Special Needs Child Vent

[palavra]

I'm so glad you have found support here and not judgment! My DD7 has ADHD and SID. We struggle daily with her needs. Since I don't have any other children, I often grieve for what is an ideal in my mind.Really, there are so many things I'm thankful for, but the difficulties with vacations and other things that many families don't think twice about, are a little hard to take.

We are taking our DD to WDW at Thanksgiving. I am already anticipating sleep problems, crankiness, and reluctance to try new things. We are going to go and enjoy the things that she can do, and that we can live with. It will still be a great vacation.

Good luck!

 

[lucigo]

Lots of great advice as always on this thread! The DISabilities forum will have an immense amount of information for you.

You are NOT alone. My 6yo was diagnosed at 18m and we have traveled with him extensively. I fortunately have a built in support system as his siblings are 14, 18 and 21.

I just want to say to you that all the preparing in the world will help but be prepared to be flexible. Also, take time while you are at Disney to let your son have some things that he enjoys also. Yes Disney has exciting rides and good food...but I can tell you my son hates those things! However, he does like....sitting in the numbers at Pop Century, smelling the flowers at Epcot, studying the polished rocks at the gift shop, riding the bus, and collecting disney cars...just to name a few. Take the time to have a not-so-typical Disney vacation and it will be more pleasurable for the whole family.

I also highly suggest a good quality stroller with a big canopy so he can "vacation from his vacation" when needed. Light-up toys at night, little collectable during the day, whatever he likes to keep him busy. Yes, we even bring the gameboy sometimes

One last thing, our first trip of 2008 (my son was 4) we knew we would be going back, so I made my son a book on shutterfly of the things that he liked about Disney, so that he could read it and look at the pictures and might actually want to go back! Something like that might be helpful for the future.

Good luck, and feel free to PM me if you have any questions.

 

[FSUDisneyGirl]

I agree with many others...check out the disABILITIES thread. I would just post up there about your circumstances...and I'm sure they'll have a million ideas to help make your trip successful.

And...GO TO DISNEY! If you are harboring resentment towards your special needs child, that will only increase if they stop you from going to Disney. But do your homework...check that other boards, search for things you can do to prep....as others said, go to a carnival, practice getting onto/ off of a ride, and definitely get a stroller that your child feels comfortable in. It made me sad to read how you would do things separately...of course that may happen a bit just because of their difference in ages...but don't think of it as separate vacations! Maybe go out in the mornings together, everyone come back for a nap/ swimming and lunch/ chill out time, then maybe one of you can go back in the afternoon with your older child, and the other can take your younger child back in the evening. You can meet up for some rides and dinner!

I know it may be frustrating...but if Disny is important to you, I bet you can make it work...and make it fun for your whole family!

 

[RobinFabulous]

I haven't read all of the replies, but I want to say this. I have a special needs 7 year old who we took to Disney last Christmas. He has an older sister (11) who had been several times with my aunt, and a younger sister (4 now)


He is very similar to your child, he didn't walk umril he was almost 2, didn't talk well until around 5, he was in Speech, PT, & OT since he was 18 months. We did Easter Seals for a few years.


He was VERY happy to be there. Can you go commando? NO. Every single night when he got tired he'd say "Want to go ho-tell" and we'd go. Did we miss reservations? Yes. Did we ride the rides he wanted over & over? Yes. My sister went and if he wanted to go on something over & over she'd take the girls to do something else. Get the GAC card, take breaks, realize you can't do the same kind of trip you'd do with a typical child. He's an early riser, so breakfasts worked well. We discovered lots about him. We did what we had energy to, and when he was done for the day so were we. He enjoyed winding down in the pool. He asked to go home, he slept in the bed with me and I kept assuring him that we were okay. We stayed 6 nights, and next time I wouldn't do such a long trip. I really think as long as you & your DH can split the kids that your oldest won't feel like he missed something and your youngest can have a good time too.


As for the pottying, I had a neuro tell me that mine would NEVER be potty trainde, and at best he was a special ed case. He's daytime trained, but still wears pull ups at night.

 

[RobinFabulous]

I also wanted to add that it is hard when you have a typical child who was one way then a special needs sibling that is totally another.

My SN child has come so so far and each thing he learns is a small victory for him, he's now writing his name and reading sight words. His sister was reading whole books at his age. IMHO you have to let go of what you had before, or what you think you should have, and just see the SN child for what he/she is. Mine has taught me a lot, that things don't matter as much as people, that life isn't perfect, but imperfection can be great as well, and that kindness really counts. He's taught his older and younger sisters so much too.

I know my dreams for him have changed. I don't care if he's a garbage collector or the president of a company or a mechanic or a barber, as long as he has a happy fulfilling life.


