Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for July 2011

Piece of Cake

with 5 comments

I promise this last post is going to be the last possible one I eke out of our visit to paediatric* cardiology.

Now, you may have gathered from the last post that I was flying solo at this appointment, but that is not true.  I’d sent Spectrummy Daddy details of our appointment on our shared calendar.  He is so busy at work right now, I wasn’t hopeful, but our hero managed to save the day.  Though we felt certain there wasn’t anything wrong with her heart, the last two years have taught us not to take anything for granted.  I was pleased to have him near.  You never know how much you need to hold a loved one’s hand until you’re in a doctor’s office getting bad news.

He’d had to go back to the car for his insurance card (mine having been squirreled away somewhere by the kids), which was parked some distance away in the only bit if shade we could find from the 99F heat.  When he returned after the concessions had been made, I informed him that he would stay in the waiting room while I went with Pudding.  There was no way we’d get her to be still if Cubby was in the room too.

I’d called ahead to inform them that Pudding has an ASD and ADHD, and the nurse who entered seemed to have been told that message.  She was soft-spoken and gentle, and gave Pudding time to warm up before asking me to remove her dress.  She let Pudding explore all the equipment, and told her exactly what was going to happen at each step.  She solicited Pudding’s help in matching the right colour to the right tab, which is always a good way to get my kid on side.  We had no problems getting the wires placed on her, but she was just as keen to remove them.  I retrieved a lollipop from my bag of tricks to give her fingers something to do.  It was pink, she was happy.

I was surprised at he speedy the whole process was, and the nurse announced moments later that the EKG was finished.  I thanked the nurse for her efforts, and told her I appreciated how smoothly it went.

“Yes, she did great!  It was a piece of…[No, don’t say it lady, please don’t say it!]…cake.”

Oh no.  Could this please, please be one of those times when Pudding is in her own world and not listening to the conversation?  Nope, she is looking, I’m sure she heard the nurse.  At least could there have been a massive leap in her linguistic skills, so that she understands idiom.  Because if my girl takes that literally, I don’t have cake in my bag of tricks.  I don’t even have cake at home.  I’m going to be in trouble here, and nothing in my bag of tricks is going to make up for (what she considers) a reward rescinded.

“Mummy, I want cake!  Where’s the cake?  May I have a pink cupcake, please?”

Drat.  And the ensuing refusal to leave the doctor’s office upon her cake ransom going unmet is they very reason I consented to a trip to American Guilt.  That day was anything but a piece of cake!

* No, spell-check, you’re wrong, I’m right!

Advertisements

Written by Spectrummy Mummy

July 15, 2011 at 9:08 am

Concessions

with 10 comments

Popcorn04

Image via Wikipedia

We walked into the waiting room, one the kids had never seen before.  Immediately they were overwhelmed with their need to explore, investigate, and touch everything.  I did my best to steer them away from things that shouldn’t be touched, but there were forms I had to complete.  Of course there was paperwork, there always is.

I lifted my head up to see a man removing Cubby from the cupboard below the fish tank, on the verge of sticking his fingers into the filter system.  Pudding was at the reception desk, pulling all the cards and pens out of their containers.

I rounded the kids up and steered them back into the chairs on either side of me.  Of course, mine were the only kids so overwhelmed in there, all the others were sitting patiently, their parents relaxing with magazines.  Enjoying a moment of quiet that is now being interrupted.  I know they don’t see special needs.  I know they see bad behaviour, and a mother who can’t control her kids.  Instead of the solidarity of strangers in a shared experience, it is undeniably us and them.

I try to distract the kids with books, but they resist my attempts.  They need to move, they need to touch.  I have some tricks in my bag, but I need to keep these for the actual appointment.  I have no idea how long the appointment will be, or how Pudding will take to having wires attached to her body.  Not well, I imagine.  I’m going to have to keep all my distractions for then.

They both go to look at the fish again, and Cubby has to go in the cupboard again.  I pull him away again, but I know he will just keep going and going back to it.  Pudding is humming and turning circles in the room.  Suddenly she stops as something catches her eye: “TV it’s a TV.  TV it’s a TV.  TV it’s a TV.” 

The receptionist looks at me for a moment.  She is trying to figure it out, why these kids are such a handful, why I can’t seem to get them to sit still like the other children in there.  What is with this family?  She tries to speak to Pudding first, then Cubby, but both ignore her.  Then she asks me if they’d like to see a movie on the TV.  Weighing up the need to make concessions for us, and disturb the peace of them.  She takes a chance on us.

