We just had Cameron's annual IEP meeting to prepare for school in the fall and let's just say, it was not what I expected. This year he has been in a contained classroom with 3 other students with inclusion for music, playground, and other extra events. He's had pull out for speech and OT up until a couple months ago when they moved his speech to monthly consultation only. Fine. I see where they are coming from because he is verbal even if it's not the kind of conversations I am hearing from neurotypical kids his age. I was expecting that the next year's IEP would contain the same services.
Nope.
The only thing staying the same is the speech services are on monthly consultation. The OT has moved to 6 times of consultation for his entire pre-k year. I made it pretty clear that they are obviously seeing a completely different child than I am seeing. The child I spend my time with needs pressure many times throughout the day and struggles immensely with transition. In fact, I would go so far as to say that he has regressed this school year in terms of his sensory issues and self regulation. Pulling OT from his school services means that we are most likely going to be putting him back in private OT, which we should have done anyways since he has regressed.
That wasn't the worst of it. Some of you may think this is a great idea because for so many families it's the ultimate goal. For us, it's not the goal at this point in Cameron's life. I'm talking about inclusion. They are moving him into a regular ed classroom next year which is comprised of around 20 peers. I completely disagree with any preschool class having more than 12-15 children. Sure you can argue that the larger class helps them prepare for Kindergarten but why not give them one more year of a more individualized instruction?
I feel like there is a huge push to normalize him and not address the underlying issues. I know there are kids who are in more severe areas of the spectrum but that should not be a reason to deny him the services I feel he needs and deserves. Nor should he be denied because he's smart.
I walked away feeling like a failure of a mom and feeling like I've failed Cameron. Maybe his issues are all in my head since no one else sees them. Why do I struggle day after day caring for him? Am I the only one seeing his Autism? Not recognizing his issues not only hurts Cameron but it's also a slap in my face.
I guess I just need to suck it up and take what we can get. Will he continue on in the public school system after pre-k? With this latest development, those chances are looking pretty slim.
Saturday, April 27, 2013
Tuesday, April 23, 2013
A night at Downtown Disney
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| Ferry ride to Downtown Disney |
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After dinner we walked around and took in the sights. We did go to the biggest Disney Store on the planet and bought a few gifts but aside from that, the shops were just way to crowded to enjoy. Towards the end of our walk, we spied this giant beautiful balloon. I don't remember that from a few years ago so maybe it's new? It goes up in the air around 400 feet and you can ride on it for a hefty price. We skipped on it this go around but maybe someday....
Monday, April 22, 2013
Port Orleans Riverside Resort- Royal Guest Rooms
One of the must dos at Disney, in my opinion, is to stay on-site. You can beat the perks! I love being able to easily access the transportation system, use our dining plan at our hotel, and enjoy being immersed in the Disney theme. For this trip, we stayed at the Port Orleans Riverside Resort. I've stayed at the Port Orleans French Quarter and loved it, especially how small it is, but the beauty of Riverside now makes it my favorite of the two. I love the plantation home look and the bridges over the river plus at Riverside they have Tiana's Royal Guest Rooms which is where we stayed. The story behind the guest rooms is that each of the princesses gave Tiana a wedding gift which you can search for in your room. Gifts like the footstool from Belle, a flying carpet from Jasmine, and a large wooden picture frame from Snow White. The shower curtain is in the theme of The Little Mermaid while the sink faucets are genie bottles from Aladdin. Very cool! The best part? Check out the murals over the bed. The fireworks are fiber optic!
Here's a larger view of the room:
We want to stay at a different resort next time so we can experience a new theme but would I stay at Riverside again? You betcha!
Here's a larger view of the room:
We want to stay at a different resort next time so we can experience a new theme but would I stay at Riverside again? You betcha!
Monday, April 8, 2013
Our tips for success when traveling to Disney with Autism
Cameron loves Mickey and Sarah Hazel loves Belle. I've always wanted to take them to Disney World, so when John's parents offered us a trip, we happily and gratefully accepted. Despite our excitement, we had some worries. Our trip was during most school's spring break which is one of the most crowded times at Disney. How would Cameron do with the crowds? Would he be able to wait around in lines? Would he stay in a stroller? Would Sarah Hazel's hyperactivity and lack of focus mean trouble for her while waiting in lines? Would her anxiety flare up and cause her to want to hoard every little thing she encountered? When dealing with things like Autism, ADHD, OCD, SPD, etc in your kids.... you can't help but worry.
It turns out the kids did great. Sarah Hazel was so busy and so entertained that it appeared as if her attention deficit issues had disappeared. Except they hadn't. It actually worked in her favor and came across as "cute". While the other girls walked in the princess parade at dinner, she bounced and skipped. While the other kids walked up sweetly and shyly to meet Belle, she hopped up and down like a spring. She posed here, there, and everywhere. Simply put, she was a ball of energy and happiness that never stopped and for once in her life, it was an okay place to be that way.
Cameron also did quite well. He had a few moments here and there but we worked overtime (and stealth) to keep him from becoming overstimulated and overly anxious.
