Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for August 2011

Wordless Wednesday 31 Aug 11

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Happy Wordless Wednesday everyone!

Written by Spectrummy Mummy

August 31, 2011 at 3:10 am

Backbone

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I might have done it at any point during the last week.  It might have been as Pudding climbed up my body and held on tight as she refused to go to school.  It might have been any day I had to scoop up Cubby to take him home from Pudding’s school, because he wanted to stay there.  It might have been bending down to put on shoes, or picking up discarded toys.  It might have been pushing Pudding on her indoor swing to get the vestibular input that she needs.  But I think I hurt my back on Tuesday.

On Tuesday I’d gone with my another mother to a playgroup with her kids.  She thought Cubby might enjoy it too, and she was right.  The class was run by an occupational therapist, designed to get toddlers involved with sensory-motor play.  Pudding is only in school in the morning, and I wasn’t sure how she’d do in the class, but we went along away.

Almost immediately, Pudding was overloaded.  It was busy and over-stimulating.  The room was filled with toddlers and their mothers, and all over the walls and hanging from the ceilings were props from that week’s theme: nursery rhymes.  Pudding ran around to touch everything, which was the whole idea, but Pudding doesn’t know her own strength, and I had to leave Cubby as I trailed around making sure she didn’t break anything.  It was time to sit down for the class, and Pudding didn’t want to sit.

The music began.  It was loud.  Too loud for both my kids.  Too loud for me these days, feeling every sensory assault for them, even if my senses are perfectly in sync.  Cubby spied some toys outdoors and began hammering on the patio doors to get out.  I was still holding Pudding down, and unable to bring him back to the circle.  Eventually I made myself heard over the music, and by some miracle he returned.  There were songs and dances, and soon Cubby was participating, so we stayed.  Pudding quieted down and remained on the mat beside me.  Then it was finally time for outdoor play.

All the kids stampeded outside, but for one: Pudding.  She was curled up in the child’s pose, her arms wrapped around her head.  The din was too much for her.  I stroked her hair, and asked her to come outside.  She didn’t hear me.  She’d protected herself by withdrawing.  I pulled her into my lap and she closed her eyes, her senses too confused to adequately protect herself from the onslaught.

I needed to get her away from the noise.  I picked up all 50 pounds of my incredibly tall 4 year-old, and carried her outdoors.  Instantly she was better, but I paid the price as I pulled the muscles in my back.  It still hurts if I bend down, twist my spine, or lift something up.  I don’t know about you, but I’m always bending down, twisting, or lifting something, or someone up.

If you are a caregiver, the chances are that at some point, you will hurt your back.  Perhaps your loved one has a physical disability, and you help to move them from the wheelchair to another chair or bed.  Maybe you are a carer for someone like my girl, who has balance problems, and seeks support by hanging around your neck, throwing your center of gravity off.  It could be that you are at times hugging or carrying your child as though they are still a baby, only they weigh several times what they did as an infant.

In the last few months, life has been hectic.  I’ve slipped with the one thing I shouldn’t: taking care of myself.  I didn’t bring any workout videos with me in the air baggage.  I intend to join a gym as soon as the kids are both settled in school, but we’re not there yet.  It will absolutely become a priority now.  The kids are depending on me, perhaps a little more than most children depend on their mother.

At least this was only a minor injury, and I’m sure to recover very soon.  I’m glad for the reminder to take care of myself, keep myself healthy, both emotionally and physically.  I’m the backbone, the support for the family, and I intend to be that for as long as I have to.  I need to be strong.

Written by Spectrummy Mummy

August 28, 2011 at 2:32 pm

Honeymoon

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Though it pains me to write it, the honeymoon is over.

Yesterday Pudding had her first day of evaluation at an early intervention/ school for children with autism.  To say she didn’t want to go is putting it mildly.  Her big eyes filled up with tears as she begged to stay at home with me.  It was hard to ignore, particularly as I’ve seen such growth in her by staying home with me.  Like a new bride, I was focusing only on the good, and turning a blind eye to anything that interfered with what I wanted to see.  I’d been awake since 4 am, dreading the end of our sheltered time away from the outside world.

When it came time to drop her off, she was clinging to me, alternately screaming and pleading to go home with me.  I felt a weight in my chest as I struggled not to cry myself.  In the short term, the easiest thing would have been to carry her out of there like I was Richard Gere in “An Officer and a Gentleman.”  But life is not like Hollywood, and a child with autism needs therapies.  I can’t give her everything she needs, though I wish every day that I could.  Nope, this isn’t the movies, although Pudding would have looked very cute in the sailor hat.

