Caveat Emptor or Buyer Beware – Know Your ASD Services
Other parents are often your best resource. You can meet parents with a similar focus by joining your local autism support group. Parents that are further along the journey are often eager to share their discoveries with other parents. We can’t do everything on our own and everyone has different interests and backgrounds. I am always surprised to hear what people have read, discovered on the web, speakers they’ve heard, or what they’ve found helpful from a seminar they’ve attended. Parents instinctively know there’s strength in numbers and when they pool their resources and knowledge, they can create change. If there isn’t an autism support group in your area, check out the parent resource centre in your community or even the local YMCA or similar organization. There’s bound to be some like-minded individuals in those places.
Consider having another person in the room at meetings regarding your child. This can be a friend, community advocate, parent – anyone that could play a supportive role. Talking about your child and advocating for them is both stressful and emotional. It can be difficult to take in pertinent information or relay facts and concerns about your child. The support person can help you clarify your thoughts, remind you about points you wanted to bring up, and they can take notes for you. It may also come in handy to have a witness to what has transpired in a meeting. A support person can also assist you in articulating your child’s need for support or services and what they require.
Contact your local autism society with questions. Their staff are often the ones who know government policy inside out because they are advocating on behalf of families all the time. Autism societies are often involved in government lobbying. They also offer free workshops, support groups, a resource library, and can also connect you with other parents who can help. They often know about services and how to access them. They can help you fill out daunting applications and tell you how to best “word” your wishes.
Check in with your physican a few times a year. They go to conferences, seminars and read a great deal. They also hear things from other patients. I pass on loads of information and updates to my physician at every appointment, hoping he will share it with the patients who need it.
Look for pamphlets and free resource material when you are out and about. You may find these items at a community centre, hospital, library, doctor’s office or health clinic. Start a file to store information you find. “Like” Facebook groups on special needs topics and select them for your news-feed. Autism Awareness Centre has an excellent Facebook page that I update every other day with the latest research, services, conferences, new books – all kinds of things related to autism.
Even though we live in an information age, I still find people to be one of the best resources rather than websites. Talk to others about your concerns, what you’re looking for, and ask questions. You’ll find the answers in the unlikeliest of places. Remember, that you are a consumer of services for your child. Services have to be evaluated and modified as needs change. One size doesn’t fit all. My next funding meeting will not be conducted on my own – I am leaning on another parent who has been through contract negotiation before and will help me ask the right questions. Hopefully, my search for appropriate services will be smoother this time.
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