Archive for January 2012
I took a test yesterday. It has been years since I sat for an exam. I kept waiting for that familiar sensation of worry mixed with dread to appear, but it never did. As I typed away, I kept glancing up at the clock ticking down, but was surprised to find no panic there.
Not like there used to be. For every test, big or small, throughout my academic life, and on into the world of work, my nerves always got the best of me. But not any more. In fact, and I know this sounds a little odd- I enjoyed myself!
This test- a business writing exam- was the first of many steps I’ll be taking for possible, potential, one-day reentry into a career.
Or starting a career.
After six years of staying at home, I’m pretty sure this classifies as the start. And if I do, you know, return to work…then what? What about…everything? It almost feels to big to tackle. Just the coordination of school and therapy for two kids feels like a job in itself.
There it is- there are days when parenting feels like a job. I said it.
It is really hard work at times, and I don’t get to clock off. That isn’t to say that I don’t enjoy being home with the kids, or that I think going out to work would be better, it is just that taking an exam was so different that it felt like a break. Perhaps the last few years in the trenches of motherhood have taught me more about how to handle myself than climbing the corporate ladder could ever have done.
The thing I used to fear most as a student- taking tests- is now a walk in the park. For our family an actual walk in the park can be exhausting, and it can be exhilarating. But it is rarely just a walk in the park.
Then again juggling work and special needs parenting isn’t going to be a walk in the park either. It will be more like a series of tests, and I won’t know until I take them whether I’ll pass or fail.
The fact is that for our family like many others, going back to work isn’t a choice. Just like how my husband has never had a choice when it comes to working. We need a second income to help ourselves out of the debt we incurred on a single income family paying for therapy on top of other bills.
I’ll never regret the time I’m spending at home with my kids. I felt like I needed to be there, during the earliest and most critical stages of their development. There are no right or wrong answers here. Staying at home cost us a great deal, and when I return to work, that will come at a price too. I’m just hoping it will turn out to be worth it.
When I return to work, it will be a testing time for our family. But you know, it turns out I quite enjoy taking tests these days.
On those days where I feel ill-equipped to do something, I think of the tiny little weaver birds who visit my garden every day. They painstakingly strip leaves from palm trees, then create something magical, using only their claws and beak. They create up to twenty of these nests, in the hope that their mate will approve of one of them. I couldn’t weave something this intricate even with my fingers, but it does inspire me to another day of tackling the impossible.
When we think of our children on the autism spectrum, a social resilient mindset is not the first thing that springs to mind. In their latest book, Robert Brooks, Ph.D., and Sam Goldstein, Ph.D., explore strategies gleamed from their clinical practice working with children diagnosed with ASD and their families. Indeed, the focus for helping children develop this social mindset is on encouraging parents and other charismatic adults to establish empathetic communication and acceptance, rather than concentrating on the child’s difficulties. As they write:
“Parents strongly influence, however, whether children with ASD will develop the characteristics and mindset associated with resilience or whether they will be burdened by low self-worth, self-doubt, and a diminished sense of hope.” (p.29)
The authors recognize the challenge of being an empathetic parent to a child “whose perceptions and behaviors are often strikingly different from our own.” (p.32). Thus the authors provide real-life examples of how they’ve guided other families through the process, and helped them overcome the challenges they faced along the way. Once parents have faced the challenge of relating to their children in a way that doesn’t cause the child to shut down, they are then given strategies to encourage children to solve the problems they are facing.
One of the strategies the authors promote I found particularly appealing- the notion of using ‘bubble-talk’ to encourage a child to learn the difference between thoughts which may be vocalized, and those which are distressing or off-putting to others. This technique was used with great success with a number of individuals to help develop more appropriate social interactions. Though we haven’t personally encountered this problem yet, I know it is only a matter of time, and I will definitely be using this technique with both Pudding and Cubby.
A central tenet Raising Resilient Children with Autism Spectrum Disorders is the role of parents in nurturing “Islands of Competence” in their children. Many of us have noticed the way our children light up when they can demonstrate their talents. It just feels right to build on these skills, rather than constantly trying to remediate challenges. The authors describe promoting the special interests, or unique skills and experience that the individual has and using those as a basis for developing esteem and self-worth. For many children featured in the book, this was about taking an area of perseveration and allowing this knowledge to be showcased as a talent to be enjoyed by others, and a way of relating to peers. Of particular poignance was the way the therapists encouraged a ten-year-old boy with Asperger’s to write a book describing how he dealt with his mother’s death, which was subsequently displayed in the school library.
As many of us are aware, our children are all different, and what works for one may have opposite effect on another. Brooks and Goldstein advocate that we “consider potential roadblocks in advance…knowing that if one approach does no work, there are others that might, provides families with a very precious commodity: hope.” (pp.171-2). Indeed, just because a strategy is not successful in our first attempt, it does not mean that it won’t work later. Rather than seeing the problem of our child’s behavior, or indeed- in our parenting- we should look at the ways we can address particular skills.
This book will be of particular use to parents whose relationship with their child could use some expert guidance to get it back on track, especially those who frequently find their well-intentioned efforts to help their children fix their problems and social deficits are rebuffed or have disastrous consequences. A guide to supporting and promoting a child’s strengths and talents to allow them to champion adversity and develop the social resilience so essential for a positive outcome in adulthood.
