Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘support

Here and There

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Tuesday was a really hard day.  We haven’t had a break in a while, and I was itching to escape.  I booked a night away at the weekend, but it has been a relentless run of a couple of months without stopping, and one night away seems like too little, too late.

After another draining day at work, I collected the kids from school, and got ready to head back out- Tuesday evening was the back-to-school open evening for parents at Pudding’s school.  No time for dinner.

To say I didn’t feel like going out there would be understatement.  The school is a 45 minute drive at the best of times, and after dark in Johannesburg?  Not so much the best of times.  I try my best to avoid ever driving alone at night.  But Spectrummy Daddy was staying with the kids, and I felt like I couldn’t not go.

Traffic was even worse than usual.  I left at 5:10 to be there in plenty of time for a 6:30 start, but I soon realized it wasn’t going to be enough.  All in all, seven (7!) traffic lights were out on the busy route, and not one of them policed.  I turned on the radio only to hear that the alternative route by motorway was in the same condition.  As day turned to night, and gridlocked in traffic, I felt a growing sense of unease.  My frustrations darkened my mood further, and I let myself go…there.

There is where I imagine an easier life.  Where we live close to family and friends, and I can count on them to give us a break when we need one.  There is my kids going to a local school and growing up with the same community.  There is building a life for us, and living it- not having to do the same thing over, and over, in far away lands.  There is easy.  Here is hard.

My legs were cramping from riding the clutch for so long that I almost missed driving an automatic.  I did my best to avert my curious gaze from the casual prostitution happening at a particular traffic light where I idled for too long.  I wanted to call my husband and tell him I was done with here, with this whole Foreign Service life, but I know better than to use a Smartphone here while driving alone in the dark.

Finally, finally, at just after 7 pm, I arrived at the school.

The Director saw me first, and gave me a friendly greeting on first name terms.  Next I saw the mother of a child who was in Pudding’s class last year.  We hugged, and I started to feel better.  Next I got to check out her new classroom, where she’d left me a note asking to check out her “portit.”

I left her a note in return, then got to check out her new classroom, taking note of the many accommodations. As Ms. A, her new teacher had previously let me know- these supports are actually beneficial for all kids, and having them available to all ensured that Pudding isn’t singled out.  I felt all my tensions slip away.  My girl, she is right where she needs to be.

Next I got to meet Pudding’s art, music, and PE teachers.  I had to smile as the new teachers shifted from polite interest to excitement as they found out I was Pudding’s mother.  That kid really is a rock star, and I loved hearing all the anecdotes: such as Pudding turning on the music in class- the music teacher convinced it only happens when she talks for too long!  Yes, that absolutely sounds like her.

Though it was getting late after a long day, I couldn’t resist popping in to see Pudding’s kindergarten teacher, who was in the middle of reassuring a new parent that her child (who had some differences of their own, but not like Pudding’s) was in the right place.

I couldn’t agree more.

The drive home was just about the complete opposite- I practically flew.  What was I even thinking on the ride out there?  Of course this isn’t easy, but she is where she belongs, and when we move again, we’ll start up a whole new village.

Here or there, it doesn’t matter.  We are always right where we need to be.

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Written by Spectrummy Mummy

August 30, 2013 at 11:05 am

Comments

with 7 comments

A recent post I wrote got a lot of attention.  I’d dashed it out quickly, before starting work, as part of another blogger’s link-up.  It was a sensitive subject: calling out Ann Coulter’s use of the R-word, and no sooner had I published it than I was bracing myself for the backlash. 

I should have taken longer than a couple of minutes to write that one.  I should have made it even more clear that I don’t have a political agenda, but a personal one to do my best to ensure this is as accepting a world as I can make it for my children. 

And I know how ridiculous that sounds, and that I will never be enough change how people think and speak and treat each other, but I also know that I have to try.  I know that I’m not on my own.  And I know that I’d do anything to prevent my children being called that term.

The number of views on that post kept creeping up, until it far exceeded anything else I wrote.  While I was pleased that so many people were interested in learning about why the R-word is offensive to the special needs community, I thought how strange it is that the most read post about my children is about something that shouldn’t apply to them at all.

I got comments that day, but they were all of a consensus with me.  I couldn’t help but wonder about the ways my piece had been shared, and what other people were thinking and saying about it, but nothing negative came my way.

Another autism site occasionally takes my posts and publishes them for a wider audience.  A few days after publishing my post, they shared it too.  Here, the comments became offensive:  I was a “cry baby”, I should “grow up”, “it is just a word”.  There were supportive comments too, but what really stuck in my head was the person who insisted that I was “using a blog dedicated to handicapped children to score points against a Conservative woman (I) don’t like.”

