September swimming

While it's getting cooler in the Midwest, we are still roasting hot here. All three children had swimming lessons tonight. Lane and Alex cheered Gabriel on while he took the first swimming spot.
I really like this photo I took with all three Mai children at the pool. It's neat to see how far they are all coming along in their swimming skills

And the boys are swimming too

The boys started their swimming lessons this week. Their reactions have been interesting and a bit surprising. They go to the pool every week day for ten minutes and get individualize lessons
Gabriel LOVES learning how to swim. He is very agreeable with Marci but tries to stretch his lesson to last longer. He's working hard
Alexander yelled for me and did not want to go in the pool. This is one of his biggest challenges. He did better today when I asked him to calm down and work hard. He fights learning how to float and ends up drinking quite a bit of water
Overall they have made a lot of progress in three days. Marci is extremely patient with them and I appreciate her hard work Hopefully I'll have swimming and floating kids in a month.

Lost tooth, literally!

Gabriel lost his first tooth tonight! He doesn't have any evidence for the tooth fairy though because he said that it's in his tummy! He's very excited and wants to be a vampire for Halloween
On another note, he woke up and told me, "mom, I had the strangest dream last night.". While this would be a typical opening discussion sentence for 6 year olds, it's not for him. We were thrilled at this development. One day you will read this Gabriel and we are so happy with your achievements. You are an amazing child with the sweetest personality. You are a lot of fun and make our lives better simply by your existence. Thank you for being our son

Thumb print cards

We made these cards for the kids grandparents. The kids thought it was hilarious to stick their thumb in ink. I hope their grandparents enjoy their little surprises when they arrive. It says "three (thumb)bodies love you".

Here We Come Disney!

We did it - we took advantage of the Florida resident discount on Disney passes. It was a last minute decision and not a well thought out plan but we managed to muddle our way through the process. After purchasing our tickets at Magic Kingdom, we went to Epcot because MK was having the Not So Scary Mickey Halloween Party. I didn't want to spend an extra $60 per person on another party. Besides, Gabriel was very annoyed that people were celebration Halloween five weeks early.
We had dinner at Epcot and walked around - a family who was leaving gave us their double stroller which was AWESOME! We stayed for the light show too. The kids were completely silent during it. I think the fireworks and fire stunned them.
While I was at my advocate training today, Andrew took the kids to Animal Kingdom. The boys met some characters and their smiles are over the top cute.

Andrew also took the kids to Rainforest Cafe for lunch. I'm impressed - it's not easy to take our three children to a restaurant alone.

A photo from Animal Kingdom:

Gabriel asked Andrew for a stuffed lion. He explained that we aren't going to buy items every time we go to Disney because it will get too expensive. Gabriel decided to ask people for the money to buy it and Andrew had a tough time getting him to stop. Gabriel asked an older woman in a wheelchair. Andrew apologized for Gabriel's behavior. She told Andrew that she wanted to talk to Gabriel because "a rich old woman can give a handsome young man money if she wants to." She pulled out a huge wad of money and handed him $15 in exchange for three kisses. He was able to purchase his lion. I'm quite sure what to think of this but Gabriel was one happy 6 year old today.

School dismissal

For whatever reason, Gabriel is taken to the office between 3 - 3:15 despite school dismissal being at 3:30. I've gotten tired of the battles so I pick him up early. He usually eats a snack or plays my iPhone while waiting for his brother.
It's annoying that he misses out on part of his day but I try not to complain. I'll bring the topic up at the next IEP meeting. Thankfully the other parents have quit asking why Gabriel is out of school early. It feels like a slap in the face every time I have to explain he has special needs.
I looked through my phones camera and I found this photo of Lane, taken by Gabriel. Maybe this is the advantage to him getting done early - I get to see some neat things he CAN do.

