Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for November 2011

Wordless Wednesday 30 Nov 11

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I can't believe she will be 5 at the end of the week. She'll always be like this to me.

Written by Spectrummy Mummy

November 30, 2011 at 8:25 am

H is for Hope

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Lord save us all from a hope tree that has lost the faculty of putting out blossoms.”

– Mark Twain

I was torn between writing about Hope and Hyperactivity for my H post, but hope won.  Hope always wins.  It beats despair and despondency.  It makes us rethink yesterday, enjoy today, and look forward to tomorrow.

I wasn’t always a hopeful person though.  In fact, the fast majority of my life I was a pessimist.  I don’t know if this is unusual, but I became optimistic and hopeful as a person only after the diagnosis.  A defining moment in my own experience as an autism mother was the day I felt hope return, and once it did, I held on tight and decided I wouldn’t let it go again.  If this was to be our journey, hope was going to be our fuel.

Yet you can’t make hope.  You can’t will yourself to feel hopeful.  At the times you most need it, it is the most elusive.  So what do you do then?

You find a hope tree that is in blossom.  If you’re in the depths of winter, find someone in spring.  It may be your partner, or a relative, or a stranger from the interwebs radiating joy in today and belief in tomorrow.  It may be a young child who doesn’t even know what hope is, but who lives as an eternal spring, with all the bounce included.  Find it, and feast your eyes, inhale the scent, feel the sturdiness of the trunk.

It isn’t a hope based on goals and milestones.  I don’t look ahead to a “cure” or “recovery”- if I did, I think I’d still feel the chill of winter, with my hope always out of reach.  But I can’t live so close to my own hope tree without smelling the fragrance of the blossom, and feeling the sun beating down on us.

Hope really is like blossom, it buds and it flourishes.  No sooner are you enjoying another’s bloom, than you feel it germinating yourself.  Then all you need to do is put out your blossoms for everybody else to see.  I’d love to picture our own forest in bloom.  Every one of us experiencing the magical new beginning of the season.

That is what Hope does for me.  It chases away the drab, and lets me see life in glorious technicolour, like the incredible blossoms of the Jacaranda trees here in South Africa.  Almost dazzling in their brightness, yet real enough to touch.

But if you really don’t feel it growing inside of you, try this quote instead.  You may find that you’re already halfway there.

“Scared and sacred are spelled with the same letters. Awful proceeds from the same root word as awesome. Terrify and terrific. Every negative experience holds the seed of transformation.”

– Alan Cohen

This post is part of my A-Z series.  You can read the rest here.

Written by Spectrummy Mummy

November 28, 2011 at 2:30 pm

A Thank You Prayer

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National Day of Prayer

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Dear God (I get that you go by different names to different people, but allow me the familiarity, or at least forgive me for it?),

It is Thanksgiving, so I want to offer up some thanks, as well as ask for a few things.  I think that is how this prayer thing goes.  It has been a long time….but then, you know that already, right?  Yeah you do.

Thank you for making me a mama.  I did think it was a little before I was ready, but in your omniscience (see, we have that in common!) you knew that the exhaustion I feel wouldn’t be any less as I got older.

Thank you for my girl.  Thank you for making her so…Pudding.  I’ve never met anyone so much like themself in my life.  I know you know what I mean by that.  There is no artifice, no pretense, just who she is.  But better than that- she likes who she is, at least at almost five she does.  Can you keep it that way when she is 15 and 50 too?  Can you make sure no one ever puts a cloud over her sunshine?  I know there has to be rain, but let her shine through it.  Let her see the rainbows, hell  let her make them.

Thank you for giving her language.  For being able to say no when she really means it.  It is a gift, I know, and I hope it is one she’ll always make use of.  I know we got very lucky when it comes to communication, so I don’t mind if it is a little jumbled right now.  I like that you made it so she becomes clearer when she is feeling very adamant about something (like requesting key lime pie), so I know that when I’m not around she’ll be able to put her point across.  Now God, could you just make sure everyone listens to her?  Can you make sure I do, at least?  I’ll try my best, but you know how we mortals are.

Thank you for those two times she asked why questions.  I treasure them.  Is she keeping the rest until I have better answers for her?

