Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘caring

Backbone

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I might have done it at any point during the last week.  It might have been as Pudding climbed up my body and held on tight as she refused to go to school.  It might have been any day I had to scoop up Cubby to take him home from Pudding’s school, because he wanted to stay there.  It might have been bending down to put on shoes, or picking up discarded toys.  It might have been pushing Pudding on her indoor swing to get the vestibular input that she needs.  But I think I hurt my back on Tuesday.

On Tuesday I’d gone with my another mother to a playgroup with her kids.  She thought Cubby might enjoy it too, and she was right.  The class was run by an occupational therapist, designed to get toddlers involved with sensory-motor play.  Pudding is only in school in the morning, and I wasn’t sure how she’d do in the class, but we went along away.

Almost immediately, Pudding was overloaded.  It was busy and over-stimulating.  The room was filled with toddlers and their mothers, and all over the walls and hanging from the ceilings were props from that week’s theme: nursery rhymes.  Pudding ran around to touch everything, which was the whole idea, but Pudding doesn’t know her own strength, and I had to leave Cubby as I trailed around making sure she didn’t break anything.  It was time to sit down for the class, and Pudding didn’t want to sit.

The music began.  It was loud.  Too loud for both my kids.  Too loud for me these days, feeling every sensory assault for them, even if my senses are perfectly in sync.  Cubby spied some toys outdoors and began hammering on the patio doors to get out.  I was still holding Pudding down, and unable to bring him back to the circle.  Eventually I made myself heard over the music, and by some miracle he returned.  There were songs and dances, and soon Cubby was participating, so we stayed.  Pudding quieted down and remained on the mat beside me.  Then it was finally time for outdoor play.

All the kids stampeded outside, but for one: Pudding.  She was curled up in the child’s pose, her arms wrapped around her head.  The din was too much for her.  I stroked her hair, and asked her to come outside.  She didn’t hear me.  She’d protected herself by withdrawing.  I pulled her into my lap and she closed her eyes, her senses too confused to adequately protect herself from the onslaught.

I needed to get her away from the noise.  I picked up all 50 pounds of my incredibly tall 4 year-old, and carried her outdoors.  Instantly she was better, but I paid the price as I pulled the muscles in my back.  It still hurts if I bend down, twist my spine, or lift something up.  I don’t know about you, but I’m always bending down, twisting, or lifting something, or someone up.

If you are a caregiver, the chances are that at some point, you will hurt your back.  Perhaps your loved one has a physical disability, and you help to move them from the wheelchair to another chair or bed.  Maybe you are a carer for someone like my girl, who has balance problems, and seeks support by hanging around your neck, throwing your center of gravity off.  It could be that you are at times hugging or carrying your child as though they are still a baby, only they weigh several times what they did as an infant.

In the last few months, life has been hectic.  I’ve slipped with the one thing I shouldn’t: taking care of myself.  I didn’t bring any workout videos with me in the air baggage.  I intend to join a gym as soon as the kids are both settled in school, but we’re not there yet.  It will absolutely become a priority now.  The kids are depending on me, perhaps a little more than most children depend on their mother.

At least this was only a minor injury, and I’m sure to recover very soon.  I’m glad for the reminder to take care of myself, keep myself healthy, both emotionally and physically.  I’m the backbone, the support for the family, and I intend to be that for as long as I have to.  I need to be strong.

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Written by Spectrummy Mummy

August 28, 2011 at 2:32 pm

Social Smiles

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Pudding, 5 weeks

Yesterday I watched a friend enjoy the smiles of her infant- trying to determine if they were the first deliberate social smiles.  I remember once watching a documentary on human behavior which speculated that babies begin their “social smile” to caregivers at around 4 weeks old, because that is precisely the point at which a sleep-deprived parent needs something in return for taking care of the demands of a newborn.

Pudding met all her developmental milestones for the first two years of her life, and her first little smiles at one month were no exception.  Of course, I completely took those magical smiles for granted a the time.  I never knew how lucky we were to get them, nor how hard it might be to care for another without that basic reciprocal exchange.

