Waiting for Help…

May 17, 2012 Deborah Dykstra

In a perfect world, if our children needed help, we would know where to go, have an immediate opening in the right program, and our children would thrive. Unfortunately, it’s not that simple for a lot of parents with children newly diagnosed with autism.

Perhaps you have decided a developmental approach such as Autism Outreach (Floortime) or RDI is your program of choice and now you are on a wait list. Maybe you have decided ABA is your best option, but you’d like to know a bit more about a developmental or play-based approach to see if you can try out some strategies. Or maybe your child has just received a diagnosis and you’re starting to look for information, not sure what the best approach for your child and family might be.

At different times, all three of those scenarios have described our family. Our daughter was in ABA for three years, but I wondered about other approaches and started reading. I was able to incorporate some play-based strategies into our playtime and daily interactions. I shared some of what I learned with my child’s ABA staff a bit too. Later on, when my son was diagnosed, we decided Autism Outreach (based on DIR/Floortime) might be a better fit, and would provide a better approach for both our children. When we ran out of time in that program, we were able to learn through the RDI-based approach at the Relate program at SSCY in Winnipeg.

We were lucky to be able to move into the opportunities that interested us. Sometimes there are long wait lists, or no programs available. So how can you get started without officially being clients in a program? I read a lot, both books and online. There are good videos available too. And I’ve found that some private speech therapists and occupational therapists know quite a lot about developmental approaches (Hanen, Floortime and RDI, which have a lot of similarities) and can help with evaluation and support specific to your child.

No matter what therapy or program you choose for your child, your active participation is what makes it work well. Here are my suggestions:

Learn

Start by educating yourself. If you are interested in an approach, your first goals will be to understand the program and the ideas of how children grow and learn that lie behind it. Is it a good fit for your child’s abilities and needs? Here are some resources to get you started. Click on the title to link to a purchasing site:

Jonathan Alderson. Challenging the Myths of Autism.
I include this one not because it explains therapies (although it gives a brief overview) but because I found it put the whole issue of having a child with autism into perspective for me. It’s a great book to read as you are working through your plans and options. In fact, that’s what the author does for a living – he is a consultant who helps parents weigh treatment options and develop a plan. He has a balanced view of what each approach has to offer.
Barry Prizant, Uniquely Human: A Different Way of Seeing Autism.
This book is all about perspective. The behavior of people with autism is a reasonable response to the world around them, and makes sense when you begin to understand the differences in how an autistic person perceives and interacts with the world. This is a great book to share with family members, caregivers and teachers.

Fern Sussman, More Than Words (The Hanen Program)
This one is completely worth the cost. Sometimes the Hanen Centre offers a sale price. They also offer a training video to go along with the book. The focus is on developing speech and communication in children with autism, but it gives you a really good checklist for understanding your child’s development and sensory needs, along with more strategies and activity ideas than one person can process – I find I keep coming back to it for new ideas to try. There is also a follow-up book for verbal children on the spectrum. It’s all about developing pragmatic (social) language skills and expanding communication. It’s called TalkAbility.
Dr. Stanley Greenspan, Engaging Autism.
Dr. Greenspan pioneered the DIR/Floortime approach, and as far as I know this is the most complete description of it. This book will help you understand what your child can do and is ready to learn, and appropriate strategies to work with your child at each level.
Gutstein, Steve. The RDI Book. This book explains the central challenges created by autism, and summarizes the ideas behind RDI, describing how parents can be empowered to guide the cognitive, social and emotional development of their children. Through the framework of a family-centered dynamic intelligence curriculum, children become motivated to seek out new challenges and overcome their fear of change. More information is also available on the RDI Connect website.

You don’t necessarily have to spend anything to read these books. Engaging Autism, the Hanen books, and the RDI book might be available through local library and resource centres (such as the SSCY Lending Library at the Rehabilitation Centre for Children in Winnipeg), along with many other useful books and videos. Digital resources may also be borrowed from the Aide Canada Library. Your public library might have them too.

