Spectrummy Mummy

I haven’t written about what has been going on, but I’ve decided that all parts of the story need to be told.  This month has been hard.  I need to let my friends who call me a super-mum know that I’m really not feeling super.  I need to explain that although we love living here, it comes at a price.  But most of all, I just need to tell the truth about hard times, because I know many people are going through even longer, tougher, more challenging times.  It isn’t fair to them, or myself to pretend everything is fine.

So, this month has been hard.  Mostly it has been difficult because I’ve been unwell.  So as not to scare away my (three) male readers, I’ll refer to my health issues as some ongoing lady problems that have been getting progressively worse.  Ultimately, I’m now very anaemic, which is good in that it is treatable, but bad in that it makes me feel lousy.  I’m weak and tired.  My brain feels like mush, and can’t seem to retain any information, I’m forgetting appointments.  I have heart palpitations, and wake up with numb hands, arms and feet.  My immune system is struggling, so I’m catching every germ I come across, and each one is hitting me hard.

Some of my medications have nasty side-effects too, and one weekend my fingers swelled up and I had to have my wedding and engagement rings cut off.  But I am receiving treatments, including iron injections every two weeks so that I’ll be back to speed in weeks rather than months.  Though I can’t exercise at the moment, I’m doing my best to rest, eat an iron-rich diet, and take all the supplements to support the healing process.  It just takes time.

I’m spending much more time indoors than I have previously while living in South Africa.  Unfortunately, living in a house with bars on the windows inevitably feels a lot like living in a prison, this is made all the worse by the fact that recent events mean I don’t feel as safe in my home as I used to.  Earlier this month, there was an armed robbery on our compound.  By a huge stroke of luck, all the families who live here were out at the time.  Generally on a Saturday afternoon, either our children or our neighbours are playing where the incident happened.  Anyone who has a young child on the spectrum knows that in the face of danger, they are likely to behave unpredictably.  I’ve lost many hours of sleep thinking about what might have happened if we hadn’t gone out that day.  The security officers here are great, and have already made some changes to minimize the risk of this happening again, but I’m shaken that an electric fence, gate, and security guard were ultimately so easy to overcome.

It has been hard because I’m always far more homesick after my parents visit than I am before.  Homesickness and culture shock are wrapped tightly together.  The more you miss home, the more alien a place can seem.  I’m struggling to remind myself to enjoy all the wonderful people and places here, rather than wishing for September to get here for an R & R trip back to England.

Last week brought things to a head.  I forgot to take Pudding swimming one day, then Cubby to OT another.  Then Cubby was ill, followed by Pudding too.  Instead of wanting to rest in bed, my kids become more hyperactive when they’re sick.  Not only was I struggling to keep up with them, but I’d missed the very things that help them to regulate.  By Friday, I was just exhausted.  Not only was I feeling too weary to face the effort of getting Pudding into school, or schedule an appointment for a 24-hour EEG for a child who couldn’t handle a 30 minute one; but I was too drained to get through another ordinary day.

Far from the “super-mum” a friend called me in an email, I was feeling physically and emotionally at rock bottom, and taking my frustrations out on the very people who most need my love and support.  When Spectrummy Daddy got home from work, I took a bath, and let my tears fall into the water, until most of the tension left me.  After we’d got the kids to sleep, we talked about what measures we could take to make things easier.  But, once I’d finally let go of trying to keep everything together, I no longer felt like I was coming apart.

It isn’t the end of this hard month yet, but I’m starting to feel stronger.  Yesterday when the car broke down, I didn’t join it.  I was just grateful it happened with Spectrummy Daddy there, and in a safe place.  I’m using visual strategies to keep me on track of the things I need to do this week, and hopefully that will keep me from getting too overwhelmed.  After all, if it is good enough for Pudding, it is good enough for me too.

