James Vaughan’s 11-year old son, Kian, is entering the 6th grade in the Weber County public schools in Utah. Kian, who has high functioning autism, has been mainstreamed in public school since the second grade and has made great strides. James attributes the progress to the successful partnership he and his wife have cultivated with the folks at Kian’s school. James is one of many parents sharing his story, tips and team on MyAutismTeam. We recently spoke with him to learn how he has partnered with his public school to create a positive and safe learning environment for Kian. Here are 10 tips we gleaned from speaking with James. Hopefully some of them will help you. You can post questions and comments directly to James’ wall by clicking here .
(10) Get the Official Diagnosis As Early As Possible
Dr. Megan Farley of the University of Utah diagnosed Kian. We didn’t get the official diagnosis until December of last year when he was 10 because we had been worried about saddling him with the label of autism. In retrospect I would say the right time to get a diagnosis is “as early as possible”. Having the official diagnosis in hand, along with some written recommendations from the doctor enabled us to secure even more services for Kian including technology assistance [see #9]. When we decided we wanted a diagnosis we had to be very persistent with our pediatrician to get a referral. He kept assuring us that Kian would outgrow some of his developmental challenges, but in the end agreed to give us the referral when we were persistent.
(9) Be Firm, But Flexible
My wife and I always make sure that every concern we have about Kian is thoroughly understood by our partners at the school, particularly during the IEP process. Talking about his speech delays got us speech therapy. Talking about his challenges interacting with other kids led to social skills therapy, and so on. It’s important to make sure they understand and address each issue. I’m the kind of person that doesn’t take “No” for an answer, but you have to be flexible. There have been times we’ve requested something for Kian that the school hasn’t been able to accommodate. But rather than saying “No” they’ve always said, “I don’t know if we can do that, but here are other options we can do.”
(8) Communicate Frequently All Year, Even After the IEP
The open communications continues after the IEP, otherwise it’s not a real partnership. We regularly check in with Kian’s teachers and aide to make sure we are helping each other. We also keep the focus of the communication on Kian’s development. We let them know things we are trying at home that are working, and notify them of any changes that could impact Kian’s performance in school that day. We’ll say, ” You may see some distraction today – here’s why… .” That helps them understand how to interact with him. Similarly, we want them to tell us about the challenges they are having with Kian at school so we can then work on those issues at home. The more we are open with each other on a regular basis, the better the job we do meeting Kian’s needs. It keeps everyone focused on the goal of his development.
(7) Speech Therapy, Social Skills and 1-on-1 Aides
Before the second grade, Kian was in the school’s alternative kindergarten and first grade program. There, he had a strong speech program and one-on-one time. He flourished. Now, in the mainstream curriculum, he has an aide and is pulled out of class for 30 minutes each day for either speech therapy or social skills integration. That one-on-one time has been critical, and the special attention from the aide makes it easier to accommodate Kian in the classroom.
(6) Ask If Your Child Can be Tested Differently
When the teacher stood up in front of the class and read off questions for the students to answer in writing, Kian couldn’t really respond to this normal classroom testing, but it was not due to a lack of understanding of the material. When we asked, “Can Kian be tested differently?” the school was happy to do so. He now gets tested on computer where he can type his answers — something he can do quite well.
(5) Seek Out Alternatives for Stressful Situations
Going out to recess was more traumatic than fun for Kian. If that is the case for your child, ask if there alternatives. We asked and Kian was able to stay in the classroom during recess so he could read or do some other type of project.
(4) Get Involved If You See Bullying & Teasing
It’s not surprising that a child struggling with social interaction will get teased and sometimes bullied, but it’s certainly not acceptable. If you see it, GET INVOLVED IMMEDIATELY. My wife is a spunky lady. When she sees bullying going on she makes sure that the students and parents involved know about it and are educated about it. But she does it in an understanding way. She explains how kids are different from each other. We’ve increased awareness about bullying at the PTA. PTA is a great thing. You’re mingling with other parents and making them aware of the issues. When other parents become aware of the issue, they then talk to other parents, who in turn, talk to their kids. We’ve received phone calls out of the blue from other parents saying, “I learned about the teasing my child was involved with. You won’t have a problem with that again.”
(3) Start With The Goal of Building a Real Partnership
One of our goals from the outset was to form a strong, open partnership with the people at the school, from the Principal to the teachers and aides, to the Special Education Director. Kian’s challenges were a lot bigger than we could handle on our own. We let them know how much we’d appreciate their help looking out for Kian and making sure his needs were met. We committed to be totally transparent and open with them and to help reinforce the right behaviors at home.
We certainly didn’t want our son to be a distraction to the teachers and other students, but we also wanted to make sure he had everything he needed to develop and grow. The principal of our school recently told me why they’ve always been so open to finding solutions for Kian saying, “You cared, you really showed it was about forming a partnership with us, and you were always up front about the issues before they became a situation.”
