Autism and Care-Giving

Were You Chosen?

It is truly a gift to be a chosen one, with the responsibility of the nurturer/care giver, but it can also get very frustrating!
Everyone is a nurturer in some form, to some degree, but others just naturally gravitate toward that role.  And then some are chosen to be there for children requiring much more attention than others. When it comes to children with autism, you know exactly what I am talking about. It seems like everything we do requires soooo much time-consuming effort – and often with little or no reward (so it seems).

Hang in there – there are rewards – like the story of the little boy waving (to his mom – but not really) on the bus in the “Chicken Soup: Special Needs” issue. Sometimes, we are so wrapped up in taking care of others, we often lose sight of caring care of ourselves! It is important to take time for yourself and rejuvenate. Don’t feel guilty about it either! I learned many years ago that if I don’t take care of myself, I won’t be in shape mentally or physically to take care of others.  When we nurture others in our care, we can teach them how to care for themselves to the best of their own ability. A thriving state of mind, body, and spirit is most conducive to providing this kind of quality care, that will someday foster an adult that is confident, successful and most of all, happy.

Conference in Edmonton, Alberta Connecting with Friends

caseI just went to a conference in Edmonton Alberta hosted by the Children’s Autism Services of Edmonton. It was a refreshing break to get to attend this event at my leisure and network from the many parents and professionals that frequented our Autism Today booth. Parents came up to me and thanked me for the emails we send and while I know we do communicate quite frequently with our audience, she assured me that she felt it was the right thing for us to do. She said “I get so bogged down with my regular life and lose track of where I am in relation to my kids, work and in between that its quite refreshing to receive your emails”. Gaining the perspective as an exhibitor also is great, especially for our upcoming exhibitors and sponsors. Because of this we have chosen to have all our exhibitors in our main presentation room instead of being tucked back away from the attendees. We’re even thinking of other unique ways our sponsors and exhibitors can reach the people that need them the most.

The most fun was to meet many parents and professionals I already knew like my own sons doctors. When Temple recognized my first book, Little Rainman, in front of close to 1,000 people, Jonnys doctor recalled with pride his smiling face and of course his challenges too. I reconnected with my friends, Amy Weatherby, where I co-presented in St. John, New Brunswick along with Emily Rubin and the late Peter Zwack from Montreal. I remember the tides as they went up and down. I never knew that St. John, New Brunswick was world renowned for the greatest tide shifting in the world until that conference.

Temple and I also reconnected and she gave us the rights to give away her presentations for free. I know our members and people associated with Autism Today will gain so much from this tremendous gift she is sharing with the world. Watch for some new streaming video in the near future. Another buddy of mind, Diane Twachtman-Cullen joined me for dinner and cocktails the last day of the conference. Diane, whom I’ve known for many years, is coming out with a brand new IEP (IPP in Canada) book that covers autism and other special needs. I feel this book has been a long time coming. Diane is an amazing woman who has helped so many parents and teachers in so many ways. Through the work we as women have done both together and individually, each in our own unique ways, we endeavor to make the world a friendlier happier place for people with autism. The challenge of money for research, ignorance, and the loneliness and heartbreak of children who become adults, abandoned by family and society, because they did not get interventions must be overcome. It is bigger than all of us combined. As parents and professionals, we should all work hard to work together. Though we fight the battle as parents and professionals day in and day out we will get a lot farther if we are unified in our approach

I am proud to live in the Edmonton, Alberta area which is the best province in the autism world to support Pervasive Development Disorder policy. Mary Ann Sinclair is a wonderful advocate and director in their field. Canada is awesome and certainly progressive. Talk about how municipalities and states in US are facing gigantic crunch, and victims will be ASD people, and others with disability.  Non-profits are really important in this capacity.  That’s why I started the KEEN Education Foundation in 1996 in Canada.

Dan Burton at Autism One Conference 2003

 

Autism One, what an awesome group they are. I remember when we covered Dan Burton  through Autism Today Magazine. That was so interesting and it was wonderful to be able to offer online attention to the issues Dan brought up. Autism One is doing some exciting things with social media that we look forward to sharing in the near future. This community belongs to all of us. Its about helping everyone on the planet understand and support children with autism. There is no such thing as a rolodex anymore, there are just relationships with the people in our community and connecting everybody to the resources they need.

