Looking for other families with a child with autisum

[ArielRae]

I am reading everyones post but I don't understand the abbriviations. Please write them out. Thanks.

 

[Cheshire Figment]

I am reading everyone's posts but I don't understand the abbreviations. Please write them out. Thanks.

Check out this thread http://www.disboards.com/showthread.php?t=1660743 which is a large list of common abbreviations. You might want to open it up as a separate tab while on DisBoards to get to it as a quick reference.

 

[ArielRae]

Check out this thread http://www.disboards.com/showthread.php?t=1660743 which is a large list of common abbreviations. You might want to open it up as a separate tab while on DisBoards to get to it as a quick reference.

I know the Dis abbreviations I'm talking about the ones people are using when they are talking about their kids.

 

[srberubenh]

PDD-NOS - pervasive developmental disorder - not otherwise specified
ST - speech therapy
OT - occupational therapy
ABA - applied behavioral analysis
EI - early intervention
ASD - autism spectrum disorder
IEP - individualized education plan
PECS - picture exchange communication system

 

[ArielRae]

Thanks

 

[Abby Wednesday]

ArielRae-- I started talking to my son about it and I got him a potty at around 2. He didn't really get it until he was 3. What helped the most for us was a book he really took a shine to. Well, the rewards(AKA bribes) for using the potty didn't hurt either. As far as getting a book goes, get one with good, clear pictures. I've heard people suggest actually taking a picture of #1 and #2 inside a toilet to help their children understand that's where it needs to go, but we didn't need to do that.

 

[brown1442]

My oldest son (dx Aspergers) essentially potty trained himself when he was 27 months old. He looked at his baby brother in diapers and wanted nothing to do with wearing them himself any more. We took him to Target and let him pick out Thomas underpants and told him he wasn't allowed to pee on Thomas. He's such a rule follower (huge Asperger symptom) that was all it took... he was day and night trained from that day forward!! Easy as pie!!

Now my younger son (dx Autism) was a whole other story!! He'll be 7 in May and is STILL not fully potty trained!! OY!! We tried at 4 but he clearly wasn't ready so we put him back in diapers and tried again at 5. His ABA team did a potty party to help train him. At this point he's "timed trained" we take him to the bath room every 2 hours and he can stay dry in between but he doesn't tell us he needs to go and he doesn't go on his own. We put him on the toilet at 5:30 every evening to have a bowel movement and he still has frequent poop accidents to be honest. He's still in diapers at night too.

 

[kirstenb1]

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.

We didn't start til dd was 4. She's very small for her age, so finding diapers/pull-ups to fit was always easy. DH set up the computer so that it would tell dd to sit on her potty every 20 minutes during the day (she gets easily frustrated when we tell her the same thing over, so he was trying to take teh conflict aspect out).

We set up her potty seat in the family room, so she could watch tv, etc while she was trying. She had lots of accidents, and all of us were getting frustrated after a week. She had a complete meltdown, and refused to sit on the potty. I said "fine, you can just go back to diapers". For some reason, that made her even madder than having to try. It totally turned the tide, and she was potty trained.

 

[meloneyb21]

Hello, I have a non-verbal 3 y/o son who was just diagnosed with autism literally 2 weeks ago. According to the psychologist, he is GREAT socially, but very behind in his language/sensory skills. So far, he has been going to a school for ST and OT 2 hours everyday. We have been to Disney 3 times with him and we never have any problems. I have been advised to look into support groups, so I am doing that online and within my community as well.

ETA: We're also in the process of potty training, but he doesn't seem interested.

 

[amymugica]

Love the support and advice on this thread!

My DD (age 6) has ASD/PDD & has been to WDW every year since she was 13 months. She is in a special ed classroom with time in general ed (kinder), as well. She gets ST, ABA, and a ABA playgroup every week in addition to her school ST and OT.

She has made great strides over the past 4 years, but my husband and I never fail to be amazed at how much she progresses when we are at Disney!! We have learned to watch her (she is verbal, but at about a 3 yr old level - a huge accomplishment since she didn't say hi or no until she was 3!) and evaluate what she's ready for on a day-to-day basis. We have to be sensitive to sensory issues, etc. (She loves most rides, but I made the big mistake of taking her on Thunder Mtn without considering how LOUD it is. it had never occurred to be before.)

She will push boundaries when we are at WDW and seems so open to new experiences. She will talk to strangers and say no when she doesn't want something (YES to hugging the Beast, but NO thank you to Belle).
On our last trip (Dec 2011) she started requesting to go potty!! (The only bad part - she regressed as soon as we returned home. Guess we need to move to WDW!)

That said, we obviously can't live in WDW and have to deal with "real world" everyday. Hang in there and know that there are a lot of other parents who feel your pain, sorrow, and frustration on those "regular" days.

As Dory would say, "JUST KEEP SWIMMING!"

 

[disney fan4]

My son is 8 and on the autism spectrum. He devloped as expected until 2 years when he stopped talking. We have been through years of speech but live in a small town and have had only family for support. I am very excited to say that as of our last speech report he has reached all his goals. He is now taking taekwondo, making friends at school and I see improvements in his social skills. It is amazing how far he has come! We are taking our first family trip to WDW in March!!

 

[OttawaDisGirl]

We have a 9 year old son diagnosed with PDD-NOS about a year ago. We struggled for years before his diagnosis. Everyone (including our family doctor) told us he was difficult, obstinate or that he'd grow out of it.

We love Disney World.

It'll be our third trip this May! I'm getting started on our itinerary. We're happy to see other families here like us. We aren't alone and that helps a lot!

 

[hsmamainva]

I have a 17yo with Aspergers and a 10yo with Autism.

Our whole family loves Disney and we are so excited to be going back!

