Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for the ‘special needs parenting’ Category

Juggling

with 7 comments

…I’m humbled by your ability to juggle…

…you’re obviously skilled at finding balance in your life…

…am in awe of your ability to handle so much at once…

These were comments on a recent post.  You know- the one with Hillary Clinton.  Yes, I’ll keep name-dropping, because it is now years since Hugh Grant smiled at me, and I need to bump up the star quality of this blog.

The last couple of weeks have indeed been just like a circus.  But I can’t juggle.  When I try to walk the tightrope, it becomes clear there is no balance.  You might think otherwise, because you don’t know what happened last week.  So I’ll tell you…

Last Saturday, there were two very important meetings that both Spectrummy Daddy and I had to attend.  There was nobody to take care of the kids, so I took them into work with me.  I’ve done this before, and the kds are usually happy there.  I have a TV and DVD player in my office for some reason, so that and playing with office supplies is generally enough to keep them occupied.

We bought some ready meals from the supermarket that we could heat at work for lunch.  The kids food was allergy-safe. but mine contained cashew nuts.  And because I had so many balls in the air, and my eyes were on those, I didn’t see until too late that Pudding had reached across to my food, scooped a tiny bit of sauce and stuck the finger in her mouth.

It was the first time she’d ever actually consumed cashew nuts.  Her allergy readings are from RAST tests.  Her face started to go red, and Spectrummy Daddy ran to get the epi-pen.  By the time he got back her eyes were swelling closed, and she’d got hives all over her face.

Her breathing was still normal though, and her lips and tongue didn’t seem swollen.  I held off on using the epi-pen, but her reaction was fast and serious, so I grabbed her and drove straight to the hospital.

It would be an entirely different post to write about how awful the hospital experience was for an already overloaded child who hadn’t been prepared to go there.  I was terrified, and I lost my mind.  When asked who her doctor was, I gave them the name of the pediatrician she had in Luxembourg when she was first born.  The one who told me that she “loves herself like a kitten” when I tried to question some of Pudding’s puzzling behavior.

The nurse asked if she had any other conditions.  I knew they were unlikely to have heard of Asperger’s, so I went straight to Autism.  And no, she hadn’t heard of that either.  Or ADHD.  At this point the doctor from the Consulate called and asked if I needed him to come.  Yes, I did.

They quickly administered an anti-histamine injection and oral steroids.  Her vitals were all normal, she never developed anaphylaxis…this time.  She responded immediately to the medication, and I took a photo to reassure Spectrummy Daddy, only I was shaking so hard I couldn’t manage to actually send it to him.

Image

In fact, 30 minutes later, we were free to go.  I was still shaking, but relieved.  As we drove back I remembered that I’d missed the meeting, and I’d left Cubby with Spectrummy Daddy.

It wasn’t so much that I felt the balls dropping, as I looked down and realized they were already on the floor.

I’ve had a whole week now, before writing this.  Time for things to return to our version of normal.  Time to let the guilt ease away, and learn the lessons I need to instead.  Like always keeping her environment allergy-free.  Like if the circus comes to town again, I’d better fly in some carnies to help out.  And by carnies, I mean grandparents (in the nicest possible way)!

Perhaps some mothers can manage this juggling thing better than I can.  But in that hospital last week, I knew I was holding on to the most important thing, and I wasn’t going to let her go.  Let the other balls fall as they will.

Advertisements

Written by Spectrummy Mummy

August 11, 2012 at 6:16 pm

Working Mother

with 3 comments

I went to work today, for the first time in seven years.  I’m now a working mother, or a mother working outside of the home for the first time.  I ate lunch today with my colleagues, and only when somebody asked for a napkin did I realize that I’d taken a pile of them, to deal with the inevitable spills that I invariably deal with.  But not any more, during the weekdays at least.

And when I went to the bathroom, I did so much enjoy going alone, yet I still forgot I could use the hand dryer with no Pudding and Cubby around.

But those were the only times I noticed a big change.  I’ve arranged my hours so that I collect the children at 3.  Aside from the fact that I’m wearing make-up and nicer clothes,the kids haven’t noticed a change in routine.  As transitions go, this has been effortless.  I told you I was prepared.

In fact, working as a mother feels so far like, well, working.  It helps that I’m only working 32 hours a week, and it helps that my supervisor is family-friendly.  It helps that I’ve already put trust in other people to take care of my kids.  But I don’t feel at war, with other mothers or with myself.  In fact, my views on the “Having It All” debate are largely unchanged.

