Archive for the ‘Autism’ Category

Our Kids Have Caught the Travel Bug

TravelOur kids are becoming seasoned traveling pros! In the Spring we took them to the UK to visit the Anderson Clan and see a few sights.

 

 

 

 

 

Andersons 2We took them all the way from the Scottish Highlands to West Yorkshire, down to London before we left.

 

 

 

 

PlayThey had a great time visiting family, making new friends and seeing some of their Grandfather’s artworks.

 

 

 

Tallulah and BabyAnd Carebear finally got her own Pet Passport which should make international travel with a service dog much much easier from now on.

 

 

 

 

 

Boyracer PopfestThis summer the kids went with us to San Francisco so we could play in the San Francisco Popfest. This was a great trip as well. They both look forward to plane rides knowing that the planes take us to fun places with hotel rooms.

 

 

 

 

Lu on Shoulders

Stew had two new Boyracer Singles ready to take to Popfest and as usual for festivals he played in 4 different bands; Boyracer, Hard Left, The How, and Lunchbox. Luckily one of them was a day show so the kids got to see him doing his Keith Moon thing on the drums for The How.

 

 

 

SleepingThe kids had a great time, but rocked out so hard that they fell asleep before the show was over.

 

 

 

 

Since getting back home for the summer the kids keep asking every week or so to go on the airplane up in the air and go to a hotel room. They have caught the travel bug!

 

boxsetWe have sold out of the fantastic Box of Tricks 5/7″ box set, but individual copies of the records are still available as well as the 2 new Boyracer singles. Get the new releases here.

Our Trip to France Part 3! Finally!

We finally made it to France after all of the planning and preparation and changes in plan. The whole point of the trip (besides finally getting back to France after many years) was to get together with Stew’s whole family in one place at one time. This was Stew, his parents, both of his sisters, one of their husbands, and all eight Anderson cousins, including our kids, plus me and Karalyn as well. So we jointly rented an old converted farm house in the tiny Brittany town of Plougasnou. It was supposed to be about 5 and a half hours drive from Paris, but with stops for the kids and Carebear it took us closer to 7 hours. I was glad that we decided to take a room at the airport the day we got in so we had a chance to recover from the 18+ hours of airport and air travel before hopping in the car for another full day.

I was also glad that we ended up with a much larger mini van than I thought I was reserving. It was more of a van than a mini van and easily had seating for 9 people. This meant that some of Stew’s family could pile in with us when we went on day trips and there was still plenty of room for car seats and Carebear. Both kids totally loved driving around the lush French countryside. There were farms with animals everywhere. And we had no real set schedule on a daily basis.

I was really worried about the lack of school and therapy schedule because often long holiday weekends are the hardest time for the kids at home. They expect to get up and get ready and go to school or therapy and get upset when things don’t happen the way they are supposed to, but in France that expectation was totally absent. Neither one seemed to miss the regular schedule at all. It took nearly the entire trip to get the kids onto the local time in terms of going to sleep and getting up in the morning. But I found a strange peace and satisfaction in our nocturnal time together when everyone else had gone to sleep. Though sometimes Karalyn traded off with me on staying up with Myffy. Myffy was always the last kid standing. And removed from our normal crazy work/school/therapy/swim lessons/gymnastics/etc. schedules, I even found time to read a whole printed book and half of another, just for pleasure, something I have not done in a very long time. Usually anything I want to ‘read’ has to be on audible.com or it doesn’t get read.

The kids both did fantastic with their cousins, and aunties and uncle and grandparents. Lu even took to calling out ‘Granddad!’ to get David Anderson’s attention and then would giggle when he turned to her. It was pretty cute. Myffy missed a few outings with the Anderson clan because of her difficulty with the time change- often everyone else was up and away by the time I managed to get Myffy up and dressed, but there was still plenty of great family hangout time.

Oceanopolis in Brest was a big hit with the kids.

 

 

 

 

 

 

 

 

 

 

As was the back yard of the Gite with it’s farm animals, playground equipment and awesome hammock.