“Children with ASD are capable of finding happiness, success, attachment, and comfort in adult life…this book will be of help to parents and other caregivers of children on the autism spectrum to attain this happiness and resilience.” (pp. 248-9)
Raising Resilient Children with Autism SPectrum Disorders is by Robert Brooks, Ph.D., and Sam Goldstein, Ph.D. and is published by McGraw-Hill. It is available now at Amazon and other leading book stores.
I’m not sporty. At all. The girl who never got picked for a team? That was me. My husband refers to me as “indoorsy” and he is spot on. I enjoy getting cosy under a blanket with a good book or TV show. I enjoy treating myself to cups of tea, or hot chocolate…actually, chocolate in any form. Lots of chocolate. I have a feeling that I’ll make the most content old person ever, having practiced for it all my life. As long as my home has plenty of chocolate. On a Saturday evening we’ll put the kids to bed, eat take out followed by treats and watch TV, just lazing around. It does me good, but it isn’t good for me.
I don’t enjoy exercise in the way that I feel about my more passive pastimes. But I need it.
Last year was tough. For the first half of the year, I felt like I added an extra worry every day. There were big things like additional diagnoses, assessments for the other child, moving to another country…and other big things like a supportive friend moving away and trying to coordinate therapies for two children. That is the thing about life- there are never any little things, and before long I was suffocating under the weight of so many big things. After more than a decade symptom-free, I was back on two different kinds of medication for asthma. Just so I could breathe.
Once we moved, I knew I had to make changes if I was going to stay healthy for my family. We found a babysitter. Once the kids were in their respective preschools, I started going to the gym. And though there were still stressors, they didn’t seem to weigh me down so heavily. I no longer need the asthma medication- I’m breathing freely again.
Now I can’t get enough pure oxygen. Last weekend we took the kids outside to play sports. Pudding refused to join in, preferring to draw with chalk. Cubby soon tired too. We couldn’t compete with the allure of the other kids in our housing complex, who are impressively accepting of our kids, quirks and all. Instead of sinking in a chair to keep an eye on them, I suggested to Spectrummy Daddy that we had a game of tennis instead. We only have plastic Swingball rackets, and the balls didn’t have half the bounce our kids do, but we managed quite the game!
We used the driveway for a court, and both of us were running around for the ball, unable to convince the kids to collect the strays. Before long we were both a little out of breath, but this time in a good way. We had a good time, and it doesn’t hurt our kids to see us play. Maybe next time Pudding will join in too. Spectrummy Daddy even said he’d pick indoorsy me for his team. Maybe we were all winners that day, but the score was love-all.
This post was originally published at Hopeful Parents. You can read it there by clicking below:
I’ve been volunteering for Autism South Africa since I visited their offices a few months ago. Unfortunately, the financial difficulties the organization was experiencing then have become even more pronounced. There is no government support. Donations are dwindling. Existing sources of revenue are drying up.
There is the great dilemma- should you continue to push for awareness in a country where autism is under-diagnosed and misunderstood, knowing that it is already impossible to provide adequate assistance?
The one thing they desperately need- more money- I’m unable to bring. I couldn’t help but feel helpless.
And yet that morning…
- In walked a student from the local university looking for further information about autism spectrum disorders.
- An educator is travelling around the country providing workshops for parents, therapists and teachers.
- A therapist stopped by and asked to be added to the mailing list for more information about autism workshops.
- The mother of a newly diagnosed child was able to walk in and collect information about autism in her own language, and given direction about the next steps.
- Another concerned parent could call in and schedule an appointment for a full assessment free of charge.
The staff continue to work on ways to help everyone affected by autism in South Africa has access to the support and services they need, regardless of the current situation.
Following a phone call in which a father asked, “Is there any hope?” following the recent diagnosis of his child, the member of staff who took the call turned to me and said he wasn’t sure how to respond to that question. He asked me how I would have replied.
There is always hope.
When there is nothing left to give, hope is the one thing you can give. We hopeful parents know that. A cause is never hopeless as long as there are people trying to find it. I don’t feel helpless any more. I described my first visit to the office as a flood, but now I know better. It is a lighthouse. In these dark times, Autism South Africa is still shining a light. Now all that remains is to make that beacon brighter.
I like the weather here. It is warm, intense, and dramatic- just like Pudding. On Sunday we were in the pool, as we have been most days since she started to swim. After some time, Cubby tired and Daddy took him upstairs for a nap. We stayed in the pool, and after a little while, the weather suddenly changed, as it is wont to do here. The blue skies turned grey. There was a good chance there would be a storm, as there are most days here in the summer. The African Storm is much more ferocious than any I’ve witnessed before, but they tend to blow over quite quickly.
It takes pretty dramatic weather to get Pudding out of the pool. In fact, even with loud claps of thunder, and lightning illuminating the sky, Pudding would just keep wallowing in the pool if I didn’t
reinforce bribe her to get out of there. I felt the first drops of rain, and mentioned this to Pudding. She wasn’t buying it.
Me: Yes, look, it is raining now.
Pudding: No! No! Not raining yet!
The drops get bigger, until she can no longer deny it.
Pudding: Look, Mummy, look at the rain on the pool.
Me: Yes, shall we get out now?
Pudding: No. Mummy, we need a [sic] umbrella!