We expect parenting to be about hard work and self-sacrifice at times, but the very fact that children are typically hard-wired to demonstrate emotional attachment in return indicates that we as humans find that difficult to do without reward.  So naturally, it gets harder to parent a child who is not hard-wired in this way, or desires interactions only intermittently, or whose sensory needs interfere with that normal process.  Behaviors seem more challenging, relentless even.  I wrote about my version of finding that difficult in my post on Friday.

Just like how the baby’s first smile comes in the nick of time, our community pool finally opened on Saturday.  Though we had other chores to do in the morning this weekend, we spent the afternoon at the pool.  The smile on her face told us Pudding was in heaven.  She was sated.  She got the input she needed, and peace was restored to our family.  As soon as she was in the water, she began interacting more with us, wanting to play games.  Back to being a happy family.  Not to mention that with Spectrummy Daddy home from work for three days, I got to take my shower every morning.

Of course, we are back to the normal routine today.  Pudding is back at school, we can’t go to the pool until late afternoon.  On Friday I’d emailed my friend complaining about how I had to give up another thing, and I was really running out of things to give up here.  But I was looking at it all wrong.  Though we can’t manage it all the time, saying yes to what Pudding wants makes all our lives easier.  Instead of giving up, I need to look at it as gaining something, like the new parent trading sleep for the baby’s smile.

I just have to find a way to make sure it doesn’t have to mean saying no to me all the time.  I tried taking a shower with both kids this morning, but I won’t be trying that again- Cubby felt crowded in there.  Tomorrow I’ll try the morning bath for the kids, and I’ll delay my shower.  I’m certain I’ll find a solution sooner or later.  Let’s hope that is enough to out a smile on all our faces.

Written by Spectrummy Mummy

May 31, 2011 at 8:43 am

Cosmetic Fix

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Lipstick

Image via Wikipedia

Cosmetic
–noun
1.

a powder, lotion, lipstick, rouge, or other preparation for beautifying the face, skin, hair, nails, etc.
2.

cosmetics, superficial measures to make something appear better, more attractive, or more impressive.
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Spectrummy Daddy and I went out on a date on Friday night to celebrate our anniversary.  We get out together every 2-3 months, which is seldom by anyone’s reckoning.  Our plan was to get the children to sleep and then I would collect my friend B, who was babysitting.  I’m convinced the kids knew we had plans to ditch them, because they took even longer than usual to get to sleep.  By the time I got Cubby down, it was already half an hour later than when I said I’d pick up B.  I hadn’t tidied the house, changed clothes, or done my hair and make up.  I left Spectrummy Daddy to tidy the house while I tidied myself up, as best I could in less than 5 minutes.
I got dressed, very quickly applied foundation, powder, blusher and mascara when I came to an abrupt halt.  No lipstick.  I no longer owned a single lipstick, or lip gloss.  In the five years that I have been married, and (for the most part) not employed, I’ve seen no reason to buy make-up.  The make-up I owned before getting married has lasted me until now.  I know, you’re supposed to get new stuff every few months or so, but it always seemed like such an unnecessary luxury on one salary.  As I don’t wear make-up on a day-to-day basis, Pudding doesn’t really know about cosmetics, which I’m okay with.  I don’t want her to be insecure about her appearance.  I want her to know that pretty is meaningless, and she is truly beautiful, inside and out.  On the odd occasion that she has seen me dressed up and wearing make-up, I get a “pretty mummy” compliment from her, but she doesn’t know the artifice involved in my appearance.
This does not mean she has no interest in make-up.  Presumably to her it just looks like art supplies, and Pudding is an artist.  Lipstick is particularly appealing with the colours, twisting mechanism, or little dabbers and brushes.  So over the last few years, every single one of my remaining lipsticks has been smeared onto walls, clothes, and carpets, until finally on Friday night I discovered there was no more.
All evening, I just didn’t feel right.  My appearance was off, and it made me uncomfortable.  Suddenly my clothes felt tight, and I felt all the weight of a stone (14 pounds) heavier than I was when I got married.  I know how vain that sounds, but I don’t think of myself as a particularly vain woman.  These days I cut my own hair, and I don’t go for facials, massages, manicures and pedicures, like my friends.  I can’t seem to figure out how to devote enough time to myself, when I already feel that the kids don’t get enough of me.
Last week I showed Pudding my wedding photos.  I asked her who she saw, and she said, “Daddy.”  I asked her if the lady was Mummy, and she replied, “no, that’s not mummy.  That’s pretty mummy.”  It made me smile, but there is a difference between the woman in those photos and the one I am now.  Not just a difference in beauty, but a difference in self-esteem.  That woman knew how to take care of herself.  This one is too busy taking care of everyone else.  That woman was fit, relaxed and energetic.  This one is dull, tired and worn out.  Once in a while, I miss the old me.
On Saturday we went to the mall, and I visited Sephora, which has been my place of worship since I lived in Paris.  I bought products for my lips, cheeks, eyes, and skin.  I even bought new products I’m going to have to google to find out how to use properly.  Apparently five years is a really long time in the cosmetic world, things have changed.  For the quarter of an hour or so in there I concentrated solely on me.   It took me back to lunchtimes on Oxford Street picking a new eye-shadow to go out that night.  It felt really, really good.  And anyone who says you can’t buy self-esteem has never seen me spend $75.60 and fifteen hedonistic minutes in Sephora.
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I do realize though, that these are nothing more than “superficial measures to make something appear better, more attractive, or more impressive.” I know that I have to get some time for myself, exercise, and find some way to get the kids sleeping well so that we can too.  But until then, I can put my mask on, and feel good about myself.  Because a cosmetic fix will work, for now.

