Some days I want to take the trip, other days I want to cancel! UGH!

[G&J's Mom]

I did not know this board existed, but I am sooo glad I found you!!! Sorry if this is long.

My DD is 4. I realized she had issues when she only said about two words by the time she was 18 months. Everyone told me not to worry, she was just a late talker. I have a nephew who is autistic so I was not going to do nothing. I had her evaluated and they suggested possible PDD. She is very social and very affectionate, so this possible diagnosis was ruled out rather quickly. Since then, her receptive speech has improved, while she still struggles with significant expressive speech delays as well as fine motor skill delays. She also struggles with sensory integration issues although some are improving. She has seen specialists and it is still unclear what is wrong with my baby girl. Regardless, she is a happy little girl, very content. She qualifies for special ed classes through our local elementary school where she can receive ongoing OT and Speech Therapy. She seems to really love it.

I have our first trip planned for next month and every other day, I think about cancelling or postponing it, becasue I am worried about her going on overload. She gets very aggitated and babbles on relentlessly saying the same things over and over and over again until she blows a gasket sometimes, and she can not calm down. Like if we want to go one way and she wants to go another, something that simple could turn into a huge meltdown. Can anyone relate to this??? Waiting in lines is going to be a nightmare. I think I will be very thankful for FASTPASS, otherwise I would not be contemplating this at all, although I know we will have some waiting. I also have a busy 2 year old, so that adds to my stress as well.

I have discussed the trip with her teachers and they feel optimistic that it will be a good trip for her. I still feel so apprehensive. My DH is not very supportive on the subject. He has yet to take off his rose colored glasses and realize there is an issue with our DD.

Thanks in advance for any input or advice.

Denise

 

[dbal]

wow- you really sound alot like me. My daughter has asd and I know what you mean about the meltdowns. I also know how it feels to just want to throw in the towel when planning outings. Sometimes they seem like they are more trouble than their worth.
I will offer my 2 cents- Your trip is so soon. Look forward to it. It won't be easy, but I bet it will be worth it. My dd has been there twice, and both times felt like a window opened. Her language improved; as did her mood. When she got overwhelmed- we slowed down. These have been our only vacations where she didn't want to go home. I also have a 2 yr old now, so I know that it can be more stress.

Take each day slow - I bet she will surprise you. There is something about this place for these kids. the stuff that would normally set my kid off- ended up being the things she really wanted to do. Some of my fondest memories are our trips w/ her to the world. Good luck and have a great time.

Oh, and when all else fails - a frozen treat always seemed to make her smile. good thing theres one around every corner.

 

[gritzel4]

My DS is 6 yrs old and had ASD. I also have a DD who is 4 years old. We first took them to WDW last May. It was one of the BEST vacations ever. Get the GAC (it will make your life easier). Take breaks from the action. There are some great places to relax (monorail rides, train rides, Tom Sawyers Island). Go to www.wdwig.com and read up on Taking Special Needs Children to WDW. If you are staying close by, take a break in the middle of the day.

Above all elwe - ENJOY yourself

 

[G&J's Mom]

Thanks so much for the encouragement. We are staying onsite and we will have our own car, so I think that will help for quick exits if need be.

I am curious. What is ASD????

Denise

 

[gritzel4]

Good choice staying on site. It is much easier to get away and have some down time. Having your own car is a plus - not having to relay on WDW transportation and staying on-site allows you to park for free.

ASD is Autism Spectrum Disorder. These would include: Autism, Aspergers (AS), Pervasive Development Disorder - Not otherwise specified (PDD-NOS), Retts Disorder and Childhood Disintegrative Disorder.

Now that is a mouthful. If you have any questions, feel free to ask.

Have a great time

 

[s&k'smom]

Go, go, go on your trip and enjoy. We did and are planning another. Any kid at WDW can go into overload. Somethings we were able to do and others we didn't. One night I couldn't get DS on the monorai and had to take a cab back to GF from Epcot, but you know by the end of the week the monorail was his favorite.

Staying on site is great, take lots of breaks and enjoy the hotel. There are a lot of great past threads on here with good advise. Take care.

 

[G&J's Mom]

Thanks again! I feel soooo much better. We are "definitely" going. She was watching the planning video last night for the 500th time and was sooo excited. She kept watching and was grinning ear to ear, saying over and over and over, "mama, go there". Tugged at my heart.

I have been reading more about ASD since I came back here and read the responses that you wonderful people left. I think she is definitely on the spectrum. I just want to make sure I am doing everything I can for her and finally for me. This has been an emotionally exhausting 2 years.

If I can please ask another question. Who or where should I "try" and go to for another evaluation. At her pediatricians referral, I even went to the Marcus Institute here in Georgia, waited about 4 months for an appointment, and the doctor said she exhibited autistic characteristics but they could not diagnose her. The doctor told me she was stumped and sent us on our way Gave me no other direction to go. That after 4 months wait? UGH!

