Every child with autism deserves to have an education.
Many of you have followed my son’s progress over the years from what I’ve shared of the milestones and success he has achieved and the happy young man he’s become. But what many don’t realize is the obstacles that society creates for our kids, for parents with a child with autism where it seems that everything is a fight when it shouldn’t be.
As I think back to my son where he was diagnosed at the age of five after long waitlists and countless hours and doctors who didn’t understand what autism is, some who said they did but didn’t really, and a system that is so backlogged and flawed with really long waitlists. My son was unable to speak, function, and play with typical children. I was fortunate at the time to have been given the name of a parent who had successfully navigated and pioneered early intervention for her child. I was then introduced to a group of parents with autistic children who were all doing early intervention, and they helped me navigate a very broken and frustrating system and get the help my son needed. Every parent needs that help, that blueprint and map so that they aren’t having to start at ground zero and be preyed upon by those out there who really do prey upon the vulnerability of these very desperate parents.
My son is now a young man in his early twenties and has been active in an ongoing intervention program, social skills programs, and problem solving. And these programs can never end. In the beginning everything he did had to be taught from how to hold a pencil, write his name, read, use the bathroom by himself, make his bed, put on clothes, make a sandwich, and manage basic life skills, such as counting simple numbers, that come to many of us easily. And for him learning basic life skills had him working ten, twenty times harder than you and I. He’s also been taught how to follow instructions, and then there is that simple thing that comes natural to all of us and that is to smile.
These may seem like simple things, but they are not simple to a child who can’t respond to his mother, hug her, or be in a room with other kids—to a child who screams in public and who is a social misfit, unable to be included in school and activities. Mastering skills such as tying his shoes, drawing a picture, sitting with other kids, saying hi, and learning to look at someone, these skills that our average typical kids pick up easily, our autistic kids do not. But at the same time every autistic child is different, from their skill level, how they can learn, to behaviors, and understanding that it is not one way only model of teaching, because when you’ve met one autistic child or adult, you’ve met one. And how to teach that one, isn’t going to be the same as the other child over there. One shoe fits all teaching is something that has been and is an ongoing problem and does not work.
What many don’t realize is what parents go through just trying to obtain medically necessary treatment. The roadblocks that tossed in their way and I remember well, having to advocate and talk to way too many politicians, career and elected. And one of them who didn’t understand any of the issues, problems or what the big deal was said to me yes there is a heavy cost to parents, and governments should provide help, but at the same time they shouldn’t provide all the financial support for services needed, this cost should also be picked up by parents, shared by parents. But every parent out there whose had to navigate the system understands well you have to get past that worry that hits you when your looking at a bill for a one-time visit of over $3000.00 to help your kid, and understand that professional consultants who really know what their doing and are going to help your child are really really expensive. You have to come up with that money to pay for help for your child every month. And that doesn’t include costs for the support workers who are an integral part of the team. These support workers have to be trained by a behavioral consultant, your consultant, so they can act as more than just babysitters, instead contributing to your child’s success. All the success my son has today is thanks to the foundation of support from his early intervention team that as I look back I wonder at times how I did it? But I did and with anything that is challenging, it is one foot in front of the other.
What does intervention consist of? It includes full-time support from a team of workers who are constantly teaching a child the ongoing program outlined by your behavioral consultant. Your child should be making progress that is measured and you can track, and at the same time this never ends, this is like going to school forever. Every skill my son needs to be able to function in society and keep him safe has to be taught. What happens to our young adults with autism who don’t have ongoing intervention and support? Their outcome is bleak and consists of isolation. Eventually, they are stuck someplace out of sight, out of mind—and that is not a life for anyone.
Next week I’ll continue this series that focuses just on autism, services and the navigating a system.
Now for Presale
The moment Brady told his family he was engaged, his fiancée was nowhere to be found.
Six months ago, Brady’s true love, Cassie Arnold, walked into his hometown and his life. Everything was perfect, including their plans for their upcoming wedding—but one night, when he came home, Cassie was gone.
How could she just vanish?
Brady turns to his sheriff brother, Marcus O’Connell, and is stunned by what he discovers. Not only is there no trace of her, but it’s as if she never existed.
As they dig deeper into the days before Cassie vanished, Brady is stunned to learn of a series of mysterious phone calls, and he realizes his bride-to-be and her seemingly perfect smile were hiding dark secrets, including an unsolved murder at her family’s cabin in a hometown he’s never heard of.
Brady soon suspects that to find Cassie, he may also have to figure out what really happened the night of the murder—and why Cassie kept it all a secret.
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“A funny, troubled, complicated, and heartwarming storyline that will keep you reading till the end. This family saga is a very entertaining read. You will want to read the whole series!” ★★★★★ Susan1, Kindle Customer