Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘emotions

Wordless Wednesday 11 May 11

with 13 comments

Funprint book + washable ink

Pudding provides the thumbprints

I add the details

And write the word next to it.

Pudding learns to spell the word.

We see if she can write the word the next time.

Look at all these lovely feelings!

Using Pudding’s love of art (and a visual/tactile/proprioceptive method) to help her to learn.

Happy Wordless Wednesday everybody!

Boston (part one)

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I’d been waiting for Saturday to come for what seemed like forever.  Finally the day had arrived to trade in my huge rucksack for my rarely used handbag.  It was my day off.   Spectrummy Mummy goes to Boston!

I was ready, prepared, excited, and nervous.  I busied myself with the mechanics of getting there.  Pudding was not happy that I was going to fly without her, something that has never happened before.  I tried to reassure her that I was returning that evening, and that she would do a day of fun stuff with her daddy and brother.  I left her crying as I went through security.  Later Spectrummy Daddy texted me that she was so upset because she didn’t know what I was going to eat for breakfast.  It makes sense, apart from one overnight trip to a friend’s wedding, I’ve never left Pudding or Cubby.  They always know what I eat for breakfast.  That small detail I’d omitted rocked her world.

So I pressed on through airport security.  Something that is so, so, so much easier to navigate without children in tow.  Ever the autism mother even on my day off, I snapped some pictures of the process to help with social stories.  It crossed my mind that it could be suspicious behavior, but I don’t exactly meet the profile for a terrorist, so nobody commented.  I chatted with the TSA agents about the best way to navigate the screening process with special needs children.  My day’s work over, I got to enjoy a coffee and croissant, without feeling guilty about eating allergic foods, and without half the coffee being spilled on me, or deliberately poured out.  Simple pleasures.

The very brief flight was over quickly.  Remarkable for how uneventful it was.  No crying because of the loud noises.  No kicking the seat in front.  No invading of personal space.  No loud humming, or singing, or shrieking.  No jumping up and down, or moving the window shutter up and down, or turning the fan and light on and off repeatedly.  Honestly, I was on my very best behaviour!

The flight to Boston was so quick that I got to the airport 20 minutes before Alysia arrived to meet me, so I had plenty more time to be nervous.  What if I come across differently in my blog, and she is disappointed?  I express myself better through writing than I do in person, so I might not be what she expected.  What if she is different to how I’d imagined?  What if we don’t get on?  It was a lot like a blind date.  Only I’ve never flown to another city for a blind date, so the stakes were higher.

But then she appeared, carrying a sign for “Spectrummy Mummy” (as I’d demanded in my rider) and it wasn’t like meeting a new friend, it was like greeting an old one.

We hugged, and my nerves evaporated.  I knew everything was going to be great as I spent the day with my new old friend.

Written by Spectrummy Mummy

May 9, 2011 at 7:27 am

The Tracks of my Tears

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So what I didn’t refer to in yesterday’s post were the tears.  At one point in the afternoon, I was a little puddle.  I’d been holding on for a few days.  I’d wanted to cry when I locked Cubby in the car, but that would have only made the situation worse.  I’d wanted to cry when I felt ill the next day, but there didn’t seem much point by then.  I’d wanted to shed tears of forcing a claustrophobic Pudding to stay inside, but I held back.  And I really wanted to cry upon hearing about the 16 hour flight, but somehow managed not to.

I pride myself on my stiff upper lip from my English heritage.  I felt that I’d cried too many tears when Pudding was first diagnosed.  I vowed not to waste any more on something I couldn’t change.  A useless, self-indulgent act.

I’m stressed to the point of tears, and I don’t let myself…because it is self-indulgent?  How else am I going to indulge myself?  When am I going to indulge myself?  And at what point do I let myself break?  So I reclined on the sofa, and let the tears fall.  My inner Englishwoman did chide me for being so ridiculous, but I just gave in to it.

After a few minutes, Pudding came to find me.  “I want wheels on the bus song.”

I ignored her.

