Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for July 2010

Less is s’mores

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So I’ll begin where I left off, with the graham crackers.  For those of you reading from across the pond, the closest match I can come up with for a graham cracker is a digestive biscuit, with a bit of honey and cinnamon.  You can just eat them as they are, but they are often used in desserts like key lime pie, which tastes like my honeymoon.  They are famously (well, in America) used to make s’mores.  S’mores are a graham cracker sandwich of toasted (preferably on a camp fire) marshmallow and chocolate.  They are delicious, or s’moreish as I like to say.  Eating s’mores is one of those quintessentially things you do as an American kid.  Pudding’s preschool autism class is doing a camping theme, with s’mores.  And if I lived an ordinary life, that would be the end of it.

Pudding is allergic, sensitive, or intolerant to gluten, dairy, potatoes, rice, carrots, beef, green beans, eggs, fish, cashews and peanuts.  We are new to this discovery, and there are likely to be more foods she can’t eat.  All the stuff you can buy that is gluten free has dairy, or rice, or potatoes in.  So you can’t buy ANYTHING that is pre-made and you have to make EVERYTHING from scratch.  When I say “you” I just mean me, of course, because I’m yet to encounter anyone with a kid with this many food allergies, though I’m sure such souls do exist.

Maybe one day I’ll get around to telling you about there being a sizable sub-section of the ASD population with food allergies/sensitivities/intolerances, and that a diet removing the proteins in wheat and milk has been helpful for some children.  How there is a whole industry springing up around this, for better or for worse.  How I think all these allergies are created by the food industry.  I’ll get around to telling you about what we found with Pudding, but it is an ongoing saga, and I really need to stick to those damn graham crackers.

I know you’re probably wondering why I don’t just give her something else to take to school instead.  I could, of course.  She may not notice, she probably wouldn’t even care if she did.  She seems to like her graham crackers without the chocolate and marshmallows spoiling them, so not having s’mores is not going to be a big deal for her.  So many things are a big deal for her, so many things are going on right now, that it seems ridiculous that I would consciously create my own big deal.  That is exactly what I did yesterday.

So, why?  Well, part of it is because I have a little bit of guilt that we live our nomadic lifestyle.  That our kids don’t get to have the same experiences as other kids.  Don’t get me wrong, they’ll have other, amazing experiences, but they often seem to miss out on the more mundane things.  We just have one year left of being a (half) American girl living in the USA.

Secondly, in a world where she and her school friends are the odd ones out, I don’t want her to be left out.  I too had allergies as a kid, and remember being banished from the cafeteria when the offending food was served.  Clearly her beloved teacher Ms. S is not about to banish her, but being marginalized in a special ed class is the kind of thing they write country songs about.

Thirdly, during my extensive web-based research (really, I need a doctorate for all my studying this last year) I came across an alarming link between anorexia nervosa and girls with Asperger’s Syndrome.  I know, I know, that I’m worrying about that too early for a girl who has always been over 95th percentile on the growth charts, but I can’t remove these pieces of information once they get in my brain and they twist and turn themselves around until they become legitimate fears.  We’re starting to see more control and choosiness over her food that may be a result of the restrictive diet and those stupid allergies.

I thought I’d turn it into one of those fun, crafty-do-it-together things that are fine for other people, but quickly degenerate over here.  I’d bought some teeny-tiny animal cutters that were adorable, but impossible to use.  So Pudding used a gingerbread man cutter, and I used the animal cutters.  Next came what we take as conversation, but others might be more inclined to call monologuing (yes, that is a word, it was in The Incredibles).

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Written by Spectrummy Mummy

July 30, 2010 at 9:04 am

I want to tell you…

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“I want to tell you

my head is filled with things to say

When you’re here

all those words they seem to slip away”

Harrison, George.  “I Want to Tell You”.  Lyrics. The Beatles “Revolver” Capitol Records, 1966.

