Our last family vacation happened over two years ago. The extent of the work required to pull off that trip successfully left me feeling far more strained and stressed than if we’d stayed at home. Frankly I can’t recall a time when I was so pleased to return home. For Hannah though, we had still been able to deliver a quality experience.

Several things have changed since that trip. Tony is now way too big to fit in a regular stroller. Special needs strollers for an individual of his size are quite expensive- far too much so to justify the cost for something that we wouldn’t really use for any other occasion given how mobile our little man is. We had to pull back on most of our crowd work this past year because of Emily’s foot surgery and recovery period. Every time we’d start back up again after she got back, another major aversive event like a therapist leaving would occur. Given Tony’s size, working safely through his fear of crowds requires him to be in a calmer place emotionally where everything else is concerned.

My idea for doing staycations to practice his hotel skills was a good one I think, but untested. We felt we were unable to even attempt it because his middle of the night waking since starting the Guanfacine can come as early as 11pm, and usually brings with it intense hyperactivity and vocalizations. On our November 2017 trip into Disneyland, the couple below us called security on us just for him being up and running back and forth across the floor several times around 3:30am. No vocalizations, maybe as much as a single jump. Nothing like the middle of the night bursts of energy and noise we are currently seeing. Those, I think, cross the line of what we could reasonably expect others to be patient with even if we were removing him as quickly as possible to our home. We really need his sleep to be more stabilized during the main hours of the night before we will feel comfortable trying that type of work.

So, the above factors make most vacation locations out of reach for a combined family vacation at this time. If you don’t think Hannah needs a regular vacation at this point, then you are either new to this blog (in which case, welcome!) or you may not have had the time to read every single post. This past fall, Andy and I began discussing what we could do to get her some sort of trip away. When asked where she wanted to go, our girl was adamant. Disneyland. Neither of us thought it would be a good idea to try this with Tony at this time. The crowds at Disneyland overall continue to rise, and given their ongoing effort to manipulate pricing tiers to regulate park attendance throughout the year, I honestly am not sure we will ever see a time again where we can be assured that park census would be low enough that Tony will feel comfortable walking through that park on his own two legs.

After a fair bit of discussion, we decided I would be the one to go with Hannah. I have never been away from Tony more than several hours, and usually he struggles emotionally and initiates more attempts at self-harming on those occasions where I have been gone the longest. As you may recall, on the first overnight trip away from home Andy and Hannah took, our little man stopped eating, stopped communicating, and increased his attempts at self-harming.

We have done a lot of work with him since that trip, but we knew more would be required to pull off an even longer trip where I would be gone. Andy requested off a week of vacation from his job so that he could stay home with Tony. We put together Pictello stories to explain to him what would be happening, and how long we would be gone. I created the story about our trip, and was very specific about when we’d be leaving, how long we’d be gone, why Tony was staying home with Papa, who would still be coming in to work with him during those times, etc. We made sure to frame the reasons for Tony staying in the light of helping him to keep his routine and avoid things he finds scary, unpleasant, and overwhelming to deal with. This story was read to him once or twice a day for the first month. Honestly, he was pretty unhappy the first time we read the page about Hannah and I being gone for three nights. Emily created the story about what Tony would do while he was waiting for us to return.

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We practiced Skyping, and tried to arrange a few times where I was away from home for several hours in the month leading up to the trip to help Tony get more used to me being gone. All of this was a bit complicated by our son’s illness in January, and I honestly wasn’t sure how our little man would react to all of this once we were gone. I told his therapy team to expect that we could see a significant spike in self-harming. Emily agreed to place some of her make up hours from Tony’s illness on the days of our trip so that our little man would have extra support if needed, and we discussed a public therapy schedule that would only include locations that were highly preferred.

The morning Hannah and I left, Emily and I took Tony for a quick public therapy outing. We reminded him we’d be Skyping twice a day. Hannah promised him that we would return. Then, she and I loaded up into my car and started the drive to California.

I have Hannah’s permission to talk about our trip, and where we went. I think the pictures do a lot of talking for me- from my perspective this was a trip about focusing on her, not creating content- but I will still add a few more details. This has been a year of much healing in our family, and for both of us, this trip was an extra bit of needed balm to our spirits. I let her give the deciding votes on where we would eat. She got to pick most of the rides. For me, there was a lot of joy in being able to give her so much of my time.

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For me personally, it has been years since I could walk through anywhere for this amount of time in such a carefree manner. I had nearly forgotten what it felt like to relax without the constant awareness needed to protect a kiddo with heavily impaired risk assessment. I texted Andy frequent pictures and updates of what we were doing. He likewise texted me some pictures of his time with Tony.

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Part of why I was able to enjoy everything so much was that with every Skype back home, Andy assured me our little man was remaining calm. Honestly, our success in preparing him for this trip as measured in Tony’s behavioral reactions exceeded my hopes and expectations. We have learned a lot through this about what Tony understands and how much transitional preparation he needs to calmly weather events he finds aversive (about a month). I can proudly say I was dead wrong in warning his therapists that most likely they would see an increase in self-harming. Instead, they saw none! Woo-hoo!!!

Honestly, the best moment in all of this, for me, was hearing Hannah say how much fun it was to be with me. She and I both loved our trip, though she mentioned that the Kingdom of the Mouse is starting to seem like a bit of “a money-grab,” as she puts it. She says maybe next time, she’ll want to try Six Flags. I texted home pictures of packing up, and had Hannah text a picture of me driving on the roadway headed towards home to show Tony. We walked in just before Amara arrived to start occupational therapy to a scrubbed down kitchen and a vase of roses.

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Andy, thank you.

Emily, thank you.

Hannah, thank you. You are a lot of fun to be with too, my sweet daughter <3

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