Both kids immediately come to sit in their places.  The lady interprets this as consent, and Madagascar 2 begins to play.  She is still watching us.  I’m certain she is still trying to figure out if we’re rude, bad, or different.  Then Cubby looks right at her; we’re missing something, his routine is broken, and it must be rectified.  Oblivious to his innocent charm, he utters one sentence that wins the entire room over at once, making every adult laugh out loud:

“Where’s the popcorn?!

The atmosphere is lifted, Pudding and Cubby temporarily settled.  I complete the forms, eventually returning them to the smiling lady at the concession stand.

Written by Spectrummy Mummy

July 14, 2011 at 7:55 am

Wordless Wednesday 13 Jul 11

with 4 comments

That was then...

 

...and this is now, two years later.

 

Happy Wordless Wednesday everyone!

Written by Spectrummy Mummy

July 13, 2011 at 6:57 am

American Guilt

with 12 comments

Last night’s Spectrummy Mummy Facebook page status:

(Medical procedure + new special interest + trip to the mall) – spare cash = guilt to the power of 10. My equation for today.

We have another new interest.  I’ve quit calling them special, my Pudding is a little too easy in her consumer affections these days.  A few weeks ago we were at our local mall, when I noticed a large crowd gathered in front of a new shop.  We moseyed on by and saw that there was a new American Girl store.  There were little girls everywhere with multiple red boxes.  Something tells me that our part of America is not quite hit so hard by these economic times.  For those unfamiliar, American Girl is a shop that sells ultra-expensive dolls and matching clothes and accessories for girls.  We looked through the window, and Pudding was enthralled, and quickly demanded to go inside.  The place was so busy, that there was a ticket system to gain entry.  Even if we were prepared to wait hours to get inside, the place was still crowded.  I promised her we’d go in another time.

One day I pulled up the web site, and she quickly discovered a favourite, and named her “Kelly” (Pudding likes to give her own names to things she likes).  Since then, at least once a day, she has asked me to show her pictures of Kelly.  I heard that our store also has a bistro and girls can dine with their doll, and I knew how much Pudding would love it.  I talked the hubby into it, and found the earliest reservation we could make was for the last week we were here.  Perfect- one last treat for our American girl.

Yesterday we had to take Pudding to have an EKG to check that everything was fine with her heart (it is) due to her new medication.  She didn’t want to go.  She has seen enough doctors lately, I don’t blame her.  Enter the guilt, because of course, it isn’t fair that this is her life.  It especially isn’t fair that this is her life for what little time she has left of being an authentic American girl.  Armed with stickers and lollipops, Pudding did great, in fact, she eventually liked it so much there she didn’t want to leave.  We decided to do something nice for her, but at 99F, it was too hot to do anything outdoors.  We made our way to the mall.  Somehow, this translated to going to the American Girl store.

Oh I know, what you’re thinking- we got her the doll, right?  Well, we have decided to get her the doll she likes.  But it is expensive, and her birthday isn’t until December.  We need to get the money together for it, but also it has to be seen as special for her.  She can’t just get something because she wants it.  We’d planned on buying her one for when she goes there for her meal.  That week will see her packing up all her toys for a few months, and the Kelly doll will give her something to focus on for the flight.

We went into the store, and it was Pudding heaven: dolls and pink everywhere.  She was very enamoured with a doll’s iron and ironing board, which bemused me- ironing is man’s work in our house, she has never seen me do that particular task.  Of course, she wanted everything and the struggle was keeping her little fingers out of the boxes.  We took her to see the restaurant where we’d be taking her in two weeks.  Naturally, she wanted in.  I tried to explain that we could go there next time, but I’m fairly certain she wasn’t listening.  She had her own agenda.

We made our way downstairs and she found the Kelly doll.  Immediately she hugged it, planted kisses all over the face, and smoothed the hair.  I don’t think I’ve ever noticed a reaction to something that was at once so typical and so Pudding.  She wanted that doll like any other 4 year-old, but she loved it like only Pudding can.  She is the very definition of all or nothing, my girl.

Spectrummy Daddy and I looked at each other helplessly.  Moments later Cubby decided he needed a boy doll too.  Where was a doting grandparent when you needed them?  We had to get out of there.  I tried reason to get her to put the doll back, but Pudding loves beyond reason.  Eventually with more guilt than it is humanly possible to feel, I had to prise it from her hands, place it out of reach, and carry the screaming Pudding out.  All eyes were on us, of course, but I doubt I’m the only mother to have carried a brokenhearted little girl out of there without a red box.

As we neared the doors, a sales assistant approached with a sticker.  Pudding was incandescent with rage, thrust the sticker back at the lady and between sobs forced out:

I-don’t-want-a-sticker-I-want-Kelly-doll.

