Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

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Birthday Boy

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Today is Cubby’s 2nd Birthday.

We can have small conversations, he and I.  Something I never take for granted.  Something I was never sure would happen, even before we saw signs of autism in Pudding.  A couple of weeks ago, it was a balmy 70F and we were at the park, having such a conversation.  I told him that we were having a birthday party soon for him, like we’d had for Daddy.  He remembered birthday cake.  He told me he wanted a train cake.  I told him I’d do it.  He told me he wanted the bouncy castle.   Why not?  Balloons.  No problem.  He told me he wanted pretzels, taquitos, guacamole, fruit and candy.  I agreed.  Your day, your way, little dude.

Then he kept talking about his party, day in, day out.  He’d have two candles on his cake.  His friends S, A & K would be there.  He never wavered in his selections.  He had the vision for his party, I just had to deliver it.  He was just so excited.  The kid who spend too much time in waiting rooms.  Whose needs are sometimes crowded out by his sister’s demands.  The one who has to go with the flow, because the flow almost always has to go whichever direction Pudding determines.  I was going to make it happen.

Of course, he got a cold last week, and of course, he passed it on to me.  But I was still determined to make the party happen just the way he wanted.  Thankfully his grandparents came to help out.  Then, and this is where I began to shake my fist at the sky, it snowed!  Not much, but enough to thwart outdoor activities.  But I had promised my boy that bouncy castle, so we brought it inside.  I’d promised my boy all those foods, and I found or made egg, milk, and wheat free versions of them all.  He had the best birthday of his short life.  All his friends came, and were thrilled to bounce, and feast on Cubby’s favourite things.  He got the most amazing presents from our very generous friends.  Our house is now stuffed with cars, trucks, trains and superhero toys.  He didn’t want the party to end.  He fought going to sleep for as long as he possibly could, trying not to let the day end.

Through all of this, his sister did wonderfully.  There was a slight confusion about who gets to open presents, but she managed to back off before it got ugly.  With being ill, I hadn’t had chance to make her a social story, which makes the fact that she held it together so well even more impressive.  For once all the attention was on him, and she did nothing to interfere with that.  I’m calling that her gift to him.  It was the day of his dreams, he deserves no less.

The very strange thing, is that this was all supposed to be very different.  When I was pregnant with Cubby, his ultrasounds revealed abnormalities.  We prepared ourselves that he would be our special needs child, little knowing that we already had one in Pudding.  Two years ago in Luxembourg, our little guy came into our world.  We expected the worst, and hoped for the best, something that I don’t seem to have stopped doing ever since.  Yesterday was another one of those days tipped towards hope.  Thinking about the rush of love I felt when I finally held my little fighter, I can’t help but expect there will be many more just like it.

Happy Birthday, my sweet boy, you exceed my expectations every day.

Needless to say, the train cake isn't sugar-free!

Cubby, Pudding and friends on the indoor bouncy castle.

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Written by Spectrummy Mummy

March 28, 2011 at 7:27 am

Posted in Sibling

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Sick to Death

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I’d been looking to going out for my husband’s birthday for…..well, since whenever the last time was I got out of the house without the kids.  The fact that I can’t remember when that was speaks volumes.  This has just been a rough winter for our family.  So on Friday when Cubby seemed even clingier than usual, I hoped for the best.  I took his temperature and it read 103F.  Of course.

I stayed home.  Again.  There are now calls for my husband to take a photo of me with today’s newspaper to prove I’m still alive.  After all, anyone could update a Facebook or Twitter status, or write a blog post with the words “centre” and “colour” deliberately misspelled to look authentically British.  I mean, when was the last time you spoke to me?!  Of course, things aren’t that bad, but I do kind of miss the outside.

Apart from waking up a little extra in the night, he wasn’t so bad.  And on Saturday and Sunday he was just fine.  Perhaps a little off his food, perhaps a little cranky, but that is hard to detect in a toddler who delights in being both picky and cranky.  We stuck close to home just in case, and I got some spring cleaning done, like cleaning our very sticky dining room carpet.