I don’t want to admit this, but I was waiting to see if she’d notice.  She didn’t.  She wasn’t looking.  Her mind was on hearing the song she wanted, my feelings not relevant right then.  I wasn’t feeling like making it a teaching moment.  There will be other opportunities to demonstrate how to show concern.  I cried some more, I was being indulgent anyway, why not gratify myself with a few more tears?  I let them flow.

She asked again, a few times, until I asked her to leave through my sobs.  I’m not proud.  Hardly my best parenting moment, but I justified that she needs to see emotions if she is ever to understand them.  I know, my inner Englishwoman is rolling her eyes too.

Once Pudding had made her retreat, Cubby entered.  He saw me crying and stopped.  His face contorted into a sob, but somehow he held himself in check, and didn’t make a sound.  It was a look of…concern.  Something I’d never seen him do before.  Previously when I’d hurt myself, or Pudding cried, his reaction had been to cry too.  I fell down the stairs some weeks ago, and he cried for 20 minutes after, even though it was my ankle that was hurt, and he was just a witness.

“Mummy’s crying…..Mummy’s sad.”

We label emotions a lot, so I wasn’t surprised he had detected this one.  But I was surprised by what he did next.  He crawled up on the couch next to me, and grabbed a lock of my hair.  He just sat there, his head resting on mine, stroking my hair.  Trying to comfort me in the way that works for him.  I took it.  Before long the tears stopped flowing, and I dried my face.  I gave my little guy a hug.

He looked at me and asked, “Mummy happy?”

I told him I was, and we left to join his sister for wheels on the bus.  I gave Pudding a squeeze, though she hadn’t solicited it, and didn’t particularly welcome it.

As Cubby nears two, I can really see the different developmental tracks they are taking.  Different, not less.  Pudding will get there, at her own pace.  She is still in the race, and there is no prize for winning.  What comes naturally and easily to her brother is an arduous task for her to master.  Though Cubby has some challenges too, they pale into comparison with those of his sister.
Some kids get to sprint, others must face a marathon.  I’m proud of her, and all her efforts.  Truly, her determination takes my breath away.  Her spirit keeps her on track, instead of sitting on the bench.

But I would be lying if I said it doesn’t hurt at times as I watch her get overtaken.  Those tears will have to fall too, useless and indulgent as they may be.

 

Written by Spectrummy Mummy

March 11, 2011 at 7:24 am

On Death

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RIP Jerry

Pudding’s short life has so far been pretty charmed, in that she hasn’t known much loss.  When we’ve gone to museums and looked at animals, I’ve tried to explain that they are not alive, as opposed to the ones in zoos which are alive.  I think she is still a little young to get the concept.

Last year, before I began the blog, Spectrummy Daddy was getting ready to go to Afghanistan.  On an impulse, I decided we needed something to focus on at home while he was gone, and thus Jerry came into our lives.  Pudding is scared of dogs (perhaps wisely, as the yappy dog who lives down the street that started her terror abit me on the leg last week), I’m allergic to cats and various other fluffy creatures.  The lowest maintenance thing I could think of was a fish.  We bought a red betta and brought him home.  A fighting fish would protect us while Daddy was gone!

Every morning Pudding would include Jerry in her goodbyes before school.  She liked to look at him, as did Cubby.  Then, inevitably, I suppose, came the morning when I came downstairs to find Jerry was swimming at the top of the water.  I panicked.  How would she react to this?  Would she be able to understand the concept of death?  She was only 3, a little young for such matters.  Would she grieve?  Would she be angry, or sad, or just not care?  I just didn’t know.  Nowadays  I would have just written a post about it, and waited for your sage comments to guide me through.  Instead, I waited for her reaction to guide me.

Her reaction didn’t come.  She didn’t notice Jerry that morning, and when she went to school, I removed his lifeless corpse and the tank.  When she returned home, I waited for her to notice, but she didn’t.  She never mentioned him, and life for the rest of us continued.  I decided against replacing him.  Clearly I’m not good at keeping fish alive, and she showed no signs of missing him.  Several months passed without a mere mention.

