You know how we try to keep nudging our kids towards greater goals? How we try to help them develop flexibility while at the same time respecting their need for consistency and structure? How we try to gently push them out of their comfort zone so that they can experience more? Learn more? Grow more? Well guess what? We need to do that for ourselves as well. Humans are creatures of habit. We tend to take the straight line between 2 points – because it’s easier – and aren’t our lives hard enough already? The thing is, when we stay on that straight line, we actually create more challenges for our kids with special needs in the long run.
For years I dreamed of a family vacation that my girls could enjoy. But they’ve never flown. But they haven’t slept away from home since they were babies – except for hospital stays. But they have special diets. But we can’t eat out at restaurants. But we would have to bring so much food with us. But they need structure. But they need consistency. But … but…but…but…
And then I realized that despite my best efforts I had begun to play it safe. Community outings were far and few between. We have a comfortable home and my girls were happy. Play date? Why don’t you come over for lunch? It’s raining? Let’s just stay in today. School vacation? Anyone want to come spend some time with us at our house? Our home is predictable. The girls are comfortable here. We have our routines. We have our structure. It’s good here. But…
They need more. We need more. We have to push ourselves out of our comfort zone just as much as we have to do that for them. They deserve more – and so do we. We spend so much of our time waiting … to get through the day … to get through the week … to get through the school year …
Here’s the message I want to get out there – As parents of children with special needs, we have to live for today while planning for the future. That means taking risks now that will make a difference tomorrow. Stop waiting until they are ready. Stop waiting until YOU are ready. Go. Do. Live. But…
Do it responsibly. Take baby steps. Think things through and come up with ways to make it a little bit easier. Here are a few steps we took to ensure a successful vacation (and by the way – I almost cancelled everything a week before our trip because I was afraid it would be too much):
- We found a lodge that was 5 hours away (think of it as a get out of jail free card – we could always drive right back).
- We got a place with a kitchen so we could prepare our own meals.
- We brought lots of comfort foods so their eating habits didn’t have to change along with everything else that would be changing during our vacation week.
- We called ahead and spoke to the manager to discuss our children’s special needs.
- We took extended family members. We had 2 grandmothers, an uncle and an aunt. The girls were surrounded by people who loved them and were so happy to have this time with them. (Cost sharing bonus here as well.)
- We were careful not to over plan. In fact, we didn’t plan anything. We did a little research about what was available in the area and then we waited to see how things would go.
- Before each outing we called ahead and discussed the girls’ needs. Everyone went out of their way to make each excursion a success.
- We found a restaurant that would allow us to bring our own food for the girls while the adults ate from the menu. This was the first time since Ava was a baby that she was actually in a restaurant!
- We came prepared with familiar books, toys and art supplies.
- We brought a few novel books, toys and art supplies.
- We brought their iPads fully charged with some new apps their teachers recommended.
- We let them surprise us with what they could handle – and they really blew us away!
What did I learn?
I learned to no longer underestimate what my kids can handle. I will not limit their experiences because of my own fears and insecurities. I will challenge myself to expand their horizons. And when it backfires I will adjust my plan and try again. Because they deserve it … and so do I.
Time to start planning our trip to Disney 🙂
Kirsten and her husband Eric (the girls’ step-father) live on Long Island in NY. Kirsten is an early childhood educator with a Master’s degree in special education. Eric is a computer engineer. Together they developed So Much 2 Say, an iPad AAC app, to help their daughters communicate more effectively. Their daughters, Autumn and Ava, have multiple disabilities. They are non-verbal with cognitive impairment and they are both on the autism spectrum. Although the girls share many medical needs, they are unique individuals with their own strengths and challenges. These loving parents attribute much of their children’s successes to the large network of extended family members and friends who have always surrounded the girls with love and acceptance.
When I was asked to write a piece about autism for The iMums, given that I’m not autistic I decided to share with you the only thing I am an expert on – what it’s like to parent my children.
A couple of points to note first. Autism is a developmental disability and as a non-disabled person, the challenges I tackle from time to time are nowhere near as significant as the hurdles my children face daily. Secondly, I have never once wished my children were not autistic; I adore and accept them exactly the way they are.
