Looking for other families with a child with autisum

[kirstenb1]

We have boy/girl twins both diagnosed with severe autism who are turning 5 this week.

My wife blog on the subject at http://www.networkedblogs.com/blog/my_familys_experience_with_autism and admins a Facebook group called "We Care About Someone With Autism".

Hey I just visited your blog. Props to you guys for braving the Santa experience!!! Our 6 yr old is only mildly on the spectrum, yet has always been terrified of Santa, WDW characters, etc. Her teacher gave us a social story about how she could just walk by and wave, instead of interacting with them.

I agree 100% with you guys about trying to push their comfort level. We just haven't gotten there yet with big people in suits!! Our older dd is 13, so it's been a long time since she visited Santa. Anyway, thanks for sharing the blog!!

 

[Faldred]

Each child is different, of course. Costumed characters aren't a problem for our two -- they loved WDW when we went shortly after their 2nd birthday, and have had occasional contact with other characters (prior to Santa, most recently a few months back when "Super Why" characters were at a local grocery store for an afternoon). They also have an older brother (less than 2 years older), who is about as un-autistic as possible, so that helps them adjust a bit, perhaps.

The big problem we have in those situations is getting them to be out in a public setting, waiting in line, not running off, etc. This year's trip went well in that respect, though they showed no interest in the jolly ol' elf himself when we got to the front of the line.

 

[Abharmagic]

Hello- I have a 5 year old son with high functioning Aspbergers and SPD who loves Disney. We have gone to WDW with him twice so far but have never made any special accomodations/GAC but he was young and undiagnosed. This trip we are planning a bit more, will request a GAC and will take more breaks. I LOVE your signature- did you make it yourself or is there a site- I just think it's fantastic!

 

[LuvsTinker]

We have boy/girl twins both diagnosed with severe autism who are turning 5 this week.

My wife blog on the subject at http://www.networkedblogs.com/blog/my_familys_experience_with_autism and admins a Facebook group called "We Care About Someone With Autism".

Thanks for posting! I found the FB page.

 

[DRS_Are_Best]

Hey I just visited your blog. Props to you guys for braving the Santa experience!!! Our 6 yr old is only mildly on the spectrum, yet has always been terrified of Santa, WDW characters, etc. Her teacher gave us a social story about how she could just walk by and wave, instead of interacting with them.

I agree 100% with you guys about trying to push their comfort level. We just haven't gotten there yet with big people in suits!! Our older dd is 13, so it's been a long time since she visited Santa. Anyway, thanks for sharing the blog!!

Mrs. Faldred here -- thanks for the blog compliment. I really appreciate it.

When we made our WDW trip, it was LITERALLY 2 days after a doc told us they were on the spectrum. They have made HUGE strides since then. We're hoping to make our next trip ag the end of this year.

 

[GoofTroop]

We have four children: 3 boys, 1 girl. All three boys have ASD, ages 18, 11, and 6. Our daughter is a neuro-typical 14 year old.

Disney has always been wonderful for our family, and is our escape from doctors, therapies, IEPs, etc.

We're actually getting ready to go on a new Disney adventure. We fly out this Friday, with a one night stay at Pop Century, and board the Disney Magic Saturday. None of us have ever cruised before, and our 6 year old has never flown......

This should be interesting, to say the least.....LOL

Elizabeth

 

[LuvsTinker]

We have four children: 3 boys, 1 girl. All three boys have ASD, ages 18, 11, and 6. Our daughter is a neuro-typical 14 year old.

Disney has always been wonderful for our family, and is our escape from doctors, therapies, IEPs, etc.

We're actually getting ready to go on a new Disney adventure. We fly out this Friday, with a one night stay at Pop Century, and board the Disney Magic Saturday. None of us have ever cruised before, and our 6 year old has never flown......

This should be interesting, to say the least.....LOL

Elizabeth

Good Luck and have a great trip!

We cruised a few years ago with our spectrum son when he was 4 (we didn't know at the time he had autism). He did fine for the most part. He wouldn't wear the child ID bracelet on his wrist that the cruise ship required. It end up on his ankle and that only lasted a couple days.

 

[KEVD]

Thanks so much everyone. Right now with DS I am having difficulty with him not talking. We are working with him on it with EI but some days it is really hard when your repeating a word over and over in hopes he will say it. He doesn't say any words right now so I get really frustrated but have to keep telling myself to be patient that he has EI working with him too and that it will come in time. It is hard that I know what he wants but have to play dumb and try to get him to say the word for what he wants and then the tantrums come cause he get frustrated and well.

My 6 y/o son was Dx'd with ASD (PDD NOS) at age 2. He did not speak at age 2, has made great strides since then, although communication is still a challenge. You might already know this "trick" but what we did (learned from EI) is... if we knew what he wanted but also knew he couldn't say it, we'd give him a choice so he could pick one, even if it meant pointing to it. For ex: if we knew he wanted juice, we'd take out the juice and the milk, hold both if front of him and say "do you want milk or juice". He'd have to at least point at the one he wanted. That way it's sort of a middle ground where you're making him do some of communication work yet avoiding the frustration of him not being able to say it.

 

[Disneylvr]

My DD, now 8 years old, was diagnosed with classic autism at the age of 2. Although she has made tremendous progress (in my eyes) she is still non-verbal and has the occasional tantrum. Most of the time she is a loving, affectionate little girl. She is learning to use the iPad to communicate (she loves it!) and in fact it will be traveling with us to Disney today! I would be happy to chat with you any time. I am very active in the autism community here at home.

