Parents on educating children with Autism

One thing I find striking about the support for Bryce’s Law is that so much is coming from parents, educators and schools that would not benefit from the scholarship—but they understand the need and that other parents aren’t getting the help they’ve found.

Even the bill’s sponsor knows of the challenges in raising a child with special needs. Dwight Scharnhorst’s grandson had Autism and epilepsy, and succumbed too young to his epilepsy, but Rep. Scharnhorst talks brightly about how much he learned from Bryce.

Bryce’s Law was designed with the best interests of special needs children in mind—and parents agree it will open up opportunities for their children. I’ve covered so much of the criticism and explained why the fears that educrats play upon are quite unfounded, and I could keep repeating the fact until I’m blue in the face, but instead I’d like to cover some of the extraordinary parents who are heroes, advocates, and innovators.

Nashville’s Leslie Face:

Leslie Face has two sons. They are the light of her life, and she delights in their individual personalities. However, with a master’s degree in education, Face knew long before her sons were diagnosed with autism that they were different
“I knew they had special needs,” said Face. “But it was still tough to get the official diagnosis. I started researching constantly about it to learn everything I could, and I found that early and consistent intervention can make a tremendous difference in the lives of these kids.”
Since then, she has spent several days a week loading her boys into the car, making her way to Nashville so that they could attend various therapy appointments and then fighting traffic to get back.

Face thought about others in her position and wondered what they do to maintain jobs while getting their children the help that they need.

“Going to Nashville for appointments can be an all-day process,” she said. “And with children who have special needs, the entire thing can be very stressful as they often react poorly to such excursions.”

It was with that understanding that Face decided to start “Faces of Hope,” an organization dedicated to providing services for special-needs children in Sumner and surrounding counties.

“Autism comes with an entire range of needs, as do other disabilities,” said Face. “While the schools do a great job, there is so much more to it if the child is going to have a well-rounded life.”

Kemp believes a center in Sumner County will alleviate many problems for families who have a difficult time coordinating schedules to get their children to Nashville for those services.

“Parents are never prepared to hear a child has special needs,” she said. “Your children are born, and you have all these hopes and desires for them, and then you get told there are going to be some significant obstacles for them. Where do you go with that?”
With that mindset, Face plans to create a center offering services to everyone, regardless of insurance status or ability to pay.

“Sometimes families with special needs children have to decide whether to buy groceries or buy therapy for the children that week,” she said. “Nobody should have to make that choice.”


Georgina in California:

Hello, my name is Georgina and I live in Ca. I know you are doing a story in our own area but if you could please somehow pass it over to other stations around the US.

I say that because there are so many families who children have this and struggle so much. And if we educate our media, maybe some awareness can come out of it.

I suggest, if you have not already been told, covering about how many times most families have to go to see doctors before they get the right diagnose. That there are still doctors out there like my Ped. doctor which had told me that my son was ADHD and then just gave me drugs for it.

And just like any other parent, I tried it but it did not work. He got worse, so bad that he attacked me. And he was never like that. So we stop the drugs and we had to go ourselves to see what we needed to do.

It wasn't until my teacher who was at one point a child psychologist advised me to see a neuro doctor then go to get an psychological evaluation that I learned what was wrong. We went through hoops before we found out what was wrong with him. And cover please please not just the children that can not function so well with autism but the high functioning one. You don't know what it is like for a parent (like me) who child is like that and how other people treat him when he is having a melt down.

If you ask parents like us, you would be amazed on how many people look at them and say there is nothing wrong with them. And the school system... yeah, they treat them like nothing is wrong with them either because they don't look like the rest of the other kids who have it and are in bad cases. When I tried to give my son's teacher papers on or about his condition, she did not take it. She said that she had a child who had a different type [of autism]. And what people don't understand that yes there are different types but they are different in other areas.

So now we can only hope that his school will either give him what he needs or we may have to get him changed. There are many parents who are battling with their schools about this... you would be amazed or unless you know of many parents already going through that. Thank you for hearing my input. I do hope I have helped a little!