Written by Spectrummy Mummy

November 15, 2010 at 7:05 am

Thinking about the unthinkable

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Today I read on the always amazing A Diary of a Mom blog about yet another tragic murder of two children with autism by their mother. Jess writes perfectly about the horror of this act, the grief we feel, and how unthinkable it is.
And yet, I feel myself thinking about it a lot. If I haven’t made this clear in my previous posts, let me say right now how lucky I am. Lucky that we have hope for the future, lucky that we have more good days than bad days, lucky that even on those bad days, I have amazing support from Spectrummy Daddy, and our family and friends.
I’ve written before about the cost of having a child on the autism spectrum, but there are other costs too. The challenges can bring conflict to a marriage, the stress can damage a caregiver’s health, careers are put to an end, with the sense of fulfillment they often bring. I’m very fortunate so far, but I’ve seen all of this.
Long before I was a spectrummy mummy, I was a volunteer carer, along with my parents. I worked with adults (amazingly none of which were on the autism spectrum, or at least diagnosed as such) and my role was to give them a day out of their week to look forward to. We’d do whatever was enjoyable for the client- be that a day trip to the seaside, a restaurant for lunch, a game of bingo, or just sitting around chatting over tea. There was a lot of tea.
My undisclosed job, however, was to bring a much needed break to the individuals and families taking care the rest of the week.  Sometimes a spouse or a guardian would tell me that they just couldn’t wait a whole week. That they lived for that one day off, and I would get a sense of their desperation and hopelessness. It was a glimpse of the darker side of taking care of another individual all the time. It was no problem, I’d call up my support worker, and go from one day, to two, three, even five. Whatever was needed. My parents would offer up their home for a week or two, a real break, both for the individual and their family. Just to make sure the caregiver never got too close to the edge. So they could carry on with love, and doing what needed to be done. After all, it was cheaper than placing somebody in an institution, as far as the local government was concerned.
Even though this was a relatively small amount of my time, people would tell me they couldn’t do what we did. I would think even then, about how life doesn’t always offer you a choice. That your healthy spouse, parent, or child may not always be that way.
Though people don’t like to do so, it is acceptable to place an aging parent in a rest home. It is less so for a parent to do the same with their child. Yet the challenges can be very much the same, the supports just as limited. And those caregivers who needed a break, did they know how desperate they sounded? Would a break prevent a tragedy? Would support have prevented that mother from such a heinous act and saved the precious lives of those children?
Sometimes you don’t know how close you are to the edge.  Sometimes you don’t know you need help. This tragedy was unthinkable, but we really need to think about it. All of us.

Written by Spectrummy Mummy

July 23, 2010 at 9:14 am

Posted in autism

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