Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for July 2010

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.

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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

Fashionista

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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