I didn’t work for the early years of child-raising because I had the privilege of staying at home.  Yes, we made sacrifices.  We couldn’t afford to visit my family for three years, and things were tight, but having a parent stay at home was an option for us, at least in the short-term.  We were fortunate to have that privilege, I have never felt like I made a sacrifice.

And now, we’re fortunate enough to be in a position when I can return to work, and it can be my choice.  That choice is a privilege many women will never know.  I don’t feel like I’m making a sacrifice.  Maybe because I’ve seen both points of view, I didn’t feel like making a choice between family and work was the right focus…but having the ability to choose really is.

I want my daughter to have these same choices that most of us take for granted.  I don’t know how Pudding will progress.  Autism is a lifelong disability, or difference, or disorder.  Call it what you will, it makes it hard to predict the future.  I can’t say if Pudding will be able to work, or if she will have a family.  Maybe she’ll want both, or neither, or just one.  I only know that we will do everything we can to make sure she has those options, just like the choice was always there for me.  And making that choice available?  That is the real privilege for this working mother.

Written by Spectrummy Mummy

July 16, 2012 at 7:51 pm

Adventures with Hello Kitty

with 10 comments

When you are first freaking out about autism, and reading lots of books that freak you out even further, you learn that special interests are very obscure.  Your child will be set up for a world of mockery and ridicule because they have opted to become the world’s expert on stick insects or timothy grass.  You waste some of your worry hours on the fact that you hate insects and are allergic to timothy grass, but Pudding has saved me from this ordeal.  She saved me from a lot of ordeals, actually, by being the exact same child she was before her diagnosis.

Still, Pudding has the most typical special interests of any autist I’ve ever heard of.  For the last 18 months of her life, we’ve been living with Hello Kitty.  Nothing unusual about that for a five-year-old girl.  And lucky for us as a foreign service family, she has opted for a special interest that is about as global as it gets.  Don’t get me wrong, I’m not above begging for someone in Taiwan to send me something through the pouch, but it really is unnecessary.  I can’t think of anything she’d want that she couldn’t get here.  Well, apart from perhaps the Hello Kitty airline, or wine (because who doesn’t want their 5 year-old to be an alcoholic?).

A friend emailed me a couple of weeks ago with some game-changing information: a Hello Kitty store had opened at one of the malls in Johannesburg.  An entire shop.  Of Hello Kitty.  Oh my.

Image

Lady, if you go around wearing a Hello Kitty apron, you’re just asking for it!

We didn’t really need a store.  You see Pudding has Hello Kitty stuffed animals (including one that repeats everything she says!), board games and plastic toys.  She has t-shirts, sweaters, leggings, nightgowns, swimsuits, lunch boxes, flasks, a variety of bags, hair accessories, and hats.  I’m sure there is more that has slipped my mind.

Image

While she is wearing Hello Kitty and playing with Hello Kitty, she can watch her Hello Kitty DVD.  As far as special interests go, we’re lucky that she picked a brand that is truly global.  Imagine the trauma of moving your child away from her special interest every tour?

When we go to our local mall (which Pudding loves, but isn’t the one with the new store) we have a few points where we “check-in” with Hello Kitty.  There is the store that sells Hello Kitty jewelry that we look at, and another that sells bags and accessories.  There is the Build-A-Bear shop that features a Hello Kitty which we’ve somehow managed to avoid, and Woolworths selling Hello Kitty chocolate and party supplies.

I kept the Hello Kitty store secret, knowing full well that if she knew it, she would forever more only want to go there.

But after meeting Phineas and Ferb, it was her turn.  We didn’t tell her that was where we were going.  I’d aimed to take photographs of the utter delight on her face, but as soon as Pudding saw the shop she put the hyper in hyperactive and raced in ahead of me.

Fortunately for their sakes, most of the delicate items were behind locked glass, so Pudding contented herself with touching the shop assistants Hello Kitty apron until I rescued her.  I knew there would be no getting her away from what must now be The Best Place In The World without actually buying her something.  They didn’t have the bento box that Pudding has recently become obsessed with on YouTube, but they did have an egg shaper, which I bought to celebrate the fact that Pudding is no longer allergic to eggs.

Image

Good luck gettting me out of here.

We also bought a plastic cup, figuring that it would last longer than the day she had a Hello Kitty china mug.  It didn’t even make it that long.  Any suggestions for what to do with a broken plastic cup?  maybe storing her paintbrushes to combine another special interest of hers.