A family weekend in September

One of our favorite things to do as a family is walk to the restaurants in Celebration. After dinner the kids have an ice cream treat while Andrew and I indulge in adult cocktails. Only a couple because we still have to walk back safely but a couple is a lot of fun. The kids clearly enjoy their frosty treat as well



I took photos of the boys but they were too dark to post



There are a few water fountains for the kids to look at too. For some reason they have been especially fascinating for Alex. He stared at it for a long time. Maybe it was due to a sugar coma?




The next day we went to the outlet mall We had a great time as a family and we all got something new and grand. What a fun treat. Alex asked me to take this photo of him with the legs. It made me laugh and despite having no battery power left on my phone, I had to oblige

The IEP battles continue...

The war with the school continues though it has gotten to be a quieter battle ground. We had Gabriel's IEP meeting on September 1 where it was quite clear that the school was not on the same page we are with our son. It's been a huge disappoinment.
We refused his IEP and placement due to a number of issues. The biggest obstacle is that his Iowa IEP isn't relevant to where Gabriel is academically and socially and the school is not listening to us. They told us that their hands are tied due to the IEP. Through futher inquiries, we discovered that the school can overrule the IEP and make it applicable to him. They appear to have no interest and want to tell us that they don't have what Gabriel needs rather than what they CAN offer.
It breaks my heart because it is a good school. In fact, if it wasn't for this issue, I would think it's a GREAT school. His teacher is fantastic with him and he's learning a lot this year. I love living in Celebration. It's a fantastic little community and fits exactly what we want at this point in our lives.
Andrew and I agreed to visit the school with the autism program. I thought - maybe they have a gem of a program that the autism groups don't talk about yet. We also compiled letters from his former K teacher, the asst principal of his former school, the principal at the school he would be attending, and the school psychologist who has known Gabriel and our family for the last three years. All of the letters state that Gabriel should be placed in the least restrictive environment and a general education room is the most appropriate placement for him.
We took time out of our day to visit the autism class room. To our dismay, the counselor there told us that she recived a phone call from our school telling her to only show us the autism class room, not the general education room. Since we asked to view both, she was more than happy to show us both rooms. The autism room was a room with 8 low functioning students of mixed grade levels and abilities. The aide was dealing with behavior management, the teacher was working with another student, two children were stimming in the corners, and the others were staring at computers. This is NOT the room for our son. We then saw the general education first grade room and it's the same program our school has here.
We were told that there was an autism teacher who assists the gen ed teachers at the other school. We found out that isn't true - she assists the higher grads, not first grade. What is going on here? Who the hell knows what is going on? I, of course, will consider another school if they truly have what my son needs but I won't deal with new transitions and daily long car rides when the program isn't appropriate.
After two weeks of emailing and calling the school adminstration with no results, I had to take another route. Thus came the following letter: (I've removed specific names)

On Thursday, September 1, we met with several people to discuss the educational plan for our son, Gabriel Mai. During that meeting (A) and (B)felt Gabriel was not appropriately placed at Celebration Elementary and after their conversations with the district, Gabriel should be moved to Boggy Creek Elementary. During this meeting we requested another IEP meeting based on the following:

· On Friday, August 26, (B) told Jessica and Andrew that Gabriel was going to have to be moved to Boggy Creek Elementary.

· A meeting was called for September 1, yet we didn’t receive written notice of the meeting. As a result we didn’t know exactly what was to be discussed at the meeting and we did not know who was going to be there.

· (B) stated that the new placement was determined by a phone conversation she had with the school district and from information on Gabriel’s IEP from Iowa. We disagreed with the decision. In our opinion, (B) and (A) had already decided that Gabriel needed to be moved before they walked into the meeting. It was not a “team” decision in the true spirit of IDEA. We clearly had no input.

·We explained several times that Gabriel’s teachers and principal in Iowa were intending for Gabriel to go into a regular classroom in the fall of 2011. Although this was not indicated on the IEP, we said we could get written statements from them that would attest to Gabriel’s ability. We felt this information was critical to consider, but we were repeatedly told that the IEP had to be written that day – including officially changing placement and schools.

