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Newly Diagnosed With Autism?
What to Expect
I knew that there was something wrong, but I fully expected to hear, "Oh don't worry about it, every child progresses at a different rate." In my gut, I guess I knew I wasn't going to hear that, but I really wanted to hear that. Unfortunately, what I heard was shocking, and a confirmation of my suspicions. "Blah blah blah...7 month old level. Blah blah blah 12 month old level. Blah blah blah...10 month old level..." I could feel my body getting hot, and I tried to focus on the conversation that was happening in front of me. What does all this mean? My head was spinning. It was like seeing my entire life get sucked into a vortex, and the life of my family - although completely out of control all ready, becoming permanently out of control. Everything was now up in the air, and I didn't know what to do next.
I wish I knew then, what I know now. If I did, I wouldn't have felt so hopeless and devastated. I wish...I wish they had focused on the little boys in front of me, and told me some good things about them and that everything was going to be alright. Because that is how it turned out. There was a mountain to climb, but in the end, everything is alright. Not just alright, but wonderful. Today, I wouldn't change any part of my kids, definitely not the autism. Well, I would like it if they did what I asked the first time I ask it. But no kid does that.
So, in case no one has said it to you, "Everything will be alright." You will need to put in a lot of work and you might need to do some crying at first, because you see your child's future and your family's future spiraling out of control and you will have to make some major adjustments. But soon you will stop crying, roll up your sleeves and get to work.
I hope I can make that transition easier for you. On the right side of this page is my group training presentation, specifically created for newly diagnosed parents. Take some time to look it over. I hope it will give you a glimpse into your new life. My goal is to help you sleep at night, and recognize that you may not feel that you know your child best, but you do, and by now, you've gained your child's trust.
As with every child, you are your child's best teacher, which is a good thing. Because no one will treat your child with as much care, love and devotion as you will. There are some family members, therapists and teachers that come close, but they are not the constant presence that you are. Believe it or not, I'm excited for you. You have been given something that few parents are given. Although it might take a long time to see it, and you will experience some heartbreak along the way.
Above are the first 15 slides from my "Newly Diagnosed Parents" presentation.
The slides will scroll to the left. Hold mouse over image to pause.
Here are some notes to accompany the slides.
Slide 1: The Word Autism. The autism diagnosis is necessary for services, so you need the diagnosis. But beware letting it sink in too deep and affect your view of and relationship with your child. Labels are never good. "The smart one. The athletic one. The funny one. The autistic one." Practice when, where and how you use it.
Slide 2, 3 & 4: I've heard a million misconceptions about what autism is and how it affects behaviors. Nothing is cut and dried. There are as many different behaviors as there are people with autism. Each person has their own unique combination of challenges, in their own unique environment, with their own unique education and supports. There is nothing that you can say about autism that is ALWAYS true. I did not expect my kids to be empathetic. They are. I did not expect my kids to understand sarcasm. They do. The only limits are in the minds of the parents, therapists and teachers. Autism does not mean limited.
Slide 5, 6 & 7: The science of autism and other neurological disorders have made amazing advancements since the recently developed ability to scan brains in such great detail. Although the cause of autism is a mystery, the fact that your child has been diagnosed with it is not, and the therapies used with success are quickly identified. With twins, I didn't have oodles of time to do everything that I heard was helpful, so I decided to stick with the science: ABA, OT, and Speech Therapy are the big hitters. When deciding on your child's therapies, keep an open mind and a healthy sense of pessimism. Your child is going to learn and improve anyway, and will most likely be receiving multiple services concurrently. Most improvements you see can logically be tied to your child's natural maturing, support, and the therapies they are receiving. No one service is easily identifiable as the most effective with your child. If you don't like your therapist, get a different one.
Slide 8 through 15: When I refer to something as "everything" it is an abreviated way of saying that the strategy is so effective, you don't want to leave it out.
Are there limits to what your child can do?
Only in the minds of others.
Hover mouse to pause image.
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