Tag Archives: advocacy

Doing More

Advocacy is important to me – it’s part of why I blog. I also want to teach my kids that we’re here to help each other out. I encouraged Nigel to participate in a Habitat for Humanity walk last year, he does Scouting for Food with Boy Scouts, and he and Aidan often go with me to donate to local charities. In that vein, promoting autism awareness comes naturally to me.

My good friend and fellow blogger, Jenn at Devin’s Journey, wrote a few days ago about today being World Autism Awareness Day. I love the thought of that, seeing as autism knows no political borders. Not only did Jenn remind us of the day, she asked what we were doing for it. Aside from my ongoing campaign to eradicate the r-word from my workplace, I thought of more that I could do.

First of all, I’m doing something close to home, because there is still so much that needs to be accomplished right in our own backyard. So today I’m going to email the principal at Nigel’s school and restart my wheel-squeaking about implementing a Circle of Friends program there. I had sent the principal a link to the ABC News autism page, which features a video that discusses ASD and bullying, and how beneficial the Circle of Friends-type of program has been for the school in the video. I sent the link in an email almost three weeks ago and haven’t heard back yet, so it’s time for some serious squeaking.

I also think that today is the perfect occasion to announce my plans for this summer. I have posted previously about Knowledge for People, a non-profit dedicated to autism education and outreach for developing countries. In July, they are going to Nepal, and I am thrilled to be joining them (!) as a parent liaison and sensory issues presenter. It’s one of those “opportunity knocks” situations – my boys are with their dad in July, I’ve always wanted to go to Nepal, and things just came together, as they so often do when something just feels right. I am so excited to be doing this! Not only to have the opportunity to go to Nepal, but to have the opportunity to help others understand autism and learn how they can help their children in a place where knowledge and resources are so limited. With all the hurdles we face here in the US with getting services for our children, at least the services exist, at least people have heard of autism. At least we can do something for our kids. All parents – everywhere – should be so fortunate.

It’s a done deal, folks. I’ve got my tickets, my backpack, and my spirit of adventure. Just doing my part for World Autism Awareness, one country at a time.

Army of Advocates

I’ve been thinking lately about this army that I’ve been part of for almost eleven years. The first few years I was fighting the autism itself, grasping at therapies and treatments when there wasn’t much out there, as far as resources and current information. And, in my state of shock, I was referred to an excellent agency called Child Development Services. They had current information. They helped my son, those speech therapists, occupational therapists, behavior consultants, and autism specialists.  In my mind we were fighting the autism. I wanted things to get back to normal.

Then I realized I had to find a new normal. I realized that my son wasn’t going to “grow out of it.” He would progress, he would slowly, painstakingly learn to talk, he would gradually learn to filter the sensory input that often caused him to scream and writhe in public. And my fight changed a bit. I tried to mainstream my son, and I came to feel like I was fighting the school district. He had an educational assistant (two, sometimes); we had weekly meetings during which his teacher actually rolled her eyes when discussing my son; I came to the school and found him running around the halls aimlessly. This was not a new normal that I could live with, so we switched schools. Again.

Now I’ve accepted that the fight will continue indefinitely, but it continues to change. Now that I’m homeschooling, I don’t feel like I’m fighting the school district, although I should have. In the space of his last six weeks there, they suspended my autistic son twice, for behavior that he could not control. Part of me wishes I had taken them to court, but I didn’t have the time or the energy, really. And my younger son had to still be enrolled in that district, to stay with his friends. I had to consider his needs as well.

We are all still fighting. We all have our own crosses to bear. I once read or heard an analogy that if all the people in the world were lined up next to each other, and we could put all our problems in a suitcase and set it in front of us and then trade suitcases with someone else, in the end we would pick up our own suitcase and carry on with that. Some of us are fighting the autism, some of us are fighting the school district, and some of us are fighting the ignorant public, trying to find a place in it for our kids. A place of acceptance and a place of dignity.

So here’s to all of us who pick up our own damn suitcase every day and continue on. We may not have enlisted in this army, but we believe in the cause, and we’ll keep fighting.

What to Do If Your Child Is Being Bullied

This is the first post in a new category called Tips from the Trenches. I’ll try making lists like these of various topics on a regular basis to contribute to that category.

1. Communicate with your child. Often kids will not elect to tell parents about bullying, for whatever reason. Nigel said he didn’t want me to worry, so he didn’t tell me until I started noticing his classic stress symptoms: bald spots from pulling out his own hair and badly chapped lips and mouth area. Pick up on any non-verbal cues your child has to indicate stress and then ask them if someone has been bothering them. Sometimes you have to drag it out of them, as I did with Nigel.

2. Remind your child how smart he/she is and how much you love him/her. Bolster his/her self-esteem as much as you can. Assure your child that you’ll do everything you can to get the bullying to stop.

3. Contact your child’s teacher(s). Diplomatically state what is happening and offer any suggestions you may have for stopping it.

4. Within a week check in with your child to see if there are any changes in the situation. Check in with the teacher(s) to see what has been done and report to them what your child has indicated about the situation now.

5. If the situation has not improved within two weeks, contact the dean or principal. It is a good idea to be familiar with them anyway, because they need to know all of their special needs kids, and they like to be aware of how involved you are as a parent.

6. Keep tabs on the situation. Keep checking in with your child. I made the mistake of assuming that things were okay and not asking. We must be vigilant advocates. If we don’t advocate for our children, who will?

7. Be the squeaky wheel. If necessary, have the dean or principal schedule a meeting with the bully’s parents (with the dean or principal in attendance). Do not accept bullying. Unfortunately we can’t all homeschool our children. But what we can do is send a very strong message to the schools that we parents of autistic kids will not tolerate bullying or any form of harassment. Don’t accept “Kids will be kids” or “This is a difficult age group” as excuses for bullying. It’s discrimination against someone with a disability. And it needs to stop.

Insurance Coverage

This seems like a no-brainer. When someone is diagnosed with cancer, insurance (minus deductibles, etc.) covers radiation treatment. When someone is injured and needs physical therapy, insurance covers it. When someone is diagnosed with autism, why is treatment not universally eligible for coverage? According to a recent article featured in the Medford Mail Tribune, thirteen states have currently enacted an insurance mandate for coverage of autism treatment. Thirteen. Out of fifty. How lousy is that? 

We shouldn’t have to fight for this. We shouldn’t have to put on our advocate hats and write to our state representatives and lobby for something that should already be covered. We’re not talking about cosmetic surgery. We’re talking about treatments and therapy that will improve our children’s health and their ability to function.  How the proven benefits of autism treatments come into question by insurance companies is beyond my comprehension.

But even though we all know this issue to be a no-brainer, we will write to our representatives, we will fight for this. Because that’s how things get done, that’s how our children’s needs get met. That’s what we do with the school district and how we raise awareness within our community. We need universal insurance coverage for autism treatments and therapies. Since this is accomplished on an individual state basis, contact your representatives by going to http://www.senate.gov/ and http://www.house.gov/. Let them know you support insurance coverage for autism treatment and therapy and urge them to do the same. 

I plan on telling my representatives about what a difference these treatments have made in my son’s life, and that every parent of an autistic child deserves the opportunity to improve their child’s health, whether they are able to pay for it or not. After all, that’s what insurance is for.