It has been two weeks since that meeting and we have not heard anything from Celebration Elementary or Osceola County School District. In addition, our advocate made several phone calls to (D), (B) and (C) at the County, and none of those phone calls have been returned. This is disconcerting to say the least.

On another note, since the beginning of school, we have not been allowed to walk Gabriel to his classroom. Apparently this is school policy. However, Gabriel is a child with special needs, as is supported by his IEP, and part of Gabriel’s disability makes transitions difficult for him. This is particularly true in the morning when Gabriel has to leave mom to go to the classroom. At the start of the school year we were told that we could not walk Gabriel to the classroom and instead, Gabriel would have to wait in the front school office with his mother until a school employee can walk Gabriel to his classroom.

In an effort to comply with school policy, we acquiesced to this request against our better judgment. Most of the time Gabriel is not in his classroom in time for the first bell. Many times he arrives late to his classroom despite the fact that Gabriel’s mom is with him in the front office before 8:30 a.m. One day last week, Gabriel was not escorted to his classroom until 9:05 a.m. No staff member even acknowledged Gabriel’s presence until that time when someone looked at him and said, “Oh yeah! I’ll take him to class.”

This morning we were informed that his temporary aide will come and get Gabriel, “after her duties are over” which isn’t until 8:45 to 8:50 a.m. This is unacceptable and cannot be tolerated any longer. To delay our son’s access to the classroom past the start of the school day is to deny him a free appropriate public education. Furthermore, we believe our son is being singled out and treated differently because of his unique special needs. The school staff has never requested a meeting to develop an appropriate transition plan for Gabriel. The insensitive and rude way this has been handled is causing undue stress on our family and it will not be tolerated anymore.

Please be advised that we are preparing to pursue our legal rights as outlined in the IDEA Procedural Safeguards. We would like to settle this amicably, but thus far Celebration Elementary School and Osceola County Public School district is not demonstrating they would like to do the same.

We are requesting an IEP meeting, with school district ESE administrative personnel present, in order to settle these issues and give Gabriel the education he deserves. Our advocate will be in attendance and we will be tape recording the meeting. A prompt written response is appreciated.


I emailed the letter at 2 and received a phone call from the district office at 4:30. I hope things will change when we have our next IEP meeting this Tuesday. I never knew school officials would act like this. If adults aren't going to get into education for children, they have no business being there. I hope my view of Celebration isn't tainted by our next meeting.

Num num num

Over a year ago we changed our eating habits. An autism diagnosis made us rethink the way we were living. Unfortunately since we moved and have been getting adjusted to our new life, many of our healthy habits have been thrown to the wayside.
I started buying from an organic coop recently to get us back on track. Andrew brought this tray of vegetables up to the boys room for a snack. Funny, the kids ate it as happily as they eat ice cream. That might be a slight exaggeration but they really did like it. So cheers - here's to healthier habits!

Challenger baseball

Gabriel had his first baseball game today. It's the challenger league for children with special needs. I wasn't sure what to expect but had heard great things about the program.
When we arrived, Gabriel told me he was curious. He meant "anxious" and he didn't want to play the game.
I took him to the dugout after receiving his bag with mitt, helmet, and hat. I introduced him to one of the volunteers (his buddy) and Gabriel calmed down. It helped that his buddy knew about Mario and Luigi.
Gabriel's buddy did a great job helping him. Gabe hit the ball and learned about running to the bases. He was distracted by the love bugs but his coach said that was fine, the love bug could play too.
It was a great feeling to see my son involved in a sport with people who understand him. It's a rare feeling these days and my heart was full watching him.

The 10 best Comebacks for Judgmental remarks about your child with autism

The 10 best Comebacks for Judgmental remarks about your child with autism

Children with autism have no physical distinguishable characteristics. It’s hardly surprising then that many characteristics of autism are associated with poor behavior. Parents who have children with autism face judgment at every turn. They need to develop a thick skin to endure the never ending comments, criticisms and stream of parenting advice that keeps coming their way. While sometimes these remarks are easy to ignore, there are times when your patience level reaches the max! The next time you get to this point; why not try one of these great comebacks on for size?