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July 29, 2010 at 6:55 am


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The hospital where Pudding was diagnosed recently sent out a request that parents whose children were diagnosed there write a letter to other parents of children who are just now going through the process.  I don’t know if they will get to use my letter, as we have to keep anonymous.  However, the internet has a magic way of getting a message where it is needed.  It did it for me a year ago, and now I want to pay it forward.  Here is my letter:

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July 28, 2010 at 7:27 am

Coming Out

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I once had a conversation with a friend, who is gay, about Coming Out.  He explained that coming out is a big deal, you build up to it, it takes all your nerve, you finally do it and feel an enormous sense of relief.  Then it dawns on  you that you just came out to a few people, and there are about 6 billion more on this planet.  You have to keep doing it, over and over again every time you meet someone new.  And every time you worry about how they are going to deal with this information.  How will it change they way you are perceived?  Are they even worth sharing this personal information with?

Almost exactly a year ago, we started to notice Pudding’s differences.  We were scared and confused; overwhelmed by the A-word.  We had to acknowledge that our visions of her future did not belong to her, and it was okay to let go of them.  She was the same little girl she always had been; that is to say, a little different.  Still, it was hard to tell friends and family.  We knew our parents would feel that same fear for her future. We hated that awkward silence when we told friends.  It gets easier, though, and the more we feel comfortable about talking, the more questions people are asking.  Questions are easier to deal with than silence.  Questions lead to understanding.  Silence leads to shame.

There is another way.  Pudding’s disability is invisible.  We could keep quiet, hide her secret.  Unfortunately, secrets imply shame, and shame leads to stigma.  We don’t ever want her to feel ashamed about who she is.  We want to take these diagnostic words and demystify them.  To learn about the community of “Aspies” and “Auties” who not only aren’t ashamed of who they are, but take pride in their differences, and their contributions to this world.  We are determined that Pudding and Cubby will grow up taking pride in who they are, whoever they turn out to be.  It will be difficult.  As they get older they may not choose to be open, and that will be their choice.  It is our job to make sure they feel confident and strong enough to make that choice.

I’m thinking about this because on Friday Pudding will have a play date with a new friend.  I’ve been corresponding with the mother over email, but I haven’t mentioned that Pudding has autism.  Do I let her know before we meet so that she is prepared?  Or do I let her and her daughter meet Pudding first, so they can see there is more to her than a diagnosis?  I’m not sure what to do.  Even spectrummy mummies don’t know everything!  Suggestions in the comments please.

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July 27, 2010 at 7:08 am


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"I've got pinktails in my hair"

I have always loved words.  From an early age I developed a voracious appetite for reading.  I love Scrabble, and crosswords, playing around with words.  I love a good pun.  So it shouldn’t come as a surprise that Pudding likes words too, as difficult as they are to come to her at times.  As with everything though, she puts her own atypical spin on things.  I love her humorous, absurd uses of language.  I can’t wait to see who she is going to be, this exceptional child.  As a word-lover, I delight in all these language differences.  As a spectrummy mummy my job is to correct, normalize the dysfunction.

Here are some of Pudding’s words.  Sometimes they leave me lost for words.

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July 26, 2010 at 8:40 am


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When your child is typically developing, you see progress in steps.  Your little one moves incrementally forward, passing the developmental milestones.  And while there might be a couple of steps backwards at stressful times, and jumps forward at others, usually you can count on a steady pace in the right direction.

For spectrummy kids, this isn’t usually the case.  When we think of autism, we think of the monster that is Regression.  Regression doesn’t push your child down a step or two.  Regression clings on to your little one and pulls so hard that somehow you are 18 or 19 steps backwards.  As a parent you can only watch in horror.  You can’t fight this monster.  And all the hard work your baby has put in, so, so much harder for her than others, is gone.  You think about what a waste of time and effort all those occupational therapy and speech therapy sessions were.  You hate that life has to be so much harder for her.

Then there is Progress.  She is a visitor who never overstays her welcome.  A sprite you try to capture, who flies away before you can grab hold.  But somehow that sprite has left a magical gift.  And it is never a step forward, but a leap.  And you can’t fathom how that leap happened, but you don’t think about it too much.  You just delight, and tell everyone.  Everyone.  That was your kid who attracted the attention of the waiter (okay, manager, but who can tell the difference?) and requested another drink.  And you don’t care that her friend did that two years ago.  It is our Progress, don’t take it away from us.  She has to visit someone else, but she’ll be back.  We’ll be waiting, ready to move forward again.