I very much appreciate it that you made her so loving, and she freely gives me kisses and hugs whenever she feels like it.  Now- and this is an awkward ask, God- can you have her do that for other people who love her very much, but not so much that she hugs random people in the street?  I know, big ask.

If you can’t do that, can you make it so those other people who love her don’t feel snubbed when she doesn’t feel like showing affection on their terms.  Let them know the reasons why, make them more patient, and less hurt.  Oh, and if you have any of that patience and hurt-balm going spare, put some aside for me.  I could always use more of that.  Yeah, I know you know.

Thank you for my boy.  Thank you for making him enough like his sister that they have things in common, and different enough that he is his own little man.  Thank you for making him like sports.  I know his Daddy appreciates that (not to say he wouldn’t have liked him to enjoy musical theatre either, if that comes up further down the line).  Thank you for making him impish and cheeky and naughty, and all those other things that both delight and exasperate all of us.  You did a good job with him too.

Thank you for my husband too.  If Pudding continues to like boys as much as she does now, can you send her one just like him?  Not one who looks like him, to be clear, that would just be creepy.  But send her someone who’ll stick around through hard times, and take her to places she never imagined.  Someone who loves her as she is.  If that is what she wants, of course.  If she doesn’t, let her know that that is okay too.  Oh, and she’ll be at least 25, right?  I can already tell I’m going to find it hard to let my babies go.  You-willing, I’ll do it when I have to, when they’re ready.

Thank you for special interests, for all of them, for every one of us.  In your infinite wisdom, can you please make sure Pudding never likes those Bratz dolls, or anything similar?  Oh, and that goes for Cubby too.  If he continues to like sports the way he does, can you make me a little more interested?  Autism mother I can be, or at least try to be, a soccer mom type is just not me.  Well, you made me this way, I suppose.

Can you make sure his pretty face never gets hurt?  And Pudding’s too.  And don’t let her realize how beautiful she is until she is ready for that kind of power.  And keep me from ever underestimating her like I did in that last sentence.

This is getting to be more asks than thank yous.  Sorry for that, God, is this the way we all are with you?   I wonder if it makes you mad and want to torment us?

While we’re talking….peanuts.  Peanuts!  Thank you God for allowing it to be my son and not my daughter who swallowed those two bites of peanut butter sandwich at school this week.  Thank you for making him okay, thank you so much.  But peanuts?  What is with that?!  A very allergic child, with an impulsive nature and difficulty communicating….I don’t know the mysterious ways in which you’re moving there.  I suppose I could use my ask to just keep her safe from anaphylaxis, but can’t you just uncreate (I know, not a word, but you could make it so) peanuts?  Sure, they’re delicious (heavenly, you might say) in chocolate, but is it worth all that risk?  I say it is not.

Thank you for our life as it is.  It isn’t the life I thought it would be, but again, you did well.  Better than I would have, that is for sure.  If it isn’t too greedy, God, can you make life a little better for those who are struggling?  I know, we have to do our bit down here, but sometimes it is hard to understand how things have to be so difficult for so many.  I suppose I’m not as omniscient as I thought I was.  But you knew that.  I’ll tell Spectrummy Daddy though, he’ll be pleased to hear it.

One last thing God: if you can’t make these things happen, and you can’t make me understand why, can you do one thing?  Can you make it so I never, ever die.  Or at least, I die a minute after I’m no longer needed.  I’d be okay with you sending me down there if you could just do that for me.

Thank you.  Thank you for, well, everything.

Written by Spectrummy Mummy

November 24, 2011 at 2:07 pm

Wordless Wednesday 23 Nov 11

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#youmightbeanautismparentif even after looking into these eyes, you think eye contact is overrated.

Written by Spectrummy Mummy

November 23, 2011 at 9:24 am

You might be an autism parent if…

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…you have days like this.

If you haven’t been following the hashtag on twitter #youmightbeanautismparentif you’re missing out.  While the following events were taking place, I added a few tweets myself.  And then I found it very cathartic, and just couldn’t seem to stop!