So now I’ve honoured the truth.  I’m not a super-mum.  Though I love living here, it does come at a cost.  I can go through hard times, and while they have absolutely nothing to do with autism, they can challenge my ability to parent.  I’m going to keep telling the whole story, even if I’m hoping that this particular chapter will come to an end soon.

I meant to write a post on Christmas Day, to wish you all happy holidays from our family to yours, but the only photo I have of us all together is this one, and I realized that it looks like we are in a very comfortable and festive jail.  Not really in the spirit of the season, but a fair representation of living here.  So in the style of not-so-great photo-journalism, here is our Christmas in pictures.

So, as you can see, Santa came.  Or Father Christmas as we call him in England and South Africa.  He enjoyed his whiskey and cookies, and I’d like to say Rudolph enjoyed the carrot, but that was actually Pudding who gnawed on it.  I had to stop her before she ate the whole thing, and shook my head at the strangeness of a child who chooses carrots over cookies, and a mother who stops her.

Pudding awoke at the usual 5am, but we made her wait an unbearable (for all of us) hour until her brother woke up to go downstairs.  Eventually her demands of “I want presents” became loud enough to rouse him.

One of the great things about raising third culture kids is that they are exposed to many different religions and cultures, and we embrace this fully, while honouring our own traditions.  One of the weird things is that you end up with photos of your kids opening Christmas presents while sitting cross-legged on a Muslim prayer rug.

And another great thing is that Christmas is an opportunity to support the local economy.  Pudding had her own very specific requirements that didn’t lend themselves well to sourcing locally-produced items.  We did, however, find this hand-crafted chair for her doll at a local market.  It broke moments after this photo was taken.  Kind of glad the rest of our stuff came from Melissa and Doug or Lego Duplo.

It isn’t difficult to find gifts bigger than the boy himself.  The way he has been eating this holiday season though, we’re expecting a growth spurt any day now.

I told you she was Santa’s little helper!  Once her own unwrapping was done with, Pudding assisted us too.

Love is not indulging your husband by surprising him with Chuck Taylor Converse All Stars with his special interest- Batman.  Love is being seen out in public with him wearing them.

And for most of the rest of the day, it was about play.  Here we are tricking Cubby into developing his fine motor skills.  Probably doesn’t hurt that he is learning about counting, shapes and numbers too- with us as parents he needs all the mathematical help he can get.

Pudding played by dressing up in the same outfit as newly-shorn Kelly doll and telling her a story.  Maybe I joined in likewise- you can’t tell because I’m on the other side of the camera, thanks to Santa bringing me a new lens to replace the one I broke back in the US.

And the rest of the day I pretty much spent making this: my most perfect turkey yet.  The kids ate about two mouthfuls, of course.

That was about it for our Christmas.  It was quiet, cosy and drama-free, and I know what a lucky autism mama I am to be able to say that.  Of course, I did take down the tree the next day- a return to our version of normality is a present to us all.

From my family to yours, I sincerely hope you had a wonderful time.  And if not, I’m sincerely glad they are over for another year.  Extra-special holiday love to you all.

Once Pudding’s birthday is over and done with, I give December over to Christmas.  We pulled out our not-so-authentic tree and boxes of ornaments, and realized that we must have inadvertently sent a box of decorations to storage.  We can’t find our stocking holders here, and probably some other things that I haven’t yet noticed.  We waited until Cubby went down for a nap, then got to work, knowing that otherwise we’d have two sets of hands thwarting our efforts.

Pudding adored getting into the boxes.  She delighted in unwrapping our ornaments, recognizing them from Christmases gone by.  It always make me wonder just how far back she can remember.  For those of us who aren’t blessed with such a sturdy memory these days, I could look on the bottom of my ornaments to see where on our travels I’d collected each one.  I didn’t need to write on my Red Sox ornament to remind me of my day Defying Gravity in Boston.  The following day, we headed out to the craft market so that South Africa would be represented on our tree of travels.

