Thursday, May 28, 2009
Heading to New York [recap]
Getting to New York...

Never, never, ever do I want to make that trip again. Not because of the delay in taking off, not because I was traveling with a small companion, not because I opted to carry my heavy ass bag on rather than pay the fees you have to pay now to have it stowed under the plane, not because two people can barely fit in an airplane loo...
None of those reasons.
In fact, the trip itself, delays and loos aside, wasn't that bad.
Taking your almost-seven-year-old daughter to spend four days in a foreign state with someone you don't particularly trust and who will be about six to seven hours distance from you is just about the worse feeling in the world. My baby. And not just that she is the youngest, but also that she is so different from other kids, from other people and he doesn't take that seriously.
In preparation for this trip and on account of how Trin is different than other kids, she and I made two lists. The first was a list that she dictated to me of things that she'd like to have available to eat. Now Trin is a very picky eater. And if you don't give her something that she will eat, she will just go without. Until she is sick. The thought of her not eating makes me sick. So the two of us sat down one day in the kitchen and I emailed her dad the list of foods she wanted him to have available to her.
The following is an edited email we sent him... [edited so you don't get bored and leave. We don't want that :)]
I am discussing packing with Triniti this morning and we wanted to make sure and send you a list of foods she will eat, she is VERY picky and if you don't have something she wants to eat, she will just not eat until she gets sick. So not only do you want to make sure she has food available to her that she likes, but you also need to make sure and ask her several times a day if she wants something to eat. If you don't ask, she won't remember to eat and she will get sick.

Make sure you have a LOT of apple juice and chocolate soy milk. Occasionally she likes a glass of regular milk but she should have at least one glass of the chocolate soy a day. The omega3 in it keeps her balanced out. She will also need to take her vitamins twice a day, the omega3 in those also keeps her balanced. Without the omega3 and enough sleep, she turns into a totally different person, one I'm hoping you won't see while she's visiting you.

Trin LOVES bagels and cream cheese and we have been giving MAD PROPS to New York for having THE BEST BAGELS IN THE WORLD so you can totally use that to your advantage.

Apple Juice (1-2 gallons, 100% juice)
Chocolate Soy Milk (one-two 1/2 gallons)
Shredded Cheddar Cheese
Chicken Nuggets
Tater Tots
Bagels and cream cheese
grilled cheese (wheat bread)
Lay plain potato chips
honey comb cereal
spaghetti (she likes it with a little butter and melted shredded cheese on it)
seedless grapes (either green or purple)

She likes tortillas with melted cheese, I will try and remember to bring tortillas since they are probably easier to find here than there :) You can always try other foods with her but if she doesn't like something, PLEASE make sure she eats enough. Also when she goes to bed at night, she drinks a whole glass of juice or soy milk and if she hasn't eaten for a few hours, she will want something to eat.
If she asks for food, try and give it to her because she only asks for food when she is REALLY hungry.

Simple enough right?
I decided that since we'd covered that, I would also send him an email that outlined Asperger's and how it relates to Trin....

I know you and I have talked about this some but I wanted to cover a few things before she gets there.
The most noticeable thing about AS is that the children who have it are socially awkward. They don't understand socially accepted behavior and they often come across as being rude or weird because of it.

Triniti is a VERY good mimic and because of that a some people who don't spend a lot of time with her don't even notice. She knows how to blend in. She also asks a LOT of questions when she doesn't understand something, try and explain your answers to her in a neutral way so she can figure out how she feels about it on her own because she will adopt your thoughts as her own if you don't.
She may ask totally random things... like the other day she asked me what "in-law" meant. Before I could answer her, I asked her where she had heard it and in what context to make sure I was answering what she really wanted to know (she heard it in school from another kid who said her "dad's mother-in-law" or something like that). And I always ask her if she understands because sometimes she doesn't and she won't ask for further explanation.

Triniti's whole life just moves a little slower.
You have to slow down and take your time with her. This was a HUGE adjustment for me and for us as a family.
And also, try and make sure you give her notice before you are going to do anything. Say you are going to take her to get the world's best bagels the next day, make sure you tell her that night, Triniti, tomorrow we are going to [wherever] and we're going to meet up with [whomever] and get the worlds best bagels. Then make sure and ask her if she has ANY questions about that. Because she will probably have a LOT. She likes to understand everything about it, which helps her prepare. Not being prepared will give her a panic attack and you do not want to be in public with her while she has one and more importantly, you just don't want her to have one. It's very unpleasant for her. If she starts to freak out and say her stomach hurts, I usually ask her if I can hold her and I try and hug her firmly and ask her to take deep breaths with me. Some deep breathing usually helps, as does the firm hug. Kids with AS like to be held very close, it helps calm them.
And ask her often how she is. She will tell you she's good or fine if she is. I probably ask her how she about twenty times a day and sometimes on that 19th time, she will not be ok. Make sure you talk to her if she isn't.
If you know what you are going to be doing on all the days she is there, having a schedule you can give her will be SO HELPFUL. We keep a calendar here and she checks it daily to see what we are doing, even if it's nothing.
If you have plans and you put them on a schedule she can carry with her, it will help her a lot.

