Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘disability

The Journey

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Before we left for South Africa, I referred to our journey as The Flight, and much as it deserved capital letters, it disguised the fact that there were in fact two flights. The first was a tiny domestic flight under 2 hours, the second being a mammoth 15 hours. So in my preparations, I concentrated mostly on the big one. I assumed the first flight would be easy. I was wrong.

We’d had a couple of hiccups before boarding. The van that we booked to collect us was late, and we were all waiting in the DC summer heat for over half an hour. To say that the kids became irritable doesn’t really do it justice.

Going through security was tough for Pudding this time. She refused to let Kelly doll be subjected to the x-ray machines, then became anxious of the (male) security guard. Fortunately we’d chosen the special screening area and there was hardly any other passengers around to add to her distress.

We pre-boarded, and I retrieved one of the Flying Fairy’s wrapped up gifts: a pad of paper and markers. She was delighted, and began to draw. She drew the best rainbow yet, along with a few other sketches. I was pleasantly surprised at how well the gift occupied her.

Once we were airborne, the attendant came around offering a drink, and we pulled down the tray for the first time. When she finished her water, she moved her pad to the tray and continued drawing. She drew a train “for Cubby”, and then a princess. The princess’ gown needed dots.

She raised her hand and with too much force brought it to the paper. I quickly told her it was too hard, and held her hand to help her gauge the amount of force required. But this wasn’t a teaching moment for our heroine. She was incapable of changing her motor action, and again and again she raised her arm for more dots.

The woman in front turned around and told Pudding to stop kicking her chair. Pudding’s legs had not moved until that point, but when she feels threatened she reacts violently. Pudding was scared by the tone of the lady’s voice. I knew the legs were going to kick from that point on.

The woman continued staring at Pudding, waiting for her response. She would have waited a long time. I apologized, and explained that my daughter has special needs and may not have understood. This was not acceptable. So Spectrummy Daddy and I avowed that we would do our best to prevent Pudding from disturbing her peace.

Of course, now that Pudding was ruffled, preventing her from disturbing the peace was easier said than done. Though I managed to prevent her from touching the seat in front by holding her hands and legs, she became very vocal (and loud) in her discontent.

The woman and her husband continued to turn around, give us “the look” and sigh, but I resolved not to make the situation any worse. Still, every stare was a challenge to Pudding. The more they turned around, the worse her behavior became. She was desperate to get off the flight. So was I.

Loud as Pudding was, we’ve seen much worse in other children. Evidently the couple in front had not. I’ve had my seat kicked for the entire duration of a flight, and I don’t think that drawing dots on paper really compares. They complained to each other for the remainder of the flight, making sure it was loud enough for us to hear. I became particularly rattled when the woman wondered aloud why “they are allowed to fly.”

How I wanted to scream at her! Who shouldn’t fly? People with autism? Any special needs? Children in general? Who are “they”? Just anybody who is not the same as me?

But as I’ve written before: when Pudding is worked up, I don’t have the luxury of rage. My only job is to comfort her, because the last thing we all needed on that flight was a meltdown, and we were flying perilously close.

Pudding eventually calmed, and returned to drawing. Her storm had passed, but mine still raged on. The lady became air sick, and I felt my first stirrings of compassion. It is bad enough feeling sick without being disturbed. I was glad Pudding was preoccupied at that time, she tends to repeat that somebody is sick over and over. There is nothing worse, let me tell you, if in fact you are sick at the same time she is pointing it out, ad nauseum.

Soon it was time for the final descent. The husband called for a flight attendant, wanting to know where he would be able to collect his wife’s wheelchair. The attendant explained that they could wait until everybody had disembarked and it would be brought to the cabin door. Instead the wife opted to get off at the same time as everybody else and walk on her crutches.

Her husband moved on ahead quickly (presumably to collect the wheelchair) as the wife moved slowly and painfully through the tunnel to the terminal. Spectrummy Daddy had waited behind to collect our stroller (push chair) and I followed directly behind the lady with Cubby and Pudding.

With her two crutches, there was no room for other passengers to pass. Now I felt for her. Others were trying to get by, in a rush to leave the airport or make their onward connection. Once she had started there was no way to change her mind. She had to keep going until she reached the terminal, no doubt feeling the humiliation of a body that can’t do as she wishes.

Behind me I could hear others becoming impatient. Maybe some were thinking that she shouldn’t have been allowed to fly, much as she had said a little while earlier about Pudding. This woman’s disability had been hidden while she was seated on the plane, no wheelchair or crutches in sight. Pudding’s disability is hidden all the time. Sometimes her autism can inconvenience others, but never as much as it causes difficulties for my girl. This lady and Pudding have more in common than she would ever have realized.

