Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for December 2010

Wordless Wednesday 22 Dec 10

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Christmas 2006

 

Christmas 2007

Christmas 2008

Cubby Christmas 2009

Pudding Christmas 2009

 

 

Pudding Christmas 2009

 

Christmas Past.

Wishing you all a very Merry Christmas, and a Happy Wordless Wednesday!

Written by Spectrummy Mummy

December 22, 2010 at 8:40 am

The Party

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A rubber duck.

Image via Wikipedia

On Saturday we held a party.  Now, you’d think as a Diplowife, I’d be a practiced and efficient hostess, but not so much.  As we were out of town for Pudding’s actual birthday, this celebration came two weeks late.  This would be fine, were it not for the fact that it was now a week before Christmas.  As a December baby, for Pudding the whole thing just clumps together, and as this party approached it became clear that holding a party this close to Christmas was just a bit confusing.

As usual, when our guests first arrived, Pudding became upset and very clingy.  We always have a 20 minute period where she needs to adjust.  As time went on, she settled down.  She happily made a craft with the other children, and enjoyed all the food, we had separate tables for allergic and non-allergic foods, which worked surprisingly well.  Pudding opened her gifts with glee, and had become so comfortable by this point that she happily went around giving hugs and thanking our generous guests.  Before long she was frolicking on  the floor.  I was touched by a couple of our friends saying how well she was doing.  It is always nice when her efforts are recognized. It is particularly welcome when people who don’t walk in our shoes try them on for a while.  Our friends had taken such great care to choose gifts that Pudding would love and be able to use.  I truly appreciate the thought and effort that went into their choices.

I served cake, but opted not to sing Happy Birthday.  The reason I gave was the whole too-close-to-Christmas-confusion thing, but a more honest reason is that I couldn’t find the candles and had no time to get more.  See, told you I was a poor hostess.  Nonetheless, we did have a sing-song.  As was clear to all by the grip she had on her new Ernie doll, not to mention the endless repetitive questions about said toy, Pudding has a new special interest.  I only wish I’d been able to capture on video the entire room spontaneously bursting into the Rubber Ducky song.  Everyone celebrating her passion was such a special moment for my girl.  Our girl.

I’ve talked before about how being a spectrummy parent can make me feel a disconnect with others, like a stranger amongst friends.  It is equally true though, that I’m gratified beyond words by the way our friends will show us that we aren’t walking this journey alone.  By Pudding’s next birthday, we’ll likely be living on another continent, but there will always be room for the people I’m honored to call friends.  And if they come to visit, you can guarantee I’ll throw a party.  Hopefully my hostessing skills will have improved by then!

Written by Spectrummy Mummy

December 21, 2010 at 7:06 am

Santa Daddy

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The Christmas right after Pudding turned two, we drove from Luxembourg to the north of England to celebrate Christmas with my family.  As my parents own a hotel and it was full for the holidays, we also got to meet the many friends and guests who were staying.  Pudding actually thrived with all the attention, which is hard to imagine these days when she is more easily overwhelmed in company.  It was busy, so we were called on to lend a hand with all the festivities.  Spectrummy Daddy was given the task of wearing the Father Christmas (Santa) costume, and distributing presents to the guests.  I kept Pudding out of the way, as she had a tendency to think all gifts were hers to unwrap at the time.  She still does at times.

We waited in the room until we heard a knock at the door.  In walked my husband still in his Santa outfit.

Pudding’s face lit up.  “Santa!”, she exclaimed.

“Ho, ho, ho.  Merry Christmas, Pudding!”, Santa replied, in a suitably booming voice.  To me ears, he sounded just right.  To Pudding’s super-sensitive hearing powers, not so much.

Pudding responded with just one word: “Daddy.”

Frantic looks were exchanged between myself and Santa.  We couldn’t have just destroyed Christmas for our 2 year-old, could we?

Me: “No, no, Pudding.  Look, this is Santa!

Pudding: “Santa.  Daddy.  Santa Daddy, Santa Daddy, Santa Daddy!”

There was no changing her mind.  Santa Daddy it was.  Even now, two years later, when she sees that picture she tells me it is Santa Daddy.  At least we got an adorable photo out of the whole ordeal.

Almost as cute as this one taken the next day:

Written by Spectrummy Mummy

December 20, 2010 at 6:48 am

Oh Christmas Tree, Oh Christmas Tree (at Hopeful Parents)

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This post was originally published at Hopeful parents.  You can find the link here.