On Monday I was getting Pudding ready for school, when he was suddenly violently sick.  Of course, on the dining room carpet.  It just looked too fresh and clean to belong in our house, I suppose.  I took him upstairs, and he was sick all over our bed.  I asked him if he was sick, but he replied that no, he was sad.  Poor boy.  I cleaned him up, sent Pudding off to school.  He took a nap, and woke up in time for a quick snack before we left to collect Pudding to take her for her speech therapy session.  I debated canceling, but we’d missed the previous two sessions.  Besides, he seemed fine after the nap.

He wasn’t.  He was sick in spectacular fashion on the way there, to Pudding’s fascinated horror, and then again on the way home.  I removed his clothes in the kitchen, and as I went to get a cloth to clean him up, he vomited again.  And then slipped in it and banged his head in it.  Sigh.  I gathered him up, and he transferred the whole mess to me and my hair.

He was the kind of clingy that meant even the briefest of showers had a background of screaming.  Only after I got out did I realize I hadn’t washed my hair.  Sigh.  In all this time, Pudding had precisely none of my attention, a circumstance that she was determined to rectify.  I poured a bath for Cubby, and she immediately stripped all her clothes off to join him.  I told her that there would be no bath for her.  Cubby was sick, and needed to get clean.

Pudding– PUDDING’S SICK!!!

Me– Oh really, Pudding?  You’re sick too?

Pudding– Yes, I’m sick.  I need some medicine.  You take medicine when you’re sick.

Well, she got me on that one, but I still denied the bath.

***

The next day I was still dealing with a sickly boy, when I got the call from the school to collect Pudding.  She was listless and asking to lie down.  I got her into the car, and asked if she was sick.  And this time, this time she replies:

-No, I’m NOT sick!!!  Cubby’s sick.  Cubby’s wearing pyjamas.  I don’t want to wear pyjamas, I want to wear a dress.  I don’t want to go to bed.  I’m NOT sick.

And then the rest of the day did a very good demonstration of how she was not sick, but extremely out of sync.  Eventually she developed a fever, so she is still home.  She is off her food too, which is most un-Puddinglike.  Perhaps this is the incubation period before things get messy.

***

Having observed my kids this winter, I think illness magnifies their sensory tendencies.  Cubby, my sensitive avoider, wants everything to be calm and quiet.  He is content to lie down (as long as I’m there with him) and read books.  He loses his ability to tolerate his sister’s closeness and noise-making.  Pudding, my underresponsive seeker, seems to be looking for yet more input to regulate herself.  As much of a struggle as it can be for them to be together when they’re well, it is so much worse when they are ill.  I’m right in the middle, trying to keep both of them happy, and not doing such a stellar job of it.  I just need to avoid catching it myself.

So that is where we are this week.  If I go quiet on the social media, you’ll know why.  But if a short post about colour centres hits your inbox, ask my husband about that picture with today’s newspaper, would you?

Written by Spectrummy Mummy

March 17, 2011 at 6:54 am

The Motivator

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I suppose it started a few months ago.  Pudding, being the sharing soul that she is, decided that anything she didn’t want was to be given to Cubby.  It happened whenever I served some food she didn’t like.  Cubby wants to eat it. If we tried to get her to do something she didn’t want: Cubby’s turn. Conversely, of course, we would hear Pudding wants to try that and Pudding’s turn if she wanted to do something.  It kind of evolved into the shorthand of just saying his name to push attention away from her.  He was the scapegoat.

Cubby, though, is no sacrificial victim.  He is coming into his own person.  An interesting blend of sensory issues and precocious language.  He stands up for himself, defiant to his big sister’s wishes- no mean feat given that she is about twice his size.  He tells us he doesn’t like it, doesn’t want to, afraid that I’ll make him eat a second portion of carrots, or whatever drama the women in his life have concocted.

Sometimes, though, he wants whatever is on offer.  The thing so heinous to his sister is just what he desires.  His motor delays are much milder than Pudding’s so many of the tasks we work on are pleasant for him.  We treat them the same though, so if I reward a challenge for Pudding with a candy reinforcer, he gets one too.  At these times he is a very willing accomplice.  I call him The Motivator.