Pudding needed an EEG.  I called ahead to the hospital to get a full description of what will happen during the procedure so we can social story it.  I call again to emphasize she has autism and will need accommodations.  They tell me they have lots of experience.  Not with Pudding, I think.  It will only take half an hour, but you should medicate her, just in case.

Yesterday I dropped Pudding at school, then took Cubby for OT.  In a rare moment of convenience, Pudding’s doctor is located in the same place, and I needed to collect her prescriptions.  As I went to open the envelope, the receptionist told me firmly, “they’re both in there” and instead of checking, I just put the envelope in my bag.  I would come to regret that, as we went straight from OT to Cubby’s school concert, and then directly to the pharmacy.

I opened the envelope to find two identical prescriptions for her ADHD medication, not the sedative we needed.  I called the receptionist back, and asked her to fax another prescription directly to the pharmacist.  I had to have that medicine by 9.30 the next morning at the latest.

After collecting Pudding from school, we went straight back to the pharmacy at the mall.  No complaints here- the kids love the mall.  The pharmacist tells me they don’t stock this medication, and I’d need to go to a hospital pharmacy.  Oh, do my kids not like leaving somewhere before they’re ready, but I wanted to get that prescription.

The hospital pharmacy does have the medicine, but they won’t give it to me because I only have a fax, and not the original prescription, and we wouldn’t want to violate section 6 of the something-or-other, now would we?  Throw in another couple of meltdowns, because they weren’t ready to leave there either.

I drop the kids off with Ms. Leia, and speed over to the doctor for the original.  Which they can’t find.  Then they do, and we’re all set….but it is too late to go back to the hospital.  I’ll have to do it in the morning.

After a couple of hours of unsuccessfully trying to get Pudding to sleep, I take over from Spectrummy Daddy.  She finally falls asleep in our bed at 11, only to rise more hyperactive than ever just before 5.  I wake up more tired than I was going to bed, with a cold to boot.  Still, at least I got all my bad luck out of the way the day before, right?

After dropping off Cubby and Daddy, Pudding and I return to the hospital and obtain the magic elixir.  I dutifully wait until the instructed time to give it to her, and watch her promptly spit it back out.  Thank goodness we had a spare second dose, and I try the never-fail approach of bribery to get her to swallow.  It fails.  I have mere drops left, and I decide to take it with us.  She must have swallowed some at least, because she looks drowsy in the car.

We arrive, only to be given forms to complete.  I can’t believe there is more paperwork, didn’t I call twice to explain my daughter has autism?  Giving me forms means I can’t take care of my kid in the waiting room.  Do you think I only call because I like sharing intimate details about my family?  People, I have a blog for that!

After twenty minutes of purgatory- which is getting evil looks from the rest of the waiting room as Pudding shouts about how quiet she is being- the technician asks me where my referral letter was?  My what?  This is the first I’ve heard of such a thing, and it can’t be necessary because I was at the doctor twice yesterday and nobody mentioned it.  They call the receptionist, who I would call by something else were this not such a family-friendly blog, who tells them she’d given it to me in the envelope.  Umm, no.

I think at this point, the staff tire of what we tired of twenty minutes previously (being in the waiting room) and they take us in.  Pudding, though groggy, is bouncing off the walls, and they decide she needs more medicine.  I explain about the whole spitting out thing, and they decide the strong-arm approach would be most beneficial to a young, scared, autistic child.  By the time they’ve pinned her down, held her nose, and squirted in the medicine, I’m crying as much as Pudding, as she begs me to help her.  She is a mess, unsurprisingly.  I am too.

They wait for the medicine to kick in.  It doesn’t.  We call the mean receptionist again to get another prescription, but we never hear anything back.  I keep my terrified cabin-feverish girl in that tiny room of sensory hell as they alternately try to stick wires to her head, then let her sleep.  Suffice to say, neither happens.  I want to leave just as much as my girl, but I know we’ll never get her back for a second try.

After three and a half hours they send in another technician, aptly named Angel.  She gets the wires and bandages on, and between us we get through an EEG.  Why, oh why, did they not send her in the first place?  Now it doesn’t matter.  We’re done, and we don’t have to go through it again.  In one week we’ll know if seizure activity is the cause of Pudding’s sleep problems.  I’m hopeful that epilepsy is just something we can rule out.  I’m hopeful.