I collected her, and she rushed to get her backpack and then led me away impatiently as I tried to get a feel from the therapists about how her day had gone.  At home, she was a bundle of anxiety and hyperactivity.  We saw a return of old behaviours that I felt were left behind- mouthing inedible objects, picking at her skin, and climbing on the furniture.  Although I caught her in the act with the latter, right before dinner time she climbed again, and a nasty fall left a gash and bump on her forehead.

Once upon a time Pudding was quite oblivious to pain, and she still recovers well from little bumps and scratches, but this one was bad.  She was crying in pain, her little heart was racing and everything was just too much.  I cleaned her up and dressed the wound.  After a few cuddles, she was ready to venture downstairs for dinner (with the understanding that there would be a cupcake for dessert).

No sooner had we made it downstairs, than she started screaming and ran upstairs.  When she finally managed to speak, we learned that her distress was brought about by the arrival of a new vacuum cleaner for the house.  I was incredulous.  We’ve dealt with her fear of hoovers.  I’ve been able to vaccuum with her in the same room for a long time.  This was still new in the packaging- it had never been switched on.  We were hurtling down a backwards slope.

I hid the offending item, and after much reassurance that it was gone from the house and would never be used in her presence, she eventually came back downstairs and we got through dinner.  I’d felt sick all day, physically upset at the change in Pudding.  My sunny little girl once again plagued by anxiety.  I didn’t want to go back to real life, but it was already over.  There is more work to be done, and the gown and veil would just get in the way.

Then this morning she woke up….fine.  After a brief attempt to let me know she wasn’t going to school today, she nonetheless got ready, and helped pack her lunch bag.  She said nothing on the journey there, but when we arrived she went straight to her cubbyhole, left her backpack, and went to join her class.  No fuss, no drama, no tears.  There was even the tiniest smile as she began her day.

The honeymoon might be over, but that doesn’t mean there can’t be a happy marriage, even with ups and downs.  We’ll enjoy the good, and support one another through the bad, and when this tour is over, we’ll be stronger and closer than ever.  You never know, sooner or later we might even get a second honeymoon.

Written by Spectrummy Mummy

August 25, 2011 at 4:11 am

Wordless Wednesday 24 Aug 11

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Two incredibly tall creatures size each other up.

All that early intervention paid off, and Cubby touches the giraffe!

Aah, spoke too soon!

Written by Spectrummy Mummy

August 24, 2011 at 2:20 am

Destination

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Pudding gripped the GPS in her hands as one would a steering wheel.  As she drove around the room, she tilted it this way and that, turning corners.  Finally she parked on the chair beside me and said,

“You have reached your destination.”

This entire imaginative play scenario was devised by Pudding without any assistance.  Inventing, using her imagination, making toys out of ordinary objects has increased leaps and bounds since we arrived here.  With most of her toys and playthings on a ship heading this way, Pudding has had to find new ways to entertain herself, and she has stepped up to that challenge in an amazing way.
Naturally, I had been concerned about what would happen to Pudding and Cubby’s development when we moved.  With their environment completely altered, with their routines destroyed, with no school, no therapies, I feared their development would stall- or worse- go into reverse.

But from her why questions, to playing with her brother, to imaginative play, Pudding is going from strength to strength.  And Cubby?  Cubby is just happy.  I never thought of him as being unhappy until I witnessed the change in him since we arrived.  He is bolder, more chatty, and excited.  He is interacting more with both children and adults.  We signed him up for a football class (or soccerball as he would have it) and though he was by far the youngest child there, he surprised the coach and the other parents with his ability to follow directions and cooperate in a team.

Spectrummy Daddy is enjoying getting back to what he does best, and is happy to trade in the hours of commuting by bus and metro for a short walk home.

And me.  We hired the housekeeper who worked for the family who lived in our house previously, and she now bears the brunt of the housework.  I’m free to actually enjoy my kids.  Currently without school or therapies to get to, we are just  enjoying our time together without having to be somewhere else.  I feel lighter and happier.  I’m even making plans to join the gym once the kids are at school in the mornings.