Yesterday the OT assigned Pudding some yoga poses as homework.  They are just basic animal poses for children, but it is really difficult for her.  She lacks the strength, coordination and endurance to make yoga enjoyable.  Of course, these are the very benefits that yoga brings, so we have to keep trying.  She couldn’t be persuaded.  Spectrummy Daddy and I tried to manipulate her body for her, but she would deliberately move as soon as we let go.  Even the promise of a pink Starburst made no impact.  The more we persisted, the more frustrated she became, until she whined Cubby’s turn, Cubby’s turn, Cubby’s turn, over and over.

Cubby dutifully wandered over and announced it was his turn.  I demonstrated the pose, then we helped him to do it.  Immediately we rewarded him with the candy.  Pudding was apoplectic with rage.  We gave away her candy!  I asked if it was her turn, but she continued to sulk, but Cubby piped up to do it again.  He did another pose, and was awarded another treat.  This time it registered with Pudding that there was only one way to get the treats before her brother took them all.

She complied, and actually did a lot better than I thought she would.  Although we still had to help her put some limbs in the correct places, she maintained her body position for the full 20 seconds, even counting herself.  As soon as she was finished, The Motivator was ready and waiting for his turn again.  Inspiring his sister to strengthen her body, and take turns: The Motivator might just be the most useful instrument in our ensemble.

Written by Spectrummy Mummy

February 24, 2011 at 7:16 am

Different

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Actor George Clooney - 66th Venice Internation...

Totally gratuitous Clooney Image via Wikipedia

On Tuesday we had the second part of Cubby’s evaluation by Dr. P. This was a 1.5 hour play session, and though he tried to fall asleep in the car on the way there, he perked up, and was on very good form for the duration of the appointment. Cubby was very comfortable, possibly because he’d been to her office previously with his sister, and definitely because we stayed in the room with him. As with Pudding, Dr. P will write a full report for us, but she shared her overall impressions with us on the day.

I’m actually still trying to process my feelings. I think it will take a few days for it to sink in. My friends and family were eager to know the results, so I shared them. I’ll share them with you too now, though please don’t ask me what I think, because I’m still working on that. He is a typically developing toddler, and she has no concerns whatsoever about his development. She said she wished she had filmed the evaluation, as he exemplified social referencing and natural and spontaneous interactions. She told us she frequently forgot his chronological age (just under 22 months) due to his advanced language skills and attempts at humour and charm to get what he wanted (clearly my boy is the next George Clooney).

We talked for some time about our many concerns. His sensory defensiveness, his anxiety with unfamiliar people and environments, and lack of flexibility. All things that had unnerved me because they presented very differently with his sister at that age. She genuinely seemed more social than he did, but of course, the quality of her social interactions was and remains, quite different. I can have small conversations with Cubby, he seeks me out for this purpose. He has anxiety caused by his sensory issues, or sensory issues caused by his anxiety; but when he is comfortable and regulated, he is very social as Dr. P saw. Yes, in this way he is different to his sister.

In so many other ways though, he is just the same. When friends and family wondered what the doctor had observed, this was my response:

Precocious, intelligent, engaging, sensitive, sometimes anxious, cheeky, charming, adorable. Like his sister, only WITHOUT the autism.

He has some differences with the way he senses and perceives the world, but they don’t make the same impact on his ability to communicate and connect that they do with Pudding. We always felt that getting the label for Pudding didn’t change her, it changed us, and the way we related to her. Likewise, not getting the diagnosis for Cubby won’t change things. He continues to need therapy and accommodations to feel comfortable and function at his best. In that way, labels aside, my children really aren’t so different.

Written by Spectrummy Mummy

January 27, 2011 at 7:25 am

Posted in Sibling

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The Filing Cabinet

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When we first noticed signs of autism in Pudding, we panicked.  We were three weeks away from moving to an isolated Spanish-speaking country that offered very limited support to children with developmental delays.  I knew that we needed a diagnosis quickly, but these things don’t happen quickly.  Then we discovered a new Developmental Pediatrician had just joined another branch at our pediatric group practice.  She already had a waiting list of a few months.  I badgered the reception staff for her email address, explaining that had one of their pediatricians not been so dismissive of my concerns, I’d have more time to get Pudding thoroughly evaluated.  I wrote and begged Dr. P to see us.  She agreed the very next week.  Though Pudding was subsequently diagnosed through a multidisciplinary team at a hospital center, she was, and remains, our first point of call, and has gently guided us through the last year and a half.

