Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for September 2010

Take my advice…

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Written by Spectrummy Mummy

September 21, 2010 at 6:59 am

Two reasons to be hopeful (at Hopeful Parents)

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This post was originally published at Hopeful Parents.  You can take the link right here.

This week did not begin well.  Just when I’m feeling exhausted by all I have to do for Pudding, and feeling guilty for all I can’t do for her, we receive the news that Cubby is also developmentally delayed.  That same day Cubby cut his finger pretty badly and I had to spend the afternoon at the ER.  When the doctor told me to keep Pudding occupied while they stitched him up, I felt overwhelmed by this feeling of resentment that I couldn’t be with my child when he needed me, because there is no way the other would let me.  I realized that this was the first of many times I will experience this tug-of-need between the two.  I was a long way from being a Hopeful Parent at the start of this week, I even contemplated asking somebody else to fill my spot.

Fortunately the week got better.  Once again we were reminded that we aren’t alone in this, not even close.  And we learned once again that distance is no barrier for love and support.

Over the last year since Pudding’s diagnosis, she has made wonderful progress in certain areas, but she continues to have difficulties with self-regulation, motor-planning, and her fine and gross motor skills remain pretty much the same as when we began occupational therapy.  Any efforts we make to work on these skills are greeted with almost instant meltdown, then shut down.

I was upstairs getting Cubby dressed when I heard the music from the computer downstairs.  She can use the mouse to click into iTunes, but needs help in picking her favorite songs.  She only cares to hear her favorite songs, and demands that any other be skipped.  The music carried upstairs:

You put your right hand in, you put your right hand out…

Oh no, “The Hokey Pokey”.  I’ve tried countless times to persuade her to join me dancing to it, and “Heads, Shoulders, Knees & Toes” and anything else that requires coordinated movement.  Occasionally she will sing along with no attempts at dancing, but generally she is altogether dismissive.  I quickly finish the buttons on Cubby’s shirt to go and help her change the song to one she likes.  The school bus will be here in 10 minutes, and I need her to be in a cooperative mood.  I start down the stairs:

You put your left leg in, you put your left leg out…

I freeze.  Her leg is outstretched, and pulled back in.  She almost falls over with the effort of coordinating her unwilling body, but she brings her own grace to the song.  I stay on the stairs, I daren’t make a sound.  I watch her turn herself around.

You put your right leg in, you put your right leg out….

I’m spellbound.  When did she learn her left from her right?!?  Was she watching me all the time I used to show her?  Was she always paying attention, memorizing the sequence so she could get it right?  All to soon it is over.  One last hokey-pokey, she turns herself around, and her eyes meet mine.  I don’t know what to do.  Do I applaud?  Join in?  Say “well done”?  I make some obscure gestures that are a mix of all of those, but it is too late.  The reluctant performer has ended the show, and calls for another song.

It has been a really hard week.  It is going to be hard for a while.  But if my girl can keep on trying, so can I.  Maybe one day we’ll both be satisfied with our efforts.  I play “If You’re Happy and You Know It” and watch as Pudding and Cubby clap and stomp their feet to the song.  I sing along with my two reasons to be hopeful.  That’s what it’s all about.

 

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September 19, 2010 at 7:11 am

Look, Mummy! (A pretzel in the potty).

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Earlier this summer while Spectrummy Daddy was in Afghanistan I begged requested that Grandma came to keep my sanity visit.  During that time we made Pudding this dress, with matching headband and dress for Sleeping Beauty.  It is not twee if you’re three!  It isn’t.  Shut up!

Today she put that dress on.  I couldn’t find her headband, so I left her to get dressed while I did the same for Cubby.  She managed to find it and called:

Look, Mummy!

I hurried to get there.  This whole “Look, Mummy!” thing is new to us.  One of her IEP goals is to use appropriate ways to gain an adult’s attention.  I love it.  I get to my bedroom and find her preening in front of the mirror.

Look, Mummy, I’m beautiful.

Can’t argue with that one.  Earlier in the week, though, she had done the same thing.  She appropriately engaged my interest, but it wasn’t such an appropriate sight that greeted me:

Look, Mummy!

I found her in the bathroom.  She’d just used the toilet.  I’m not going to talk numbers here, but it wasn’t pretty in there.

Look, Mummy, it’s a pretzel!  I did a pretzel in the potty!

I know, disgusting, I’m sorry.  Just felt like a little toilet humour after this [insert profanity] week!

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September 17, 2010 at 12:17 pm

notes from Tony Attwood: part one (via I should have called him calvin…)

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Tony Attwood’s book on Asperger’s Syndrome was one of the first I read after Pudding’s diagnosis, and it really helped me to understand, or begin to understand a very complex disorder. One of my bloggy friends DQ from http://ishouldhavecalledhimcalvin.wordpress.com recently took notes at his conference and graciously shared them. I wanted to share them with you all, I find it explains a lot!