 

 

 

 

 

 

 

 

 

But most of all, the kids loved the ocean, so we went down to one of several lovely little beaches most days when the weather permitted.

 

 

 

 

It was a cold, often rain-spitting north Atlantic Ocean, but the kids wanted in no matter how pink all of our toes went. And we all fell in love with the rugged beauty of the place. All in all the trip was more than worth all of the difficulty and planning ahead of time. And now that we have done it once we are hoping to try to get in a bit more travel with the kids in the future.

 

 

Our Trip to France Part 2!

After publishing Our Trip To France part 1 I realized that I left out several steps of prep that we did with the kids. These steps were mainly the practice flights from Phoenix to Flagstaff to give the kids a test run before trying to plop them onto an international long-haul flight. We did Lu’s flight at the end of a week long session at SARRC, and Myffy’s flight the day after her endoscopy to check for EE in Feb.

 

 

 

Madison went with us for Lu’s flight and other than getting nervous going through the security line when we had to take Dahanna’s back pack and leashes off, as well as all of our shoes, Lu did really well.

 

 

 

 

 

When she got into the airplane she was really happy and kept saying, ‘Airplane go up in the air!’ As a pilot and the daughter of a pilot, I couldn’t help feeling a little bit proud of how much she seemed to love to fly. Even though it was only a 45 minute flight, I couldn’t help feeling encouraged and excited. For any other family considering taking their special needs kids on a long haul international flight, I would highly recommend doing a short practice flight first. It does add expense to the whole trip, but it really helped us to anticipate where problems were mostly likely to arise.

 

For Myffy’s practice flight I took her by myself and she had a much harder time with the lines and delays, so I wasn’t able to get any pictures. My hands were more than full. Still I think that it was really good that we went through it once first both so she could learn to anticipate what would happen next on the long flight, and so I could be prepared for her reaction. It was after this that I decided to buy the big box of individually wrapped ear plugs to pass out to other passengers.

 

 

I don’t want to give the impression that Myffy struggled throughout the entire travel time. There where whole hours of her walking along and sitting and playing and being perfectly sweet and totally awesome. It was also encouraging to think back to when Lu was Myffy’s age, how much trouble she had with fast, unexpected transitions and changes, and to see how far she has come. She just rolled with weird thing after weird thing on this trip and took so much in her stride. It helped us to remember that even in autism there are stages that kids go through and grow out of and that in another year or two international travel might very well be a breeze for Myffy too.

I sure hope so, because we have already begun to discuss plans for our next overseas visit with the Anderson Clan!  Stay tuned for part 3 of our trip to France when I finally talk about being in France!

6 Year Old Birthday Party!

Saturday was Tallulah’s best Birthday Party ever. For the first time we invited a lot of kids from school and out of the 20 invites we sent I think we had about 17 or 18 kids come. I kind of lost count with siblings and last minute rsvps. I actually had to run out and buy a few more things just before the party because I was afraid we would run out with so many more kids than we were planning on. For other Birthdays the most we have ever had is 4 or 5 other kids besides my own. And we have never had anyone drop their kids off with us before. That was a totally new experience. I was a little nervous because I didn’t know most of these kids or their parents, but Madison, Lu’s one-on-one school aide, told me that the kids who came were pretty much Lu’s little gang at school, with some brothers and sisters along.

 

It’s hard to express how happy it makes me to know that she has a little gang at school who looks out for her and wants to hold her hand on the way from homeroom to art or recess or whatever and who want to sit all around her at circle and movie time. I was really impressed with all of these kids. They were all so considerate and patient and totally awesome. They formed themselves into a line for the pony rides, they abided by the limits we set on how many kids could get on the trampoline and one would get off when another one wanted to get on. But mostly, they were just so nice to my kids. Several times during the party I kind of started to tear up.