The secrets to our success:
(Please keep in mind that my tips are based on our trip with a 4 year old with Autism and not an older child)
1. The Guest Access Card and "Stroller as a wheelchair" tag:
There is no way this trip could have been successful without these two things. In fact, I don't even know how we would have gotten to do anything without the card and tag because there is no way Cameron could have waited in lines or gone places without his stroller which quickly became his safety net. If you aren't familiar with what I'm talking about, the card (aka GAC) is stamped according to the cardholder's needs to accommodate their disability. It allows the cardholder and 5 extra family members to access wheelchair entrances and/or Fastpass lines. It is NOT to be used to by-pass wait times in the queue however, we did find that our wait times were reduced tremendously. At first I felt guilty but then I remembered that I have a child with Autism who cannot be in crowded lines and if we did force him to wait in close quarters, then it would also be miserable for everyone around him. There is a reason that many Autistic kids need a GAC and now I understand why. Everytime we presented our card to a cast member they were incredibly sweet about it and often times would talk to Cameron to entertain him until his turn to ride. A few cast members even gave him stickers while he waited. We also used our "Stroller as a wheelchair" tag which is exactly what it sounds like. Cameron could ride in his stroller all the way up to where we boarded a ride. Once again, we had no trouble from cast members and in fact found them all to be friendly and helpful. With all of that being said, I am incredibly impressed with how well Disney treats their guests with disabilities. Now if only everywhere we went was that accepting! Thank you Disney!
2. Social Stories:
The Disney for Families with Autism Spectrum Disorder site has some great free social stories ready for printing and laminating. We found them especially helpful with getting Cameron to understand how we can go to Disney via airplane. http://www.wdwautism.com/node/191
3. Plan your meals ahead of time:
Cameron is super picky so we looked at menus ahead of time and decided where to reserve sit down meals and where to eat our quick service meals (we did the Disney Dining Plan). I even made a list of all the quick service places the kids would eat food from. John left it as home but thankfully I remembered most of what I wrote down.
4. Create a touring plan:
We paid the small yearly fee for Touring Plans.com. Basically you pick the things you want to do and then Touring Plans.com optimizes your plan so that you have the least amount of wait time possible. You can tailor it to fit in eating times, how much walking you want to do, character meetings, etc.. With how crowded it was, having a paid plan made out for you is well worth the nominal fee. The plan plus our GAC made touring the parks quite easy. Also, make use of Fast Passes in the parks! They are free so why not?
5. The Early Bird Gets the Worm: It stinks getting up while it's still dark every day on vacation but it's worth it. Let me say it again, it's worth it. Get to the parks right when they open and you will actually be able to do things with a minimal wait. If you come to the park later, the wait will be far from minimal...at least on crowded days.
6. Only take the mid-day break if it will truly benefit your kids. Everyone told me to take a break for naps or swim time but we realized on the first day that that advice wasn't fitting for our kids. At all. It adds in too many extra transitions and left them overstimulated and under-stimulated (aka boredom) all at the same time. We did better finding some out of the way spots to sit and letting them play on the playgrounds in the park. Cameron napped in his stroller everyday but when we did go back to the hotel mid-day, he wouldn't nap.
7. Watch ride and park videos on YouTube before you go. It helps your kids have some idea about what to expect and adds to the excitement.
8. Don't force kids to do the character meet and greets. Cameron hid under the table which was fine with us. He enjoyed the characters coming over but also enjoyed not having to interact with them. Some of the characters would quickly glance under the table and wave at him which was fine with him because he was still in his space. He did like getting all the signatures in his book to look at later. It seemed pretty obvious that the characters know not to force it and keep the interaction at a minimum if the child seems afraid.
9. Be prepared and think about all the ways to help keep your child happy and calm. If I could see Cameron getting anxious, I would squeeze his hands and arms. If he was afraid to go on a ride, I would carry him and whisper to him about the ride and all the things we could look for. If you think your child will get bored sitting in a stroller, have toys on hand to entertain. We didn't need them but I can see why they would come in handy for some children.
10. If a meltdown does happens, it's ok. Don't feel like you have to go overboard to try and stop it for the sake of other people, unless of course you are in a show where people are trying to listen. If I worried about every little issue Cameron had, I would have been miserable. He had a huge meltdown at Epcot and the best thing for both of us was to let it happen. I sat right with him and held the back of his head as he flailed so that he wouldn't crack it on the pavement. I remained calm which helped Cameron get back to a calm state quicker than if I had been stressing and trying to overly distract him, which generally makes things worse instead of better. Actually, this advice goes for everywhere and not just Disney!
It turns out the kids did great. Sarah Hazel was so busy and so entertained that it appeared as if her attention deficit issues had disappeared. Except they hadn't. It actually worked in her favor and came across as "cute". While the other girls walked in the princess parade at dinner, she bounced and skipped. While the other kids walked up sweetly and shyly to meet Belle, she hopped up and down like a spring. She posed here, there, and everywhere. Simply put, she was a ball of energy and happiness that never stopped and for once in her life, it was an okay place to be that way.