You might be an autism parent if you have a day like this, and still remain hopeful.

Written by Spectrummy Mummy

November 22, 2011 at 4:17 pm

Harmony (at Hopeful Parents)

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Hopeful Parents

This post was originally published >here< at Hopeful Parents.

Some days, it is really hard to write.  There are thoughts swirling around my head that I can’t seem to encourage down to my typing fingers.  Is this what it is for Pudding?  Having thoughts that you can’t express?

I think perhaps I have writer’s block.  So much is happening, but I can’t write at all.  It plays over and over in mind.  I lack imagination.

After a year of blogging, the same themes crop up.  I type a post, then delete it entirely.  I’ve said it before; there is nothing new to put down.  But there is comfort in the familiar.  Those little captured moments that are nothing, but mean everything.

Today we went out for breakfast, and Pudding finished first.  Unprompted she told the waitress she had finished and to “take away the plate please.”  That has never happened before, yet it has happened all along.

Old bits of new.  I’ve written it before.  Singing the same tune.  My version of echolalia.

I’m busy now, wearing a few different hats.  Feeling like I can’t dedicate to anything all that I should because there are other pressing deadlines.  I flit from one thing to another, never quite doing anything.  My play is not purposeful.  I’m hyperactive.

At social gatherings, my mind is elsewhere.  I should be making small talk, but remain silent.  It gets too fast-paced for me and I want to shut out the world. Aloof.  Uncommunicative.

When I do snap out of my reverie.  When I do enter into a conversation, how long before I manage to bring it around to my topic of interest?  Not long.  I’m perseverating.
I’ve spent all this time trying to understand her, completely missing the fact that she is just like me.  I find so many similarities between Pudding and the little girl I used to be.  Not so different after all.

She is here at my side as I type, so I hurry to finish.  Just as I find myself in so many ways entering her world, she wants to enter mine.  She is engaging me.  So I’ll leave this post unfinished, because everything that I’ve ever written about is happening right now, and I don’t want to miss any of it.

I ask her what she wants to do.  Sing!

So the two of us will leave our respective little worlds, and join together in our off-key harmony.

Written by Spectrummy Mummy

November 19, 2011 at 11:55 am

Wordless Wednesday 16 Nov 11

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Playing with my kids requires a high level of tolerance- for being squirted in the face.

Happy Wordless Wednesday!

Written by Spectrummy Mummy

November 16, 2011 at 5:55 am

Emotion

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In the words of a broken heart
it’s just emotion that’s taking me over
Caught up in sorrow
lost in my song
but if you don’t come back
Come home to me, darling
don’t you know there’s nobody left in this world to hold me tight
nobody left in this world to kiss goodnight

Emotion, The Bee Gees, Their Greatest Hits: The Record, 2001

Spectrummy Daddy is away on a trip.  It wasn’t such a newsworthy item as his trip to Afghanistan, so we didn’t make a big deal of it.  I’m struggling for time, so I dispensed with the social story and calendar that we used before.  Though I don’t have the worry that kept me company the last time he was away, at the back of my mind it did register that this was the first time since we moved here that he has gone away, and the change in routine could be difficult.

Yesterday morning, I thought my relaxed attitude was working.  Cubby got upset as soon as Daddy left without him (we usually drop him off at work), but Pudding merely commented that Daddy was going on a trip and is coming home on Friday.  I continued to be impressed as she nonchalantly accepted a further disruption to her routine.  Monday was Cubby’s first day at occupational therapy, so instead of dropping him off at preschool first, we went directly to her school.  She was fine.

Her brother, on the other hand, wasn’t.  By the time we arrived at OT, he’d worked himself up into a frenzy, and the first 20 minutes were spent trying to calm him.  The rest of the session was spent crashing, banging, bouncing, swinging, flitting from one kind of sensory input to another, and fully convincing me that we needed to be there.  For a full two minutes afterwards I had a focused, engaged, calm and regulated little boy.  Then he remembered he was upset about Daddy leaving, and I quickly realized it wasn’t going to be worth taking him back to school for the rest of the morning.