Back when Lu was first diagnosed I remember talking to the psychologist who gave us the diagnosis about friendships and meaningful relationships and she told me that it is likely that those human interactions that mean so much to me could very well hold little to no meaning for her. That was one of the hardest ideas for me to grasp and I have always wanted to find ways to encourage friendships without going total psycho mom on someone else’s kid insisting that they be best friends with my daughter.

 

 

 

 

I try not to push this at all because I would hate for Lu to experience social rejection before getting a chance to experience real friendship. We all experience rejection at some point in our lives. I still remember early grade school snubs from when we moved several times within just a couple of years and I was the new kid over and over. My main difference was just that I came in during the middle of a school year when everyone else already had their friendships established and I didn’t know anyone.

 

 

 

 

 

For my kids the differences are greater, and the work of making friends, that much harder. It’s nice to know that there are special kids out there who will go the extra mile to be friends with awesome and quirky kids like mine. I also think that both Dahanna and the school aides helped a lot at the start of the year to get kids interested in interacting with Lu. They have also taught these kids a lot about autism as I learned from a conversation with one very earnest little 6 year old who wanted to know why Tallulah’s sister has autism too. But we are now at the end of the school year and it is great to see that there are kids who still genuinely want to be her friend.

 

At the end of the day when we were putting the kids to bed I asked Lu if she had a good Birthday and she gave me the thumbs up and whispered, ‘Good Birthday’ with a sleepy smile. I didn’t get a picture of that, but here is Myffy pegged out early in the hammock in the back yard. All in all, it was the best Birthday Party yet.

Our Trip to France: Traveling Overseas with Autism, EE and a Service Dog. Part 1.

Yes, we did it. We took the kids to France and made it back again. It wasn’t easy, but it was totally worth it. Worth all of preparation and planning. All of the worry and stress about what could possibly go wrong. The kids, and all of us, had such a great time. Tallulah’s face in this photo of her on the beach by the ocean says it all. She loves the ocean and she loves France. We all did. Heck I even started looking at real estate while I was there, imagining a world in which we could move to France, or have a second home there and spend two or three months of the year. Yes, it really was that great to be there.

However, if anyone else ever wants to follow in our footsteps and take their special needs kids and a service dog overseas, I do have a few tips to pass on. First, do all of the paperwork for the dogs travel papers several months ahead of time even if they tell you that you have to have them done 5 days before travel. You will have to do it again 5 days before travel, but at least you will find out if there are any unforeseen glitches. We had a very big unforeseen glitch. When we looked over the list of all of the requirements, we met them all, rabies, check, microchip, check, certification paperwork, check, etc.

The odd little issue that became a game changer for us was that because Dahanna was microchipped after her 2nd rabies vaccination, the USDA refused to certify the vaccination. As if it could have been some other dog who was vaccinated because she did not have a microchip at that time. We didn’t find this out until we went in for the 5 days before travel paperwork. In a panic I told the vet to just vaccinate her again, thinking that would make everything ok, but after they gave her the shot I found out that now she was not allowed to travel for 21 days. WHAT!?!?! I did a lot of crying and shouting over the phone, trying to explain that we’d been planning this for months and no one ever warned us that this was even a vague possibility, but it was a done deal. There was no way we could take her.

Brian from Arizona Goldens came up with our solution which was to take Carebear with us instead. We had a few days to work on getting the kids used to this idea, and in the meantime we sent in all of the paperwork for her. Luckily her shots and microchip had been done in the right order. I did get an incredulous comment from the USDA agent, “What do you mean, you have a spare service dog?” Yes, we are one of the few families in the country to have not one, but two service dogs. Because Lu’s needs are greatest we decided to spend the last few days before travel focused on Lu and Carebear working together. I was worried about how the kids would react, Lu to being attached to the higher energy Carebear who she often shies aways from when we are at home, and Myffy to having Lu hold the leash for her dog. I was amazed. Both the kids and Carebear totally surpassed my expectations and took it all in their stride.