And of course, there is our other collection.  A steady record of our kids’ special interests through the years.  Pudding loves these.  It reminds me I need to find a Hello Kitty ornament to out on our tree this year.

Having a tree up is a challenge.  There has already been casualties, including the beheading of Santa on my favourite ornament bought one snowy December in Germany.  The kids can’t help but touch, and it takes all the patience we can muster not to chastise them for something that can’t be helped.  Unless, of course, we were to skip the ritual for a year.

I find that as I get further away from my traditional expectations of Christmas, I cling harder to the rituals that we are able to keep in place.  It is summer here in

Shortly before he was beheaded

South Africa, and it feels very different from every Christmas I’ve ever known.  I feel very far from home.  It is tempting to skip, to ignore the time of year when it just feels so wrong.

But that is the thing about rituals- they’re the thing that make us feel safe.  We need them.  This won’t be our home until we’ve spent a Christmas here.  I’ll be homesick until here feels like home.  It may not be the kind of Christmas I’d choose, but this is the Christmas we have, and we’ll make it our own.

Earlier today I was going through old paperwork, and I found some language tests the Pudding’s teacher had carried out over the previous year.  One test was the question: Who keeps you safe?  Pudding had answered incorrectly all three times she’d been tested, including the last time, in May shortly before we left, when she’d answered “home.”

A telling mistake, she’d confused “who” with “what” or perhaps “where.”  But even though she was incorrect, I know how right she is.  I can’t help but be glad that she associates safe with home.  And every ritual, every memory we carve from this house, from any house, will add to that feeling of security.  So we’ll have our first Christmas here, and I might have to sacrifice some of my ornaments in the process, but we’ll make new memories in the process.  Safely at home, where Christmas is supposed to be.

“Imagine no possessions

I wonder if you can

No need for greed or hunger

A brotherhood of man.”

Imagine, John Lennon 1971,  © Warner/Chappell Music, Inc., Sony/ATV Music Publishing LLC, EMI Music Publishing

Imagine is one of my favourite songs.  If I try hard, I can imagine no religion, and no countries, and yes- the world might just be as one.  But, dreamer that I may be, I still get stuck on no possessions.  Last week the rest of our possessions arrived from the US, and materialistic as it may be, it is good to be surrounded by familiar comforts.  Even though we donated or cleared out a lot of our belongings before we moved, there is still so much stuff.

Spectrummy Daddy is allotted a day (or two) to be at home to meet the packers and check that all our belongings our returned (no mean feat when dodging pirates and hijackers), which is awfully nice.  What you don’t realize though, is that it takes way more than a day to unpack, sort, and put away for an entire household.  So I’ve been going through the remainder of the boxes.  While I’m not finished yet, we’re getting there.

My husband is sentimental, and a collector, which is an awful combination for a nomadic lifestyle.  I’ve gone through box after box just incredulous at the kind of things he still keeps.  There is this whole other life- which makes no sense, because everybody knows his life only began when he met me!

But when you look at our possessions, it appears that the reverse is true.  There is hardly anything that belonged to me before we got married.  No photos, no correspondence, only one book compared to dozen after dozen of his- not even including the ones we put in storage.  If you were trying so see who I was before I was a diplowife, you’d struggle to find anything.

When I left England, I only took with me what I could carry, which amounted to one large, and one small suitcase.  Mostly filled with clothes, which no longer fit.  There is a whole lot of my present surrounding me, but nothing of my past.  My mother did bring me some photographs one time when she visited, but they were mostly of my brothers. and in her words, “it doesn’t matter because you all looked the same as babies.”  Thanks Mum!  But really, it doesn’t matter, because the things that are most important to me can’t be put inside a cardboard box and shipped around the world.  John Lennon had it right.

Perhaps because I don’t have too much to be sentimental about, I’m kind of ruthless with purging our house of unnecessary items.  I need to maintain a balance.  You see, if I get homesick, or nostalgic, I can turn to Facebook or Skype and reminisce.  But I’m not sure how this process works for Pudding, who struggles with making connections with others.  For her, those possessions might really be her world in a way that I can’t imagine.