The Ten Best Comebacks for Judgmental Remarks About Autism

1. “You should teach your son table manners” said the woman at the adjoining table in a casual restaurant.

Comeback: “I couldn't agree more. He even flicked a booger in that dish you just finished eating.”

2. While waiting for their food at the Deli, Sandy finds it impossible to ignore the three women who shamelessly gossip and snicker about her son.

Comeback: She pulls out her cell phone and pretends to make a call, slightly turning away as if she doesn't want the women to hear. “Luke, it's Sandy . Tell the producer we should move the show to a prime time slot. I've just got some great hidden footage of three grown woman snickering at Jack. By the way, I got your email and I think 'Attitudes toward Autism' is a great title for the show.”

3. “What's his problem?” asks a woman with a stroller while watching Dylan spin in circles. “Retarded?”

Comeback: “He's not retarded. He's got autism. And you know, I couldn't help noticing that your baby keeps touching his toes and then staring at his fingers in the exact same way my son did when he was that age.”

4. “Mrs. Smith,” says the school administrator firmly, “We really can't accommodate your request for a social skills group. And given that your son's language is so poor, it would be of no benefit anyway.”

Comeback: “OK. But I see we agree that he needs additional speech therapy.”

5. “You should teach your son to behave” scorned the woman on the beach as she eyed Jordan hovering around her children.

Comeback: “You're right. And you should be careful. I’m not sure if you've heard but they've just discovered that autism is contagious.”

6. At a large family gathering, Brian is facing sensory overload. He blocks his ears, squeezes his eyes shut, and then suddenly runs from the table.
“That child is out of control” retorts a distant elderly relative, “and if he doesn't shape up, somebody is going to stick him in an institution one day.”

Comeback: “How ironic! I was just thinking the same thing about you!”

7. While in the clothing store, Joe begins to verbally stim. It's a repetitive, low monotonous hum but it typically calms him down.
“You have some nerve allowing your son to disturb the public like that” exclaims a stranger in disdain.

Comeback: “Seriously? You mean all this time I've been completely mistaken about his musical genius?”

8. While standing in line, Zack notices the back pocket of a woman's jeans. It’s shiny and full of sequins. Before his mother can stop him, he reaches out to touch it, thereby placing his hand on the woman's behind.
Reeling around, she exclaims “How dare you? You should teach your son self control.”

Comeback: “I'm sorry. He just has a thing for very large, round objects.”

9. At a friend's BBQ, Jolene's son begins to flap his hands. “What is he doing?” asks the woman sitting next to him. Does he always do that?

Comeback: “Does he always do what? Ignore rude comments? I certainly hope so.”

10. “If I worked for social services I'd take your child away from you right now”, reprimands the woman in the supermarket line.

Comeback: “My son has severe autism, and judging by your tolerance level, it'd take you about one hour before you'd give him right back.”

By Jené Aviram

This article is property of and copyright © 2003-2011 Jené Aviram of Natural Learning Concepts. Reference of this article may only be included in your documentation provided that reference is made to the owner - Jené Aviram and a reference to this site http://www.nlconcepts.com. Jené is an accomplished author and developer of education materials for children with autism and special needs. She is a co-founder of Natural Learning Concepts, a leading manufacturer for special education materials and autism products. Visit the Natural Learning Concepts website at http://www.nlconcepts.com or call (800) 823-3430

Lane swims!

Lane has been taking swim lessons for a few weeks. It's a four week class that is every day for ten minutes. It's mostly drowning prevention. After witnessing Alex at the bottom of a pool, I've wanted the kids to take this class
Lane has been floating for a little while but she mostly glided to the steps. Picture a glider squirrel under water and that was our daughter. She would not move her arms or legs! Marci, the coach, called her lazy. :) She was and I wondered if she would ever understand that kicking helps with movement in the water.
Yesterday was the day! She kicked her way to the steps, to the wall, and to Marci. I was so proud of her! It's incredible to watch my two year old swimming and floating in a pool.
I'm so grateful for Marci and her patience with Lane. Lane even smiled yesterday! Hooray for firsts!

