Looking for other families with a child with autisum

[ArielRae]

Hi we have a little boy almost 2 that has autism (our only child) and would like to connect with other DISers with autistic children too. Love someone with a child around his age or a little older that we can communicate with and support each other. I know they have other sites that specialize with this but they can bring you down and I love to talk with someone who also has a strong love for Disney too.

 

[staceyhzoo]

We have a 6 yr old dd with Asperger's Syndrome. She also has SPD and a few other things related to her traumatic birth. She started going to Disney at 18 months and we have gone yearly (except the year ds was born) since 2006.

Just realized I probably need to change my ticker since she turned 6

 

[sl_underwood]

I have a 7 yo with autism.

 

[lucigo]

My son is 8, we had year passes in 2005, 2008 and 2011. You can get some great ideas on these boards for preparing for a trip with a child with autism.

 

[Fort Bordeaux]

My son is 3, we has PDD and SPD. He has made HUGE leaps and bounds in the last yr.
I know how it is to feel alone in this world of autism

 

[kirstenb1]

We have a 6 yr old with ASD. She was dx'd at 20 mths. I know exactly what you mean about websites being hard on your nerves. I had a 5 minute rule back then. No more than 5 min on autism websites, then switch to something that gave me positive energy.

Anyway, dd is mainstreamed into a kindergarten class with no aide. She is doing very well. I volunteer at her school a couple of days a week. Yesterday, I saw her sitting at lunch just laughing her head off at whatever her friends were saying. Her initial prognosis was not so great, but she had 3 yrs of special ed preschool, as well as private OT and PT, and is doing pretty well. I'm here to lend a shoulder or hug if you need one.

 

[lucigo]

My son is 3, we has PDD and SPD. He has made HUGE leaps and bounds in the last yr.
I know how it is to feel alone in this world of autism

I hate seeing things like this, it makes me so sad. In our local community we have a wonderful autism group that does monthly meetings, summer camp, breakfast chats, facebook groups, you name it. They have saved my sanity more than once. Please look into your local groups, and if there isn't one...start one!

Hugs!!

 

[krisalee78]

Hi!

My 3 year old DS is on the Spectrum, he was diagnosed nearly a year ago. This past year has seen HUGE improvements for him. We are planning a trip this fall/early winter, and one of the reasons I'm here at DIS boards is to figure out how to meet his needs while there as well.

Looking forward to getting to know all of you!

 

[MinnieVanMom]

DS is 8 and we are going back for his annual Birthday trip to Disney in March. I remember feeling so alone when he was first DX and yet still to this day. Because of where we live, we not being of the 95% of religion in the area, we don't have very many friends at all. No one to talk too.

You are right, the autism boards make me depressed. There is a post in the community area here, welcome to schoomland. I find it very supportive because everyone there gets "it". I don't feel so alone just by reading that thread each week.

Please fee free to PM. I don't have any support here at all but just get on with each days as it come.

 

[snow88]

I have a 5 yr old son with Aspergers. He was just recently diagnosed. The population is small so there are very few people here with Autism and they don't seem at all interested in forming a support group.

I had a meeting with the ABA Specialist and she tried to form a group but the other lady (parent of a child on the Autism Spectrum) that showed up just asked her a few questions about filling out forms and left.

 

[kylmac]

Our son is 10 and has autism-he has come along way from his initial diagnosis at age 2. He loves all things Disney and will talk your Mickey ears off about our magic place. He loves all the rides-we have even traveled to Paris just to go to Disneyland Paris-we go to Disneyland about every other year and do Disney cruises about every other year. We live in Northern Virginia and feel very blessed due to the school he attends (public) and the teachers there. He has additional therapy (ABA and social group) outside of school and still gets OT at school. Autism can make you feel alone but there are so many positive people on this particular board with so many wonderful stories it is hard not to have your spirit lifted. I love reading the posts and saying "wow, that happened to me as well". It makes you feel so not alone. Hang in there-our children are gifts and we have to figure out what makes them special. It is hard to feel the "specialness" when your child is aggressive (my child) but there are so many times when you see the quirkiness in your child that others don't see and appreciate them for who they are. I still get kisses at bedtime from my son who is 10 where as I know many 10 year olds who might not let their mothers kiss them goodnight.
Best wishes-Elizabeth

 

[CityGranola]

My oldest is 6.5 and has SPD (I know it's not exactly the same, but similar in some regards.) I also have a just turned 3 year old and will have my third in June.

 

[LuvsTinker]

My younger son on the spectrum just turned 12.

He loves Disney too

 

[of2dbeach]

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 !

 

[ArielRae]

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.

 

[kylmac]

ArielRae-I spent 45 minutes (I felt like it was 3 hours) sitting in front of the refridgerator trying to get my son to say "milk". We cried almost the whole time but I wanted him to at least try to say anything. Now that time has gone by, he does not stop talking! Most of it is about Disney movies or Disney rides but at least it is something. Hang in there!
Take care-Elizabeth

 

[Reddy]

my boys are 14 & 16 - both non-verbal
you might try asking about a dynaVox - it looks like a computer tablet with the PECs on it (been told the Ipad has the program for it too)
my youngest is doing really great with it

 

[sl_underwood]

Arielrae- I have been there. My son came to me at 4 years old and was non verbal (according to the professionals by choice) He has the ability to speak and slowly he started to but at 7, he still chooses to speak more caveman speak, like for instance he will say milk when he wants a drink, I will say what about milk and he will say want milk. I will say who wants milk and he will finally say I want milk and then I will say whats the magic word and he will regress and say please have milk. We fight for every word somedays. It can be hard and frustrating and sometimes it very much feels like you are alone in the world fighting an uphill battle but there are other moms out there just like you. Reaching out is probably the best thing you can do. I may never have any answers but I am always here for support and there are tons of other moms who will listen too.

 

[ArielRae]

DS loves his IPad and has no problem navigating it.

His therapist says that he says UP while at daycare but I have never heard him say anything. It is frustrating to hear the therapist says things he does at daycare but then he does not do them while at home. He has always been big at being out even eats better when we are out. Therapist says that he may feel more comfortable working on things while out at daycare then relaxes at home since he feels comfortable and not feel he needs to continue when at home.

 

[Faldred]

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".