(2) Reduce Homework and Leverage Technology
After spending a day with Kian, Dr. Farley immediately suggested a reduced homework load for Kian and suggested we use a computer or other technology to help him type his homework. 20 minutes of normal homework was taking him 1-2 hours to do (partly due to challenges with handwriting). Our school district had a special foundation that was able to provide Kian with an iPAD. He uses the ipad to keep a calendar of his assignments and to type out his work rather than writing everything out by hand. He also receives a reduced amount of homework. Again, this is setting him up to be more successful each day rather than falling behind.
(1) Reach Out to Other Parents
In the autism community, the biggest contributor to hopelessness is not knowing who to talk to and where to go for advice. I like what MyAutismTeam is doing because they make it easy to connect with other parents near me and see which providers they recommend and what kinds of activities they are doing. It’s a great tool to get those relationships started and then be able to expand on them. My wife and I started a program in Utah called FAAST (Families of Autism and Asperger’s Standing Together) that meets monthly. I posted an upcoming meeting on my wall on MyAutismTeam the other week and ended up meeting another parent that way.
– Interview Conducted by Eric Peacock, GM of MyAutismTeam
This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a rising senior at Seton Hall University, majoring in Sports Management. He started the club Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events, while supporting their local autism communities.
Over the past months, I’ve received emails from parents asking for advice in regards to schooling for their son/daughter who is on the spectrum. In this blog, I discuss a situation I dealt with in 4th grade. I would like to note that this occurrence happened years ago when autism was still very new to most public education programs. I consider it a precursor to the discussions today on bullying. It would be great if you would like to comment with your own experiences in school if you have a loved one on the spectrum in the comment section below.
I wasn’t sure how it ended up happening the way it did, it just did.
I was in 4th grade in a Special Ed – Multi-handicapped classroom with kids ranging from the age of 6 to 14.
I was in the middle of recess when a kid in my class started screaming in my right ear.
I started to panic. The noise made me feel uneasy.
I told him to stop. I started to get angry. He stopped.
I looked at the substitute teacher in class who was staring back at me looking more scared at the moment than I was. She was still; emotionless.
I turned in my chair, away from the boy, and watched while my other classmates were hanging out around me.
At this time I tried to focus. I had a hard time getting my thoughts together on what I should do. A scream is directed towards me again. Same guy, but the left ear this time. That is when I lost control.
I stood up and grabbed the chair I was sitting in and pulled it over my head. Now I was the one doing the screaming towards him. The boy’s scream stopped while he looked terrified.
I pushed the chair towards him until he suddenly grabbed it in mid air. I was now pushing the chair towards him while at the same time he was pushing it towards me. The boy was about 5-6 inches taller than I was and maybe 2 or 3 years older. My grip was loosening every second of this back and forth and he was clearly the stronger of the two.
The substitute teacher at about this time started yelling at both of us to stop. I dropped my grip and put my hands up to my ears while the boy got a free love tap with the chair to my right shoulder until he lost his grip and the chair went flying towards the ground.
I remember the substitute teacher specifically tried at a lighter tone, “You are lucky your real teacher isn’t here or you both would be suspended.”
I lost it at this time and went to the back of the classroom to get away, sobbing. The substitute teacher didn’t say another word about the incident for the rest of the period.
I was pretty quiet for the rest of the day until one of my best friends came up to me later that day and said, “I heard what happened. The word is that someone told him you don’t like noise. That’s why he started screaming. He wanted to see what would happen; if he could use it against you.” I rolled my eyes and that’s pretty much all I remember from that day…
After repeated incidents, my parents pulled me out of public school and tried to place me at a private school out of our district, under the “Universal Placement of Students” clause. It was a small, expensive private school for students with neurological impairments. They had to sue our school district to help with funding. This is a process I’m sure many parents with kids on the spectrum have experienced. They also drove me back and forth 50 miles round trip for the next 8 years until I finished high school.
In that private school setting there were only 160 kids. We all had some letters to describe us and the atmosphere was much better. Also everyone on staff was trained to deal with students with some sort of special need.
Looking back now, as a 6’2’’ soon to be college graduate, regardless if the kid knew that I was on the spectrum or not, it made me consider whether other individuals with similar situations as myself are still dealing with similar issues today. While I was growing up, especially in early grammar school, because of the label of being in a “special ed” program, whether I liked it or not, that was the label that was put on my classmates and me. The other kids saw it like that, and we saw it like that.
I don’t expect this to help anyone narrow the choice of where to send a student on the spectrum to school, public, private, mainstreamed, self contained…. Those are all legitimate subjects for another blog post. This was just a look back at what can be described as a right of passage for many “special” kids. It is a passage that no child on the spectrum should have to suffer.
Educators and staff saying, “these are kids being kids” is unacceptable. Even though the kids who tormented me may have had their own special problems, adults need to be aware and step in.
Inclusion for kids on the spectrum is often not the right solution. In my case, I was left in an atmosphere of bullying with no one to help. Public schools are facing dwindling budgets and often aren’t able to provide the protected environment kids on the spectrum need. I was lucky to have parents who found a safe and protective environment for me. Many kids are not as fortunate. I hope by spreading awareness of just how scary our world can sometimes be, people will display more sensitivity and provide the resources for us to feel safe and grow.
If you are involved with Autism Speaks U on your campus and would like your story to be featured on the Autism Speaks blog, please send it to AutismSpeaksU@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.