Bearing those caveats in mind, here are some of the things I’ve found hardest to manage:
- The administration. In order to get the accommodations, services and supports my kids need, I have had to fill in more forms, attend more meetings, appointments and workshops, do more research and learn more things than I ever imagined possible.
- The isolation. There’s a counterpoint to this so make sure you read on, but I do sometimes wish I had someone I could call and have a cup of tea with. There are parent support groups but even if I didn’t have to do a 3 hour round trip to attend one, I still wouldn’t want to sit and listen to people talking about how much autism sucks. Friends whose kids are typically developing seem to fall into two camps. First there’s the pity crowd who are “so sorry” about my boys’ diagnosis. I’m not sorry, my kids are awesome. Then there are the folks who breezily declare, “well all parents have to deal with that.” Yes, given that my children are people and not dolphins, obviously there are many things that we have in common but honestly, it’s not the same.
- Fear for their future. All parents know this feeling but autistic adults (even when compared to other disabled individuals) are much more likely to be unemployed or underemployed than their non-autistic peers. I worry about my boys growing up in a society that focuses solely on their deficits and differences. I want them to live in a world that values diversity and sees their strengths.
- When I don’t understand my kids. My non-speaking son is incredibly adept at communicating what he wants and this continues to improve as he uses AAC (augmentative and alternative communication). My other son, Oliver, is verbal but highly echolalic. I know that behaviour is communication but sometimes I struggle mightily to understand what Oliver’s behaviour means. Not having the same neurology as my children can be frustrating and painful at times.
- My boys are autistic in very different ways so when their needs come into conflict – when Oliver’s sensory seeking behaviour triggers Owen’s sensory sensitivities, for example – it’s extremely hard to come up with solutions where everyone’s needs get met.
Having said all that, there are some terrific benefits that I would never have experienced if my children weren’t autistic. Here’s some of them:
- An online support network. I have so many friends who, even if they can’t be with me in person, are incredibly understanding and supportive. I especially value the input of autistic adults who can often interpret my children for me in ways that make it easier for me to understand them.
- I’m a better person and I’m pretty sure, a better parent than I otherwise would have been. Trying to understand my children and balance their competing needs does have an upside. I’ve read books and articles, met people, written things, had to get my head around concepts and generally followed a path I would not otherwise have taken. I’ve had to exercise my powers of deduction and imagination – both in understanding my kids and coming up with creative solutions for some of the issues they face. There’s nothing more satisfying than making your child’s life easier, better or happier.
- It’s much easier to raise my children to be themselves. My kids get to focus on things they enjoy. They are allowed to leverage their special interests and areas of strength in order to develop new skills. Their education is individualized to suit them, they don’t have the same pressure to conform and they aren’t forced to wear the straitjacket of a standardized education.
- In many ways my boys are so easy to parent. They enjoy their own company so I’m not forced to feel that I always should be with, play with or talk with them. Their lives are relaxed and not over-scheduled with play groups, school clubs or ludicrous amounts of homework. They have freedom to just ‘be’ which in turn makes being a solo parent much less stressful for me.
I clearly can’t claim that this is what life’s like for all parents of all autistic children but I hope I’ve given you an idea of what it’s like for me – and that I wouldn’t have it any other way.
Guest Post by Lisa Domican developer of Grace App.
When Liam was small and we didn’t yet know he had autism he used to get rampant tonsillitis.
I would take him to the Doctor, get the antibiotics and then fail hopelessly at getting Liam to take them (because he was so sensitive to taste and smell) so the infection would escalate into something even stronger and more painful.
Even with this septic mess of a throat, Liam would continue to run around and play until suddenly he would go pale and listless.
I would take him back to the Doctor only to see him CRINGE as he examined the tonsils and say
“They are VERY infected” then look at me like I was the worst mother in the world, write a new prescription and say firmly “complete the course” as if I was deliberately neglectful. I eventually found a way to get him to take his medicine (wrapped up in a towel like a cat) but it took a bit longer for me to realise that our kids do not know how to “act sick”
Everybody has a different pain threshold, and Autistic people feel pain to the same degree as anyone else. But they can be incredibly stoic and they need to be taught, step by step to ‘act” like they are in pain.