Last week I was emailing her teacher before school, when Pudding approached me and asked where Jerry was.  I was utterly unprepared for the question.  I wondered if she meant somebody else named Jerry, perhaps a character from a book.  I asked her who Jerry was, and she told me, ” a fish.”  I took a breath, and prepared for my first shot at explaining something so utterly beyond me.

Me: Jerry isn’t here any more.  What do you think happened to him?

Pudding: Jerry is gone.

Me: That is right, honey.  He is not alive any more.  He is gone and can’t come back.  Do you miss him?

Pudding: Jerry is gone.  Jerry is gone.

Me: Yes.  What happened to Jerry?  Where do you think he is now?

Pudding: Jerry is gone in the water.  He is swimming in the water.  Jerry is gone in the water.

And then she trotted off to get a book.  The conversation over.  I don’t know if she misses him or not.  I don’t know if she understands.  Maybe in another few months she’ll be back with more questions.  Until then, she is right.  Jerry is gone.  I hope that wherever he is, he is happily swimming in the water.  I also hope that Daddy is around when she next thinks of her little fish friend.  After all, he is the one in charge of religion and frozen desserts.  


Written by Spectrummy Mummy

January 17, 2011 at 8:42 am

My cup of tea

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A picture of Tea and a Biscuit.

Image via Wikipedia

I recently discovered that Pudding has developed a new ritual of talking me through her day as I put her to bed.   She instructs me to get in bed for a cuddle, and then she talks.  And talks.  Sometimes she sings.   She shares.   I love it.  We aren’t yet at the point where she is really talking about her day, but she tells me what happened.  I’m going to introduce talking about my day, the parts I liked and didn’t, and my feelings about it.  We’ll see if she is ready to do the same.

The word “ritual” can have negative connotations, but that isn’t always the case.  Some rituals can offer comfort, create a routine, and mark transitions throughout the day.

In the comments from my post the other day, Courtney referred to her ritual as the glass of wine when she returns from work. Once her ritual takes place, she relaxes and can chat about the day. Pudding’s metaphorical glass of wine is to bounce on her trampoline, or swing. Getting that sensory input is important for her to transition from a day at school. I never realized how necessary this was until I interrupted it.  I think, though I could well be wrong, that this bedtime chat is another way she transitions.  Instead of getting out her excess energy, she is getting out her excess words, or thoughts.  Maybe one day she’ll release her feelings, and feel more peaceful for sleep.

My ritual is in a morning.  I am less human, and more cranky swamp creature in the morning.  My husband dutifully brings me a cup of tea, and that is my transition from slumber to reality.  I punctuate the day with a cup of tea: the morning one, the breakfast one, the evening one.  I know, English ex-pat drinking tea is too much of a cliche to dwell on.  I can manage fine without the others, but that morning one is essential.  I just feel “off” all day without it.  It isn’t a caffeine issue; I’ve been drinking decaf for over a decade.  It has nothing to do with the children; that morning cup has been part of my ritual since I was a child.  There is comfort in beginning my day the same way.  I’ll carry on as long as I continue not to be a morning person.  Just because I regularly wake at 5 these days, it doesn’t follow that I’m any better at it.  My husband will vouch for that!

So just as rituals are important to the rest of us, so they are to Pudding too.  Probably more so, as she starts to learn what her body needs to take away the many stresses of the day.  I just hadn’t realized that she had them until I disturbed them, this discovery was a happy accident for me.  Now that I know, I’ll do my best to ensure I don’t pour away her metaphorical glass of wine, or cup of tea.  I think we all need a little comfort in our day.

How about you?  Do you or the people you love have a ritual that brings comfort?  What is your cup of tea?

Written by Spectrummy Mummy

January 13, 2011 at 7:28 am

Time Out

with 15 comments

Friday was one of those days. You know, you probably have them yourself.  Every time you start a job, it ends up creating more work.   Nothing gets finished.   If I’m to tell the truth, and there is little point in doing otherwise, my whole week had been like that.  Somehow all the things I didn’t manage to get around to earlier in the week turned up overdue on Friday.

