Summer away from home

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Ok- this is going to be a long post but I'll try to stop short of a novel

My daughter (Sam, age 13, ASD/AS) has been invited to spend the summer with her Aunt traveling around the U.S. This is big, and we are both excited about it and have concerns.

Bit of history- Aunt C. lives in Australia and has visited Sam a couple of times- the last was 2 yrs ago. She is her paternal aunt. Sam doesn't see or talk to her father much- I had to restrict communication for many years due to safety issues. I've never had a problem with his side of the family but due to geographic distances she hasn't seen any of them except Aunt C. since she was a toddler. Some have communicated with her via email through the years, but since Sam doesn't communicate much it has been limited. The safety issues with Sam's father aren't so much a concern anymore, though I haven't given in to his requests for an extended visit because he is incapable of parenting appropriately. So basically Sam doesn't really know Aunt C. very well, nor any of the people she'll be visiting. Aunt C. has never had children, and treats Sam like the intelligent young person she is. They got along well when they last visited, and Sam didn't have a problem with Aunt C.'s boyfriend (long-term relationship) who will be traveling with them.

The Plan- They'll be traveling through California, Nevada, New Mexico, Louisiana, and Florida for sure visiting relatives and probably other places that Aunt C. wants to visit. One aunt works at Disneyland and has been wanting to take Sam so they'll probably do that too. There is also a family reunion to go to. Aunt C. plans to pick Sam up in May or early June and return her in August or September. The final plans aren't firmed up yet.

Sam does want to go, and I think it is a wonderful opportunity for her. She'll get to have experiences that I can't afford to give her. This will also allow her some independence and hopefully build her confidence in herself.

Concerns- Sam's already a bit perturbed at me because in my email to Aunt C. I mentioned that Sam has a few special needs that we'll need to discuss. Sam equates "special" with "ret*d" (no offense meant to anyone!) so I explained that "special needs" has many meanings. If she were diabetic, I'd have used the same term to mean talking to Aunt C. about checking blood sugars. In her case, I meant that we'd discuss Sam's need for "alone time" and how to handle meltdowns. Sam tells me to be careful when talking to Aunt C. that I don't make her sound "crazy". Okie dokie- I have to figure out the best way to explain Sam's needs so that those needs get met and so Sam doesn't feel like she's a crazy person. This is already making ME a crazy person, lol

Needs- Alone time is super important for Sam to de-stress. When traveling she usually goes into the bathroom for an hour or two and walks around, rocks, jumps around, bounces off the walls (literally) and makes her noises. At her grandpa's house she'll have her own room so can go there.

Meltdowns- She rarely has a meltdown. It happens when she has gone more than a few days without Alone time or is over-stimulated by either unpleasant or super fun days. When she does, she cries, slams doors, yells, and has a horrible attitude. Since I've explained to her the reasons this happens, she is better able to control herself when in this state. Usually just a reminder of why she feels the way and extra alone time does the trick.

Faces- Sam has a hard time remembering faces and placing names with people. I thought I'd make her a picture book with the relatives faces and names to help her. We'll look at Aunt C.'s picture a lot since she'll need to be able to recognize her Aunt quickly should she be separated from them at a store or something.

Sam's concerns- I asked her what her concerns are, and the only one she mentioned right away was boredom. I assured her she could take her Nintendo, MP3 player, and drawing materials with her and that I was sure Aunt C. would buy her more drawing materials if she needed them. I also assured her that if she decided she wanted to come home she could. I said I'd encourage her to stay with Aunt C. but wouldn't force her. Sam has flown alone before so if she needs to come home then Aunt C. can put her on a plane from wherever they are. I let Sam know that she doesn't have to think of everything right now- we'll have lots of conversations before she goes.

I'm open to any ideas/suggestions on how to help make this trip go well for her. I know she is capable and that Aunt C. can be trusted to care for her properly. On the other hand, I want to scoop her up (hard now that she's taller than me, lol) and never let go!

I realize that your daughter is uncomfortable being talked about, but the Aunt HAS to be told about the AS and what the established protocols are with your daughter, or your daughter may get pushed into situations she can't handle with no one allowing her to go through her self-calming steps. I agree, this conversation is like telling an adult about diabetes or any other special needs: essential information for making sure everyone stays healthy. If the aunt isn't told, she may easily trigger a meltdown and be left wondering what the heck happened. A little information, and that is averted. My son doesn't like the telling any better than your daughter does, but I've told him that adults around him want and need to know, and he's heard from them some examples of why, and he knows that I'll give all the positive spins about the great things he can do in the talk, too.

The aunt needs to understand that your daughter may not be able to go from busy day to busy day, and she may need help pacing her sensory exposure in a place like Disneyland. Your daughter is probably old enough and self aware enough to be able to tell the aunt when things are too busy, and that responsibility can probably be left to her: assume that all plans are a go, but when the child says, "I need a quiet day," PLEASE don't push her out of it. Your daughter will be eager to please and may easily be talked out of these things, but the aunt should be asked not to try.

Does that make any sense? Help at all?

The picture book is an excellant idea. Anything visual so she will be able to recognize the people around her. I know this is far fetched and I don't know how comfortable you are with this but a cell phone with a camera would be good. Get one that has a call and texting plan even a prepay. That would give her the independance to call you whenever she wants. My AS son loves having a phone because he has his independance and I am alot lessed worried. Plus she would have that camera to use. My son has an excellant prepay plan I put 30 dollars a month on it and it lasts him all month for unlimited texting and .99 a day only when he calls anyone.

Something I didn't really talk about in my post before, but I'm thinking is probably an important part of your conversation with your daughter: work on her self-advocacy skills with the aunt. Make sure your daughter will be comfortable telling your aunt what she needs. Try to have your daughter practice having uncomfortable conversations with the aunt, so she can build confidence that the aunt won't be judging and rejecting her. That one thing your daughter said, about worrying the aunt will think she is weird, is the clue in here. Your daughter needs to understand that she won't be able to act for 3 months straight, and so needs to have some trust in the aunt.

Also see if you can set up some sort of guaranteed wireless connection for the majority of the trip. If your daughter is like my son, part of getting ready to visit a new place is checking it out on-line. That little bit of pre-knowledge helps my son a lot, and he looks for it every time we travel.