Everyone has noticed the change in me.  I feel that for the last couple of years our family was stuck in an endless traffic jam.  We’ve taken a detour on the “road less traveled” and we are finally able to get our foot down on the accelerator.  I’m warned that this is the honeymoon period, but my actual honeymoon only lasted 5 days, and here we are after 3 weeks, every day I feel happier and more settled here.

We haven’t yet reached our destination.  But for the first time in a long time, I feel like we’re really getting somewhere.  I can feel the sun on my face, and the breeze in my hair, and I’m enjoying the ride.  We all are.

Written by Spectrummy Mummy

August 22, 2011 at 12:01 am

The Fix (at Hopeful Parents)

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This post was originally published at Hopeful Parents.  You can find it by clicking here.

On August 16th 2011, Pudding asked me a why question. She was wearing a Hello Kitty top, blue leggings, and Disney Princess socks. I was drinking tea, attempting to warm up after a cool day in Johannesburg proved it really is winter here after all.

As she bounced into the room and her fingers explored every surface, they found the switch of the lamp. She flicked it on and off, as she has done every day since we arrived, but this time it didn’t turn on, and for the first time ever she asked me why.

Just like that. So naturally and spontaneously that a stranger observing might take it for granted. But not me. Every detail is forever etched into my memory. The pounding of my heart and the giddy, elated feeling.

I can’t tell you the day she first smiled, sat by herself, spoke her first word, stood alone, or even took her first steps. I have the memories, but they are pinned down to weeks, not days. Though I’ve been asked countless times on countless forms documenting her development, I give vague answers. 4 weeks, 5 months, 10 months, 12 months.

Those answers satisfy the professionals, looking to pinpoint when her development went awry.  But they don’t satisfy me.

I have replayed those milestones over and over for the last two years, but I can’t get more specific. The truth is that I didn’t accord them the attention they deserved. I was the stranger observing who took them for granted.

Moments after she asked and I even managed to answer her question, I shared this milestone on Facebook. A friend commented that this would herald an exciting new phase of development- the why question being a “gateway milestone”.

I had to applaud her choice of words. No longer the stranger taking milestones for granted, I am now a developmental junkie. I’m addicted to observing the miracle of development, not just in my own children, but in every child I encounter. I can’t get enough, even when I have to be patient with a small stash. I knew that it was a year ago (and four days) since I’d written that Pudding doesn’t ask why. I knew, because I’ve been waiting for this fix ever since.

When I first held Pudding and Cubby, I remember the sudden burst of love I felt for them. Already I was taking for granted so many things: their health, their strength, even their just begun lives. Never again, for either child. I take nothing for granted, appreciating just how fortunate we are.

Likewise with development. Whether milestones are hit strongly and surely (if a little tardily) in Cubby’s case, or later and sporadically as with Pudding, I marvel at them, and the high that they bring.

At times I think of that stranger who soberly observed the milestones in her children. She never knew the intoxicating feeling that rushes through this addict as I witness the many miraculous milestones of everyday life.

After a few hours of riding this high came the inevitable comedown. Was this just appropriate echolalia? And just how long will it be until I hear the next why? I tried to shake my way out of withdrawal by focusing on how huge that milestone was.

Then yesterday at 8.47 am still wearing her nightgown she brought something to me. It was my GPS that I’d removed from the car for my husband to look at. Driving around unfamiliar streets in a new country, I’d been unnerved as it kept dropping the signal, or turning itself off inexplicably.

“Mummy, why is it not working? Is it broken, Mummy?”

Not broken, it just works in it’s own way, on it’s own time. I’m just going to have to be patient about it. But you, my sweet, you are the fix.


Written by Spectrummy Mummy

August 19, 2011 at 1:30 am

Wordless Wednesday 17 Aug 11

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Pudding puts her pouring skills to good use!

Happy Wordless Wednesday!

Written by Spectrummy Mummy

August 17, 2011 at 7:34 am

Community

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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.

Written by Spectrummy Mummy

August 14, 2011 at 8:43 am

Safe Heaven

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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.

Written by Spectrummy Mummy

August 12, 2011 at 1:29 am

Wordless Wednesday 10 Aug 11

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Security

I was dreading living surrounded by all this security. Now I can’t tell you how grateful I am to have all these protective measures.

Peace of mind is beautiful.

Happy Wordless Wednesday everyone, and be safe wherever you are.

Written by Spectrummy Mummy

August 10, 2011 at 3:21 am