I knew it would be a day of chores, and Cubby would not be pleased about that.  At least Pudding is at school all day on Friday.  To appease Cubby, I decided to take him to the Tot Time at the local community center.   It seems every mother in the vicinity had the same idea, and after 20 minutes of overload, we retreated.

I stopped off for cleaning supplies on the way home, then it was time to give Cubby a snack before nap time.  As he finished eating, Pudding’s teacher called- she’d had diarrhea and needed to be collected.  10 minutes before we arrived at the school, Cubby fell asleep.  He woke up as soon as his rambunctious and very healthy-looking sister got in the car.

Parents already know this, but to those of you who aren’t aware, I should tell you that a nap of less than an hour is worse than no nap at all.  It fills the child with a demonic energy that compels him to create chaos and destroy calm.  When you throw in Pudding, that mix is combustible.

I spent the day putting out fires, and by the end of the afternoon I was burnt out.   Any patience remaining was extinguished.

Spectrummy Daddy came home from work and took over, but my bitter mood lingered.  I was shouting at the kids, and they were feeding off my toxic energy.   As I put Pudding in yet another Time Out during dinner, I had a moment of clarity: I was the problem here!

With a dramatic flare that teenage me would have relished, I stormed upstairs with the declaration that I was on Time Out.

I sat on my bed, and after a few minutes the tension drained away.   I could see the funny side.  I contemplated giving myself one minute for every year of my life, but anything after 10 minutes would have punished my husband as much as the children.  I went back downstairs to finish my food.

I swallowed my humble pie as I offered everybody an apology for my behavior.   Really though, the next day that hits me like that, I’ll do it again.   I don’t know why Pudding hates them so much: Time Out is just what I need.

Written by Spectrummy Mummy

January 10, 2011 at 6:59 am

Flat

with 11 comments

I didn’t want to go home.  I was enjoying the warm sunshine on my vitamin D-ficient body.  Knowing that although it was unusually cool for Florida, it was a heck of a lot warmer than where we live.  I liked having easy access to the just-right stimulation my kids enjoy, and the relative ease of finding food they could eat.  I like outnumbering the kids with adults, and all the extra help that means.  But most of all, because I only get it once a year these days, I loved the feeling of contentment of having the people I love most in the same place.

I didn’t want to go home, so I was pretty sour the last day.  I mooched around with a petulance that isn’t very becoming in a 32 year-old woman.  We finally got into the car on Saturday morning and set off.  I didn’t cry, because of the whole British stiff upper lip thing that is my genetic inheritance, but my heart was heavy, and I felt every one of the miles we drove along.

We split the trip into two days.  I cursed yet again that we’d forgotten the laptop, because over 5 nights we stayed in 5 different places, and that is a bit much for anyone.  We could have used a social story right here.  But Pudding and Cubby handled it like troopers, and even slept well in yet another strange place.

Yesterday we set off on the road again, and the rain just didn’t quit.  It was much colder now too, and miserable as we were to return, we referred to the gloomy weather as our winter of discontent.  The drive was punctuated just by the odd stop for food that I hoped rather than believed was GFCF, and gas (petrol) station bathrooms so disgusting that I saw colonies of a new species of fly.

Still we drove.  Right after the last big city, and usual source of traffic jams, we stopped to fill the tank.  Silently congratulating ourselves for the good time we were making- just over 1 1/2 hours form home.  No sooner were we back on the road again, when a warning light came on the dashboard, and we discovered a tyre that looked as flat as I felt.  At this point, you would do well to picture me with a raised fist, cursing the gods.  My plan, such as it was, to get the kids home and fed before dark evaporated.  And now there would be no time to get shopping for Pudding’s school lunch tomorrow.  We waited for the roadside assistance people and then frantically tried to find a tyre place in small town America on a Sunday which also had our tyre in stock.  We found it, but they were very busy, and couldn’t give us an estimate on how long it would take.  We could wait in their office (oh hell no!) or see what was open in the strip mall across the street.