You can observe this regularly when flu goes through your house. Mums will grab a box of tissues, take a decongestant and get on with all the chores they usually do. Whereas men tend to develop the dreaded “man-flu” and take to their beds or the couch where we must bring them things until they recover. Acting sick when you are sick gets you attention and help. Not acting sick means you often get sicker. So we have to teach our kids with autism that it is rewarding to tell us when they are in pain.
You must do this in context, when they are actually feeling pain. For ethical reasons you have to wait until they trip over or get a bump that you know is painful.
DO NOT TRIP THEM OVER ON PURPOSE! Okay?
When they do, you go and comfort them immediately with a hug while pointing to the place that hurts. Say clearly “Sore knee” or “Sore Elbow, owie!
This works really well with kids that are able to imitate speech. I did this with my son Liam who learned very quickly to repeat what I said, and to tell me whenever he was hurt. In fact Liam will demand an ambulance if he gets a hangnail. I encourage this because I know when he gets a tummy ache or an ear ache, he can tell me and we can go and see the Doctor before it gets worse.
For non-speaking kids it is much harder. My daughter was a picture communicator from an early age and I struggled with teaching her to tell me when she was hurt using the same steps, so I made a visual “pain chart” with pecs pictures. As I said, you have to do this IN CONTEXT, when she actually feels the hurt. and the pain chart was a laminated A4 page with slightly gross pictures of body parts, too big to carry around. So, when she did get hurt I had to make a choice, do I run and comfort my daughter or do I try and find where I left the stupid pain chart?
Gracie had a lot of anxiety and behavioural issues as a result of her autism. But sometimes I wondered whether it wasn’t just “autism” but a real pain like a toothache or earache. I had no way of knowing and it really tormented me. Until I created Grace App.
Because, while you may have left the picture cards in a drawer at home, you always have your phone, so I made sure during the development of Grace App to include a section called “My Body”
When the pain happens, I grab the phone and select “My Body” Hand over Hand so the child is selecting the category picture with you
Then prompt them to choose “Sore”and “knee”
And give them a lot of care and attention around that poor sore knee. Saying “Sore Knee” and pointing to the pictures and the actual knee, a lot.
In a separate exercise; (when they are no longer in pain) you teach all the other body parts using flashcards or standard picture exchange requests.
How do you request a body part? Try using our friend Mr Potato Head as a 3D teaching tool.
Set up a mirror and the potato man and keep hold of the body parts. They can request “I want nose” and “I want eyes” using the phone.
At the same time do a little “show me your eyes” and prompt a nice point at eyes looking in the mirror together. So it is real, not abstract.
They will associate the picture of “eyes” on the phone with their eyes.
We often play drawing games on the iPad (or use a piece of paper and some coloured markers)
Gracie requests a favourite Muppet using her App. I prompt her to ask for each part by colour and then draw it for her. At the same time I get her to point at her own body parts and name them.
In school they make puzzles of her favourite characters and she requests each piece using the app. It is a great way to keep her interest while making sure she learns in context.
Being able to describe pain and get relief is a basic human right. Unfortunately we do not prioritise it enough for the non-speaking and our health services need to address this. My goal is to make this easier, so that everyone regardless of whether they have a voice or not, is able to say how they feel.
Lisa Domican is a mother of two autistic teenagers. An excellent communicator herself, she saw the importance of giving the power of communication to others who needed it and set about creating the Grace App in early 2010, she has since set up her own company to promote and expand it. According to Lisa ‘My goal is to engage and inform as many educators, therapists, parents, carers and service providers about the importance of independent expression. Everyone should have the right to say what they want. My aim is for them to get it! You can find more of her writing at her Living with Autism Blog.
Positive, Creative Thinking for Raising a Child on the Autism Spectrum
Guest post by Jodi Murphy of Geek Club Books
I’m standing in the middle of the family room hugging a binder with a four inch spine and in it are carefully tabbed sections chronicling my son’s medical and developmental history. It feels awkward and uncomfortable to have and to be holding such a binder, because reading it will make any stranger feel pity for my family and a guilty relief that they don’t have a son with autism.