Just 2 more sleeps!!!

 

[robin09]

My son is 18 Autistic/ Epileptic. he isnt into the parks that much anymore. I think its his sensory. He LOVES disney movies and has all of the classics and some he has 2 of. he is super smart he gets them at Goodwill for 50cents each lol. He has them memorized and makes us recite them then he claps his hands giggles and yells "You did it, You did it! He is a great kid.i know what it is like to be lost in the world of Autism. We live in a big city in Fl and there is no support here for older kids with Autism. DD9 ( seems to be on the spectrum too but docs say she isnt. Let a train whistle or fireworks go off and she is like she was shot out of a cannon, very picky with food, speaks super softly,hoards stupid things just to name a few. You might want to read the poem "Welcome to Holland" but grab tissues before you do. If you need an ear I am here and so many others also. Hang in there! My DS wasent Dx till he was 3 which is late. He has come along way and now is in job training. He likes to fold cardboard litter boxes for the Animal Shelter in exchange for playing with the kittens which he thinks is hyseterical ( we have 3 cats and a dog) Chin up !

I would love to talk to you.. DD is 13, aspergers, ocd, sensory.. and so on..I find so little for the older kids on the spectrum. We live in a small town in Ny, and would love to move south. We just got off the cruise and dd did not want to come back, she wanted to go to school.down in Fla. Said she wanted to start over where noons knows her and thinks shes weird... breaks my heart. She aklso giggles and claps her hands when happy with Disney.. how is Florida fornour.kids?

 

[lucigo]

I would love to talk to you.. DD is 13, aspergers, ocd, sensory.. and so on..I find so little for the older kids on the spectrum. We live in a small town in Ny, and would love to move south. We just got off the cruise and dd did not want to come back, she wanted to go to school.down in Fla. Said she wanted to start over where noons knows her and thinks shes weird... breaks my heart. She aklso giggles and claps her hands when happy with Disney.. how is Florida fornour.kids?

From what I have heard NY has much better services than Florida.

 

[robin09]

From what I have heard NY has much better services than Florida.

I live in a small upstate village in NY. There are not any services here.. I must drive at least an hour to get near any help. I mean the school does help, we have an iep.. but the acceptance of who my child is not there. There is frequent detention... for talking, for pushing paper off her desk, for not getting to class on time....

I'm tired and worn out... DD13 just wants to be accepted... It just might be time to move, just afraid that the grass is not greener!

 

[lucigo]

I live in a small upstate village in NY. There are not any services here.. I must drive at least an hour to get near any help. I mean the school does help, we have an iep.. but the acceptance of who my child is not there. There is frequent detention... for talking, for pushing paper off her desk, for not getting to class on time....

I'm tired and worn out... DD13 just wants to be accepted... It just might be time to move, just afraid that the grass is not greener!

Where I live in Florida there is a very tight autism community, and to me that makes a big difference. We do parent chats and have a summer camp, have monthly informational meetings, have walks, and fundraisers. All of our friends are what Parenthood called "short bus friends". We have swimming parties several times a week over the summer. We go bowling, horseback riding, to the park, etc. This is something you can seek out wherever you live.

The schools are pretty good but not perfect. You won't get an aid, and the teachers are frustrated that our children's test scores count toward how much they will get paid. If you are interested in the gulf coast (Pensacola area) I would check out Autism Pensacola on facebook and get in touch with other aspie parents with kids around your child's age.

My son is only in 2nd grade but I'm preparing for possibly having him do virtual school once we get to the middle school years, just in case I'm not happy with what happens within the schools by that time. So far so good though, I love the teacher he has now, which again is a very individualized thing. Next year could be a different story.

 

[JennyWren]

My son is 12 and diagnosed with ASD. He is about 60% non-verbal (no conversation, he can request his wants, we are working on yes/no questions). We started potty training around 2 1/2, however he was not potty trained until around age 7. He LOVES everything Disney...to the point of distraction !!! We are currently planning his 4th trip for next June.

 

[Colo Nana]

Hi I'm a gramma raising my almost 2yr old grandson whom I'm sure is on the spectrum. I haven't got diagnoses yet as his mom isn't helpful & thinks there is nothing wrong yet she only sees him maybe once a month. His sperm donor just got out on parole & they are going thru custody battle, soon as its over I'm petitioning for custody as he had been with me for all his life & the last yr without mom. He only has a few words, knows no fear, bangs his head, spins, toe walks & would prefer to sing in gibberish. The only one he even gibber talks to its his puppy we got him for christmas. I felt alone alot the ppl I told about him thought I was crazy I guess then my fiance had 12 days off @ xmas & see what I go thru daily. Feel free to msg me and we can talk if you like. I know several good spectrum groups on fb that I love... Hugs keep swimming I tell myself this daily & NEGU...fight with all you are for your baby.

 

[ppony]

Hi I'm a gramma raising my almost 2yr old grandson whom I'm sure is on the spectrum. I haven't got diagnoses yet as his mom isn't helpful & thinks there is nothing wrong yet she only sees him maybe once a month. His sperm donor just got out on parole & they are going thru custody battle, soon as its over I'm petitioning for custody as he had been with me for all his life & the last yr without mom. He only has a few words, knows no fear, bangs his head, spins, toe walks & would prefer to sing in gibberish. The only one he even gibber talks to its his puppy we got him for christmas. I felt alone alot the ppl I told about him thought I was crazy I guess then my fiance had 12 days off @ xmas & see what I go thru daily. Feel free to msg me and we can talk if you like. I know several good spectrum groups on fb that I love... Hugs keep swimming I tell myself this daily & NEGU...fight with all you are for your baby.

That child is so BLESSED to have you as his grandma!!! Blessings to you and HUGS. You are a GIFT!