Still, nothing lasts in this world, and that is a lesson for all of us.  Including that feeling that I’d treated the children fairly- Cubby began demanding equal treatment until we caved in and got him a Captain America car.  Ping-pong, you see?

And all of this rampant consumerism explains why it is necessary for me to return to work.  I’m quite looking forward to it- as long as it doesn’t get too much in the way of my special interests.

Written by Spectrummy Mummy

July 10, 2012 at 10:35 am

Adventures with Phineas and Ferb

with 6 comments

It is tough being the sibling of a child with special needs.  It is even tougher if you have some special needs yourself, in a similar-but-different way to your big sister.  Ask Cubby.  It seems like his formative years have been spent watching his sister in therapy, then having to go through the same thing himself.

So when your world is chaotic, and you don’t always have as much attention as you like, you tend to attach yourself to something that you really care about: a special interest.  A thing that marks you out from others.  A way of expressing yourself.  A way of being yourself, independent of all those other demands.

Cubby used to adore Thomas The Train/ Tank Engine, but as he has developed, he has opened up to other interests.  He likes cars (and Cars), super heroes, and Phineas and Ferb.

Although it is shown on South African TV, I had no idea Phineas and Ferb was big here until I heard they were coming to our local mall a couple of weeks ago.  I knew what we were going to do that day- we were going to meet them!

I collected Pudding and Cubby from school, and explained to them what was going to happen.  I explained that there might be bright lights and loud noises.  Probably lots of people and waiting in line.  They still seemed game.

When we got there, I knew it was an experiment in sensory overload.  We waited gingerly on the periphery as I tried to figure out a plan of action.  The queue was pretty big, as families waited in line to get their photo taken with Phineas and Ferb.  It was free, so some older kids had wised up to this, and kept cutting in to go round and round again.

Image

All fun and games for Phineas and Ferb until we spectrummy three turn up.

Cubby made it clear that he was not going home, and Pudding seemed to be okay too.  We joined the line.  I tried to make as much space around us as possible, as we don’t like being touched by strangers.  That isn’t the majestic plural either- I hate it every bit as much as my kids.  Of course, some scheming local kids decided to take advantage of the space around us by filling in the gap, but as long as we made it (eventually) to the front, I wasn’t too concerned.

One of the unfortunate aspects of hypotonia, is that Pudding and Cubby’s muscles tire easily (except when I want them to tire out, of course), which makes standing around for a long time particularly uncomfortable.  They decided to lie down, which didn’t exactly help with the whole people cutting in front of us thing.  Nor did it do wonders for my stress levels, but we somehow made it to the front unscathed.

Image

What, you are tying to touch me back?! 

 

I had assumed that Pudding wouldn’t want to actually meet Phineas and Ferb, but she surprised me by telling me that she would- and that she was going to touch them.  For a tactile sensory-seeker, there is no concept of not touching giant felt people.  What she hadn’t counted on, however, was that Phineas also wanted a hug/ handhake/ high 5.

No.

Only Japanese cats with no mouths would be granted such largesse.  As she explained to Phineas, Ferb, and the rest of South Africa:

“NO YOU*DON’T WANT PHINEAS AND FERB- YOU* WANT HELLO KITTY.”

Pudding still has a lot of trouble with her pronouns, but I don’t discount the possibility that she was actually commanding the promoters and people of Johannesburg to replace this duo with her esteemed special interest.

Image

You might thing this is bad photography, but I swear this is what it looked like.

 

A couple of women rushed on to the stage to help out, but unless I wanted things to get really out of hand, the only way to calm things down was to scoop Pudding up and remove her from the stage.  I was going to let Cubby have his moment!

I left a bewildered Cubby to hold hands with his heroes and have his picture taken.  It was awesome too- but I can’t find it anywhere.  Afterwards we found some beanbags to crash on.  The kids got the proprioceptive fix they needed, and after a few moments, we were all regulated again.

Image

Take that- sensory overload!

 

We were all calm enough to draw on special Phineas and Ferb paper.  Again, Pudding chastised a confused staff member for not having Hello Kitty paper.

Image

Ooh, you can see his photo in this picture- told you it was a good one!

All was well.  My breathing had returned to normal.  Pudding decided to tell me then that it was,

“…Pudding’s turn.  Want to go to Hello Kitty now.”

Image

She knows what we’re going to do today!

And you know, she was right.  Because it is tough being the sibling of a child with special needs.  It is even tougher if you have some special needs yourself, in a similar-but-different way to your little brother.