The binder is necessary for the battles that I have to fight on my son’s behalf, and it contains important information that I must keep in order for anyone who may have to take over if something happens to me or my husband. I can’t tell you how many times I’ve copied, synopsized, and sent off its contents in order to get the appropriate approvals or assistance or interventions.
But the binder isn’t the entire story. It’s just cold, detached, documentation of his Aspergers syndrome and how it has clinically impacted him. The reality is so much better than that stupid binder.
I figured it out at 2 and the professionals called me crazy.
First, understand the mindset during the 1980s about how autism was portrayed and talked about. Even though Aspergers Syndrome was classified by pediatrician Hans Asperger in 1944, it wasn’t even on the U.S. diagnosis radar back then. At least that was my experience.
I knew at 2, that something was up with my son but no medical professional or therapist ever mentioned or discussed it with us as a possible explanation for his developmental and social issues. When he played with cars, he turned them over, placed them up real close to his eyes and watched the wheels spin and spin and spin. He was fascinated by light and we’d go from mall to mall during the holidays to look at all the Christmas tree displays—and they had to be the multi-colored lights, not the plain white twinkles. He was captivated (no obsessed really) with the Tyrannosaurus Rex and collected every toy, book, and VHS on his prehistoric pal in order to learn and talk about it, literally non-stop. He paced around and around our coffee table engrossed in self-conversation.
With those kinds of behaviors and noticing he wasn’t following the typical developmental milestones of his peers, I’d ask medical professionals, “Is he autistic?” And the response was always a categorical “no,” followed by varying responses that I can boil down for you… I am an over-bearing, over-protective, over-reactive mom who just needed to relax and not worry so much.
It took until age 13 for a diagnosis of Aspergers Syndrome but we were already doing whatever we could to find him help and support where he needed it—occupational therapy, tutors, role-play, a magnificent school for children with learning disabilities—and my own ingenuity and creativity.
He called himself a hedgehog.
His social skills were (and still are) his biggest challenge. He used to call himself a hedgehog saying that “it’s difficult for hedgehogs to get close to other hedgehogs because of their spines. They’re afraid of getting hurt and that’s my problem …every time I reach out to people I am afraid of getting rejected.”
I became hyper-aware and listened for anything he would talk about to give me a clue for finding something (anything) he was interested in where his involvement could result in personal achievement. Notice the “could.” No matter what I’d find, there was a risk that he’d get frustrated, feel like a failure and want to give up too soon. But I had to take that risk, so he had opportunities for success.
I was a matchmaker for his interests and abilities.
When he showed interest in (and a talent for) acting, I found opportunities for him to audition in community theater. The experience of performing on stage transformed him—the hedgehog disappeared and a new found confidence in his abilities and worth spilled over into his everyday life. And he had a pathway to college studies and a career.
His on stage success dramatically changed his interpersonal skills—he went from one way information dumps of facts to the witty raconteur! He’s brilliant, well-read and participates in—even leads—interesting, thoughtful and smart conversations. He’s a modern Mark Twain. A Will Rogers-like humorist. He’s the kind of guy you’d want sitting next to you at a dinner party—I can guarantee you’d have an entertaining evening.
Find that ‘thing’ and find ways for him to do that ‘thing’.
Today, my son lives in an independent living situation. He has friends. He works as a professional voice actor and his character voices are heard throughout the Great America theme park, and on apps, toys and audio books. He is a 2014 recipient of the Temple Grandin Award for our work together on Geek Club Books autism storytelling apps.
It isn’t all rainbows and fairy tale endings, but looking at the black binder and thinking back to where he began…it really IS a magical journey.
So my message to parents of younger children on the spectrum is to remain positive and hopeful. Be creative strategists. Find the things your children are interested in and good at, and find ways for them to do it over and over again—art, data entry, computer wizardry, performing—it doesn’t matter what that ‘thing’ is. Use it as a tool to build their self-confidence and the self-worth that comes from being able to make a contribution. And as adults, it may be the key to their independence and ability to earn a living.
Jodi Murphy is the founder of Geek Club Books, autism storytelling through mobile apps that are making a positive change to the autism status quo. Their first app, Mighty League, Vol. 1, is based on and narrated by her Asperger son, Jonathan, the recipient of the 2014 Temple Grandin Award. Discover more at www.geekclubbooks.com.