As my son, Jonathan enters the next phase of his life, so do I and so many other parents with children in the autism Tsunami. In the next decade the world will begin to burst at the seams in so many different areas which is why William Davis and I wrote our most recent book “Autism Tomorrow” so parents and professionals can begin to answer the questions of where will my child live, what will my child do when he or she grows up. Not that I have a crystal ball, however, it doesn’t take a mental giant to figure out that we will urgently need people worldwide who are trained to work with people on the autism spectrum. We will also need employment and work force training. Big corporations have got to step up big time to meet the demands of our future children. I do know that Walgreens is already making accommodations to fit those with special needs into their work force. Other companies, especially high tech ones like Microsoft, always are on the lookout for graduates with Asperger syndrome and high functioning autism because they have an innate gift to focus on certain areas thereby developing core strengths. We are on the brink of publishing a new book showcasing the magnificent artwork by those on the autism spectrum including Dr. Temple Grandin. What is needed now is a movement to brag about our people on the spectrum and even offer a training manual for employers so future employers know their core strengths and challenges so they can not let detriments get in the way of hiring the best talent.  We will be starting a corporate training program to help people on the autism spectrum and their potential employers so that both employees and employers have a better understanding of each other in the future.

Be sure to stay tuned to autismtoday.com and of course, autismvancouver.com 

Karen Simmons

77 Ways to say “Good Job”

Everyone likes positive pats on the back, recognition and acknowledgement for a job well done.  It’s especially vital when raising a child with an autism spectrum disorder.  We should be mindful that sometimes, with our children with ASDs, the label we use can be the opposite of a back-pat.

When I founded Autism Today, I asked my sister Susan to create a logo that would be overwhelmingly positive.  I asked her to use a star, like the gold star we all loved to get from our teachers in school, instead of the puzzle piece.  Autism Today is about celebrating the gifts of our children on the spectrum, not focusing on what we all know and understand to be real challenges.  There’s no argument autism is real and, for those without the necessary resources, overwhelming.  But all of us, parents and children with ASDs, must focus on the unique and often amazing attributes – the positive side – of ASDs, first to cope, next to survive, and, finally, to thrive.  I raised my son Jonny to think of his autism-related skills as wonderful gifts.  When he was born, I could never have imagined how much fulfillment and fun Jonny would bring into our lives as a family.  Focusing on his ASD as a gift, rich with possibilities, was an important aspect of that journey.

I remember people challenging me that no one would know we were about autism since we didn’t use the puzzle piece like everyone else.  My thinking has always and will always be to accentuate the positives and eliminate the negatives.  That old Johnny Mercer tune was a great favorite of my beloved father, Jack Simmons, a World War II veteran, pilot and aerospace engineer.  Attitude got him and many hundreds of thousands of military folk through a terrible time in history.  It can be easy to be overwhelmed by the trials in our lives raising a child on the spectrum.  But inside that child is a treasure chest of possibility.  It is our duty, those of us who know and love these children, to find the gems within – and to do that, we must always, every day, focus on unlocking those gifts.  To do it, we must always accentuate the positive!

My dear friend, Stephen Shore and I were talking about how positives are so good for our kids with autism, especially when accompanied with a red skittle, and sometimes teachers can get carried away with saying “good job” to often so we came up with 77 ways to say good job without being redundant.  I thought I would share them with you all.  Its rather cute.  Enjoy and don’t forget to get the red skittles!

77 ways to say “GOOD JOB”

  1. SUPER
  2. That’s RIGHT
  3. That’s good
  4. GOOD WORK
  5. Perfect one
  6. You’ve just about got it
  7. THAT’S IT
  8. Now you’ve figured it out
  9. GREAT
  10. I knew you could do it
  11. Now you have it
  12. Good for you
  13. Couldn’t have done better myself
  14. That’s the right way to do it
  15. You did it that time
  16. You’re on the right track now
  17. Nice going
  18. WOW
  19. That’s the way
  20. Keep up the good work
  21. TERRIFIC
  22. That’s the way to do it
  23. SENSATIONAL
  24. EXCELLENT
  25. PERFECT
  26. Much better
  27. WONDERFUL
  28. You did that very well
  29. FINE
  30. OUTSTANDING
  31. FANTASTIC
  32. TREMENDOUS
  33. That’s great
  34. Right on
  35. Superb
  36. Good remembering
  37. MARVELLOUS
  38. I like that
  39. Way to go
  40. Good thinking
  41. Good going
  42. Very good
  43. You remembered your sound
  44. That’s really nice
  45. Uh huh
  46. That’s a good one
  47. Yes
  48. I liked that sound
  49. Good
  50. Nice
  51. You’re really working hard today
  52. You are very good at this
  53. I’m happy to see you working so hard
  54. I’m proud of the way you’ve worked today
  55. You are doing much better today
  56. That’s the best you have ever done
  57. You’re doing a good job
  58. That’s quite an improvement
  59. You’re getting better every day
  60. That’s the best ever
  61. You must have been practicing
  62. You’re really going to town
  63. ow that’s what I call a fine job
  64. You’re really improving
  65. You’re doing beautifully
  66. You’ve got that down pat
  67. You certainly did well today
  68. Keep it up
  69. You did a lot of work today
  70. I’m very proud of you
  71. Now you have the hang of it
  72. You’re doing fine
  73. You are really learning a lot
  74. You out did yourself today
  75. You figured that out fast
  76. That kind of work makes me happy
  77. That’s it