Georgina

Miles’ Mom, Missouri:

It is exhausting dealing with death. It is exhausting dealing with disabilities. Being a mother is too much sometimes. Being a wife, a teacher, a sister and a friend requires giving when there is nothing to give. Of course, there is an upside…or rather lots of them:

- Celebrating and remembering a single person’s amazing life.
- Small, tiny, little itty bitty, accomplishments…like saying “TH” at age three…
- Dates-when you only get three a year with the person who still makes butterflies in your stomach.
- Students who e-mail you five years later.
- Siblings who save your life.
- And lots and lots of friends and co-workers and neighbors and complete strangers who make your life complete and full, and define who you are and what you do in beautiful ways.

As the purpose of this blog is to discuss issues related to dealing with life and children with disabilities. I’ll do that. First and foremost, I’ll say that it is so easy to get lost in the rush of things and I think that is our biggest mistake. The one we’ll regret the most when we look back at this time in our lives.

After 36 years, only three of them spent living w/ACWD I keep thinking I am normal. If you’ve read this blog, you know I routinely go through the realization that LIFE is different with a child with disabilities…I tried to get a dog…didn’t work. Selling the house took 14 months…I’ve lost more friends than I’ve kept…My husband loves me still only because we were meant to be (circumstances have no effect on this kind of love…lucky, lucky beloved me), all holidays pretty much suck…So here is my big life/death realization…STOP RUSHING!

My father died on Thursday February 3, 2008. Since that day, I have heard that phrase at least 25 times. Brother, sisters, in-laws and even strangers keep saying to me, “sit down,” “relax,” “take it easy and just grieve.” Let’s see…I have also been called Mary Poppins, OCD, and totally frigging hyperactive.

All I can think is that my husband took off the day to be with my kids, so I can help out. There is no time for me to help at my leisure. I actually can’t just relax and grieve and think to myself I’ll be there when they need me. My life simply does not work that way. I actually need to schedule according to my life when I can “be there” for people and that just sucks. I probably am a spaz, but it gets stuff done, Here and now I will formally accept the titles of Pollyanna, Mary Poppins and I will revel in their blessings.

My Irish Wake will be perfect, the bagpipers will rock, the eulogies will be verbose, yet pithy. So, my Father died on Thursday. On Saturday we had an appointment with a major news station to discussion tax scholarships for children with disabilities. We wove the interview into our lives hoping that we could some sort of difference. Our feeling is that we have a duty to make a difference. There was lots of cleaning and lots of research. I know for sure I looked like shit on the camera. On Sunday I taught my Mom how to pay all her bills on-line. That required lots and lots of beer…

Oh, yeah, and the Super Bowl party we were supposed to host for my Dad. Right now at 9:50 I’m writing this and have no idea who won or lost, but think about how much my dad wanted New England to win since he’s from there. And I still have no idea how I am going to conduct the funeral because, as ALWAYS, I have no one to watch or care for my sign language speaking baby…

Sunday evening I realized that on Wednesday, the day after the funeral, we have an appointment at Children Mercy Hospital’s Disability Clinic to diagnose Miles. Three years we’ve been waiting for a diagnosis and this appointment has been on the calendar for 7 months. I haven’t filled out all the paper work and I have not finished the program for the funeral. I have to meet with a caterer, a bagpiper, a choir director, a cremator, a priest. I have make 150 color copies of an obituary; I have to set up “final salutes” with the US Navy and the Knights of Columbus. I have to send a mass e-mail to my students convincing them that they should keep doing the work assigned in the syllabus even though I am not holding class.

There are so many small things I haven’t even touched on here. Such as Valentine’s Day, my sister’s birthday, finding a new speech therapist for Miles, Baseball or soccer for Zen? And really all I can think of is life…death…What do I want my last thoughts to be…Yes….yes…I was okay…I loved well…because of that I was loved…I loved and was loved….

So, yes…I’ll let it all go for a bit. Someone else can make sure everything gets done, every step is researched, and planned…all the obligations are kept…Sign language is practiced, lunches, reference letters written, friends know I love them, husband gets a tech thing for V-Day. All of it floating up into the sky in a big hot air balloon of responsibilities.

I’m just going to live for a few minutes and see what it feels like. I’d be willing to bet it feels real, real good to just feel and watch all that love out there…