Cold, wet, and wind-battered, we found a grocery store that looked thoroughly unpromising.  I’d never heard of the chain before, and I didn’t expect much from it.  I’ve never been so pleased to be wrong.  They had the largest selection of gluten-free foods I’d ever seen in the state we live in.  This place had more bread than Whole Foods, including the brands the kids had eaten at Disney.  We stocked up on pretzels and animal crackers, and made sandwiches in the store’s attached bakery.

I’m not sure I believe in kismet, but it does seem like we landed in the right spot.  Just in case it was our destiny to stop there, we also bought a lottery ticket.  We returned to the car and after a while it was fixed and good as new.  Almost four hours after the flat, we were back on our way again.

The adversity really changed our minds about the trip though.  Now we were longing to get home, and were thrilled to get the rest of the way without any hitches.  Spectrummy Daddy drove, Cubby slept, Pudding perseverated on a Sesame Street DVD, and I mused about the way something that first appears to be a mild catastrophe can make you truly appreciate your fortune.  Sometimes the universe knows the perfect way to change your perspective.

Written by Spectrummy Mummy

December 13, 2010 at 7:33 am

Love at a distance

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We are on holiday (vacation) with my parents.  When we lived in Europe, we did this a few times.  When Pudding was a toddler, she loved the extra attention, and we loved the extra sets of hands.  When we went to Spain with them, she would creep into their room in the mornings to spend time with her beloved Nanny and Bob.  She would hold their hands to swing, and sit on their laps, and soak up all the grandparent love that could be squeezed into two weeks.

Not any more.

We collected my parents from the airport, and she screamed.  The whole ride back she sobbed, clinging on to my hand.  The gift of a new Upsy-Daisy brought some grudging hugs, but for the most part she keeps her distance.  Is she mad at them for not being around for a year?  Is this just a transition?  Will she get used to them again in time?  She clings to me.  Even at night, sleeping beside me is not enough.  She would melt into me if she could.  I get the overflow, wishing I could turn it in the direction of those who have to remain at a distance.

In stark contrast, Cubby is adoring time with his Nanny and Bob.  It has been over a year since he saw them, but he is overjoyed to be with them.  Watching them interact is like a glimpse of the past.  The easy affection that my girl used to show to her loved ones is gone, her brother has it in spades.  A reminder.  A contrast.  A tiny stab to the heart.

It has been a couple of days, of course.  There is still time to win her over, if she can be won.  Time will be our friend.  Time to squeeze in a year’s worth of grandparental love, even if it has to come on her terms.

Written by Spectrummy Mummy

December 1, 2010 at 7:38 am

What I’m Thankful For

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Today is Thanksgiving Day, for those of you outside the US.  In the spirit of Thanksgiving, here is what I’m thankful for.  Wow, can I really cram all that into a blog post?  I don’t think I could do any of the people I need to thank adequate justice, but I will try.

I’m thankful for the teachers, doctors, and therapists who dedicate their professional lives to helping my children and those like them.

I’m thankful for those of our family and friends who have taken the time to learn about how to better interact with Pudding, and persist in connecting with her as difficult as that might be at times.

I’m thankful for the incredible kindness and generosity certain people have shown us lately- you know who you are!

I’m thankful for those who love and accept Pudding as she is.

I’m thankful for my husband who does everything for us, and who doesn’t back out when he returns home in the evening and sees the crazy that is waiting for him inside.

I’m thankful for my kids, who fill my heart, and make me try harder every day.

I’m thankful for this wonderful community I’ve found online.  I have virtual shoulders to cry on, and new friends to laugh with.  You’re amazing, and it is a privilege to walk this path with you.

I’m thankful for those who get it.

I’m thankful for Skype.  It kept me connected to my long-distance boyfriend until marriage, my husband in a war zone, and my parents on another continent.  It has allowed me to meet my niece and nephew.  It is one thing to talk to someone, and another wonderful thing entirely to see them in real time.  I mean it when I say I can’t imagine living this life without it.