When you see your friends, they’ll ask a deceptively simple question about how you are doing, and you always answer “fine”.  You have no idea how to put this into words.  There are highs and lows that other people never experience.  We are running our own race.  It is chaotic and challenging, exhilarating and exhausting.  We just put one foot in front of the other, because we know no other way to make those steps.

Written by Spectrummy Mummy

July 24, 2010 at 7:35 am

Thinking about the unthinkable

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Today I read on the always amazing A Diary of a Mom blog about yet another tragic murder of two children with autism by their mother. Jess writes perfectly about the horror of this act, the grief we feel, and how unthinkable it is.
And yet, I feel myself thinking about it a lot. If I haven’t made this clear in my previous posts, let me say right now how lucky I am. Lucky that we have hope for the future, lucky that we have more good days than bad days, lucky that even on those bad days, I have amazing support from Spectrummy Daddy, and our family and friends.
I’ve written before about the cost of having a child on the autism spectrum, but there are other costs too. The challenges can bring conflict to a marriage, the stress can damage a caregiver’s health, careers are put to an end, with the sense of fulfillment they often bring. I’m very fortunate so far, but I’ve seen all of this.
Long before I was a spectrummy mummy, I was a volunteer carer, along with my parents. I worked with adults (amazingly none of which were on the autism spectrum, or at least diagnosed as such) and my role was to give them a day out of their week to look forward to. We’d do whatever was enjoyable for the client- be that a day trip to the seaside, a restaurant for lunch, a game of bingo, or just sitting around chatting over tea. There was a lot of tea.
My undisclosed job, however, was to bring a much needed break to the individuals and families taking care the rest of the week.  Sometimes a spouse or a guardian would tell me that they just couldn’t wait a whole week. That they lived for that one day off, and I would get a sense of their desperation and hopelessness. It was a glimpse of the darker side of taking care of another individual all the time. It was no problem, I’d call up my support worker, and go from one day, to two, three, even five. Whatever was needed. My parents would offer up their home for a week or two, a real break, both for the individual and their family. Just to make sure the caregiver never got too close to the edge. So they could carry on with love, and doing what needed to be done. After all, it was cheaper than placing somebody in an institution, as far as the local government was concerned.
Even though this was a relatively small amount of my time, people would tell me they couldn’t do what we did. I would think even then, about how life doesn’t always offer you a choice. That your healthy spouse, parent, or child may not always be that way.
Though people don’t like to do so, it is acceptable to place an aging parent in a rest home. It is less so for a parent to do the same with their child. Yet the challenges can be very much the same, the supports just as limited. And those caregivers who needed a break, did they know how desperate they sounded? Would a break prevent a tragedy? Would support have prevented that mother from such a heinous act and saved the precious lives of those children?
Sometimes you don’t know how close you are to the edge.  Sometimes you don’t know you need help. This tragedy was unthinkable, but we really need to think about it. All of us.

Written by Spectrummy Mummy

July 23, 2010 at 9:14 am

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Short Bus

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My baby rides the short bus to school, and I’m okay with it.  If you didn’t grow up here, you aren’t familiar with the network of yellow buses belonging to the school district that round up school-age children and ferry them from a convenient stop near their home to their schools.  It reduces traffic congestion, is kinder on the environment, and is safe and reliable.  It is free of charge.  It clearly signals a beginning and end to the school day for the many kids who need help with transitions.  If your child has special educational needs, it gets even better.  They pick-up steps away from your home (door-to-door service!) and usually carry an aide who makes sure your child is feeling safe and comfortable.

When Pudding first entered the school system, the members of the IEP meeting checked that we wanted these services.  Of course!  Who wouldn’t?  Well, bullying is a sad reality for many children, especially those who are different.  Many parents have grown up hearing the pejorative phrase “rides the short bus” to describe people with disabilities, especially mental retardation.  They don’t want that stigma for their child.