When we first moved, including the time we were in temporary accommodation, Pudding held on tight to her two favourite toys: Abby Cadabby and Kelly doll.  If they went out of her sight, even for a moment, she would panic.  As she became more settled, she felt less of a need to carry them around- to our great relief, as there is no American Girl store here to replace Kelly doll.  Now that the rest of her toys are here, she has felt the need to play with every.single.one.  Perhaps play isn’t the right word…her belongings have been touched, worn, tasted, observed, sniffed, rubbed, sat on, rolled on or placed on top of her.  For a multi-sensory girl like ours, she needs to possess the things that are important to her.  It isn’t enough to see them, or remember them.  She has to experience everything about them, and that way they exist for her.

So now that everything is all around her, Pudding’s world is back in a way that makes sense to her.  I wonder if her playthings might be the very things that help her to connect with the world, and give her some grounding.  Unlike as is suggested in the song, I imagine that her possessions are the very things that give her peace.  In this house, we’re always open to giving peace a chance.

Community. It is a word I’ve used a lot in the last two years. I’ve written about the autism community. In spite of the divides and differences, it is a place I’ve considered my virtual home for the last year. But apart from an all too brief day in May to meet my friend Alysia, my community has been distinctly virtual. I’ve felt the loneliness of being the only family like ours, and loneliness might just be the opposite of community.

Loneliness is what compelled me to write my first blog post. It wasn’t that I didn’t have friends, it was that I struggled to communicate my experiences. Spectrummy apples don’t fall far from spectrummy trees. Many of my friends did read, and began to understand our version of autism. They became part of my community too, just as the other parents of children on the spectrum, and adults with autism who read and commented, and shared their stories were my community.

I didn’t feel lonely any more.

And then we moved. Not just a little move, but to another continent, far away from my community. I wasn’t just cut off from my friends and family, everyone I’d ever known, but no Internet connection meant I was absent from my virtual family too.

But not without community.

In the State Department, each officer and their family are assigned a sponsor to meet them at the airport, buy some essential groceries, and answer questions about life in the new post. Our sponsor also had a foreign-born spouse, and two children aged 2 and 4. They were kind enough to take us along with them to some of their favourite places. They also threw a party to welcome us to the rest of the consulate community on our first weekend.

We were welcomed. Several times I felt compelled to explain or apologize for Pudding’s behavior- after all, strangers and the intense social experience of a party was overwhelming, particularly for a child with Asperger’s who had just moved to a new country. But every time, I was told there was no need. We were all accepted there. And just like any community, the consulate is full of different kinds of people, our own particular brand of diversity just as acceptable as any other kind.

A few days after the party we went out to an elaborately family-friendly garden centre with some of the other consulate families. After spending the morning at a huge playground, we went for lunch at a restaurant where Pudding made her own pizza. The sensory experience was just what my little seeker was craving, and she was in heaven pressing out the dough, rolling it out, smearing the sauce, and sprinkling on the other ingredients.

Then the chef took it away to cook, and the trouble began. Pudding had been enjoying herself, and saw no reason why her creation was taken away. We carried her back to our table kicking and screaming. I held her thrashing body as Spectrummy Daddy helped ease her into the comfort of her weighted vest.

I began to explain to her that she would have the pizza to eat soon, but as always during a meltdown, I was unclear as to how much she heard, or understood. As I gestured over to the brick oven where we could see her pizza, I noticed a table of three women with a baby and toddler. Staring. Talking to each other and staring at us. We were the car crash from which they couldn’t avert their eyes.

I hate those eyes and the challenge they represent for Pudding, and for my parenting skills. I don’t discipline during a meltdown, and I know that is what is expected by those who don’t understand. Sometimes I’m understanding of their lack of understanding. After all, I was once blissfully ignorant too. But sometimes I don’t have that composure, and in the company of my new community, we were in the midst of our greatest challenge.