Battle Scars, Perfection and Autism

My sister wrote something today in her blog that struck me:

missing teeth and feetAs I was packing away my Christmas stuff this year, it dawned on me that the same nutcrackers I have been putting away for years were still broken, and no one was ever going to fix them. As my late husband, Larry, and I celebrated our last Christmas together in 2008,  I mentioned their ‘broken’ state to Larry. I said we should get rid of them and get new ones. He said the nutcrackers were perfect. “Those are battle scars”, he said. I said ‘okay, whatever’. He said they guard us every night during the Christmas season, while we are asleep. They are up all night in battle sometimes even during the day, while we’re out. Of course, this was his sense of humor. He had a way with humor, unlike anyone else I had ever known. The nutcrackers’ broken and missing pieces were ‘battle scars’. Nutcrackers without battle scars are useless and lazy and don’t serve any purpose at all.

What an awakening, as I thought about this yesterday, gathering them up for another year’s slumber until next Christmas. Remembering this story brought a tear to my eye, as I thought about Larry’s own battle scars before he passed away, and our 21 years together. He was rough around the edges, just like those nutcrackers. He had physical battle scars, emotional and psychological ones too. But there was never a day that went by that he didn’t have the same protective demeanor that he attributed to those nutcrackers. Every day, was a day of watching out for his family and myself the very best that he could. It’s not a sword or a fist fight – it’s an attitude – a commitment to ‘be there’ come rain or shine for the people you love. Larry was my guard and protector on Earth while he was here. He was with me and for me every step of the way, and I will never forget that. Through all of his rough edges, deep inside he was a person of pure and perfect love. Sometimes, I think it’s because of his rough edges and battle scars that he grew a deeper sense of love than those that may have never encountered obstacles.

It would take the heart of a soldier to see the significance and purpose of ‘battle scars’ on a Christmas nutcracker.

After reading this story that my sister Susan wrote, I started thinking about my own life and how the ‘imperfections’ we may see in the people we love really aren’t imperfections at all. They are merely remnants of journeys along the way in life. It’s as if someone just painted a giant wall with lots of colors and, as you’re walking down the street you bump into it occasionally. Then, you stand back and notice how many colors are all over you. You weren’t born that way – you acquired them along your path.

This New Year, let’s look at our own lives that way and the children with autism in our lives. They have bumps, bruises and many colors, and rough edges. Aside from those ‘rough’ edges, the love is there nevertheless, with a lifetime of love to come. Be patient. The battle scars, wall colors (or whatever you may call them) may look funny or be bumpy, but just embrace them and love the person inside.

Autism Funny For the Week!

As many of you may well know, children with autism are completely literal and straight to the point. This behavior has value for them, as there is nothing left undefined or misinterpreted. They express their thoughts in detail.

Soooo I’m doing the socially appropriate thing and also love spending time with my 2 spectrum kids by taking them to a “Techno” Dead Mouse Concert tonight.  While preparing for the ordeal I asked my oldest son with autism, Jonny if he was going to be embarrassed by going to a concert with his mom,  to which he replied “don’t worry mom, its dark in there, no one will see you”….Gotta love ’em!

Contact Info

Toll Free: 1-866-9AUTISM (928-8476)

New York Office: 244 5th Avenue New York, NY 10001 Fax: 1-780-416-4330,

Canadian Office: 11007 Jaspar Ave Edmonton, Alberta T5K 0K6

Copyright 2017 © All Rights Reserved

1 in
45

Diagnosed with Autism

Over
100

Autism Diagnosis a Day

Costs
238

Billion per Year

Boys are
4

Times More at Risk