In our never-ending game of ping-pong, in which we parents are the ball- it was Pudding’s turn to be served.  I’ll tell you about that tomorrow.

I’m a Belieber

with 11 comments

Justin Bieber performing at the Conseco Fieldh...

Justin Bieber performing at the Conseco Fieldhouse. (Photo credit: Wikipedia)

My kids are musical.  I don’t mean this in the sense that they are prodigies- then don’t even play instruments.  Pudding seems to get her musical tone from me (alas), but Cubby can carry a tune.  They enjoy music and it is a big part of their lives.

There may be something about the rhythm that helps Pudding to learn.  She still says her ABCs through the alphabet song, and that is also the way she learned her days of the week.  We sing silly songs to each other with her name in them- music is just another tool for me to engage my children.

Both children have auditory processing dysfunction, so we have tried various therapeutic listening approaches to try and help, but haven’t seen much improvement in that respect.  They don’t always enjoy modified music, but they do enjoy listening to regular music, and making their own (kind of).

In our previous car we had a CD player, and inevitably played two CDs the whole time.  One was mostly nursery rhymes, other kids songs, and the odd bit of Elmo- this was Cubby’s choice.  Pudding prefers female voices, so her CD featured Feist, The Carpenters and ABBA.

Our current car (though not for much longer) only has a cassette deck, so we listen to the radio instead.  A lot of the music gives me a headache, but the kids prefer it to silence.  Still, one of the presenters has a really nice voice, so even when he reads bad news, it sounds good.

I noticed a few weeks ago that Pudding has developed a couple of new artists to her repertoire.  She sings along (kind of) with Adele and Nicki Minaj.  It is interesting to me that she only likes female voices, and I think a big part of her fearing men / preferring women is that deeper voices are disturbing to her sound sensitivity.

Two weeks ago, we were in the car and a song came on that has been played a lot here over the last few weeks: Justin Bieber’s “Boyfriend.”  Cubby began singing along with it, which was the first time he’d shown a preference for a song that wasn’t a rhyme.  When we came inside, he was still singing, so of course I joined in with him.  Even if I prefer my Justins of the Timberlake variety- this particular song is pretty catchy.

I love that they are both finding their own personal style, and learning how to express themselves in all the many ways we human beings can.

Last week we were in the queue to get some medicine from the pharmacy, when the loudspeaker switched on.  Normally loudspeakers (and fireworks) are the enemy for Cubby.  But lo and behold, on comes the Justin Bieber song.  To the amusement of the other customers, he announces with delight:

“Mummy, it’s our song!”

And it is wonderful, because this is him using music to engage with me.  This is social reciprocity, and I’ll take it any way it comes.  I never thought I’d say it, but I suppose that makes me a Belieber.

Written by Spectrummy Mummy

June 26, 2012 at 10:08 am

Isms

with 5 comments

Pudding a month before she turned two- already displaying excessive tallness and symptoms of ballerinaism

Pudding came into my room this morning, on her tiptoes, and spun around in a perfect pirouette.  Well, perfect to me anyway.  Then she performed her signature arabesque.  With her predilection for pink, long slim body and gamine features, she appears to be suffering from a common disorder: ballerinaism.

Ballerinaism affects many girls (and some boys) throughout the lifespan, but reaches its peak in children aged 5-7.  Symptoms include a fondness for taffeta and being painted by Degas.

Actually, Pudding doesn’t really meet the criteria.  She dances to her own music this child, and hasn’t shown any interest in ballet or any other kind of dance.  But if she were to be overcome by this syndrome, we’d be treating her with a tutu and scrambling to find a ballet teacher with an interest in the inner grace of a child with serious balance and coordination problems.

I’m being ridiculous because recently we have dealt with the possibility of Pudding being diagnosed with yet another -ism, which mercifully didn’t turn out to be the case.  At an appointment, Pudding’s doctor focused on her height.  I’ve mentioned before that Pudding is tall, but it turns out she is even taller, relative to her contemporaries, than I’d even imagined.  Her doctor was afraid she may have a tumour on her pituitary gland, which is the cause of giantism.

Giantism.  Pudding turned 5 in December, and I guessed her to appear about two years older than she is.  In fact, she is still off the charts for a 7 year-old girl, and measures in at slightly taller than the average 9 year-old.  The doctor took several measurements of body parts and ordered blood work, because in her words, “It doesn’t do to be too different when you’re five.”

A tiny bit late for that!