As Spectrummy Daddy explained to our new friends about a meltdown, and why Pudding needed to wear her weighted vest, I glared back at the table of witnesses. Though they quickly averted their eyes, they whispered to one another, and looked back. In anger I mentioned my frustration about the stares to the rest of the table.

One of the other mothers gently touched me on the arm, and told me to turn around to face the rest of the group. “You’re with us now, we don’t care what they think.”

Community. Instant and accepting community. I smiled, and did exactly as she suggested. Pudding calmed down a few minutes later, just in time to devour her creation. By the time I turned around again, the table was empty, no more eyes upon us. We went on to enjoy the kiddie rides. Though there were some emotional moments, I no longer felt tense about anybody’s judgement.

I’ve mused since then about how different it would be for families like us if we had a sponsor from the beginning. One who met us at diagnosis when we were so overwhelmed and disoriented that we we felt jet-lagged. Someone to pick up the therapeutic supports we needed and helped us to shop for services. Then held our hands for those first few days, weeks, and months as we navigated a whole new landscape. How different things would be.

We’re in this together. We may be diverse and divided as a community, but you need never feel lonely again. You’re with us now.

In our home we have a safe haven. A secure area we can retreat to in the event of danger. Before we arrived, somebody had tried to sort through our large collection of keys to label them, and so we found the keys for our “safe heaven.”

It made me smile, because in so many ways, where we live is like paradise. The weather is glorious, the people friendly, the country amazingly beautiful, but with all the conveniences we’re used to. I can’t believe how fortunate we are to call this place home for the next three years. It surely is heaven.

Apart from one thing: the crime. It is hard to match up this glorious land of sunshine and smiles with the frightening statistics. Car-jackings, personal invasions (armed robbery of private residences), smash and grabs, muggings are all alarmingly commonplace here. It is the rape capital of the world. Living in the Northern suburbs, our affluence is a stark contrast to the poverty of the townships. There are parts of this city I will never visit. Even here I will always be on alert.

I’ve never lived anywhere like this before, and I can’t believe how much I took for granted that feeling of peace of mind.

When friends asked how I liked South Africa when we first arrived, I responded that it was like England, but with better weather and worse crime.

Then England rioted.

Seemingly out of nowhere, first London, then other parts of England came under siege. I struggled to believe it, this is England. This is my safe haven, where I would always return with the children if things got too crazy elsewhere. Suddenly it seems safer here than over there.  Severe cuts to the police force left them instantly overwhelmed.

Of course, this looting and violence didn’t suddenly spring up. It seems that the motivations for the riots are different in different parts of the country. Just as there are multiple causes: a cocktail of political, racial, cultural, and economic reasons, so will the ultimate solution be difficult and complex. I don’t have any answers here.

Yet the reasons people are putting forward to explain this senseless shift to chaos are intriguing. A generation of children and young adults who are alienated from the rest of society, who are so disengaged that they feel no empathy for the pain and destruction they are causing to others. Young adults who feel their futures are so hopeless that they opt for instant gratification regardless of the consequences. Entire sections of community at odds with one another, and a pervasive mistrust of authority.

Alienated, disengaged, lacking empathy, hopeless- these are the words I’ve read recently to describe the people of my homeland. The neurotypicals of my homeland at that. It is interesting to me that the same words which are often used (incorrectly) to describe adults and children with autism are being applied to entire sections of community. I would love to understand what is happening in England, but the causes are mysterious and complicated.

I’m ashamed at the violence directed against innocents.  A teenager even tried to mug my friend as she walked with her baby in her neighbourhood in broad daylight.  I’m proud of the way others rallied together to clean up the mess.

The Prime Minister described society as “sick”, but he failed to offer a cure. We are invited to see the rioters as different to us.  And while I can’t imagine tearing up my homeland, neither can I imagine feeling alienated, hopeless and disengaged.