TWIGS

We are members of ASGO - Autism Society of Greater Orlando. I found out about a scholarship to become an advocate through ASGO the night before it was due. I decided to send in an application because I want to help children with special needs. I didn't think I had a chance since it was the night before and I didn't get to take the time I felt the application deserved. However, I am honored to report that I am a receipient of the scholarship. I will become an advocate in May after attending the TWIGS advocate training program.
Here is a supplmental letter I wrote:

After I submitted my application, I didn't feel like my summary truly represented me and my passion for children and their rights. I didn't realize that advocates exist to help parents with their rights until it was brought to my attention recently. I get goose bumps when I consider this as a possibility for me. I have a huge desire to help people but never felt like I found my niche in the world. I love being a stay-at-home mother and I love volunteering but something feels missing in my world. I believe being an advocate is the answer for me.
My now 30 year old brother is 75% hearing impaired. When he was in the second grade, my parents moved to a small town. Accomodations were not made for my brother and it was a constant battle for them. They were given the option of putting their small child on a bus for transportation 1.5 hours each way to the hearing impaired and deaf school. They had few options and didn't want him on the bus three hours a day. They decided to home school him. Though it worked out for them, this was not what they wanted to do. I think an avocate would have helped them get what my brother needed out of the school system.
I remember telling parents to be an advocate for their child when I taught preschool/PreK. I was in my son's IEP meeting today and refelected on the importance of feeling empowered by knowledge. It's so easy to say "be an advocate" but the implications are far more complicated. Until I was a parent of a special needs child, I had no idea what it would feel like or how difficult it is to parent a child with special needs. I certainly never realized I would need to understand a booklet of my rights because not everyone has my child's best interest at heart.
It is with this past experience, my educational experience, and more that I would like to help other parents. All systems are flawed but it's a sea of paperwork for parents of special need children who might already feel overwhelmed by what they are dealing with daily. I want to empower these parents. They need it. Their children deserve it.
Thank you for considering me for this scholarship.
Sincerely,
Jessica M. Fredrick

Labor Day Weekend 2011

A nasty storm in Wisconsin changed our weekend plans from camping with friends to traveling to St. Augustine. It was a lovely weekend despite the change in plans.

The first evening we stayed at a nice hotel on the beach. The kids were thrilled to jump in the waves and run on the beach. They love the beach and it's fun to watch them thrilled when we are there.
We got Ritas for a snack after our beach adventure. Andrew slightly ruined my custard moment by telling me it tasted like butter. Oh well. I really don't need to consume all of those extra calories.
The next morning we went to the Alligator Farm. It's a zoo with mostly alligators but also other animals. We got to feed alligators which was a new experience for us. Gabriel was asking for a panda bear the entire morning. On the way out, he spotted one in the gift shop. Who would have known that there would be one there?

We found a very cool restaurant on the water with unique seating. We had a tiki type seating area to ourselves overlooking the water. It was such a peaceful setting, especially if we hadn't had three young children with us.
We stayed at a small cabin at a KOA in St. Augustine. We've decided that unless we are next to a bathroom, even cabin camping isn't for us at this stage in the game. There are too many safety issues with our children to truely relax when we do it by ourselves.

We walked around St. Augustine and saw the fort. When we lived in Daytona, pre-children, I would imagine the day I would bring my kids to the fort. This was a surreal moment because that image came true. What an amazing life I have ... I can't believe we've created three little individuals who we get to protect and teach about the world.

We came home Sunday morning and spent the evening with new friends who live in Celebration. I was anxious about Gabriel's behavior at a new home but so excited to be included in a family get together. I hope we make more memories with our new friends.