I made a conscious decision not to respond to any of the comments there, and asked the site to no longer use my posts.  I understand that some welcome debate, and encourage opposing views with the aim of persuading them to their own way of thinking.  In this case, no heed was being paid to what I’d written.  Assumptions were made about me, and what I had to gain from writing, that had nothing to do with the actual words I’d written.  There would be no changing minds here.

But that didn’t mean that I forgot about the accusations made against me.  I was angry and hurt.  I’m offended by a person using the R-word be they a friend or celebrity, politically left or right.  Am I using my children?  I’ve always written this blog with the intention of sharing it with them. 

This is our journey.  We laugh, we love, we grow, we make mistakes, we reflect, and we learn.  If what I write helps other people on their journey, I’m happy for that- but there is no ulterior motive here.  This is simply the way we encounter the world, and how the world encounters us.

And yet those words stayed with me.  They held me hostage.  They made me question what I’d done, and if I should any longer write publicly.  It would be so easy to stop, I have so little time anyway. 

Even when I forced myself to write, just so that I wasn’t allowing someone else to make that decision for me, it didn’t stop the little voice in my head from repeating those things over and over.  Then I got a comment from a new reader:

I’ve begun following your blog and I find it so moving, amusing, and delightful that I decided you needed to know! It seemed fitting to share it under one of my favorite posts. This makes me think of “The Moose” by Elizabeth Bishop, and the play on perspective made my eyes tear up a bit! Though I have no children of my own, your blog makes me feel like I can handle whatever comes my way with grace, compassion, and humor. Thanks

That comment made me question if I’d handled this situation in a way that was true of what she’d said.  Not really.  I’d allowed myself to feel all the weight of negativity without sensing any of the light.  Ignoring all the support and community to focus on a person’s opinion that is far removed from us.  Who not only doesn’t understand, but won’t try to. 

And if I stopped writing for any reason other than it was the right time for me and my family, I wouldn’t be living life on my terms.  I thought about what I would want my children to do if they were attacked in a similar way, and found my own example severely lacking. 

When I think about how I want them to handle whatever comes their way, I want it to be with grace, compassion, and humour.  Do I want this reader to be right about me, or a harsh critic?

And what if, what if one day somebody were to call Pudding the R-word?  Would I want her to feel held up by the way we see her, or weighed down by one offensive word? 

Thank you to the lady who wrote that comment just when I needed it.  Thank you to each and every one of you who take the time to read, and particularly those who comment.  I don’t always have time to respond to them these days, but I am going to make sure that I pay attention to what you say.  That I really feel your words, and give those the weight that they deserve.  

Maybe then I’ll handle things that come my way with the grace, compassion, and humour that we’re all capable of.

Written by Spectrummy Mummy

November 5, 2012 at 10:38 am

How To Be A Friend

with 6 comments

When Pudding was first diagnosed, many of our friends asked us what they could do to help, and we were completely at a loss to suggest anything.  We didn’t have a good enough grasp ourselves on all the issues surrounding an autism spectrum disorder.  Also, to be perfectly candid, I went through a phase where only I could do anything regarding Pudding.  But we did need help, in many ways.  And we were lucky that our friends found ways to assist us.  Two years on I can identify some of those ways we did, and still do need help.

Here is what our friends did for us.

Waited for us to talk

Keep calling or emailing us.  Even when we don’t reply.  Especially if we don’t reply.  Right after the diagnosis I was too frantic and preoccupied to keep in touch properly.  I’m still grateful for Facebook to let me reach a number of people at the same time.  Remember that a lack of response probably has little to do with you, and a lot to do with other demands on the parent’s time.

Try to gauge if and when your friend is ready to talk.  I’ve described the first few months post-diagnosis as losing my voice.  It took some time to accept the different route our life was going to take, and I wasn’t ready to discuss that immediately.  Don’t be hurt or upset if your friend doesn’t immediately turn to you for support.  My friends were patient enough to wait, and I opened up when I was ready.

Babysitting

We have struggled from the beginning to find a babysitter who would be mature and responsible enough to take care of our kids.  To make matters worse, they both have extreme separation anxiety.  A couple of our friends have come over to sit with the kids once we got them to sleep so that we could sneak out for a date.  They’ve arrived early so that if the kids did wake up, they’d feel more at ease knowing who was in the house with them.  Because our kids already knew them, we felt comfortable leaving.  Parenting special needs children often means that couples don’t get time to themselves, which leads to even more stress.  We can’t thank our friends enough for the times they’ve done this for us.