Also keep an eye out for seminars and courses.

Winnipeg’s SSCY Centre offers seminars and they are often online, which makes them accessible from anywhere.
PLAY Project offers online resources and courses for parents.
Profectum offers a free Parent Toolbox of strategies to help you interact with your child.
Affect Autism is an Ontario website offering information on DIR/Floortime for parents
RDI Connect offers information to diverse topics about connecting with your child, building their competence and guiding their thinking. Part is free, and for a fee you can have access to parent forums and more in-depth information.

Practice

Sometimes in order to learn, you just have to give things a try.

Step 1: Observe your child.

Notice what your child likes, when it’s easiest to join in, places or situations that work better than others. Use the checklists in the books to think about how he or she relates to people, what relationship skills might be appropriate to work on next. Also think about what she or he likes and doesn’t like, or what times of day he or she seems alert and ready to interact. Children don’t learn well if they aren’t happy or comfortable.

Step 2: Set manageable goals.

This is a big one – don’t overdo your plans! Choose one or two things to focus on at a time, and choose things that your child seems ready to learn, that aren’t too far out of his or her comfort zone. Keep in mind that they should be enjoying their interactions with you, and that it’s often necessary for kids to watch you for a while before they are willing to join in.

Step 3: Give it a Try!

Take a deep breath, set aside some time, and try some new things with your child! Allow yourself to start with smaller amounts of time (maybe only 5-10 minutes) and work your way up as you and your child are ready. It is helpful to think of playing and interacting with your child as a habit to establish. Start small and work up.

At one point I realized my child had gone from having a 2-minute limit, to wanting me to play with him longer than I wanted to go! But don’t quit when you’re tired – keep going until he is ready for a break. Some activities might seem boring to you, but if he is interested and learning, make the most of the moment. Remember that much can be accomplished by changing the way you interact with your child in the small moments. Every encounter can be a learning experience, if he is with you emotionally and you are both communicating. Amazing things happen when your child knows you are paying attention to what he wants to communicate.

Step 4: Give Yourself Feedback.

If you aren’t able to learn under the supervision of an experienced consultant, the next best thing is to find ways to recognize and build your developing skills.

Keep a journal. List and prioritize your goals, and take five minutes every evening to write down some of the day’s accomplishments. This will keep you on track, and also provide a record of the progress your child is making. It can also include a list of activities that you think are good starting points, so on harder days you have some ideas to draw from.
Videotaping yourself with your child can be hard, but has two enormous benefits. You will see yourself from a different perspective, and will have time to notice things you otherwise wouldn’t. It also makes a very eloquent diary of changes in your child’s interactions and abilities. Someday you will be amazed at how far your child has come.

Most importantly – try to live in the moment and enjoy your child!

Connect

Meeting up with other families with children on the spectrum helps keep things in perspective and provides a safe place to discuss problems. Your area might have a support group that meets in person. Social media has groups where you can chat online, or you can find other parents in a local group to meet up with for a coffee.

Adults with autism provide another important source of perspective and understanding. Autobiographies – Temple Grandin, John Elder Robison, Steven Shore, and Carly Fleischman are ones to start with – there are so many more. Blogs and Youtube channels are another place where autistic people share their perspective. Amethyst Schaber’s Ask An Autistic video blog provides information on a variety of topics.

Building and maintaining good relationships with your friends and family also provides a support base that you need. And not just for you – your child will be much better off with a circle of friends and family who are willing to build a relationship with them, and who can keep on encouraging them when you need a break. They say it takes a village to raise a child…with an autistic child, it’s even more true!

My point…waiting doesn’t have to be just waiting. You can use that time to equip yourself with knowledge skills that will set the stage for growth. And if you’re not waiting, but working within a program, remember that you still have the opportunity to keep learning, to work together with your child’s therapists and to speak for your child, with the goal of adapting supports that are a good fit as your child grows.