As the police regained control and the courts are dealing with the fall-out, we are learning that those involved in the riots appear to come from all sections of society: a number of students, a teaching assistant and an 11 year-old girl are among those facing charges. For a while, the rules were gone, chaos reigned, and the thrill of the mob was too appealing for many. England was in meltdown. If these people have taken part in destroying their communities, we have to ask ourselves why, even if the answers are mysterious and complicated. Even if a solution is hard to find.

It pains me to think of my home country being torn apart, to see places I’ve lived and visited being destroyed. Just as it pains me to think of the crime in this beautiful country where I now live. Just a few miles from the townships, I can close my gates, lock my doors, and enjoy a relatively safe heaven. But I can’t help but feel sad that I have experienced a different England and South Africa to many.

And that my haven will only feel safe under lock and key, away from the alienated, disengaged, and hopeless.  Peace of mind is increasingly a slice of heaven that few of us can experience, no matter where we live.

As you read this, I will be finishing packing, getting the kids ready, heading to the airport, taking our first flight, making our connection in the busiest airport in the world(!), or on our second 16-hour flight.  Or I’ll be a stranger in a strange land, figuring out what to do next.  At least for me, that is familiar territory.

When Pudding was first diagnosed, I struggled to learn a foreign language littered with phrases like “echolalia” and “proprioception.”  Eventually I became fluent in this new language, even making up my own translations for some of those tricky phrases.  This language would be how I communicated with Pudding’s educators, therapists, and doctors; but to communicate with my girl, I had to learn to speak her language, just as she struggles to learn mine.

During the last two years, I made connections with those who could help me navigate this strange land.  In particular a teacher and doctor whose care and attention extended beyond Pudding to our entire family.  They acted as my guides so I didn’t get too lost.  Eventually I found community resources, and made sense of insurance regulations and somehow managed to find a path to follow.  It wasn’t always the easiest journey, but I could stumble my way along.

I would be lying if I said I’m not intimidated by starting all over again.  Making new connections, and finding trusted professionals who have my family’s best interests at heart.

At least once I began blogging, I found that there were so many of us, we could find our way together.  By reaching out to one another, we make new connections, form a community that doesn’t have geographical boundaries.  I have friends walking the same path, holding my arm if I should happen to stumble.  I’m grateful beyond measure for the friendship and support I’ve found through this blog.

Connections matter.  A few weeks ago a friend from university announced he was going to be the manager of a new independent cinema in England.  I immediately though about how great it would be if they could do the sensory showings that we enjoy here in the US, and suggested to him that they do just that.  He said he’d get back to me, and earlier this week he wrote back saying that when they open later this year, the cinema will be offering sensory showings every three weeks.

If that can be done in the UK, why not South Africa?  Why not everywhere?  We just need to keep making those connections.

I want to thank you for reading, commenting and sharing this blog over the last year.  It has been an incredible journey, that in many ways is only just beginning.  Time for me to go and make my connections.  Time for more adventures abroad!

…

If you would be so kind, I would love it if you could visit here and vote for Spectrummy Mummy as one of the top autism blogs.  Many thanks!

I don’t know how many times in the last couple of years I’ve watched my husband leave for work with a twinge of envy.

Don’t get me wrong, it is my choice to stay at home with the kids, and I’m grateful to be able to make that choice, but some days that choice feels like more of a necessity.  Engaging and playing with children is hard work when it doesn’t come naturally to them.  When conversation is a rare treat, I miss office banter.  And of course, this job goes unpaid and without leave.  It is only natural I’d be envious at times.  Some days I’d just like to do something different, use my brain and step outside of these walls.

Today and tomorrow, I get to do just that.

