help with dev delayed 3 yo, advice anyone?

[sl_underwood]

We went to Disney World last year and had a magical trip and at that time I had only one child with health issues (she has aplastic anemia, but is currently doing ok) Her only probs last year was tiring easily and so forth, which is still an issue so I figure we will need alot of down time. We really missed alot and would like to do disney again this year, but in Nov. we got a call from our CPS asking us to take another child (we are legal risk foster to adopt parents) So now we also have a 3.5 yo with severe developmental delays. His speech is around 12 months, social skills non existent, gross motor delay due to abuse (he spent several weeks hospitalized and came to us in a full body cast), probably will be dx with RAD, ADHD, etc. We are still working on toilet training and behavioral issues. We want to take him with us for this next vacation (was scheduled for star wars weekends but now I am thinking August/Sept. or possibly 2nd week in Dec. Any suggestions or helpful hints?

 

[amykathleen2005]

I would only suggest to take it really slow. Maybe just 4-5 a day in the parks with breaks in between. Also, do you know how he would react to a character interacting with him. That may also be an issue that you need to address before you have a very upset kid.

 

[sl_underwood]

Honestly I dont know how he will react. He tends to have some sensory overload issues, granted it usually happens when people are yelling or screaming that sort of thing. Before we got him he spent most of his time locked in a room with a tv. Since we havent really taken him alot of places. We have gone on a short trip to visit relatives around the holidays but really havent done much else. He loved watching the travel channel special about the holidays at DW and he liked the planning video also. My dds got him to watch it to convice me not to cancel the trip for this year. We will already be taking it slow even if that means splitting up a bit so my younger dd and my son can have break time, my older dd is planning to bring a friend and my brother in law is planning to come so he can help us as well.

 

[OneLittleSpark]

I second the "take it slow" approach. You might be able to use his stroller as a "safe place" for him to retreat to if he needs. Just an enclosed, familiar place with a special toy or two might make all the difference.

Also, slightly OT, but you might want to consider renting a wheelchair for your daughter. I know it may seem a little drastic, but a lot of people who don't normally use a chair but suffer from fatigue problems / recurring injuries etc, find they really benefit from renting one around the parks. There's a lot of walking, and if it would help you guys to see and do more, it might be worth considering (see the FAQ for more information).

Have a magical time, however you go about it

 

[sl_underwood]

I wondered about renting a wheelchair as well for her. Last year we used a stroller a few time. We borrowed one of the twin size jogging strollers for her last year but she was smaller then, recently she hit a growth spurt and is 4'8 dont think she would fit anymore. I dont know how she would feel about a wheelchair though since she hates anything that makes her look or feel different/sick. When she was on chemo she hated the masks and for months while her immune system was rebuilding itself she chose to stay at home rather than have people stare at her or ask her what was wrong with her. I will check the faq on it though. Thanks for the suggestion.

 

[angwill]

Hi, Good for you growing your new family with children who need parents who believe in them. I adopted my son who is now 12 but came to us when he was 4. He had a lot of the same issues as your new boy but oh goodness he has come a really, really long way and is one of the sweetest and kindest children I know which also unfortunatly makes him an easy target for bullies. Anyway, we had a lot of sensory issues with him when he was younger. What might help your new child are earplugs maybe a stroller and some thin cheesecloth or thin blanket to throw over part of the opening to use as a safe place for him when he needs to get away from all the stimulation. I don't know how long he will want to sit in it but him just understanding it's there can help. If he has sensory issues and likes a closed in feeling maybe a weighted pillow to put on his lap. Also squishy toys that won't bust open if chewed on will keep his hands from touching everything around him. I am sure you will get lots of advice from someone who knows him too. If you want to PM me we could talk further since you are where we were once with our son.

Take care

 

[sl_underwood]

Its nice to hear from someone who has adopted older children. Our daughters were 6 and 9 when finally adopted but we had them for 2 years before their adoptions were final. Our little guy is the youngest we have ever had and the only with attachment issues. Any suggestions on how to help with those? He is very sweet and loving but he throws tantrums without warning, bites, and recently decided he wasnt going to use the bathroom anymore. Our dd (the one with aa) would probably be diagnosed with adhd if she was in school but because of the aa and some dev delay we homeschool her. Our oldest has some anxiety issues and pretty much lives by a schedule. As long as she knows the plans from day to day she is ok but she will meltdown if you throw a surprise party or anything like that. So all of our kids have some special needs but my older two are fairly easy to manage, granted I have had several years to get the hang of it and only a few months with the little guy. I am hoping that if we wait till closer to the end of the year we will be more in tune with him and his needs. I think it takes a while to recognize triggers and such so hopefully once we can figure out all the triggers to his behavior it will be more easily managed. Thanks so much to everyone who has offered advice!

 

[Schmeck]

August and September are very hot - that can make even small issues very difficult to deal with. I'd go in early December!

 

[SueM in MN]

I wondered about renting a wheelchair as well for her. Last year we used a stroller a few time. We borrowed one of the twin size jogging strollers for her last year but she was smaller then, recently she hit a growth spurt and is 4'8 dont think she would fit anymore. I dont know how she would feel about a wheelchair though since she hates anything that makes her look or feel different/sick. When she was on chemo she hated the masks and for months while her immune system was rebuilding itself she chose to stay at home rather than have people stare at her or ask her what was wrong with her. I will check the faq on it though. Thanks for the suggestion.

Rather than rent a wheelchair, I'd suggest you look at renting a special needs stroller. There are some places in the disABILITIES FAQs thread that rent those and also that might rent pediatric wheelchairs.

The regular wheelchairs for rent in the parks are adult size and are kind of large/wide for a child under 5 feet tall. The parks do have a few smaller size wheelchairs, but they are few and far between. You would be more likely to get a comfortable wheelchair by renting a pediatric one or a special needs stroller.

A child or very small person in an adult wheelchair will often find that the armrests are up at mid chest to shoulder height, the seat is too deep, and the seat is too wide for their size. A deep seat means that the person can either sit back in the seat to get back support, but then have the edge of the seat come below the knees or sit forward in the wheelchair so that the bend of the knees is at the correct place on the seat, but then be too far forward to have any back support. The wheelchair seats are a sling style, like director's chairs. If the seat is too wide, the child or small person is not as stable in the seat.
Anyway, I've seen lots of kids in adult wheelchairs at WDW and most of them don't look like the seat is very comfortable for them.

 

[OneLittleSpark]

If your eldest thrives in routine, she might benefit from a schedule written before you leave. Try to involve all three of them, see what they want to do and make sure you plan in plenty of breaks. I don’t know, I may be teaching my grandmother to suck eggs, but I thought I’d suggest it, just in case.

I can understand your younger daughter not wanting to seem disabled, but a lot of people use chairs when they go to Disney that don’t in the “real world”. Also, she’s very unlikely to know anyone besides you at Disney, and really, what does it matter what random strangers think? I understand she may not see it that way, and I do know how hard it can be at that age (it wasn’t all that long ago that I was there myself), but it might be a tact that works. Sue’s idea of a stroller / wheelchair might have the added advantage of being less conspicuous, too.