Waiting for Help…
In a perfect world, if our children needed help, we would know where to go, have an immediate opening in the right program, and everything would work out great. Unfortunately, it’s not that simple for a lot of parents with children newly diagnosed with autism.
First, for a shot of encouragement, read this: Welcome to the Club (A Diary of a Mom).
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 in the last four years, 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 that ran out, we were able to learn through the RDI-based approach at the Relate program at SSCY.
So how can you get started without officially being clients in a program? I read a lot, both books and online. There are some 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 some evaluation and support specific to your child.
No matter what therapy program you choose for your child, your active participation is what makes it work well. Here are my suggestions:
Start by educating yourself. If you are interested in a developmental approach, your first goals will be to understand the program and the ideas of how children grow and learn that lie behind it, and also to understand your child’s profile of 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. And 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 – seeing how the behavior of people with autism is a reasonable response to the world around them, considering the differences in how an autistic person percieves 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 determining your child’s developmental level 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, on developing pragmatic (social) language skills and expanding their communication abilities. 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 where your child is at, 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-centred 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 are available through the SSCY Lending Library at the Rehabilitation Centre for Children, along with many other useful books and videos, and they will mail things to you if you live outside of Winnipeg. There’s also a library for parents at the Child Development Clinic, The public library has them too.
Also keep an eye out for seminars and courses.
- The SSCY Centre offers a 7-evening seminar: Flexible Thinking and Interaction With Your Child at Home, as well as other useful topics.
- MATC offers courses throughout the year on various topics related to autism.
- 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.
We’ll post other upcoming events and resources on this website and in our social media.
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 just a few things to focus on, 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 awhile before they are willing to connect.
Step 3: Give it a Try!
Take a deep breath, set aside some time, and go! 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 saturated. 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.
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.
A great tool is videotaping sessions with your child. 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!
Meeting up with other families with children on the spectrum helps keep things in perspective and provides a safe place to discuss problems. You’re welcome to join our Facebook group and chat online, or find other parents to meet up with for a coffee. Autism parenting blogs can also be a source of encouragement – we’ve listed some in our sidebar.
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. Also, there is a thriving autistic voice online. For example, 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 building a program that is right for your child’s needs.