You can even PM me if you can help.

Thanks sooooo much!

Denise

 

[gritzel4]

Here is a post that I provided on another thread regarding ASD. I know how frustrating it is when dealing with specialists. I already did a search on Talk Autism Now for the state of Georgia and you should be able to find out more information there. I am not really sure what your state offers as far as services. I happen to live in NJ the ASD capital of the world (not joking). We have 2 private schools in Princeton just devoted to ASD, 1 county school for special services and our local school district has a specialized preschool program for the developmentally delayed. God must have known that this was the place for us before we had children. One of my son's friends from school used to live in France but they relocated to NJ after he was diagnosed.

Feel free to PM me if you have any questions or need to vent.

My son was diagnosed Autistic when he was 2 1/2 years old. He displayed many of the same symptoms as your child. I know how scary it is to wait for evaluations and diagnosis - hang in there. My son just turned 6 and was re-evaluated and re-classified as having Aspergers (still an Autism Spectrum Disorder - ASD - but a milder form of autism). Here are a few websites that may be helpful to you:

Talk Autism Now www.talkautism.com

Asperger Syndrome Coalition of the United States www.asperger.org

Autism Society of America www.autism-society.org

New Jersey Center for Outreach and Services of the Autism Community (COSAC) www.njcosac.org

On-line Asperger's Syndrome Information and Support (OASIS) www.udel.edu/bkirby/asperger

Cure Autism Now www.canfoundation.org

National Alliance for Autism Research www.naar.org

It takes a special person to be the parent of a special needs child. God only gives the special angels to people who can handle them.

 

[dbal]

That was some great info. from gritzel4. I will be using some of it myself. Thank you very much. Also use your pediatrician for info. This has become an epidemic and you can be pretty sure that they have seen this before at least to point you in the right direction.

gritzel4- if you don't mind me asking how often is your son reevaluated? My dd will be 6 in june and she is seen now about once a year to reevaluate. also- does your son receive any extra support at school? my dd will start ktg. in the fall and I'm debating on sending someone with her. thanks


G&J's mom I know you will have a blast. When I read your last post about your dd watching the video over & over. that made me smile. Mine did the same thing. Strange how when you share the similarities in their behaviors -it really brings you comfort. Nice to know you all are out there too~!

 

[gritzel4]

Dbal: I'm glad that you can use some of those websites.

My son's first eval was when he was 2 1/2. This provided the initial diagnosis (Autism). With his diagnosis in place, he started a full day (5.5 hours) autistic preschool program at the county special services school upon his 3rd birthday. He has attended the school for the past 3 years July - June (not a typo - regular school runs sept - june, he attends a 6 week program in the summer for maintenance). The local school district requires a new evaluation every 3 years. This is to ensure that the child is in the proper placement. My son just had his re-eval and his diagnosis was changed from autistic to aspergers (both are ASD but with differences). I can request the evaluations to be done more frequently but thus far I have been thrilled with the level of care he is receiving.

I'm not sure what you mean about extra support at school. My son goes M-F, his class size is limited to 6 children, teacher, 2 assistant teachers, a speech therapist and occupational therapist.

Is your DD doing a self-contained ktg? Integrated ktg? or mainstreamed into "typical" ktg? Your DD abilities and the ktg setting would determine if an aide would benefit her. Is she verbal, need help w/ self care, social or able to stay focused?

 

[Talking Hands]

The school I normally sub in has autistic spectrum children in 3 different settings. These are children that austistic spectrum is the primary diagnosis and their are no additional issues such as deaf, blind, or physical impairment.
First setting is self contained classroom with no more than 8 students, a teacher and 2 paraprofessionals. Speech therapist comes to the room but occupational and physical therapy are pull outs.
Second is mainstream classes with pull out for speech, OT and PT if needed. There may or may not be a paraprofessional for the class or as a one on one. One regular ed teacher.
Last is inclusion classroom with 2 teachers, 1 regular ed and 1 special ed and a paraprofessional for the class. Can have a one on one as well of needed. Speech, OT and PT are pull outs.
Some students are mainstreamed for PE as a group with their self-contained class. IE the entire class takes PE with one of the regular ed classes in the same age group. Others are mainstreamed only for math, or language arts because they cannot tolerate a full day in the mainstream classroom.
Because we are a large center school with both special ed and regular we can have all these options in one school and kids if necessary can go back to the self contained classroom to destress. Each student is assigned to one of the self-contained teachers even if they are mainstreamed or in inclusion classes.

 

[G&J's Mom]

gritzel4,

Thanks so much for the sites. I am hoping to learn more and also hopefully find a support group in this area for myself. DH and his family are non-supporters on the subject and think I am overreacting. I struggle, cry and get frustrated all by my lonesome. I am overwhelmed. My family is on the other side of the country and supports me the best they can.