Hopeful Parents

For Pudding’s first Christmas, I began a new tradition of collecting Christmas ornaments from the various places we visited.  Over the first couple of years of her life, we picked them up from Belgium, Luxembourg, Germany, and France.  I particularly like the handmade wooden ones from that part of the world, and we enjoyed traveling to the Christmas markets in search of new ones.

Like many other families, following Pudding’s ASD diagnosis, our lives were forever changed.  Instead of moving on to another country, we decided to remain in the US for a tour to learn all we could about the various therapies and supports she needs.  Now there is no budget for travel.  The only place we have been as a family in the last year and a half is to Florida to visit family.   I thought my ornament collection would dwindle to a halt, but I was wrong.

This year Pudding helped me to decorate the tree.  As placed each one on the tree, I told her the story of each one.  What I didn’t realize until then, was that I’d unwittingly started a second collection of ornaments.  I unwrapped a Bambi ornament, the nickname we’d given her before she was born.  Next came a “Where the Wild Things” ornament we’d bought back when she insisted upon hearing that story every night before bed.  Then last year, we’d got her a Sleeping Beauty ornament when that became her special interest.  One day over the summer at a craft fair I even found an ornament with Bashful.  All the special interests my girl has ever had our hanging proudly from our tree.  This year I’m going to have to find an ornament with Sesame Street’s Ernie for Pudding, and a train for her brother.

It occurred to me then that our Christmas tree is still telling our story, it is just a different journey now.  This weekend we had a party, and as an activity I helped the children make Christmas tree ornaments.  Even a year ago Pudding wouldn’t have had the fine motor skills or patience for such a task, but with a lot of help, she made her own ornament.  I’m going to hang it proudly on our Christmas Tree.

That ornament tells the best story of all.

 

Written by Spectrummy Mummy

December 19, 2010 at 8:04 am

Advocating for Santa

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Custom Santa Suit, http://www.costumers.com

Image via Wikipedia

Disney had given me another kind of magic.  Being in a place where my kids got the accommodations they needed, I got to see them have just as good a time as any other kid.  Normally we avoid certain things, or we tentatively try them with me hanging around the periphery, ready to pull out in case of disaster.  But at Disney, all I’d had to do was ask for the supports my kids needed, and they were given.  Which leads me to think, maybe I just need to ask more.  Maybe instead of feeling like I’m putting people out by asking for certain things, I should instead approach as though my kids are entitled to enjoy the same experiences as other children, and I have every right to ask that they be included and assisted in that goal.

I know, you’re probably wondering why I’m not there already.  After all, Pudding is in the public school system, and receives numerous supports which, while not taking for granted, I do accept as her right.  But the law here explicitly states her entitlement to a free and appropriate education.  I don’t have a hard time pushing for what she needs there.  It is when there is no legal framework in place, when we rely on goodwill that I find it harder to insist on such supports.  When I think, wouldn’t it be nice if she could do X like the other kids, but we don’t because it is too hard.  I loved taking Pudding to a sensory showing at the cinema, but until now, I’ve held back on asking.

I’ve been looking for a Sensitive Santa for a while now.  We just never seemed to be in the right place at the right time, and eventually I gave up for this year.  We’ve just been too busy, and I haven’t had time to talk it through with Pudding.  We walked into a mall in Orlando, and saw the familiar site of families queuing up to get their pictures taken with Santa.  He wasn’t a “sensitive” one, but nonetheless, out of nowhere I became determined that Pudding and Cubby took part in this quintessential childhood experience.

I approached the staff, and asked explain that Pudding found it impossible to wait in long lines.  I asked if they could suggest a time when we could return without having to queue.  The lady consulted with another, and the next thing we knew, we were being ushered to meet Santa that very minute!

I’d love to say that Pudding jumped on his lap, and told him what she wanted for Christmas, but with no explaining or coaching, that was never going to be.  She refused to sit on his lap (rightly so, as we spend the rest of the year ensuring stranger danger), but she was content enough to sit with me next to him.  Cubby screamed his little heart out, but calmed down enough when Daddy took him to sit on his lap.  In the end, we got a group photo (including Ernie) that is acceptable.

More than that, I got a lesson that it is okay to ask for what my kids need.  Being an advocate doesn’t just happen at school, I need to get comfortable with doing it all the time.  So comfortable, that when those beautiful big eyes are watching me, they see that it is okay to ask for what you need.  I can’t think of a better present to ask from Santa.

Written by Spectrummy Mummy

December 17, 2010 at 7:58 am

All I want for Christmas is….Me!

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AutismLearningFelt
The theme of this week’s Special Needs Blog Hop for this week: What I Want for Christmas.

I’ve already found what I want for Christmas and added it to my Amazon Wish List.

It is Me.