I remember our first appointment with Dr. P.  She had a large filing cabinet that held a handful of files, but was mostly filled with toys and assessment tools.  She was the first professional who seemed to actually care about our child, and how we were doing as a family.  At each visit, I noticed a few more files in the cabinet.  Yet each time, she treated Pudding as an individual, the only one under her care.  She would email to check on her.   She took the time to ask me how I was doing.

When Pudding seemed unhappy and overloaded in her first school, she was the one we turned to to talk about the options, and what she felt would work best for Pudding.  I noticed the filing cabinet was full now.  The toys and assessment tools were spewing out into the consultation room.   So many more children now, just like Pudding.  So many families under the care of this treasure of a doctor.

Around the time Cubby was assessed by Early Intervention, I arranged an appointment for Cubby too.  Eight months was the waiting time.  And this time we waited.  In those eight months, he has continued to grow and develop.  While there are motor delays, sensory issues, and repetitive behaviors, I have also watched him grow into a talkative toddler.  I held onto the intake packet, wondering if I should fill out the forms, or call and cancel the appointment.  How do I reduce my son to a few pieces of paper, when he seems to change every day?  Does he really belong there?  He doesn’t have the communicative difficulties that his sister does.  Perhaps we should wait, give him the luxury of time that we didn’t have with Pudding.  Dr. P’s filing cabinet is so full, perhaps another child needs to be in there more than Cubby does.  I went forwards and backwards on this issue, until I realized that if I were to cancel, we’d wait at least another eight months.  In six months, we’ll have left the country.  While there are, I’m sure, perfectly good doctors where we’re heading, there won’t be Dr. P.

We met with her today, parents only, to discuss our concerns.  We were greeted like old friends.  We chatted about Pudding, and the family, and our impending move.  She agreed that Cubby’s anxiety, transition difficulties, motor delays and problems with modulation were problems that could lead to him becoming more withdrawn and isolated.  She asserted that she needed to take a look at him.  Next week she will assess him.  I find him impossible to classify, but I trust in her.  I don’t yet know if he is going to end up being another file in that overflowing cabinet.  But I do know that, like his sister and all the other kids in there, whatever happens he will be more than just another file to her.  Even if Dr. P needs to get another cabinet to hold all her charges, each one so much more than their paperwork could possibly describe.

Written by Spectrummy Mummy

January 20, 2011 at 6:59 am

Hug

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Cubby does not like to be touched.

That isn’t really true, because he is a cuddly little guy with me, and with daddy too. He needs physical contact to get to sleep, but wants lots of hugs and cuddles throughout the day too.
Cubby does not like to be touched unless it is on his terms.

Much more accurate.

Pudding likes to touch.  She is affectionate, perhaps over-eager in her affections, and is definitely a hugger.  We’ve already begun the process of explaining who you can and can’t hug, but it isn’t that easy.  Pudding wants to hug her brother, and because he reacts so badly to those hugs, we’ve had to ask her stop.  After some time, she has accepted that Cubby does not want to be hugged.  Instead she kisses him on his head where he feels less sensitive.  Success.

Occasionally I’m a little sad at the sight of Pudding stretching out her arms to embrace him, then remembering and dropping them.  Sometimes she’ll try to join in on a hug and gets upset when I turn her away.  I hate this, but we all have to learn to respect Cubby’s sensitivity.  The lesson is just harder for her.

Yesterday, when we had our second round of this session of the sibling study, I mentioned to the examiner that Cubby does not like to be touched.  All of the session is filmed, and many segments require him to be seated at the table.  Every time she strapped him in that chair, he flinched at the touch.  Ultimately she suggested we terminate the session, and return another time, but I declined that option.  For one thing, I know he’ll have the same reaction next time.  For another, a return trip of almost 4 hours plus testing time is just too much on top of the various therapies and other commitments we have.  We pushed through, culminating with the blood draw for the neurobiological portion of the testing.  This went really badly, the phlebotomist missed the vein in the first attempt, he resented being held down, and he couldn’t stand the feel of the dressings on his little arms.  He was distraught, and carried on screaming until he fell asleep in the car, exhausted.

