Archive for November, 2012

Freedom!

The rest of our California trip:

After 2 days at Disneyland we took a break from the park to do a couple of other LA area things. Sunday morning we drove up to Pomona College to visit an old friend and see my Dad’s skyspace on campus in the courtyard by the geology building. I had visited the site back in 2007 when it was still under construction but had never made it back to see the completed piece. I was glad we went. It’s a real stunner. Any James Turrell fans out there should put this on their ‘must see’ list for sure.

 

 

Unfortunately Lu was pretty freaked out on the drive there and as we drove around campus to park. To be honest, she tends to get really anxious and freaked out whenever we drive around in a city with big buildings. Parking garages in particular seem to set her off. She isn’t able to explain why this is to us yet, but my best guess is that the main multi-story building with parking garage she has ever been in is Phoenix Children’s Hospital with the Flagstaff Medical Center a close second, both of which have been the sites of numerous appointments, tests, procedures and surgeries. She reacted to the beautiful buildings at Pomona in much the same way.

 

However once we managed to coax her out of the car and she realized that we weren’t going anywhere scary, something beautiful and amazing happened. In the middle of campus there is a long, lovely green, surrounded by tress and buildings with no cars in sight. Because Lu’s instinct is to bolt whenever there is open space in front of her, for her own safety she has never been allowed to walk through a door to the open outside without holding onto someone’s hand and more recently also holding onto Dahanna’s leash.

It is my acute and ever-present terror of her coming into contact with a moving vehicle that is the cause of this. This is not an unfounded fear. We had too many early close calls to ever risk being negligent about this. But at the same time, it is heartbreakingly sad.

 

 

 

Sometimes she seems like a colt stuck in a stable who desperately wants to just get out there and run. I sometimes wonder if she would do so much jumping and pattern walking if she were just able to get out there and run.

 

 

 

 

It is my hope that as she gets older, with the help of Dahanna, she could learn to do track and field, or maybe even long distance running, if there is a way to keep her safe while she is doing it.

 

 

 

 

 

Because there on the Pomona green, we let her go and she got a taste. Freedom. Her happiness was palpable. She loves to run.

 

 

 

 

 

I don’t mean to say that she has never run before, she gets to run at recess and during PE and at the completely fenced in park where we go to play in Flagstaff. And we try to give her lots of physical activity with both the big trampoline in the back yard and the two small ones we keep in the house. She goes for pony rides and outings. It’s not like she never gets to do anything or go anywhere, it’s just that someone is always holding on to her or is right there within arms reach to slow her down if she gets going too fast.

 

 

After a good old run at Pomona, we left to meet some of Stew’s friends at the beach. We went to Huntington Beach which the GPS said was only 15 minutes away from our hotel. Somehow it took us over an hour to get there with Lu getting nervous as the drive went on. But when we finally got there, another revelation! It was a dog beach so we decided to let both Lu and Dahanna have a break from their leashes. This was a very difficult thing for me. Back when Lu was first being diagnosed I had this recurring nightmare where I was at a beach, knee high in the water, holding Myffy in one arm and holding Lu’s hand with my other hand. Suddenly, out of no where, a huge wave hit us and we were all knocked back into the swirling water. I managed to stand and pull Myffy up above the water but I had lost hold of Lu. My instinct was to dive back in to search for her but I was afraid of drowning Myffy in order to try to save Lu. I would wake up thrashing in bed in a sweat as if swishing my arms through the water searching for her.
I told Madison about all of this before we got to the beach. I told her that I would need to stay with Myffy and I was trusting her to always have Lu. She and Lu worked it out that as long as Lu ran along the beach Madison would run along side her, in between Lu and the waves. Lu could go into the water if she wanted but had to hold on to Madison’s hand. It worked out well. Lu ran to her heart’s content, she and Madison both got wet, and Myffy and I played on the beach while Stew had a chance to visit with old friends and do some wading out into the water with Lu as well.
I think as much as taking the kids to Disneyland was a triumph for the family, taking Lu to the beach was overcoming an enormous fear for me. And I realized that sometimes my fears for her safety may be stopping her from experiencing life. We’re not about to remove all of the safeguards we’ve set up for her, but at the same time, with the right people who I know I can trust, I think that it is time for me to start letting go just a little in order for her to discover more of the wonder and joy that life has to offer. Wind in her hair. Sea spray on her face. Pink-cheeked exhaustion. Freedom. Happiness.

WE DID IT!!! Our Autism/EE Disneyland Adventure!

Well we did it. We took our kids to Disneyland! A year ago I didn’t think a trip like this was possible. Back in January I even wrote this post called Disneyland and the Dog about how we couldn’t imagine being able to take our kids to Disneyland before learning about Arizona Goldens’ Autism Service Dog program. And now, less than a full year later we have accomplished an enormous family goal! We have gone on our first completely non-medical family vacation in 5 years and did the fun kind of things that other families do with their kids.