One of the issues with traveling with a dog on such a long haul flight is the fact that there is no where in the plane for a dog to discretely and hygienically relieve itself. Because the flight to London was nearly 10 hours, plus getting to the airport two hours early for an international flight, plus the two hour lay over and the hour and a half flight to Paris, in all Carebear would have roughly 16 hours inside of terminals and airplanes. Because we weren’t doing customs in the UK we were told that there was no way that we could leave the international terminal to take her outside. The solution: doggie diapers. It was a good plan but the truth is that it was such an odd situation for her that she just held it instead. Boy was she glad to see some grass when we got to Paris!

 

 

As far as the kids in the airports and the planes, I was actually pretty shocked by how calm and collected Tallulah was through the whole ordeal. Because we were carrying all of the feeding tube equipment, powdered food in cans and medications in bottles, as well as laptops, ipads, iphones and sundry electronics, our luggage got searched, scanned, swabbed, opened and pretty much everything short of making us drink Lu’s migraine meds. All of this took a very long time, which wouldn’t have been too bad if Myffy had not been really really upset from the moment we hit the lines for security. Usually if Myffy screams Lu throws her hands up over her ears and wails in torment. For some reason in the airport it didn’t seem to bother her much at all. Maybe it was all of the other things going on to distract her from the sound. I really can’t say. But she was calm and collected and kept hold of her leash and only got upset at security in London when for some reason they picked her out for a full body pat down and she didn’t want anyone to touch her belly near the site of the G-tube. I was really upset at this because Karalyn, who went with us on the trip, went through the metal detectors with Lu first and as she was putting Carebear’s collar and leash back on while body blocking Lu from running forward a lady came up and started patty Lu down without asking or explaining or anything. I was on the other side of the metal detector holding a screaming and thrashing Myffy, trying to shout at them to stop and let me through. Luckily Karalyn handled the situation well, explaining Lu’s autism and the feeding tube and after touching her ankles again they let her go and finally let me get through to them.
On the plane itself once again Lu did great. She settled in with her ipad and was perfectly happy to do her feed. British Airways was great to us in every way. The staff were fascinated by Carebear and truly impressed with her stellar behavior.  Especially when they saw us putting the diaper on her! Myffy had a bit of a harder time than anyone else and I was so glad that I went to that industrial supply store to buy a large box of individually wrapped ear plugs so we had them on hand to pass out to the nearby passengers, along with a card explaining what autism is. It saved a bit of time trying to explain what was going on while Myffy was screaming, and everyone around us was really awesome and supportive about it all. Myffy cried herself to sleep before we were out of Arizona, and slept through nearly all of the entire night flight to London. Lu did her feed and had her meds and slept as well.

All along we were warned that the customs people in Paris would be all over us the moment we got out of the plane, before we even entered the airport and would want to go over every detail of the paperwork for Carebear. And someone did meet us as we exited the plane, a woman in a red jacket who said to follow her. As we approached four police men she said something in French and one of the officers made a gesture with his hand and a pfwt sound with his mouth which I interpreted to mean he didn’t really care. At the end of the hall the woman went through a door to the left and waved us on down the hall to the right. It lead to passport control and then on to the baggage claim. I kept waiting for someone to ask for all of this paperwork, but the customs counter was empty and closed. We walked through the door marked Sortie with everyone else from our flight and no one ever asked to see anything. Isn’t that just always the way? You do everything you possibly can to be totally prepared, and then you realize you could have not prepared at all. Of course if we hadn’t been prepared, I’m sure customs would have been all over us.

The next day we drove to Plougasnou. It was a long drive through the french coutryside, which was lovely and luscious, but as we neared the coast of Brittany, I started to fall in love. Being California born and Arizona raised, I’ve never spent much time on the Atlantic Coast. It is definitely somewhere I want to get to know better. Lu loved the French countryside too. Just driving around seemed to make her so happy. This is Karalyn the graduate student pictured here in the van with Lu. She came along with us on the trip and was an enormous help with everything. Thanks Karalyn!

I’ll write more about our time in France in a few days so stay tuned for Part 2 or Our Trip to France!