…which was just awesome pronouns, especially when distressed!  I’m sure the lady was confused: there are many dolls with names, but none of those are Kelly.  Once we were safely out, her newly motivated language skills were in full force.

“I don’t want to go to the playground, I want to go back to the Kelly doll.  I want Mummy to get her.  Mummy, please get her.”

Each polite, appropriate, functional request an extra little stab of guilt.  Eventually the tears stopped, and I talked to her about earning the doll with her tokens.  She seemed to get it.  The chart had worked before in getting what she wanted.  She began to cooperate, and after some time in the playground, we left for home.

This morning we began the day with her usual insistence that she stay home with me instead of going to school for the morning.  Later she told me she had to go to the mall, for Kelly.  I’ve got to make a calendar with a picture of the Kelly doll.  Two weeks is going to be exhausting when time is measured in guilt minutes.  And then of course, I feel guilty for Cubby.  More guilt dollars.  There is going to be a point where I’ll be the first ever stay-at-home autism mother who is forced to return to work because of the guilt.

American Guilt, at a mall near you.

Written by Spectrummy Mummy

July 12, 2011 at 7:39 am

Mosquitoes and Hope

with 5 comments

Let me preface this by saying that as I write, I’m covered in dozens of mosquito bites both old and new.  The fresh ones are demanding most of my attention, distracting me with their itch.  They are raised and red, each one about the diameter of an orange.  As bad as my reaction to mosquito bites, as attracted as they are to me.  Sitting yesterday in the shady woodland near a creek, I was a veritable banquet- no matter how much spray I applied.  It is fair to say that I hate mosquitoes, yet perversely, in the last few days they have given me hope.

I’ll start at the beginning of last week.  We had returned from visiting family in Florida.  Pudding was supposed to go back to school the next day, but couldn’t as we didn’t have a school-authorized Epi-Pen.  Only the week before we had learned that Pudding has become dangerously allergic to peanuts, despite never having them (or tree nuts) as part of her diet.  In fact, over the last year, she has become almost 10 times more allergic to peanuts than she was, even though she has had a very restricted diet monitored at all time, with no chance of cross-contamination.  With the news I resigned myself to the fact that I have no control.  No matter what environmental changes we try to implement, certain tendencies are just written into her DNA, I can’t change it, I can only accept it.

But I’ve been struggling to accept anaphylaxis in a child with autism.  A child who has a real disconnect from her body and senses, to the point where I’ve witnessed her receive injections without flinching, without noticing or feeling the needle enter her skin.  A girl who can’t tell me that she is ill, or in pain.  A child whose ADHD makes her incredibly impulsive, the one who would see an unattended chocolate bar with peanuts and eat it before any of us would notice.  And then be unlikely to tell us what had she had done.  A child whose pragmatic language skills would limit her ability to tell us that something was wrong, that she can’t breathe.

I’ve been terrified.  I’ve raged at the unfairness of it.  I’ve worried about it constantly.  And then, accepted that there is nothing I can do to change it.  It is part of her, and I need to accept it, and learn how to work around it.  It could be worse.  She can be in a room with peanuts, she may even be able to touch them, our main concern is with ingesting them.  As long as I continue to provide all her food, and she is watched to make sure that is all she eats, she should remain safe.  And we repeat and reinforce what she can and can’t eat, and hope for the best.

But back to mosquitoes.  One afternoon last week, the kids wanted to play on their sand and water table.  I joined them outside, but upon seeing the mosquitoes, I decided to go back inside and watch them through the patio doors.  The kids don’t tend to get bitten, so I thought they’d be okay.  Later that night I learned that their apparent immunity was only guaranteed when I was around, offering my tasty blood to the little suckers.  Pudding in particular had fallen victim to their thirst, and had a few bites.  She came up to me and showed her leg:

“What’s that, Mummy?”

I told her they were bug bites, and showed her the corresponding wounds on my own body.  She repeated bug bites as she prodded each one, and I applied the cream.

Itchy.”

Just one word.  One little word, I’d never heard her utter before, but it told me so much.  She was able to accurately describe a body sensation.  It gives me hope that, should the worst ever happen, she’d  seek me out, or seek somebody out, to find out what was wrong.

It is going to be a long time  before I’ll feel confident that Pudding can understand the danger of her allergy, but one mosquito bite at a time, I’m hopeful we’ll get there.  Now if you’ll excuse me, I have some cream to apply.

