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!

Lu’s AC Breakthrough

Ever since reading the fantastic book “Brains, Trains and Video Games” by Alicia Hart in 2011, which told the story of her son Ewan who has both Autism and EE like Lu, I have wanted to find a way that an Agumented Communication Device could help Lu to communicate with us. I talked to her SLP (Speech Language Pathologist) and she brought us a Dynavox talk box which at that time was a large and heavy box with lots of icons on it that speak words when pressed. Lu was totally unimpressed. By that time she was already a wiz on her iPad and could get it to do far more than I knew how to do on it. She loved watching vintage Barbie commercials in German on YouTube and even figured out exactly what to do to download new apps. The talk box was big and clunky and looked totally outdated next to her shiny new slick touch screen ipad. I downloaded a couple of really expensive communication apps like One Voice, Proloquo2go, and My Talk, but none of them really interested her and she was so quick on the draw that she could click the home button and get out of those programs before we were able to show her much of what the programs could do. As with most things for Lu it was a matter of motivation and attention and after a few months of fruitless effort which included us taking actual photos of a lot of real things that Lu is interested in in real life, but couldn’t care less about on her iPad, I gave it a rest.

At the end of Lu’s preschool year, before she moved on to Kindergarden we had an IEP at which the school’s SLP mentioned that we could request an AC evaluation. I jumped at the chance. An opportunity to get more information about what might possibly help Lu along is always gladly accepted by me. The team who evaluated her recommended a Spring Board device with the same kind of super basic icons as the old one, but on a smaller and lighter device. Worth a try I thought, so we borrowed one from the NAU Assistive Technology Department for a few months, but it was met with the same distain from Lu as before.

This year a LAMP app was finally released for iPad. This time I was excited. Lu loves her iPad. Maybe on the iPad this program would seem more exciting. We again borrowed an iPad from the NAU AT department that was set up to only have the LAMP program on it and nothing else so she would not be tempted to navigate away from the program to find other more interesting things to look at. We even programmed in an icon for her to request her other fun ipad. It worked slightly better, but just about the only thing she ever requested with it was her ipad, which she could request verbally if she wanted to. So after awhile of us trying and the SLP trying, we eventually abandonded it again.

And then came the ipad mini. I don’t know exactly what it is about the mini, but Lu absolutely loves it. Once again we put nothing but the LAMP program on the mini so the only thing she can do with it is use it as a communication device, and finally for some reason, this time it clicked. Maybe she likes the size and the shape. Maybe it’s the way the icons look smaller on the screen. Whatever it is she started exploring it. First she learned where the animals are on it, the pets, the farm animals, the zoo animals, and then she started checking out the toys and the food. She asked for hot chocolate. Not chocolate milk which she has asked for before, but hot chocolate which she had only had a few times. We discovered that she loves hot chocolate but didn’t really know how to ask for it. Then she asked for grapes. She has never asked for grapes before. I thought maybe she was just poking buttons to see what they would do, but she really seemed to want grapes. She also asked for tacos and hotdogs which she had never eaten before and seemed disappointed in once she got the real thing, but at least she was trying and asking for new novel things. And then the most amazing break through of all. Stew came in from work one day, kind of dirty and a couple of days unshaven. Lu was doing her feed on the sofa and he knelt down to say hello and he asked her for a kiss. Lu’s version of a kiss is to either put out the back of her hand for us to kiss or to lean her head forward to allow us to kiss her on the forehead. She let Stew kiss her hand this time and then looked down at her ipad mini where she found the body parts section, and then pressed on ‘beard’ then she went back to the home button and found ‘no’. She made the box say ‘Beard no’ and then repeated it while putting her hand on Stew’s face. She didn’t like his stubly beard. This was something that she has never had any way to express. How long has she not liked it when he tried to kiss her with an unshaven face? Possibly always, but she could never tell us before. Stew and I looked at each other amazed, then he ran to the bathroom and had a quick shave. When he came back smooth-faced with a few cuts here and there he knelt down again to show Lu. She put her hand on his face and smiled. He said ‘no beard’. She said ‘no beard’. And I think I was pretty close to bawling my eyes out. Since then she has been saying all kinds of things to us with the ipad. Some of it makes sense, some of it doesn’t. She is still exploring and playing with a lot of it. But another great moment was once when she touched the icons for lion, then tiger, then bear. She hit the talk button to make it say ‘lion tiger bear’ and then looked right at me and followed it up with ‘Oh My!’. I knew exactly what she wanted then. She wanted to watch The Wizard of Oz.

That one little experience of Lu figuring out how to ask me to watch The Wizard of Oz made me marvel and the thought and effort she has to put into something that is so thoughtless and automatic for most of us. And I think that it really goes to show that a lack of speech is never indicative of a lack of thought. Lu has to put so much thought into how to help us understand what it is she is trying to tell us.

Some Progress. Finally.

In my last post I listed some of the many medical things going on with the kids these days and how much we were hoping to have some really answers soon. And finally it seems that a few answers are forthcoming. Myffy saw the ENT who has put her on a course of mild topical steroid treatment for her adenoids delivered by nasal spray which he said we would know was working if her snoring decreased and her sleep improved. Almost immediately we noticed improvement! The past several nights have been some of the best sleep Myffy has had in ages! 