Well, I have managed to put together the first stage of my notes from yesterday's presentation by Tony Attwood and Sue Larkey.   I would like to say that these are my impression of what was said only, not an exact record of what was said. The first part of my notes is a kind of summary.   I am sure that for many people, these notes will be very familiar and offer nothing new.  I have written my notes to MYSELF, so please interpret them this way, … Read More

via I should have called him calvin…

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September 17, 2010 at 8:42 am

Thoughtful Thursday

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When a friend first suggested I gave Wordless Wednesday a try I wasn’t entirely sure.  I mean, I like writing.  Still, there was something about it that appealed to me, and on Saturday while we were attending a “Fall Festival” (ridiculous to me as the weather has just now cooled down to London summer, it really does not feel like Autumn), I snapped the picture of Pudding touching the tree.  I was hoping to illustrate, at the time, that while all around kids were playing on the playground, bouncing on the inflatables, eating the yummy food, riding the train and the ponies, Pudding felt compelled to do this.  She needed a fix.  Of course, Pudding did all the other stuff too, she was in her element and not at all overwhelmed by the crowds, noises, sights and smells.  She is a sensory-seeker, even a place like Disneyworld has “just-right” stimulation for her.  Touching the tree was the one tiny thing that set her apart that day.

So I was a little disappointed when I got home and realized the picture looked like a girl playing hide-and-seek.  Not that there is anything wrong with that, it just didn’t illustrate what was going on sufficiently, and I felt I had to use words to make my point.  For about the millionth time, I was thankful that I do have the ability to express myself.  I can’t even imagine how frustrating it would be to struggle with something so essential.

I put up my photo, with my caption, and trotted around the internet looking at other people’s WW images, and leaving comments where I felt I needed to.  It was fascinating!  Literally a snapshot into their lives, seeing what makes them tick.  It is a great way to understand somebody who is taking a different journey.  I saw some great images on my travels: skilled photography and candid family moments, the soulful eyes of a dog whose people are out of sight.  And then I found a page that I just have to share with you.  I just love the joyful expression on her face, and I sat for a while marveling at all the different ways nature expresses beauty.  Then I read these words on the site:

“In India any disability is considered as a CURSE.
I want to let the whole world know ‘What a Blessing my child is’. “

Those words have really stayed with me.  Although I’m not a religious person, I feel that my children are meant to be just as they are, and I am meant to be their mother.  I feel blessed to have them.  I have some trepidation of how Pudding’s differences might be viewed in different parts of the world.  We still (sigh!) don’t know where we’ll live next, but I hope wherever we go, my children will always know that they are a blessing to me.  Indeed, to view your child as anything but a blessing is the true curse.  Little Navya and her wonderful parents definitely brightened my Wordless Wednesday.

Coming back to my post, I was struck by a particular comment.  Will had written:

“At first I though “hide and seek, but the truth is even better.”

The truth is even better!  This was what I got out of Wordless Wednesday.  Sometimes we have to look beyond disabilities, and see the true wonder of a person.  And for others like Pudding with no physical signs of disability, we have to remember that what you see is not what you get.  It really is about taking the blinkers of and seeing the real human, and not how we expect a person to be.  When we need to look a little closer, Wordless Wednesday is a great way to do just that.

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September 16, 2010 at 11:58 am

Wordless Wednesday

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My tactile sensory-seeker getting a hit from the texture of a tree trunk.

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September 15, 2010 at 7:30 am

The Good, the Bad, and the Ugly

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Yesterday.  Wow!  I wouldn’t like to do another of those any time soon.  I’m still exhausted, and feeling a little sick.  Forgive me if this isn’t the most peppy of posts today.

Yesterday morning was Cubby’s screening by Early Intervention.  I was worried I’d called too early.  He has a lot of language, but there is something a little off about it.  That was my main concern.  During his last assessment at Kennedy Kreiger, he showed some atypical and repetitive speech patterns that gave the researchers cause for concern about his social communication.  He passed the EI screening for language effortlessly.  There is such a broad range of abilities at this age.  They moved on to screening other areas.  No problems until we got to problem solving.  He failed both tests, and launched straight into a tantrum when he couldn’t do what was necessary.  It is pretty typical behaviour for him, but I just hadn’t perceived a problem in that area.

The good news then, is that he will now go ahead to the eligibility panel and probably to a full evaluation.

The bad news is that there could be a cognitive delay, or at least motor-planning difficulties.

The ugly was when I had to go immediately to collect Pudding from school.  Her teacher, Ms. S., greeted me, told me about Pudding’s day, then asked how Cubby was doing.  She was greeted with the ugly cry from me.  A couple of quick hugs, some consoling words, and we were on our way once again to Pudding’s speech therapy.


No premanent damage- he'll still play the piano, or guitar, or drums...

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September 14, 2010 at 10:13 am