You won’t be able to build a dream team, even in a city rich in services if you don’t first identify what you and your child need, and that is difficult because you probably don’t know all that is out there, and what you need often changes. Look to your child for guidance.
Once you have the diagnosis, it’s easy to think that the behaviors you see are just a result of the autism and will be sorted (or not sorted), but that’s not enough. Investigate each of those behaviors, and you may find that many can be addressed. Autism can be like a large knot of all the sewing thread you have in your sewing basket. If you want to save the threads, you must slowly pull out each one.
My dream team will not be your dream team because our children are different, but I can speak best from my experience. If you connect with as many parents of children on the spectrum as you can, you’ll gain insight from each of them as to what you need for your current dream team.
Pick one who is dedicated to helping you get a diagnosis and then helping you get services. The one you have now might not be right. If he/she doesn’t answer phone calls or accept email, if you have to wait long periods to get answers, isn’t relentless in providing help, find someone else.
Our pediatrician has been with us since our son was born, but we would leave him immediately if he didn’t give us all that we need. He’s helped us make decisions about things like melatonin and Cannabidiol (CBD), proactively recommended tests in things like vision and hearing, and even found recipes for us. He is also mindful of the needs of our neurotypical son who struggles at times with having an autistic brother.
There are countless support groups you can find through your county, school, or Facebook. You’ll see just how complex the issues that often come with autism can be, things you’ve never imagined. From this, you can look at your child and start to form a picture of his/her needs. From my Facebook group, I have learned a great deal about my rights with the school district concerning our son’s Individualized Education Program (IEP). I’ve also enjoyed a few coffee dates and a meal where I was able to relax with a large group of people who ‘get it.’
Talk to the parents of your child’s classmates or the parents you sit with in the waiting area of therapy offices where you spend so much time. I did this and learned about PROMPT therapy, which greatly helped my son’s language development. Listen to what the people in these groups say about their own teams and start to form some ideas about what you want.
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Your child’s needs will change as he/she grows. When mine was first diagnosed at two-and-a-half, his sensory issues overshadowed all else. Occupational therapy (OT) ruled our lives, and we chose therapists for his other needs that incorporated OT. By the time he started school, his physical sensitivities were being managed, and social skills took priority, so we switched therapists. At nine years old, bilateral integration issues are interfering with academic, verbal, and social growth, so that is our focus. We haven’t forgotten the other therapies at any point, but we’ve changed with his needs and will continue to do so.
Put your child into as many situations as you possibly can. You don’t know what might spark an interest, bring him/her delight, or coax a behavior. We took our son to several daycare facilities when he was very young (church, the gym, preschool) and learned that he prefers male caregivers. You may learn that your child loves dance or art.
Your role on the team and find someone who will help you set attainable goals for yourself in that role. You alone are not the dream team. Your role as Mom/Dad is vital and often trying to be anything along with that (Applied Behavior Analysis (ABA), tutor, coach, etc.) can leave both you and your child lost.
The phrase dream team suggests something rare and unattainable, but if you’ll accept that it is a work in progress, you can have it. Often it is in retrospect that I see the dream teams that we have had for our son, and I know that with continued diligence, he will have more.
This article was featured in Issue 92 – Developing Social Skills for Life