I am actually more nervous about DH's actions in WDW then DD's. He would rather chalk up her issues to "she's a brat and that is why she acts that way" then try and be supportive and realize that although she is 4 and has her moments, that is NOT why she is the way she is. He has very little patience for her and tends to get her even more aggitated then she already is when she has a meltdown. That was another reason I had considered cancelling. There is a slight chance "he" may ruin our vacation.

My DD is evaulated before school starts and when it ends, and then there are two updates in the middle of the year and her IEP's updated. The school she attends is wonderful. There are 6 kids in her class, and she has access to a speech and occupational therapist. She will attend 5 days a week this next year in the morning and then attend a regular prek program in the afternoon. She gets to ride the school bus and she thinks that is the absolute bomb!

Thank you all so much for your input. It is nice to have people in similar situations to chat with.

Denise

 

[DBC]

Originally posted by G&J's Mom
I did not know this board existed, but I am sooo glad I found you!!! Sorry if this is long.

My DD is 4. I realized she had issues when she only said about two words by the time she was 18 months. Everyone told me not to worry, she was just a late talker. I have a nephew who is autistic so I was not going to do nothing. I had her evaluated and they suggested possible PDD. She is very social and very affectionate, so this possible diagnosis was ruled out rather quickly. Since then, her receptive speech has improved, while she still struggles with significant expressive speech delays as well as fine motor skill delays. She also struggles with sensory integration issues although some are improving. She has seen specialists and it is still unclear what is wrong with my baby girl. Regardless, she is a happy little girl, very content. She qualifies for special ed classes through our local elementary school where she can receive ongoing OT and Speech Therapy. She seems to really love it.

I have our first trip planned for next month and every other day, I think about cancelling or postponing it, becasue I am worried about her going on overload. She gets very aggitated and babbles on relentlessly saying the same things over and over and over again until she blows a gasket sometimes, and she can not calm down. Like if we want to go one way and she wants to go another, something that simple could turn into a huge meltdown. Can anyone relate to this??? Waiting in lines is going to be a nightmare. I think I will be very thankful for FASTPASS, otherwise I would not be contemplating this at all, although I know we will have some waiting. I also have a busy 2 year old, so that adds to my stress as well.

I have discussed the trip with her teachers and they feel optimistic that it will be a good trip for her. I still feel so apprehensive. My DH is not very supportive on the subject. He has yet to take off his rose colored glasses and realize there is an issue with our DD.

Thanks in advance for any input or advice.

Denise

I'm not sure if you know that you can get a pass (if you provide a letter from your pediatrician, etc stating your daughter's condition) that will allow you to use the fastpass entrance on most attractions without having to get an actual fastpass.

I did a (very long) trip report that's posted on another website about our trip in Sept of 2002 with my autistic son and using this pass. Short story go and have fun. Long story: shoot me an email and I'll send you a link to the trip report if you wish.

Here's a link to a current discussion about that pass on this board:

http://disboards.com/showthread.php?s=&threadid=566550

 

[LMC]

I don't know how to PM here so I'll just post this here. You mentioned that your pediatrician is clueless. (I have a 9yo who finally got a medical diagnosis last May after searching for his entire life!). If you have not seen a neurologist, do so soon!!!! When my child was 3yo the pediatrician was clueless and I was not too persistant with him being my first child. Then I finally saw a neurologist when he was 4yo and he was SIGNIFICANTLY behind his same aged peers. We met with a developmental neurophyscologist and she tested him on all sorts of things. He received about 6 mos of PT and OT. We continued to trudge along in the trenches until the DENTIST informed me that he has a dental problem. I researched it and lucky for us (I say lucky because we finally got some help!!!) it appears his dental problem is genetic. I immediately told my pediatrician that I wanted a referral for a geneticist. Until that point I thought geneticists only worked on the genetic code and did research; I did not realize that they saw patients! So my first recommendation is to see a neurologist, then a developmental neurophsyc, then if they can't give you any answers, then maybe a trip to a geneticist would help. They evidently can provide answers when no one else can (My sons neurologist told us that if there was anything there --since he couldn't make heads or tails out of our situation---then a geneticist would find it). He was finally diagnosed 1year ago by the geneticist with a rare genetic syndrome. Now I'm not implying that every child that has developmental delay or problems might have a syndrome but I am thankful that we finally received a diagnosis. Although this doesn't help w/ health insurance to cover many treatments, at least I know why we deal with some of the things we deal with.
Also, I am from the Birmingham, AL area and we are hopefully going to go to a clinic that test children for delays. It is the Sparks clinic at UAB hospital. I think the testing is very expensive but I believe they tell you your child's deficits and what should be done to help overcome those (therapies, school help IEPs!!!)
Good LUCK!