I have a mandatory seminar for two days about security overseas.  I am looking forward to moving and our new life in Johannesburg, but it would be foolish to deny the real safety concerns about living there.  It is considered a critical post for crime, something I hadn’t given too much thought about until I had to do my homework for the seminar.  Reading about all the potential threats, I’m nervous.  Of course, when I mentioned this to Spectrummy Daddy, he wisely pointed out that the only way to assuage my worry was to go to the seminar and learns strategies for maintaining our security.

So I should be thrilled that I get to go tomorrow.  But I’m not.  Partly because I just plain old have too much to do.  We move out at the end of this week, and mini-crisis after mini-crisis means I’m way behind in what needs to be done.  I’ll have to miss the only appointment we could get with Pudding’s psychiatrist before we leave.

Then there is the other side of it.

I don’t know what to wear.  I’m so out of step with doing anything buy my current role as a spectrummy mummy, I find it weird to do anything else; even if it is just for two days, even if all I need to do is show up and sit there.  I’m going to find it hard to keep my mind from being here instead of there, particularly when it seems to be crammed so full at the moment.

I know I should just enjoy the break, but this isn’t a time when I would have asked for a break.  This is a time when I feel strongly that I need to be on hand, every day, every hour, every minute.  Pudding’s separation anxiety is at an all-time high, and she is thrown by this new upset.  Just two days to us, is more uncertainty and anxiety for her, at a time when she just doesn’t need more.  When none of us need any more.

Still, Spectrummy Daddy will be here to take over, and I know they’ll be in safe hands.  I’m not so vain as to think the whole world will turn upside-down if I’m not the one taking charge for a couple of days.  Maybe it will be good for all of us to change things up a little, and experience things a little differently.

And what stay-at-home parent doesn’t want to show their other half just what is involved with staying at home?  And how many working parents have wanted to demonstrate the challenge of having to be apart when your family needs you at home?  We’ll get to learn something about how our family would operate if things changed for us.

I wonder how many times over the last couple of years Spectrummy Daddy has left for work with a twinge of envy at not being able to stay home.  Maybe two days are what we both need to learn if the grass is just as green as it appears on the other side.

For most people, life goes on.  The years are punctuated with transitions, but for the most part time seems linear.  Day by day, month by month, then year by year, time passes.  Not so for us.  Developmental disorders play tricks with time.  Some things are s-l-o-w-e-d right down, for better or for worse.  There is truly something magical about witnessing childhood in slow-motion.  Every breakthrough is a special gift.  And just when you think you start to understand, you’ll find yourself living through something that you thought was left behind.  Then suddenly your kid is catapulted through progress, and a new phase of development begins.

Cubby is the exact age that Pudding was when we noticed her language difficulties.  So many of the things that we noticed in Pudding at this time are emerging in him.  It becomes impossible to tell which things are sensory processing challenges, which are behaviors imitating his sister, and what might be autism.  Time will tell, but time moves slowly haunted by these ghosts.

Foreign Service life plays tricks with time too.  The line of time becomes a series of connected cycles.  Move, adjust, live, prepare, move.  Somewhere between prepare and move, the whole process takes you back to the beginning.  Right now I’m living through an almost constant feeling of déjà vu: the same events, places, people, and emotions from two years ago.  I say that I don’t know if I’m coming or going, but they cycle moves on even if I feel trapped in time.

Cubby’s IEP meeting took place in the same place as Pudding’s first one.  The same school and the same room.  I sat at the same table.  So I wasn’t present for that meeting.  My mind was somewhere two years previously.  Afterwards I’m finding it hard to forgive myself for not pushing harder for more services for him.  Of course, we are moving, so Cubby won’t go to school there.  Things will be different for him, but when I flashed back, it felt eerily familiar.  Defeated and voiceless.

…

On Thursday we drove by the apartments I talked about here.  I still remember sitting on the couch next to Pudding, trying to see if she would look at me when I called her name.  Like time paused back then, the details are so vivid…the fabric of the sofa, the taste of salty tears, the too-bright orange of goldfish crackers that she could eat back then.  I’m bracing myself for our return; we’ll stay there for a week before we leave for South Africa.  I snapped out of my reverie to tell the kids that we would be going there soon.  Prepare.