There were a few hiccups and tough times along the way, the drive was long and mornings and evenings so off schedule caused a fair bit of anxiety for the kids, but the actual time spent in the Disneyland park itself was so much better than I could have hoped for.

We decided not to buy multi-day passes ahead of time because I am so used to the things that we expect the kids to like the most turning out to be too difficult or traumatic. I could just see us getting there and the crowds and noise and motion being too much for the kids to handle for more than just an hour or two. I fully expected to only stay 2 or 3 hours on the first day. But thank goodness we planned ahead and brought Lu’s tube feeding equipment and food with us in back packs into the park. We stayed for more than 7 hours and walked more than 5 miles inside of the park for 2 days in a row (thanks fitbit step tracker)!
I need to give some credit where credit is due here and a ton of credit goes to the lovely Madison, Tallulah’s one-on-one school aide and one of her home ABA interventionists; as well as credit to the also lovely Dahanna who was a total star! The way we worked things was that Madison mostly was in charge of Tallulah and Dahanna, walking with them both, giving Dahanna commands, holding Lu’s hand in one hand and Dahanna’s leash in the other, keeping the two leashes from getting entangled and the rest. I was in charge of Myffy and had a back pack with just the feeding pump, bags, tubes, adapters and syringes in it which is not very heavy in case I needed to run after Myffy or jump in to help Madison with Lu. And Stew was in charge of everything heavy and everything else; the stroller, the cold bag with Lu’s food in it, and another back pack with all of the other stuff we might possibly worst-case-senerio need.
Dahanna did a great job of navigating the crowds, waiting in lines, keeping our group together like a sheep herding dog and riding all of the rides with Lu but one (that one was the Dumbo ride which I was afraid to put her on because I had this momentary vision of her hopping out of the Dumbo when it goes up and down in that shakey way, it was the first ride we tried and it took me awhile to realize that she can handle pretty much anything we can). The people around us marveled at her calm demeanor and professional air as she hopped in and out of all the crazy shaped ride cars and never even batted an eye when the Pirates of the Caribbean ship plunged down into darkness and water sloshed in, getting her pretty well soaked by Lu’s feet.
One thing that I was really impressed with on this trip that I never even noticed as a kid was how alert and awesome the Disneyland Staff are. Maybe this was accentuated by having the service dog which is a very visible sign of a kid with a disability, and maybe it was having the guest assistance pass which put us into the disabled lines, but even when we were just walking around and trying to get food I felt like the staff were constantly watching, ready to help and totally on the look out for kids in distress.
When we went to eat the chefs came out to talk to us about the kids’ food restrictions, and even though Lu never actually ate anything by mouth the whole time we were in the park, I so appreciated their willingness to make up special food that my kids could safely eat. We got gluten free rolls, BBQ meats that were not dredged in flour and had a special sauce, pancakes and burritos that were gluten and diary free. It was great. Myffy ate a ton of everything and hopefully next time we go Lu will be interested in eating as well. Normally Lu does not like doing her tube feeding anywhere but in her own bed at night, on her beanbag or on the sofa during the day, and she will let us coax her into feeding at the dining room table with us as we eat dinner for 15-20 minutes usually before asking to  move to the sofa. So even though we brought her feeding stuff with us, I was pretty sure she would want to go back to the hotel. But she didn’t. She let us hook her up right out there in public at the tables of the Disneyland restaurants. And she hardly even seemed to notice.
On the first day there it wasn’t until half way through lunch that I realized that I’d completely forgotten to bring Lu’s ipad which is usually the only way we can get her to sit with us through a meal. I felt a moment of panic but then looked around and realized that everything around us was better than a life-sized ipad. All day long Lu’s face had the most amazing glow of happiness. And once she got used to the routine of waiting in line and then going on rides, she eventually didn’t even seem to mind the wait too much. Especially once she got tired and wanted to sit in the stroller while waiting.

We rented the stroller with Myffy in mind because her legs are so short and she is a pretty slow walker, but she would not go in it even for a moment. She wanted Mommy up and no one but Mommy. So I carried her. All the time. For over 7 hours and over 5 miles a day, two days in a row. And boy was I feeling it by the end of the second day. I was so glad I could look forward to that chiropractor appointment I’d made for a couple of days after we got back. I made a mental note to schedule a massage as well. But aching backs aside, it was an awesome trip and we never even came close to my worst fear of losing a child at Disneyland.

 

 

 

It was a couple of long hard days, and Myffy didn’t quite make it without a little nap in line for It’s a Small World (which I think we rode 7 times during the two days), but all in all I’d call our Disneyland Adventure an unqualified success!