The past several nights have also been the start of Lu’s trial of a migraine prophylactic medication that has a strong sedative side effect. And she has been sleeping better once she gets to sleep. When I have asked her if she has ow and touched my head and then pointed to her head, instead of touching her own head and saying ow the way she usually does, she looked right in my eyes and said no! The first time we gave her the new med we thought she was having an anti-sedative reaction to it the way she did when the dentist tried to give her valium in order to work on her teeth. It seemed like she was on speed or something. Totally manic, jumping, screaming, laughing uncontrollably. Not that she doesn’t have those moods on her own without any medication at all, but the fact that every night we’ve given it to her she immediately has this manic half hour to hour and a half or so and then very suddenly dropped into sleep like dropping a stone, makes it seem connected to the medication. The first night I had stepped out of the bedroom to let Dahanna outside and then brought her back in and I heard Lu call out “Mamma!” By the time I got back into the bedroom and climbed up into bed next to her she was so soundly asleep she didn’t even stir as I covered her and moved her ipad out from under her arm. The second night was similar though that night she got up after doing her feed and was manic for quite awhile before I managed to coax her onto the sofa to watch Tinkerbell ‘The Secret of the Wings’ with me and cuddle until she was just on the edge of sleep, then I carried her into her own bed and snuggled until she was out which took about 2.5 seconds.

Lu’s glasses also seem to be helping with everything quite a lot. The fact that she really wants to wear them, keeps them on all day and only wants to take them off to go to sleep leads me to believe that they are helping her see better. And all of us have noticed that she looks at things for longer periods of time where before it seemed like her eyes darted from one thing to another pretty quickly. And her coloring and drawing have suddenly taken a dramatic turn towards precision and figurative representation. 



The other day she drew this drawing at school and when Madison, her school aide asked her what it was Tallulah told her that the main figure was a horse and that the drawing in the upper right area was eyes and that the small figure in the lower right was Dahanna. In the past she has often asked us to draw things for her and then colored them in and she always loves coloring in coloring books and stuff like that, but she has never completely free hand come up with a figurative representation this way. It is all very very encouraging. 

Now we just need to get through Myffy’s endoscopy and biopsy to check for EE in a couple of weeks, get the results and act accordingly, and then I will hopefully finally feel like we are on top of the kids’ medical concerns again. Whew.

One procedure leads to another

The past few months have been fun for the snow and the holidays and all, but in the midst of it we have been busily racing down rabbit holes trying to solve the all of the kids’ medical mysteries.





The sleep study in November gave us a diagnosis of obstructive sleep apnea for Myffy, which wasn’t too much of a surprise. My sweet little 24 pound elfling sounds like an enormous old man when she sleeps, snoring long and deep with scary halting breaths that keep me awake worrying that she has suddenly stopped breathing. I’ve always blamed that horrible bout of RVS she had when she was only two months old that kept her in the hospital for a week and required her to take an oxygen tank home for sleeping at night. But now they think that it might be the adenoids or the tonsils. I really hope it is the adenoids or tonsils because either of those would be super easy to fix. Just a small surgery, a day in the hospital, something plenty of kids have done, and presto! Her obstructive sleep apnea would be no more! Fingers crossed that’s all it is. Especially now that Myffy herself has been scheduled for an endoscopy by the GI doctor because her 1 pound of weight gain in the past 18 months is worrying to us all. Luckily she was a super hefty baby so this year and a half of stagnant weight leaves her still within normal weight and height for her age, even if she is now on the low side.

The major concern is that she may also have EE (like autism there is a very high sibling incidence) however because we have all been on a restricted diet for many many months, she may be having a subdued reaction which is harder to detect than Lu’s original projectile vomiting symptom. Mainly Myffy makes strange throat noises while she sleeps, labored swallowing in between the snoring, which could be the sleep apnea, or GERD, or minor reflux, or EE. So for the moment we have been instructed to let Myffy have every allergen she can get her hands on so that we can get some reliable results for the endoscopy next month. Access to some real dairy ice cream and wheat based breads and pizza crusts might put a few pounds on her as well. Fingers crossed she will check out ok. The thought of putting her on Elecare Jr is pretty disheartening. If she does check out ok I can’t help but think that sleeping better will help her appetite and all other areas of life as well.
The surprising thing about the sleep study was that nothing at all showed up for Lu. No abnormal results. No skipped sleep phases. No low oxygen levels. Nothing. Granted they weren’t able to quite get all of the gear hooked up to her, but I was really hoping for something, nothing awful, just something easy, something that could be treated and fixed. Instead we have nothing. No results from that, still nothing from the unsuccessful eye exams, no explanation for the headaches or sleeplessness. We discussed with the doctor trying to do a sedated eye exam and sinus x-rays, but in the end we all concluded that if she needs to be sedated again we might as well go for the MRI which will show us the most. So last week we did the MRI here at the Medical Center in Flagstaff and today I got the results.
It’s so strange waiting for results for procedures on my kids. Usually the result everyone wants from any medical test is the all clear, but instead I always find myself hoping that they comeback with something that is easily treated instead. I don’t want anything to be wrong with my kids, but when they scream in pain and don’t sleep at night I can see that something isn’t right. So I want a reason. A solution. A plan of action. The results that came back today for Lu is an abnormal amount of fluid around the optic nerve. It might not be anything. It might be something. It might be causing enough pressure to cause the pain. It might be a symptom of something else going on with her eyes. But just from the MRI we really don’t know. So just now I scheduled her into the pediatric eye center in Phoenix for a thorough and once again anesthetized procedure to dilate her pupils and examine all the parts of her eyes at 8:15 tomorrow morning. On the one hand I am completely relieved that there are no tumors, no major malformations of the brain, no obvious and dangerous swellings inside. I am glad to know that the worst isn’t there. I’m also slightly relieved that something showed up because if nothing at all had we would have hit a dead end with no way of knowing how to offer relief. And yet what we are left with now is yet another procedure to explore and try to find the cause. Can I cross my fingers three times in one post? Sure why not. Fingers crossed!