Cameron also did quite well. He had a few moments here and there but we worked overtime (and stealth) to keep him from becoming overstimulated and overly anxious.
The secrets to our success:
(Please keep in mind that my tips are based on our trip with a 4 year old with Autism and not an older child)
1. The Guest Access Card and "Stroller as a wheelchair" tag:
 |
| What made it all possible..... |
There is no way this trip could have been successful without these two things. In fact, I don't even know how we would have gotten to do anything without the card and tag because there is no way Cameron could have waited in lines or gone places without his stroller which quickly became his safety net. If you aren't familiar with what I'm talking about, the card (aka GAC) is stamped according to the cardholder's needs to accommodate their disability. It allows the cardholder and 5 extra family members to access wheelchair entrances and/or Fastpass lines. It is NOT to be used to by-pass wait times in the queue however, we did find that our wait times were reduced tremendously. At first I felt guilty but then I remembered that I have a child with Autism who cannot be in crowded lines and if we did force him to wait in close quarters, then it would also be miserable for everyone around him. There is a reason that many Autistic kids need a GAC and now I understand why. Everytime we presented our card to a cast member they were incredibly sweet about it and often times would talk to Cameron to entertain him until his turn to ride. A few cast members even gave him stickers while he waited. We also used our "Stroller as a wheelchair" tag which is exactly what it sounds like. Cameron could ride in his stroller all the way up to where we boarded a ride. Once again, we had no trouble from cast members and in fact found them all to be friendly and helpful. With all of that being said, I am incredibly impressed with how well Disney treats their guests with disabilities. Now if only everywhere we went was that accepting! Thank you Disney!
 |
| Cameron in his stroller as a wheelchair. We also tied a puzzle piece printed scarf on the handle for 1. Autism Awareness and 2. So we could easily spot our stroller when we did park it in the main stroller parking. |
2. Social Stories:
The Disney for Families with Autism Spectrum Disorder site has some great free social stories ready for printing and laminating. We found them especially helpful with getting Cameron to understand how we can go to Disney via airplane. http://www.wdwautism.com/node/191
3. Plan your meals ahead of time:
Cameron is super picky so we looked at menus ahead of time and decided where to reserve sit down meals and where to eat our quick service meals (we did the Disney Dining Plan). I even made a list of all the quick service places the kids would eat food from. John left it as home but thankfully I remembered most of what I wrote down.
4. Create a touring plan:
We paid the small yearly fee for Touring Plans.com. Basically you pick the things you want to do and then Touring Plans.com optimizes your plan so that you have the least amount of wait time possible. You can tailor it to fit in eating times, how much walking you want to do, character meetings, etc.. With how crowded it was, having a paid plan made out for you is well worth the nominal fee. The plan plus our GAC made touring the parks quite easy. Also, make use of Fast Passes in the parks! They are free so why not?
5. The Early Bird Gets the Worm: It stinks getting up while it's still dark every day on vacation but it's worth it. Let me say it again, it's worth it. Get to the parks right when they open and you will actually be able to do things with a minimal wait. If you come to the park later, the wait will be far from minimal...at least on crowded days.
6. Only take the mid-day break if it will truly benefit your kids. Everyone told me to take a break for naps or swim time but we realized on the first day that that advice wasn't fitting for our kids. At all. It adds in too many extra transitions and left them overstimulated and under-stimulated (aka boredom) all at the same time. We did better finding some out of the way spots to sit and letting them play on the playgrounds in the park. Cameron napped in his stroller everyday but when we did go back to the hotel mid-day, he wouldn't nap.
7. Watch ride and park videos on YouTube before you go. It helps your kids have some idea about what to expect and adds to the excitement.
8. Don't force kids to do the character meet and greets. Cameron hid under the table which was fine with us. He enjoyed the characters coming over but also enjoyed not having to interact with them. Some of the characters would quickly glance under the table and wave at him which was fine with him because he was still in his space. He did like getting all the signatures in his book to look at later. It seemed pretty obvious that the characters know not to force it and keep the interaction at a minimum if the child seems afraid.
9. Be prepared and think about all the ways to help keep your child happy and calm. If I could see Cameron getting anxious, I would squeeze his hands and arms. If he was afraid to go on a ride, I would carry him and whisper to him about the ride and all the things we could look for. If you think your child will get bored sitting in a stroller, have toys on hand to entertain. We didn't need them but I can see why they would come in handy for some children.
10. If a meltdown does happens, it's ok. Don't feel like you have to go overboard to try and stop it for the sake of other people, unless of course you are in a show where people are trying to listen. If I worried about every little issue Cameron had, I would have been miserable. He had a huge meltdown at Epcot and the best thing for both of us was to let it happen. I sat right with him and held the back of his head as he flailed so that he wouldn't crack it on the pavement. I remained calm which helped Cameron get back to a calm state quicker than if I had been stressing and trying to overly distract him, which generally makes things worse instead of better. Actually, this advice goes for everywhere and not just Disney!
Tuesday, April 2, 2013
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