We arrived home just before Pudding returned from school.  I collected her from the bus, and she was excited to see daddy already in the house.  Daddy asked her for a hug, and she bounded over to him.  Cubby watched the whole thing, then looked at his sister and said, “hug.”

Of course, we had to coax her into doing something she has learned not to do, but the two of them hugged.  They both enjoyed it.  I’m hoping this is the first of many.

Written by Spectrummy Mummy

November 12, 2010 at 12:30 am

Sibling Rivalry

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I am so excited to write my first post about sibling rivalry!  Yes, we have it in our house!  Our atypical kids have the beginnings of an all too typical relationship, and it makes me happy.  You can’t give one something without giving it to the other.  And one always wants what the other has.  Isn’t that so….normal, for want of a better word?  To be jealous of someone, you need to be paying attention.  You need to acknowledge their existence.  You need to come out of your own world, and recognize that there are other people sharing your world with you.

In the beginning, Pudding was quite open to the idea of a baby brother, or so we thought.  It turns out when we would ask if she was happy, we were getting an echolaic response.  We took it for granted anyway.  As she got more and more anxious, it became pretty clear that baby screams are not pleasant to her ears.  I hardly blame her for tuning out more and more.  Babies, I’m the first to admit, are pretty rubbish.  They are takers, not givers, and that doesn’t sit well with a 2 year-old, or a 3 year-old for that matter.  You aren’t ever allowed to punish the baby for taking toys and parents away, which is just not fair.

Still, they do grow up.  They start to get interesting.  They can say your name, and they find you very funny  You can get in trouble together!  Suddenly mummy and daddy aren’t sure who smeared the toothpaste everywhere, or deliberately poured the soy milk on the carpet, or used markers on the sofa (all today, before 7am).  And in that uncertainty, lies the benefit of the doubt.  Kids with pragmatic speech delays are excellent at pleading the 5th.  Having a little brother is not so bad.

If only you didn’t have to share though.  Most toys are for sharing, only a couple of special ones, like Sleeping Beauty or Upsy-Daisy are just for Pudding.  The trouble is, Cubby just doesn’t get that.  He tried to take them all.the.time.  In fact, it seems like he only wants the things because he can’t have them.  His special interests are boy things like trains and trucks (try telling me this boy doesn’t have an ASD) not girl things like dolls and princesses.  Rubbish.

Elmo

Image via Wikipedia

Enter Elmo.  That cute, red muppet with pronoun problems.  Cubby likes him.  Of course he does, he is an American toddler living in America.  It is in his contract.  Deciding to capitalize on this, yesterday I purchased an inexpensive stuffed Elmo.  For some reason, Cubby also decided he needed a bucket to live in, not sure why, but I know better than to argue over a $1 pail in the middle of Target.  Pudding was initially disappointed with the new addition to the household.  He doesn’t sing, or move, or talk, like so many of the other toys here.  She told me it was broken and I should fix it.  Cubby was happy enough with him though, which was the whole point.  She can play with her Upsy-Daisy, and he can play with Elmo.  Simple.

I know, I know, nothing is ever simple- I’m a fool for thinking so!  Overnight, Elmo became a highly-prized treasure.  He is the most emotional being in this house (quite a feat when we are all feeling so highly-strung) and Pudding is verbalizing how happy/sad/sleepy/hungry Elmo is.  Can I say that again?  Pudding is verbalizing how happy/sad/sleepy/hungry Elmo is. Erm, yes, we’d like to encourage that.  So, we do the old switcharoo, and let her have Elmo, and Cubby took Upsy-Daisy (just Daisy to Cubby, they’re on good terms).  That wasn’t agreeable to Her Royal Highness though, and we quickly had to do a trade before blood was spilled.

I might (frequently) complain about how difficult it is to raise two only children as brother and sister, but for the way it forces them to grow and interact, it is worth it.  Feel free to remind me of this post by Monday, when I’ll have done an about-turn on this opinion.  But for now, I’ll take some sibling rivalry, though I’d rather not experience a Mexican stand-off at 6 am!

Written by Spectrummy Mummy

October 1, 2010 at 7:28 am