We returned home to find our housekeeper devastated by the news that several members of her extended family had been in a fatal accident.  I made her some tea, and asked her to let me know what she needed, and felt the full impotence of another person’s grief and lacked any adequate words of consolation.  Really, this was too much.  I expected her to want to go home (she lives in one of the townships some distance from our home).  Instead, she said she needed to be here, with us, but would leave later that afternoon.

I knew what she was waiting for.  She was waiting to see Pudding.

Pudding and Ms. Leia are friends- on Pudding’s terms, of course.  Ms. Leia knows, as I do, that if you’re patient enough, if you don’t try too hard, if you hold yourself back and let her come to you- this child will be yours forever, and bring sunshine on the bleakest of days.  Yesterday she needed to see Pudding, I know that feeling.

I collected Pudding, who had one of the best days yet, and was smiling and singing songs.  Ms. Leia never spoke to the children of her grief, and I said little more than Miss Leia was feeling sad, which was by no means an accurate description.   By late afternoon, Ms. Leia was no longer crying, and she wore a mask of normality.  Enough to convince most of us, particularly, you’d think, a child who is unable to label or describe, or adequately process emotions.

But not processing emotions doesn’t mean you can’t sense them, or feel them with all that you are.  Pudding knew.  Her friend’s sadness was tangible, more so to Pudding than the rest of us.  She let Ms. Leia hug and hold her for longer than she generally finds possible.  Longer than she can tolerate.  She knew.

When it was time for Ms. Leia to leave, Pudding’s emotions finally got the better of her.  She had a meltdown- she didn’t want Ms. Leia to go, she wanted her Daddy home….everything that had been fine all day was eventually too much.  It had to come out, I knew that.

I was left with all I ever have left when I don’t know what else to say or do…Mummy’s here, Mummy’s here.  When every other emotion is just too much, I’m so grateful that it is enough.

Written by Spectrummy Mummy

November 15, 2011 at 4:44 pm

G is for Google +

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lowercase "g"

Image via Wikipedia

Okay, I have to admit that I’m somewhat cheating on my G post.  Firstly, the only G I could come up with relevant to autism was Gross motor, and other than to say that Pudding hasn’t made much progress with her gross motor skills in some time, I don’t have much to say about that.  Instead, I thought I’d take another look at the way Google ensnares unsuspecting visitors in my part of the web.  If you’ve ever typed in an innocent web search and ended up here, this is why…

caregiving and lifting someone and hurt back Ouch, me too, though is is back to normal apart from a few random clicks and cracks.  Take care of your backbone, people!
kid drinks coffee and acts autistic Well, where to start on this one?  I’d be offended, but I’m too busy giving my children triple espressos.  Oh wait, were you a witness on this day?  Yeah, you might have a point in my case.
i’m living in a constant deja vu Me too.  Wait, didn’t I wrote this before?  Déjà vu of déjà vu- I must be having flashbacks.
how to go to the bathroom in africa Okay, you are my favourite so far!  I don’t venture to speak for the rest of the continent that is currently my home, but I will tell you how I go to the bathroom in Africa: WITHOUT PRIVACY!  In fact, if you happened to be in one of the bathrooms at the mall yesterday, Pudding kindly demonstrated how I go to the bathroom by opening the door too early.  Wait- did you know they have malls here as well as bathrooms?  Did that blow your mind?


surrealist pudding Well done Google, you brought this dude to the right place.  If they weren’t looking for us though, I’m curious…
bichon+frise+bit+me Yes, me too earlier this year.  Cubby swore it was a sheep though.
feeling stressed and anxious being mummy Oh yes, you’ll find that here.  In good news though, you’re just guilt away from being a good enough mother.
what kind of goat cheese would i find at grocery store Oh, so many foodies were inadvertently lured here with the promise of goat’s cheese.
kombi death trap Right?! Actually, I’m finding it a little meta that my G post is referring to me C post.  I feel like Keanu in The Matrix, only I know they didn’t have kombis in the matrix.