I’m thankful that this holiday is not a UK tradition, so I can legitimately delegate all responsibility for it to my husband.

I’m thankful to whoever posted a gluten-free play dough recipe, which gave me the precious time to write this.

Last of all, I’m thankful to you for reading this.  Thank you for caring enough to read my ramblings these last few months.

Written by Spectrummy Mummy

November 25, 2010 at 9:01 am

Take Two

with 16 comments

Keystone K-48 Bel Air Movie Camera

Image by Capt Kodak via Flickr

Picture the scene: I’ve just put Cubby down for a nap.  I have a moment of peace before Pudding returns home for the day from her preschool autism class.  A phone call disturbs me.  It is one of the researchers from the sibling study.

“I know you have concerns about your son’s development, so I wanted to give you a call before we sent the report.”

I sit down, and breathe in.  I am braced for the bad news.  I am ready this time.

“At this data point, your son does not meet the criteria for an autism spectrum disorder.”

My face is a picture of incredulity.  The camera zooms in to capture my expression.  I remember my lines.  I ask if they are sure, if they scored the ADOS.  I ask if that can really be true.

“Yes.  His scores don’t come close.”

I ask about his self-regulation, motor skills and sensory issues.  I remind them that he is only 19 months old, he could still regress.  Maybe his sister did just that.

“All a concern, but with his language, social reciprocity and joint attention being so good, we just don’t see autism.  We aren’t concerned.  Just keep doing what you’re doing.  We don’t want to see him for another six months.”

She hangs up the phone, and the camera is still fixed on my face.  I have read the script.  I know I should be showing relief, joy, perhaps jubilation.  I want to feel those things, but this is not that kind of movie, and before long, enter the villains, those merciless scene-stealers: Fear and Guilt.  I’m going to have to fight them.  I can handle myself, I do my own stunts.  There will be a montage of battles and victories.

Fear that this scene would repeat itself, just like when the pediatrician claimed my daughter was fine, not to worry.  The pain of finding out otherwise.  I defeat Fear by reminding herself that my daughter is fine, she just needs more support, and she gets it.

Guilt that we missed the signs in Pudding.   That she needed help before, but we didn’t see it.   I let her down.  How do I ever defeat this one?  I remind myself that I didn’t know the signs then.  As soon as I suspected something was amiss, I dealt with it, pursued it relentlessly.  The knowledge wasn’t written into the script until then.  If we’d known then what we know now, it would be different, but I can’t travel back in time.

Actually, I can.  That is the magic of movies.  I just haven’t wanted to until now.  Guilt has kept me from doing it.  I wasn’t ready before to watch home movies of Pudding, but this week I did.  I watched them for Cubby.  And I see it.  I see how rarely Pudding looks us in the eye.  I see how she is fixated on objects around her.  I hear the echolalia that I confused for speaking in sentences.  I see autism in all its technicolour glory.  I see it a little at 12 months, more at 18 months, and strikingly 24 months.  The signs are subtle, but they are there.  But I also saw two parents who are desperately trying to connect with their little girl.  Even when we didn’t know that we had to engage her, that is what we were trying to do.  With that I knock out Guilt.  We didn’t know, but we were still trying.  We were doing our best, with what little skills we had.  Improvising.

And here we are, yet another plot twist.  Perhaps there will be a flashback scene of Cubby staring at fans and lights, or flinching from somebody’s touch to illuminate my confusion.  Maybe the audience will just settle more comfortably in their seats, knowing there is a long time to go before the credits roll.  We really don’t know what is going to happen, whoever is directing this hasn’t shared their vision.  There is a lot of improvisation going on and at times, I wish I could shout “cut” and do a retake.  Whether he is on the spectrum or not, Cubby will make a most charming leading man.  Pudding?  She is the star.  The talented Diva who commands your attention.  I’ll settle for being the supporting actress.  I don’t think there will be an Oscar in it for me, but I enjoy being part of the production nonetheless.

Written by Spectrummy Mummy

November 22, 2010 at 6:40 am