)  Whenever he is hurt he tries to brush or cut it off. It in a literal way it makes sense.  Unfortunately it doesn't work that way.

After getting a look at the foot (which is a challenge when you can't touch) I could see nothing wrong, so off to the ER we went. He has an extremely high pain tolerance so I knew something was wrong.  He jumped/ran to the car on one foot when I told him we were going. Another clue that something is really wrong. The doctor was great and didn't even try to examine the foot until his anxiety was down. They then took 6 x-rays of the foot area. They only thing they discovered was some internal inflammation which went along with the slight external swelling. Diagnosis was a sprain. They wrapped the foot in an ace bandage and put a brace on it. Sent us home with instructions to keep the foot elevated and ice it throughout the day. We got home about 4 p.m. and by 5:30 he is limping around, doing his own thing. Friday morning he was running bare footed. I will call our pediatrician on Monday, but I thinking I don't need to do the ortho follow-up suggested by the ER.

Since the foot seemed fine, on Friday we headed to Brendan's Playground, an inclusive playground. On the way we stopped for lunch at McDonald's. We are working very hard to have him use his iPad for all communication, so I put his typical order to two buttons in Proloquo2Go - Double Cheeseburger and Large Soda. I also added "3 cookies" as a reinforcer for doing a good job ordering his own meal. He very reluctantly ordered his meal, but he did it!

This was our first trip to Brendan's Playground. In the past we have been to Zachary's Playground and loved it. I was hoping it would be just as good because it is much closer. We were not disappointed - it was wonderful. There was some shade, a great variety of swings and a water play area. Since it is less than 15 minutes from our house, I'm sure we will be going often. And including stops at McDonald's to work on the communication.

Independence Day

Every July 4th I remember the one 14 years ago now that I spent traveling from Nanjing, Jiangsu, China to Guangzhou, Guangdong, China. The adoption of my oldest daughter was complete and we were traveling to Guangzhou to get her US visa so she could come home to the United States. It was a Sunday morning when the eight families from our adoption agency gathered in the hotel lobby to get our babies Chinese passports and then head to the airport. Unfortunately the transportation was late which made us late getting to the airport. We were the last to board the plane. It is amazing and delightful to see a plane full of people move without being asked when 8 new families board the plane. The flight itself was uneventful. The hotel we were to stay at in Guangzhou, the White Swan, had transportation at the airport, waiting.

There were no bar-b-ques, no picnics, no swimming, no fireworks (and we were in China!). But it was one of the best 4th of July's I have ever spent. I was a mom.

I hope everyone has a joyous Independence Day.

This is the Yellow Hat Society

Welcome to my blogging journey.

I am a single mom. I built my family through adoption. I have three great kids. My oldest is a daughter who is about to enter high school. She is the family academic. The second is a daughter who is in the middle of middle school. She is the family care giver and drama queen. My third is a son who is close to the end of elementary school. He is the strong, silent type. He was born with a complete bilateral cleft palate and a complete bilateral cleft lip. He also has autism. Among other things, he is non-verbal.

Why the Yellow Hat Society? Remember Curious George and the Man with the Yellow Hat who tries to take care of George? Well, I often feel like the mom with the yellow hat.

There will be more post to follow as I figure out this thing called blogging.