Written by Spectrummy Mummy

July 11, 2011 at 7:28 am

Sensory Showing

with 11 comments

Last week we were visiting family in Florida, but the timing coincided with something I planned on doing one last time before leaving the country: attending a sensory showing.  Here in the US*, AMC theatres provide a monthly sensory showing of a film for those on the spectrum and their friends and families.  It. Is. Awesome.  The normal rules of the cinematic experience are suspended.  You are free to move around and talk, bring your own allergy-free snacks, and the volume is lowered and a light kept on.  Instead of the usual commercials and trailers, the film begins right away.  They even put a special price on tickets, so a family living here outside expensive Washington D.C. pays the same amount as those living in more affordable parts of the US.

The downside to the sensory showing being only once a month, and catering to the entire population (not just children) meant that the two films Pudding would most have enjoyed were not sensory showings.  We went to see The Princess and The Frog anyway at a regular showing.  We deliberately waited until it has been out for a couple of weeks, and went to a Sunday morning screening where there would be other kids.  Pudding enjoyed much of it, but the sounds was a little loud, and some scenes were scary.  She needed to make a couple of trips to the bathroom.

Towards the end she was a little overwhelmed, and I gave her my iPod (volume off) to distract her.  A woman sitting behind us quickly told us it was distracting her, and asked us to switch it off.  I wanted to tell the woman how well she was doing, that she just didn’t know what distracting was, but she’d soon find out.  But the normal rules applied there, so I did as she asked, fully expecting a meltdown.  But Pudding coped, she just asked to leave again.  Her Daddy took her for another walk and they returned for the final scene.  I was soured by the experience, and when Tangled came out and we found it was not the sensory showing that month, we decided to wait until it came out on DVD.

Finally Toy Story 3 hit the cinema and it was a sensory showing, and we had no other plans that day.  I don’t recall a time when we have felt so welcomed as a family.  There was a real sense of community, and I knew no matter what my kids did, we would be accepted and respected.  There are few times we’ve been out in public when I could say that.  Pudding really only identifies with female characters (read princesses and fairies) and Toy Story 3 became a bit overwhelming for her, so that time we took advantage of being able to wander around safe in the knowledge that we weren’t bothering anyone.  A child behind us began the film by reciting every line after it was spoken.  His parents soon urged him to stop, but it didn’t annoy me in the least; rather it cemented the fact that we were with those who understood.  Pudding had just started in her preschool autism class, and a classmate found her and cupped her face and spelled put her name.  I didn’t know she knew him (though I guessed), but marveled at how relaxed she seemed with somebody touching her.  I wonder if she was so calm because we were, because the normal rules that are so constraining for her just didn’t apply that day.

Our family already had plans the day of the sensory showing of Cars 2, but I persuaded them to join us for it.  Cars 2 definitely isn’t a Pudding kind of film, and it also went over Cubby’s head, but just being free to move around, play in the iPad, and speak is a freedom that they enjoyed, and so did we.  All the cousins got to enjoy the movie together.  Though we were away from home, it was still touching to see moviegoers hugging each other at the end.  That sense of community and belonging is a real gift.

Thank you to The Autism Society and AMC for making these accommodations and giving my children such enjoyment, and making us all feel like we belong.

*UK readers click here for information about an autism-friendly screening.

Written by Spectrummy Mummy

July 8, 2011 at 7:35 am

Flying with Young Children on the Autism Spectrum

with 16 comments

We just flew for the first time since Pudding was diagnosed with an ASD almost two years ago.  However, it is definitely NOT the first time we have flown with a child with autism.  Before we returned to the US, we were real jet-setters, and Pudding racked up more flights in the first two years than most people do in a lifetime.  We have experience, but as with everything autism, we are still learning.

On Thursday we flew to Florida to spend a few days with family.  I looked at it as a trial run for our upcoming move, and with that in mind, the trip went perfectly.  On the flight out, Pudding was (mainly) a model child, on the return…let’s just say it was quite the opposite.  Between the two extremes, I’m armed with a better idea of what does and doesn’t work for her.  If you plan on flying with young children on the spectrum, this might just help you get off the ground too.

Preparation

Do: Read books about flying and airports.  Play at packing backpacks and luggage.  Practice going through security.  Find out what the facilities are like in the departing airport and at the destination.  Some airlines will even list their meals and snacks as well as in-flight entertainment.  Use all this information to get them excited about the experience.  We read a book about airports for a few weeks, then on the day at the airport I kept pointing out to the kids what part we were at, and what was coming next.  Shame the book ends as the flight begins though.  We need a social story to see us through the rest of the flight.

Don’t: Leave it until the last minute.  You’ll not have enough time to do it well, and get stressed out.