Pudding looked out of the window as we passed by.  “It’s got a swimming pool.”

I can’t speak.  Does she remember?  It was two years ago, she was only 2 1/2 years old…how can she remember?

“And a playground.”

She remembers.

…

I wonder what else she remembers.  At the time she didn’t seem to pay attention to our distress.  I thought she didn’t notice when I cried, and I cried there a lot.  I know better now.  I know she is always taking everything in.  Maybe she can’t respond appropriately, maybe she doesn’t have the language to tell us, but she remembers.

If I think I’m having flashbacks, I don’t know what it must feel like to her.  We may be going through a cycle, but that doesn’t mean we can’t change it.  Record some good memories over the painful ones.  So in these last few weeks, I’m winding down the therapies, easing back on commitments.  Making the time about them.  Celebrating time, instead of fearing it.  So when these flashbacks return, as they will in another cycle, we’ll welcome them.

Before we know it, we’ll be flashing forward to something new.

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Where do I begin on paperwork?

I’ll start with last night, when we got a thick envelope in the mail containing Pudding’s occupational therapy notes from last year.  I was a little baffled, until I read the enclosed note saying that our insurance hasn’t paid them for services since last July, and if the account isn’t settled in the next month, we are responsible.  Can I mention at this point how I made Pudding leave her beloved first OT who was trained in Floortime, and had an awesome connection with our girl, to go to this one just because it was an “in-network” provider and we’d be able to avoid insurance hassles.  And even though I have to make a 42 mile round trip, and even though my girl’s progress has slowed markedly, we kept going.  For a year.  That we might have to pay for in full.

So now, weeks before moving, I had to sort through all the insurance paperwork to sort out what is going on with them, and hope we can resolve it quickly.  Because the last thing we need to do right now is pay for a year’s worth of therapy.

Or shall I talk about the ongoing saga of the paperwork of a Foreign Service child with four diagnoses?  How every time we apply to a new school, or doctor, or therapist, we have to fill out form after form requiring the same information?  How we have to apply to many schools, because the American or International Schools can’t decide if they will take her until they’ve seen the paperwork.  The school’s paperwork, not the thorough expert evaluations we’ve had done in preparation, and offer to digitally send.  No, that would be too easy.  Paperwork with question after question about what is wrong with her, and never the space for me to talk about all that is right.  So she gets turned down on the basis of paperwork that doesn’t have a hope of describing all she can offer.

Perhaps I’ll talk about my other child.  My grey-area kid who has shown some, but not all, signs of autism since I learned what to look for almost two years ago.  Who has been in a sibling study since the age of ten months that measures every aspect of development, then presents me with a report every few months.  And then evaluated for his OT and PT services through Early Intervention.  How we’re still unsure, so we took him to a Developmental Pediatrician to take a look at him.  And now he has entered the public school system.  We have masses of paperwork on the boy, but we still aren’t certain what is going on with him.  It will take time and more paperwork to figure him out, I guess.

I think I’ll just leave you with the thought that we have all this paperwork and we can’t keep it together.  Our girl gets into our filing cabinet, and drawers and folders, and it gets drawn on, or cut, or ripped.  The chance of it getting lost during moves pales into comparison with it getting destroyed on any given day at home.  The most important things, the IEPs, the reports and evaluations, get digitally scanned so we always have an electronic copy, just in case.  When we move we’ll have it with us, so we can just print it out again if necessary.

Just when we think we might have found a solution to our vulnerable paperwork, Pudding expresses an interest in computers, and I realize how simple it would be for it to all disappear.  If only I could make all the paperwork disappear for good, I’m tempted.  But then thinking about all we’d have to go through to get replacements…..you know it would take even more form-filling.