Coming from a place where we don’t have school buses, long or short, I just don’t have the same perception.  The stigma is an entirely cultural construct.  Maybe all stigmas are.  Pudding and Cubby are Third Culture Kids.  They will grow up taking aspects of their parents’ cultures, and those of the countries they will live in, and fuse them into their own unique understanding of the world.  Even in their country of birth, or their parents’ home countries, they are outsiders to the culture.  They need never know that there is a stigma attached to something as simple as transportation to their place of learning.

That isn’t good enough though.  We need to teach our children the value and beauty of difference.  We stop the stigma.  Spectrummy Daddy was in a conversation a couple of weeks ago with somebody who referenced a third party as “riding the short bus.”  I’m proud to say he stopped her, and let her know that his daughter rides the short bus every day.  If you don’t mean our kid, you mean one of her friends.  It isn’t okay.  I don’t think that person will use that phrase again without thinking of the hurt they unwittingly cause.

Is one person at a time good enough?  Sometimes it has to be.  Sometimes it is all we can do.  Sometimes though, ideas can take hold and make sweeping changes.  When I was growing up in England, the words “spaz” and “spastic” were commonly used as insults.  The politically correct era of the 90s saw that those words were revealed as damaging and harmful.  Altering our conception of those we were talking about.  I’m sure that somewhere you will still find people using those terms as insults, but by and large they have disappeared from the lexicon.  Change can happen.  In the US media, these terms, along with “retard” are still used.  Even in shows which purport to value diversity, main characters still use these words as insults.  So we start one at a time saying it is not okay, and one day it will stop.

At their tender age Pudding and her friends know nothing of such stigma, and ride their bus to school blissfully unaware of future insults.  Even without the stigma, I didn’t always find it so easy to put her on the school bus.  Her first day of school, she was so excited to ride the bus.  She was wearing her ‘school dress‘ and had her backpack on.  She was ready.  But I wasn’t.  That was the first time she had ever left me.  As she blew me a kiss, she placed her hand on the window out towards me.  That hand in all her three years had never looked so tiny.

So yeah, my baby rides the short bus and I’m okay with it…most of the time.

Written by Spectrummy Mummy

July 21, 2010 at 10:07 am

Money, Money, Money.

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A new study shows that their is a greater prevalence of autism spectrum disorders amongst the children of the higher socioeconomic groups in the US. This isn’t the first time this connection has been made, and many commentators made the conclusion that the richer you are (at least in the US) the greater access to medical professionals who could make the diagnosis. The difference with this study, however, is that the findings were the same even amongst those undiagnosed. Essentially, autism is a rich person’s syndrome. My initial reaction was a snort of derision. Rich? I wish!

Then I thought about it more carefully. From even before our daughter was born, we have managed to live on one salary. When we first married I was unable to work due to my immigration status, and we got used to living on one income. When Pudding was born, I was able to choose to stay at home with her full-time. That is a choice many families can’t afford, and one I’m very grateful for.

Our fortunes changed with Pudding’s diagnosis. We are a Foreign Service family. Pudding and Cubby were born in a tiny European country. Weeks before we were supposed to move to Bolivia, we noticed differences with Pudding’s behaviour.  Differences that were eventually given the title of Asperger’s Syndrome. It wasn’t that she suddenly developed these changes, just that we recognized them for what they were. No Bolivia. Suddenly we were back living in the states and paying a mortgage and the high cost of rent of the DC metro area. We could just about manage though, and this time we had to. Two kids means two lots of day care. The only preschool in the vicinity that would provide appropriate care for her needs required full time attendance, at a significant cost.

Along with the diagnosis come recommended treatments. We were soon referred to therapists who combined RDI and Floortime therapies. The cost for the initial consultation? $2200. The price of the full evaluation to determine her specific needs? $8500. No, we didn’t have it. Nor the hundreds of dollars each month to continue the therapy. Insurance doesn’t cover these services. They do however pay for speech therapy and occupational therapy for developmentally delayed children. It has taken us a year to find pediatric occupational therapy covered by our insurance, and we’re still looking for speech therapists with availability. For as long as we could, we did both “out of network” which is medical insurance-speak for out of pocket. The going rate for these services in our area is $125 per 45 minute session. Yes, you have to be rich to afford these therapies.