I know you may think I am being way overly cautious and I hope I am and that she has so much fun with ya'll that nothing happens, but you need to know about all of this and please talk to your parents and the boys about it too.

Oh and teasing, try to avoid any joking around, being sarcastic or teasing because she doesn't understand it and she will think you are being serious and she will get her feelings hurt or believe you. Like, if you tell her you saw godzilla on the way home, jokingly - she will believe you and tell everyone that you saw godzilla. About ten percent of the time she will look at you and say, "you're joking" and you need to admit it when she does because otherwise she will think she can't tell the difference.
If she is in a really good mood, she will joke on you. And she will laughingly tell you, "I'm just jokin/kiddin!"

PLEASE ask me any questions or call me at any time if you see any behavior that you think is a little off. I will be completely available to you and her through out this visit. And please don't think I am trying to tell you how to parent, I promise I am not questioning your fathering ability at all, it's just that Trin is different from any kid you've ever met before. She isn't in therapy right now because she is doing so well at home and we try and do our therapies here now but any big set back will send her back into it.

Here is a basic list of things about AS:
Find physical contact and intimate touching uncomfortable (always ask her if you can hug her)
Find social situations difficult in meeting new people (always prepare her)
Like to spend a lot of time alone (Make sure you give her some time every day where she can just play alone)
Find it difficult to understand other peoples emotions and feelings (Don't get mad at her if she comes across as rude or disrespectful because she isn't trying to)
Misunderstand speech and think that its criticism and become very defensive. (No teasing)
Find it hard to make decisions and always leave up to somebody else
Can't explain their feelings
Find it difficult to understand peoples facial expressions
Use big words but do not know what they mean (She asks me all the time what words mean and I think when she uses them, she uses them correctly)
Like routine and don't like changes
Can become very angry and aggressive when anxious
Find it hard to build a relationship (You'll find she comes across as removed from situations, it's just how she is)
Have extra sensory sensitivity (She doesn't like loud noises and some not loud but different sounding noises will also bother her. She HATES yelling)
May sound very rude or hurtful in things they say (Because she doesn't understand inflection and is most likely repeating something she's heard somewhere else)
Their voice does not change tone when describing things
Have special interests (She likes playing online and alone, she'll have toys with her when she gets there too)
Before we get there next week, try and do a little online reading and familiarize yourself with Asperger's.
And please let me know if you have any questions.

I called him that night to make sure he'd received all of the emails and he said he had and more or less said he didn't agree with it. And that he didn't "allow those foods" in his house. I told him that wasn't something I was willing to compromise on, he said he'd "humor" me. Which wasn't exactly what I wanted to hear right before I jumped on a plane with my kid to go and see him and leave my daughter in his care.
During the week leading up to this trip, Trin started freaking out about it. She said she didn't want to go, she was scared, she didn't want to be away from me. I asked her father to call her nightly to talk to her and help ease her fears.
He called twice.
I was becoming more and more discouraged about taking her and really wishing I could back out of the trip but at the same time trying to remain optimistic.
Any optimism I had quickly disappeared when he texted me right before I had to turn my phone off as our flight was about to take off from Atlanta to Buffalo.

Hey forgot to ask when I talked to you earlier but you don't mind paying for half of the gas/tolls/food do you? It would be $60.

I wanted to get off the plane and go home when I read that.
Instead I turned my phone off and clung to the little shred of hope I had that this all wasn't going to blow up in my face.
When we landed, he had sent several more texts asking where we were (as if I could answer him with my phone off while we are flying!?) and what gate we were landing at (he had all of the reservation info emailed to him). I ignored all of the texts and focused on Trin who had cried almost the entire flight because she was so scared. I was having a hard time trying to calm her down since I was also terrified.

Thank goodness Lola was there.
I don't think I would have made it if she hadn't swooped in and taken control of the situation. My brain wasn't doing a very good job of making things run smoothly. In fact, it was looking for an escape route.
Fifteen minutes later, after I declined to give him any money, he was walking away with my daughter and as soon as she couldn't see me, I lost it.
It was just about the worst I've ever felt as a mother.

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so eloquently put by katehopeeden at 9:46 AM
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