paper cut healed but still stings Oh, they do, don’t they?  Now you see why I can’t write about gross motor skills.  Cubby surpassed his big sister several months ago.  It stings, like paper cuts always do.
what is an anticipated problem for a pumpkin patch field trip What kind of super-prepared Scout Leader are you that you’re preparing for problems in the future?  I’m in awe!  Oh wait, I prepared that time we went to the eye doctor.  Still, googling potential pitfalls?  You take it to a whole new level.  I’m impressed!


mummy being prepared Don’t look at me, try to find the person above.


american girl Oh yes, you’ll find one right here.  But you know that she is half-English, was born in Luxembourg and lives in South Africa, don’t you?  Oh, and if you find that complicated, you might not want to read on.

santa mummy Uh-uh, *shakes head*, no way- if Spectrummy Daddy can’t pull it off, I’m not even going to try!
personal space invaders children’s song Is there a song?  That would be awesome?  If not, these Space Invaders might come up with one.


>Here< is the original post I wrote about being googled.  This post is part of my A-Z series, and you can find the rest of those >here<.  Now I have to think about H….H is for help!

Written by Spectrummy Mummy

November 14, 2011 at 7:20 am

Posted in A to Z

Tagged with , , , , ,

The Puppy Stage

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Cubby, my two and a half bundle of energy is in what I call the puppy stage.  I know this because he just bit me, and the last thing to bite me was a puppy.  The time before that, it was Pudding, when she was going through her puppy phase.  If you picture a puppy, wagging its tail in the air and nipping at your toes, you have my boy right now.  He is testing the boundaries, and looking for a reaction.  When he gets one, he finds it funny….at least until he goes on time out.

Last week his teacher talked to me about this behaviour at school.  He has been hitting and crashing his bike into other children, and then laughing at their reactions.  Oh dear.  As a spectrummy mummy, I hear hitting and crashing, and I think sensory.  He is looking for additional proprioceptive input, albeit in a very inappropriate way.  But when I think of him laughing at other children in tears as a result of his actions, I worry.

Cubby is my verbose child.  He understands emotions, and has demonstrated empathy.  He is the first one to tell me if somebody has wronged him, in what way, and how that makes them naughty.  Unlike children with a language delay who lash out in frustration, he can use his words to express himself.  So why has he started to do this?

Is is Sensory or Behaviour?

If you haven’t read it yet, I recommend you take a look at Hartley Steiner’s post  on this very topic.  Cubby’s advantage in life- his verbal skills- might actually work against him in this instance.  I know I’m probably guilty of expecting too much from him.  The ability to communicate well doesn’t preclude him from feeling overwhelmed in a new social situation.  The demands of preschool with intense social interactions, and new sensory experiences might certainly be more than he can handle.  I made my long overdue contact with an occupational therapist who specializes in sensory integration, and mow we’re waiting for an appointment.

Like a puppy, my boy is exploring his new environment with all of his senses.  Like a puppy, he is testing the boundaries.  The problem though, is that until recently, Cubby spent most of his time playing with the only other member of his litter: Pudding.  Unlike most puppies (or children), Pudding doesn’t always respond in an expected way.  Sometimes he would hit her and she wouldn’t notice.  Frequently she would laugh.  Sometimes, but quite rarely, she would hit him back.  The same action on his part gets a variety of reactions.  Often the only way to get Pudding to react to him was to get physical.

When Pudding went through this stage, I was the other member of the litter, and every time she bit or hit me, I reacted consistently.  She learned very quickly that she shouldn’t hit or bite.  Cubby’s learned behaviour is off, as a result of being a younger sibling to a child on the spectrum.  He is taking what he learned through interacting with his sister and applying that to others.  Something tells me that this puppy stage is going to be harder this time around.

Whether motivated by his sensory processing difficulties, or an atypically learned behaviour, the challenge now is to guide Cubby to more appropriate interactions with the people around him.  The good news is the both puppies and little boys can be encouraged to adapt and respond to sensory stimuli in a socially appropriate way.  Though I think our four-legged friends tend to be much more obedient.  Either way, perhaps I should buy a whistle.

Written by Spectrummy Mummy

November 10, 2011 at 2:30 pm

Posted in Sibling

Tagged with , , , , , ,