So, what if you aren’t rich? In the US, each state will provide early intervention services for children up to 3 years of age at low cost, sometimes for free. When your child turns 3 years of age, they are entitled to a free and appropriate public education. The quality of this can vary a great deal depending on where you live. We chose to rent a home in the school district with the best reputation for autism services. Even so, Pudding was misplaced in a general special education setting with teachers with no formal training in autism spectrum disorders. We watched for a few months as she became more anxious and withdrawn, losing valuable skills. Finally she was moved to a preschool autism class where she is thriving. Many school districts don’t offer these kind of services, though. We are fortunate to have that choice. Choice seems to be the privilege of those who can afford it.

We watch Cubby closely for emerging signs of autism. We struggle to provide adequately for one child’s needs, but doing this twice over seems unthinkable. I read all I can about RDI and Floortime therapies and do my best to implement them at home, and hope, and hope.

We have one more choice. Something that day by day is getting to be less of a choice, and more of a necessity. We bid in the next few weeks, and hope to go back overseas.  Autism is a rich person’s syndrome in the US, and we can’t afford it anymore.  Hopefully we can go somewhere else where we can.  My heart goes out to all those whose financial situation leaves them with no choices.  Giving your children what they need for the best chance in life shouldn’t be the privilege of the rich.  A world where our children have the therapies to live happy and healthy, productive lives?  It’s a rich man’s world.

Written by Spectrummy Mummy

July 20, 2010 at 4:35 pm


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Pudding at the park in her dress. Definitely not a romper.

Pudding is a fashionista.  What makes me so sure?  Well, for starters, if you ask her what she is, she’ll undoubtedly reply, “I’m a fashionista.”

There is also the fact that she is incredibly picky about what she wears.  These days, she will only wear dresses.  The only attire for any occasion, big or small, is a dress.  It isn’t a sensory thing.  Her choices vary from scratchy materials, to soft and velvety, form-fitting and loose and flowing.  It isn’t a colour thing.  She usually likes pink, but there is a pink dress hanging in her wardrobe that she is yet to wear, despite pink being her favourite colour.  It isn’t a heat thing.  While we are currently baking in the hot humid swampland that is the DC-metro area, she carries the dress thing on right through the seasons.  Fortunately, she can be persuaded to wear tights and leggings in the winter.

So yes, the kid likes dresses.  We are told to not let her fixate and obsess too much though, and try and mix things up with her a little so she doesn’t become too reliant on routines and upset when things don’t go her way (ha!).

This morning we were planning a trip to her favourite playground, wonderful place named Clemyjontri park that has been designed so that all kids of all abilities can play together.  Partly by design, and partly because I’m lazy, she was down to just the one dress hanging in the wardrobe- the aforementioned pink one that she won’t wear.  I gave it to her- cue tantrum.  I left to resume getting ready and so that she could work out her next move.  Spectrummy Daddy decided to help by putting the pink dress on her- cue bigger tantrum.  I convinced him that leaving her to solve the problem would be more beneficial.  Moments later she entered our room carrying the dress she had worn yesterday.  My rebuttal that she couldn’t wear dirty clothes to go out was met with bitter snarling eventual acceptance.  No, she would not wear a skirt, no she would not wear shorts.  No to every garment she encountered.  Until she came across a flower romper Spectrummy Daddy bought when we had a garment emergency (because fashionistas have those) due to carsickness.  I held my breath as she got dressed.  Maybe we would get out of the house today.  Spectrummy Daddy was overjoyed- exclaiming, “Pudding’s got a romper on!”  before my don’t-say-a-word look could register.  Immediately and most articulately she replied, “That’s. A. Dress.”

So once again the fashionista got to wear a dress, and you’d better not say otherwise.

That is all I have to write for now.  Tomorrow is a school day, which means I have laundry to do!

Written by Spectrummy Mummy

July 19, 2010 at 12:17 am