Now, I could tell you about the tribulations of a child who looks so much older, but is developmentally so much younger than her real age.  But of course, those troubles would pale into comparison if in fact we’d added this diagnosis to our collection.

A blood test revealed that her human growth hormones are slightly elevated, but within normal limits.  We could be looking at yet another growth spurt, but she is just incredibly tall.  If any modeling agency would like to hire a supermodel who only wears pink and Hello Kitty, I’ve got your muse right here.  Unlike Naomi Campbell who wouldn’t get out of bed for less than 10,000; my girl won’t stay in her bed for anything we’ve tried thus far.  I’ll be her agent and manager.

Eustacia Cutler famously said of her daughter (Temple Grandin): “Different, not less.”  With Pudding it has always been different, and a little bit more.  But we love every extra inch of her.  Having said that, she has just grown out of another dress size, so if you have any hand-me-downs we’ll be glad to take them.  Especially if you have a tutu- I haven’t entirely ruled out ballerinaism yet.

Written by Spectrummy Mummy

April 26, 2012 at 2:25 pm

Dummy

with 5 comments

“When you know better, you do better.” – Maya Angelou.

Not me, wise Maya.  Not me.  But I do make new mistakes in different ways.  And I do believe entirely in making mistakes.

When I was that insanely annoying woman who thought she knew best about parenting (before actual motherhood taught me all I needed to learn) I knew I wouldn’t let Pudding have a dummy (pacifier). Then more information came out about how dummies actually helped reduce the risk of S.I.D.S and I quickly changed my stance.  We would have pacifiers, but would give them up before long.

I admit to being a bit of a dummy back then.  I never picked up on how soothing a pacifier was to Pudding.  Oh, I knew that it could help stop the screaming when I couldn’t figure out what caused the screaming, but I didn’t see her intense need for oral-motor stimulation.

I stopped Pudding having her dummy at just after 18 months old.  Pudding gave up the pacifier without any difficulty, and I’m sure I congratulated myself well for it at the time.  I certainly didn’t respect how much more difficult it would make things for a child with intense needs and difficulty communicating.

 She began looking for other things to put in her mouth: crayons, play dough, anything she could find really. Pudding had pica, a disorder causing her to eat non-edible items.  We were lucky that she never did herself any serious harm, though I made more phone calls to poison control than I’d have liked.  That oral-motor sensory-seeking continues to this day, though more often than not she can be persuaded to bite on chewelry.

So the second time around, when I knew better, I did better.  I would avoid the dangers of pica and compulsively mouthing non-food items by allowing Cubby his pacifier as long as he needed it.  And he needed it.  Unlike Pudding, whose sensory system was under-responsive in her early years, Cubby was born sensitive and anxious.

He lived with a pacifier in his mouth.  I struggled to persuade him to use it just for sleeping, and from a very early age, he would hide them around the house.  Pudding took it upon herself as a sisterly duty to ensure that there was a dummy in his mouth at all times.  In fairness, his crying distressed her greatly, so consoling him would be soothing for her too.

Cubby has never experienced the pragmatic language delays that impair Pudding’s verbal communication, but as time has passed, I’ve noticed that it is increasingly difficult for others to understand him.  During OT we’d work on his oral-motor strength with blowing and sucking activities, but his low muscle tone seemed as pronounced as ever.

On to his third birthday party, where he didn’t have the strength to blow out his own birthday candles.  I made an appointment for a Speech and Language Assessment.  Now, only part of his articulation difficulties are directly caused by the pacifier, but using the dummy has certainly contributed.  With tongue thrust, swallowing difficulties and weakness of the orofacial muscles, it became clear that intensive efforts would be needed to help with his articulation.  The dummy had to go- immediately, and speech therapy sessions twice a week are the order of the day.

Cubby didn’t give it up quite so easily as his big sister, but he hasn’t made mention of his dummy in a few days.  I’m confident throwing them all out once and for all.  It is interesting sitting through another set of speech therapy sessions with another child, and working on completely different problems.

I’ve chastised myself for my leniency with the pacifier this time, just as I berated myself for the strictness that contributed to Pudding’s pica and sensory seeking.  But really, even the wisdom of Ms. Angelou wouldn’t help here.

When it comes to raising kids with different needs, when you know different, you do different.  Whether the outcome is the same or completely different, trying doesn’t make you a dummy, which is good, because we don’t need any more of those in our house.

Written by Spectrummy Mummy

April 23, 2012 at 2:07 pm