We do SibShops for the girls, you might want to look into those for your oldest DS, they help out the siblings of SN children

 

[TheRatPack]

Sorry that you're going through this. I can kind of relate. We adopted 2 1/2 years ago and all the paperwork we received said our children were as normal as children can get with all they'd been through. Well, after just a few months at home with them we knew better, our then 3 year old has some issues that we just couldn't figure out. Sadly all the specialist we've seen can tell us something is wrong with him, but just can't narrow it down.

He pottied on himself up until....2 or 3 months ago and he's 6 now. He can speak normal sometimes, othertimes....not so much. He can not connect cause and effect and doesn't have a lot of the same skills as other children his age. It's hard not to compare him with other children, I've had to keep myself from signing him up for a lot of age related extra curricular activities because it's just so difficult to watch him struggle with other children his age 'getting' it.

The first year we went to Disney with him it was horrible. We almost checked out after 2 days to head back home. The second year was so much better....although he still has a lot of soothing mechanisms that we have to look over, and we have to look over people when they say something about his 'harness' because he's too big for a stroller.

This year I'm praying it goes even better. And I hope you get to go on a trip soon and get surprised at your sons reactions and behaviors It's draining and seriously no one understands unless they've been through it. At first a lot of our family members distanced themselves because they just didn't see what the problem was and only caught limited behavior issues....still a lot of them don't want to hear about our stresses so we have to seek out other special needs parents to vent to.

Hoping that your trip turns out well....seek out a special needs Yahoo group or someone local to get yourself some relief it really helps.

 

[rie'smom]

I haven't read all of the replies, but I want to say this. I have a special needs 7 year old who we took to Disney last Christmas. He has an older sister (11) who had been several times with my aunt, and a younger sister (4 now)


He is very similar to your child, he didn't walk umril he was almost 2, didn't talk well until around 5, he was in Speech, PT, & OT since he was 18 months. We did Easter Seals for a few years.


He was VERY happy to be there. Can you go commando? NO. Every single night when he got tired he'd say "Want to go ho-tell" and we'd go. Did we miss reservations? Yes. Did we ride the rides he wanted over & over? Yes. My sister went and if he wanted to go on something over & over she'd take the girls to do something else. Get the GAC card, take breaks, realize you can't do the same kind of trip you'd do with a typical child. He's an early riser, so breakfasts worked well. We discovered lots about him. We did what we had energy to, and when he was done for the day so were we. He enjoyed winding down in the pool. He asked to go home, he slept in the bed with me and I kept assuring him that we were okay. We stayed 6 nights, and next time I wouldn't do such a long trip. I really think as long as you & your DH can split the kids that your oldest won't feel like he missed something and your youngest can have a good time too.


As for the pottying, I had a neuro tell me that mine would NEVER be potty trainde, and at best he was a special ed case. He's daytime trained, but still wears pull ups at night.

Your post reminded me of a few years ago when we invited my daughter's nanny and her son to come with us to WDW. He is autistic. After a few hours in the park, he'd say,"No more Disney Swirl, I want to go to the Dolphin's house." We were staying at the Dolphin hotel. We left when he was tired. The trip was fabulous. Since then, we've invited them on every Thanksgiving trip including the one coming up in a few weeks. He "makes" the trip for us every time.
We stayed at the Dolphin on the subsequent trips because he was familiar with it. This year, we've switched to CSR but I've emailed her links to the resort so that Christian can see them and become comfortable. He's looking forward to it!

 

[SueM in MN]

..........although he still has a lot of soothing mechanisms that we have to look over, and we have to look over people when they say something about his 'harness' because he's too big for a stroller.

If a stroller would be better for him, follow the link in my signature to the disABILITIES FAQs thread. Post #2 of that thread has links to companies that rent special needs strollers, which are large enough for small adults.

 

[Bugsmom73]

I haven't read all the replies yet.

My youngest has autism and sensory integration issues. We prep like mad before a trip but he is expected to behave in a manner that is appropriate, he always has had this expectation. It sounds like your guy knows he can get a response. He is expected not to scream in a restaraunt. He sleeps well on trips, as long as he sleeps with his dad.

 

[arielmomma]

I am so sorry to hear that you are struggling. It is very difficult for a mother to admit that she is having such feelings. It is healthy to vent and I am so glad to see that your Dis Family is supporting you.

I do not have advice. I, too, have had some Disney disappointment as my 58 year old mother has been diagnosed with mid stage dementia and has moved in with us this month. My DH and I were supposed to go on our first trip alone this winter for our anniversary and now it looks like it will not be able to happen.

I kow what it is to feel angry and frustrated and overwhelmed, and all the while feel guilty and selfish about feeling that way. You are not alone. I will send a prayer of peace your way. God Bless you!