I was still angry, and scared of the impending 15(+) hour flight. I needed a drink to calm my tempest. We made our way to the next terminal, and found a coffee shop. After a short while, the couple arrived and sat a few tables away from us. This lady who had seemed so formidable an hour earlier now looked elderly, frail, and beaten by her efforts. Pudding, no longer hyperactive, looked tired and defeated too.

We’re on the same journey, and yet finding it so hard to really see those traveling with us.

Our table was right next to a piano, and a gentleman arrived to perform. The kids were pleasantly distracted by his music, and before long, I was too. I noticed something around his neck, and realized he was wearing an autism awareness lanyard, and I almost cried. In recognition, relief, solidarity….I don’t know what. When it was time to go to our gate, I gave him the remaining dollars I had left in my purse and thanked him, not just for the music.

And you know, the second flight was better than I’d anticipated. A passenger even apologized to me for disturbing Pudding when she had fallen asleep. We made it.

This can be a Hell of a journey, but it eases considerably knowing that we don’t travel it alone.

Written by Spectrummy Mummy

August 8, 2011 at 2:13 pm

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.

Read the rest of this entry »

Written by Spectrummy Mummy

September 16, 2010 at 11:58 am

Fear you have to live with

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I write this post with a certain amount of trepidation.   For those on the outside who may not be aware, the topic of vaccines is the most divisive in the autism community. It can pit parents against those on the spectrum, and against other parents.  It puts the scientific and medical community against alternative providers and the people who use them.  I hate this division, there are bigger things to fight than one another.  So I don’t really want to write about this debate. I’ve read a lot on both sides, and both make compelling arguments.  There may be different kinds of autism, not just in severity of challenges, but in varieties too.  Some may be genetic, some may be toxin-caused, and some may be a mixture of both.  There may yet well be an as yet undiscovered auto-immune element to autism that will vindicate both sides. I don’t know, I may never know.   I just have to make the decision for our family, because we have Cubby, and last week we had his appointment for his MMR.

When we look back at how Pudding was as an infant, before she even had any vaccinations (she was born in Europe, different vaccine schedule) she was intense, required more sensory stimulation than other babies.  Of course, I didn’t know that then, but it has become more developed over time.  There are family traits that can’t be ignored.   She never had an adverse reaction to her vaccines.  Everything points to her variety of autism being inherited.   Don’t get me wrong, I still went through the process of blaming myself for some unknown event during my pregnancy or her infancy, but the evidence just wasn’t there.  I just think she was born with this neurological difference, I don’t think her brain was damaged by toxins.  I fully appreciate, however, that this isn’t the case for everybody.

So the rational part of my brain had no qualms about taking Cubby for his MMR. I thought of the evidence.  I considered the opinions of medical professionals I trust.  No problem.

Except…Fear isn’t rational.  It takes facts and evidence and turns them upside-down.   And when I was in the room waiting for the nurse to come back in, I worried about if I’d got it wrong.  I was thinking of accounts I’d read about children who were typically developing until they got the MMR, and the child they knew disappeared.  I was thinking about how it would feel if this was one day revealed to be the cause.  What if he developed a more severe disability than his sister?  The answer is, we’d accept it.  We’d live with it.  I thought I’d got over blaming myself, but here I am, still thinking that something I do could affect his outcome negatively.   Am I ever going to stop doing that? Spectrummy Daddy and I had discussed it, and concluded that we needed to give him the shot, but Spectrummy Daddy was at work.  I resented that I had to be there, that ultimately it was down to my say-so.  So it was just me, Fear, and my two beautiful but quirky kids in that room.  I would do anything to save those kids from harm, and with Fear in the room, I felt they were about to be attacked.

Cubby had his vaccines, but I didn’t defeat Fear.  There is something every parent is more afraid of than autism.  There has already been a reemergence of measles.  It can be fatal, particularly in less developed countries, like the ones we might potentially move to next year.  If I made the choice not to vaccinate, and the worst happened, I couldn’t live with it.  When the rational part of me was gone, and I’m left with fear on all sides, there could only be one choice.  I went with the one I can live with.

Now that Fear has moved on, and I’m back to being my somewhat rational self, I find I can live very well with my decision.  Fear has definitely overstayed its welcome though.  It is time it found somewhere else to live.

Written by Spectrummy Mummy

August 26, 2010 at 7:02 am