Yesterday I was on Facebook, and I went to close it down, but instead I clicked the area above it, where my “Add to Wish List” button from Amazon is located.  Immediately it linked up my profile to my Amazon Wish List.  Imagine my delight when I found I could purchase myself, for the very reasonable price of $5.99!

I left myself on the wish list, because I can think of nothing else I need more.

Another me to do the housework while I play with the kids.

One to play with Cubby and one for Pudding.  No guilt over divided attention.

I could stay at home with the napping Cubby while driving Pudding to her therapy appointments.

There would be a me to stay home with the kids while another went on a date with the hubby, or had a girl’s night out.

Let’s not forget the homesick me who could fly back to England for Christmas while the other one got to stay here.

I think I might win a prize for the most narcissistic wish, but I’m not deleting me from my list!

Written by Spectrummy Mummy

December 16, 2010 at 4:47 pm

Interpreting

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While in Orlando, we went out for dinner with our Best Man, Chandler*, and his wife, Joanie*.  We were able to leave Cubby with my parents, so Pudding got our full attention.  She was, as usual, initially quiet (anxious) with unfamiliar people, but gradually became more at ease.  Pudding talked about the pictures she was drawing, and her new special interest: Ernie.  That evening she had a thing about whistling, something she can’t do, but is currently fascinated by other people doing.  She asked me to whistle, and  dutifully obliged, and stopped when she ordered no more whistles.  Then she told me she wanted Joanie to whistle.  I wasn’t going to let her off that easily, and told Pudding that she would have to ask herself.  She did, and Joanie also followed our little dictator’s orders.  We repeated this with Chandler too.

Joanie, quite reasonably, felt that the ice was then broken, and conversation could be made.  She asked Pudding a simple question, something she knew Pudding would be able to answer.  I can’t remember specifically what it was, but probably something about how old she was, having just celebrated her birthday a couple of days earlier.  Of course, Pudding ignored her.  I took over, as I frequently do, and asked Pudding directly how old she was, and Pudding answered.  I don’t know why, but she does this all the time.  It might be that she just isn’t paying enough attention to other people to catch their questions.  It might be that she is too nervous to give a response, and she feels more comfortable with a question coming from me.  I don’t know.  Even given plenty of time, she remains aloof.

What followed was a conversation of sorts, with Joanie asking questions, me repeating them, and then Pudding responding.  Parents do this interpreting thing naturally.  You might not know that when Cubby says raff-raff, he means giraffe, because you simply don’t spend as much time with him as I do.  We become masters at decoding what our kids are trying to say.  Perhaps even more so when our children present with communication difficulties.  We interpret because we have to.  Sometimes we are the only ones who can decipher what they want to say, and form a bridge between the parties present.

Lately though, I’ve been feeling increasingly uncomfortable in my role as Pudding’s interpreter.  During that dinner, I wished I could have just sat back, and let the exchange happen without me, however stilted or one-sided that may have been.  Clearly, Pudding still has significant difficulties with social communication.  She can be a chatterbox at times with myself and Spectrummy Daddy, but adding a new person to the mix simply overwhelms her.  I need to keep acting as that bridge until she no longer needs it.

After that meal, I thought hard about why I so dislike playing interpreter.  A friend of mine has been in a wheelchair all her life.  She is intelligent, articulate and social.  She can talk, she just can’t walk.  When we were younger and out together, some people would address me instead of her, even if she was the one buying something, or they wanted to know about her.  It drove us both crazy, and we’d get fired up in righteous indignation.  Just because someone has a physical disability, they are to be denied a voice.  My friend Rebecca* would take great delight in turning such assumptions around and establishing her independence.

And so to Pudding.  I dislike being her interpreter because I fear I’m increasing her dependence.  I’m a crutch that is disabling, rather than enabling natural and spontaneous interactions.  Am I facilitating a conversation, or am I reinforcing an inappropriate way of communicating?  No, I’m not speaking for her.  Yes, I’m trying to encourage her to become independent, but for some reason I feel that I’m doing the opposite.  She is still young.  I hope and expect she will continue to develop her social communication skills over time, with assistance from her teachers and therapists.  I expect I’ll grow in patience over time too, and if this is what she needs me to do, I’ll continue to do it for as long as I have to.  It appears to be another one of those duties that falls under my job description as Spectrummy Mummy (can you tell I used to work in HR?).  I know there are mothers who would long to have a child with Pudding’s communication skills.  I’m incredibly grateful that she is verbal.  It is my role in her communication with the rest of the world that I’m still trying to interpret.

*Names changed to protect the innocent.

Written by Spectrummy Mummy

December 16, 2010 at 6:52 am