 

[marcgiu]

Hi - We have an amazing 4 year old son who has ASD (mostly language and Language difficulties) - he has no real behavoural problems but there are multiple challenges. We travel from London to Florida (we are DVC members) every year and he loves Disney - the GAP is very helpfull and he has a great time.
Its easy to feel isolated sometimes but the one thing I always think about is - however hard it gets you wouldnt swap your child for anyone else, you love them unconditionally.

 

[2boysandaprincess]

Hi. My ASD son is now 12. We have been going to Disney every year since he was 4. For several years we would see a developmental leap right after a Disney trip. Just a little more Disney magic I guess.

 

[DOREEN1779]

My middle DS 7 was diagnosed at 2 years 6 months. He is non verbal and has a signing vocabulary of about 100 American sign language words. We have started using the IPAD and IPAD Touch as augmentative devices and they are working nicely. I also live in NJ also and the area I live in has many children's hospitals, developmental pediatricians, and services. There are some long wait lists but if sometimes you luck out and get a cancelled appointment. Being that you got such an early diagnosis, you need to start investigating the school systems. My town has a self contained autistic preschool classrooms that are full day as well as self contained VBA with ABA based curriculum in elementary school. Some towns only offer Multiple disabilities classrooms which are not adequate for spectrum children. Your child is so young and the oppurtunity for growth is endless. We had our first Disney trip was last year and he was great. We already booked for this summer. We also saw a great developmental leap after Disney!

 

[Abby Wednesday]

My son is 4 1/2, diagnosed at 3. He actually hit all the verbal milestones, except that he has difficulty with the social aspects of language, so it's hard to have a conversation with him. He is on the milder end of the spectrum and is currently in an inclusion preschool class. We're also doing an ABA home prgram with me as the primary instructor. He has come really far since he was diagnosed.

 

[nyprincess]

My youngest will be 5 in February and is autistic. He LOVES going to Walt Disney World. We have Florida Resident passes and go about once a month. For Chistmas this year, we will be going on our first cruise ever...Disney, of course!!!

 

[lucigo]

Good Luck and have a great trip!

We cruised a few years ago with our spectrum son when he was 4 (we didn't know at the time he had autism). He did fine for the most part. He wouldn't wear the child ID bracelet on his wrist that the cruise ship required. It end up on his ankle and that only lasted a couple days.

For this dilemma we used to bring a sharpie and write it directly on his hand.

 

[ppony]

My youngest is 4 and has autism. He's mild in a few areas but moderate to severe in most others. He's non-verbal as well. There are a great number of people as you can see here that you can talk to and just share with. I don't get to read this forum often but I know they are always here and VERY supportive!

So far my little man has been to WDW twice and on a DCL cruise once. The trip to WDW and the cruise were when he was just newly 2 and we were still learning so much about who he was and learning so much about autism and what his triggers were and are. So that trip was...well, miserable. I spent most of our cruise in our stateroom, including most meals. Thank heavens we had sprung for the 1 bedroom suite so it was a wonderful room. My DH and oldest DS were able to do most stuff, but of course, we weren't together as a family most of the time and it was very sad. But the second one to WDW, we found out about the GAC and were able to use it to keep him calm and happy. He also wouldn't wear shoes at the time, only thin baby moccasins, so he wasn't walking much either and Disney CMs were SO KIND and wonderful! We only ran into one that needed reminding of what the card meant for him in his stroller. There is no place friendlier for our special kids as Disney.

 

[brown1442]

I have 2 boys on the spectrum... a 9 year old with Aspergers and a 6 year old with moderate to severe autism. Both LOVE Disney!! We are excited about our 3rd trip this coming March!!

 

[kylmac]

I feel for you-about 2 or 3 years ago we did the Mexican Riviera Cruise on DCL from Long Beach and my son had melt downs and was kicking cast members-I was so miserable and I had to drag him from the kids club and take him to our stateroom. He was screaming and our neighbors complained-it eventually got better but boy oh boy, I will never forget that trip!
Elizabeth

 

[ArielRae]

For the older kids when did you start potty training? DS will be turning 2 next month and I have been thinking about when to start. DS doesn't mind his wet or dirty diaper so he isn't eager to start. Also he has no problem just peeing on the floor when we get him ready for bath or changing his diaper.

 

[srberubenh]

My 3 year old was diagnosed with PDD-NOS in June 2011. He was our first child and we had a pediatrician that kept telling us he would eventually talk. We were proactive and had him diagnosed on our own. I can totally understand the frustration when you cannot communicate with your child. He is currently in preschool, gets ABA therapy at home 4 times a week and gets OT and ST outside the home twice a week. It can be exhausting at times, but he has made tremendous progress since June. I only wish he was diagnosed sooner. He is way behind in speech and we use PECS to help us communicate. He speech is improving dramatically. We live in NH, but have managed to go to Disney with him 2 to 3 times a year. We just got back from our most recent trip. My wife made PECS cards for all of the parks and they helped tremendously. We used them for schedules, which prevented or mitigated a lot of meltdowns. I would be happy to share the cards with anyone interested, just PM me. We also got tattoos for him with our phone number on them. They also say he has non-verbal autism. They worked great and were especially useful because he does not like bandages or anything on his wrist. We took an extended vacation and were gone for 3 weeks, 2.5 of which were at Disney. We were concerned that he would regress without school and therapy, but I am happy to report that he has maintained or improved since we have been back. We were able to give him and us some Disney therapy instead of his normal stuff. I think they best and sometimes hardest thing to do is to stay positive and understand that things will get better!