Bringing a date to us

When Spectrummy Daddy was in Afghanistan, Pudding was already on edge and leaving her at that time was out of the question.  One Saturday night, a couple of friends came over with take out and dessert to take my mind off things.  I’m sure they had better things to do on a Saturday night, but I’ll never forget their kindness.  If you have friends who just can’t get out- go to them!

Keep inviting us

I’ve lost track of how many girls’ nights out I’ve missed.  But once in a while, if a relative is visiting, I manage to get out and catch up.  Those times are a tonic.

Our friends have also continued to ask us to things as a family.  We’re lucky in that Pudding still enjoys parties, so we have been able to attend for the most part.  Our friends have also been very generous about providing allergy-safe foods and activities that are suitable for my kids.  A big point here is that they aren’t afraid to ask about what our kids do and don’t like, and I’m not reluctant to make an exit if it becomes too overwhelming.

Pudding is difficult to engage, particularly in social or chaotic environments.  I’m always grateful for the friends who keep trying with her.

Play Dates

Our kids need to spend time with typically-developing peers, and many are in self-contained classrooms, particularly when they are very young.  Our friends who had a child close to Pudding’s age have been great about encouraging play between them when our schedules permit getting together.  Pudding learns things from play dates that I could never teach her as an adult, nor would she ever learn spending all her time with other kids on the spectrum.

Learn about our kids

I’ve lost track of the number of times a friend has sent me a link to an article about autism, or even a photograph of the White House fountain.  Several of our friends read my blog, and get to learn a little more about the girl who only seems to talk in repetitive sentences when they’re around.  You needn’t write a blog, but take the time to describe what makes your child tick, and what leads to overload.  It took me a few months to become open to talking about Pudding and autism to our friends, but I have no regrets that I did.

Bought from our Wish List

Almost every time we speak to a teacher, therapist, or fellow parent, we learn about some new thing that our kid needs.  Therapy equipment is expensive, and our kids are still kids too.  They like toys, a lot.  Because Pudding likes extra stimulation, we use a lot of new things to keep her interested and engaged.  Friends have bought things like the sit ‘n’ spin and bead toys for sensory input for birthdays and Christmas.  They’ve also bought things I wouldn’t have thought of that have been very beneficial, but more importantly- fun.  Our friends and family have made sure that the kids toys aren’t all about learning, but princesses and trains too.  The only downside?  I never get a chance to write all my overdue thank you cards.

Do it from a distance

Admittedly friendships are harder to maintain from a distance.  But special needs parenting can be isolating, and any way you find to show a friend you are will mean more than we can express.  My friends have sent packages of chocolate and little gifts to show they still think of me.  Even a postcard or letter lets your friend know you care, though you are miles apart.  That way we still feel like we’re part of a community.  Facebook, Twittter and Skype are great ways to keep in touch.

More ways to help

Meetings

If you are able to do so, come with us to important meetings and appointments.  Even after a few IEP meetings, Spectrummy Daddy was unable to leave work, and I was intimidated by the number of people in the room for Cubby’s IEP eligibility meeting.  Even if you don’t know anything about what is being discussed, your presence would be a great source of support.  Alternatively, taking care of the child or sibling would mean one less worry for the parents.  If you can spare a couple of hours, it would make a huge difference to the stress of the day.

Siblings

Remember the siblings.  Often we have to prioritize the child with the most demands, and the other one gets overlooked and forgotten.  Be sure to focus on the sibling so that they don’t learn that the only way to get attention is by imitating the behaviors of their brother or sister.

Food 

Many kids on the spectrum have problems with food and dining out.  Some are very sensitive to textures and smells, meaning that only a few foods are tolerable for them.  Many children can’t handle the noise and activity of restaurants and food courts.  Still others are only comfortable in very familiar environments.  And then there are those with food allergies or intolerances who need to eat a very restricted diet.  If you are the parent dealing with the food issues, I promise that it soon gets unbearable.  If the family are willing and able to get to a specific place to eat, consider taking them out for a meal, or buying them a gift certificate for a meal there.  If not, find out about their list of okay foods, and prepare a meal.  Even one meal less to worry about would be a godsend, and you might even develop a taste for extreme cooking.  Not that I have.

That was long!  Please let me know in the comments any ways your friends have helped you…or ways you’d like them to help.

Written by Spectrummy Mummy

June 21, 2011 at 8:26 am

Thinking about the unthinkable

with 3 comments

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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