Security

Do: Find out if your airport has a separate screening area for people with disabilities.  If so, use it.  The agents there will be more understanding if your child has a meltdown, and nothing causes sensory overload like going through airport security.  Warn the staff about potential difficulties such as taking off shoes, walking through the metal detectors and putting toys through scanners.  Make sure these are in the social story!  Do arrive with extra time.  Nobody needs to be rushed at a stressful time.

Don’t: Use diagnoses or words that don’t have meaning to those unfamiliar, like “high-functioning,” “PDD-NOS,” or “Asperger’s.”  Your child has “autism” or “special needs” and that is all the security agent needs to know.  Don’t get stressed!  Your child will too.

Cubby riding the trunki. He loved it until he fell off.

At the Airport

Do: Use the time to get exercise/sensory input.  Carrying a backpack, or pulling a trunki will provide some proprioceptive input to calm and organize.  Walking around will burn off some energy for fidgety little ones.  If you have enough time, get something to eat before the flight, even if meals are provided.  You don’t want to have a hungry child, or a picky eater who refuses the in-flight options.

Don’t: Expect your child to sit and wait patiently before the flight and then do the same during the flight.  It won’t happen.

Toys

Do: Let your child pick a couple of favourite toys to have with them on the flight.  Also, find some travel games, books, crayons, colouring and stickers books that they’ll enjoy.  Here is my tip: if your little one likes getting presents, wrap them up.  Every once in a while let her pick out a new toy.  They don’t have to be expensive, they just have to keep their interest.

Don’t: Let them have the bag, they’ll likely open them all immediately.  Don’t take loud electronic toys that will annoy fellow passengers.  You’ll feel conspicuous enough without attracting more attention.  Unless you don’t care about the pieces getting lost, don’t take things with small parts.

Sensory

Do: If you provide a sensory diet at home, think of the flight as a sensory banquet.  You’re going to need all your tricks to keep your kid regulated.  Weighted vests, lap pads and blankets can work wonders.  Never underestimate the noise of the engines, both ear protectors and regular headphones are useful.  Pudding normally resists her “chew toy” but chewed on it for most of the outbound flight.  For the next flight I’ll take her chewelry as well.  Anything that works, and a few things you haven’t tried yet.

Don’t: Imagine you can possibly pack light.  I took a few fidgets that Pudding never had any interest in, but another time they might have saved the day, and my sanity.  Instead she was happy to play with a few inexpensive lacing and beading toys which distracted her on taking off and landing, and worked her fine motor skills at the same time.

iPod Touch or iPad

Do: Beg, borrow, or buy one if at all possible.  Then load it up with books, apps, TV shows, podcasts…anything and everything to entertain your child.  It needs to be fun, not just educational.  I handed Pudding my iPod Touch on our 10 hour flight back to the US, and she may have been the only toddler ever to do a transatlantic flight without tears.  I was concerned about her having too much screen time, but she mixed it up with other things I’d brought.  This time she had her own iPad.

Don’t: Forget to charge it.

Books

Do: Bring a couple of familiar favourites and one or two new books.  During take-off and landing you need to switch off electronics.  Books are also good for transitions if you want your child to go to sleep during the flight.

Don’t: Take heavy hardbacks.  If you haven’t already worked it out, you’re going to be carrying a lot of stuff!

Snacks

She overlooked the fact that it was her brother’s special interest when she found it was full of tasty treats.

Do: Carry on the party theme and use party gift bags to package your treats and snacks.  I filled a little bag with healthy snacks and a couple of treats and let Pudding have the bag during our last flight.  She liked having control, and I was certain everything she ate was allergy-safe.  The party bag just made a few pretzels, raisins and sweets a bit more special.

Don’t: Assume your child will be okay with the food or snacks provided by the airline.  Sometimes a taste of the familiar can offset a new experience.  Don’t take treats with you unless you’re prepared to let your child have them all.  If they see goodies but you deny them, you’re going to hit turbulence.

Special Interests

Do: Make good use of special interests of favourite characters.  Toothbrushes, clothing, backpacks and luggage are much more appealing with a superhero or princess.  Try incorporating them into a social story about appropriate behaviour while on the plane or at the airport.

Don’t: Try to introduce more “age-appropriate” interests.  So what if they are too old for Elmo?  The goal is to keep the kid happy and calm.

All that matters is their comfort.  That is my mantra when flying.  When they’re comfortable, so are we.  In fact, we’re ready to soar.

Happy Flying!

Written by Spectrummy Mummy

July 7, 2011 at 7:28 am