This is a blog post by Eric Peacock of MyAutismTeam.
This past Sunday morning I was in Seattle at the US Autism & Asperger Association Conferenceand fortunate enough to catch a panel on “Siblings of People with Autism.” The Panel had five young, neuro-typical men and women ranging in age from 14 to 27, each of whom have siblings on the autism spectrum. I was impressed by the poise, sense of humor, courage and wisdom of this panel and just wanted to pass on a few pointers for parent that I took away from the panel.Open up a channel of communication with your neuro-typical child – All 5 panelists understand that their parents need to spend more time with their sibling on the spectrum, and don’t really seem to resent that fact. They just want to occasionally be asked how they feel about all of it. And it’s not really a time for you to talk. “Don’t feel you have to lecture or provider more answers…just listen.” Just asking about it let’s the child know it’s ok for them to talk and even voice complaints about their situation or feelings.
- Talk about bullying – It’s a typical sibling instinct (for both girls and boys) to jump into the thick of things to defend their sibling on the spectrum from bullying. So they’ll do it, but often it’s a scary or uncomfortable feeling. Sometimes just a word from you like, “If you see your brother being bullied at school, find a teacher and tell them about it” – will remind them they don’t have to take on all that responsibility by themselves. At a minimum, they may pause to notify someone to get help before they step in. For other tips on how to proactively prevent bullying please check out “IEPs, IPads and Bullies – 10 Tips from a Dad Who Has Been There”
- Start planning early- for when your child on the spectrum becomes an adult, AND for when you are no longer able to watch over him. There were several talks on this topic over the weekend at the conference. In a country where most Americans haven’t properly prepared for their own retirements, let alone that of a special-needs child, this is a daunting topic . As your neuro-typical kids become young adults they’ll start to think and worry about this, and be prepared to talk about it. One woman on the panel already knows that she would be her brother’s legal guardian should anything happened to her parents. Others weren’t sure what kind of plan was in place. The comment that took the cake (and brought tears to my eyes) was when the 14-year old girl on the panel said, “Well, I’m still a little young to be thinking about what will happen when my parents die, but I’ll take care of my brother.”
- Preparing their friends – As kids, and young adults, most panelists became accustomed to giving an “Autism 101” talk to their friends before they first meet a sibling on the spectrum – just to let them know what to expect. One woman told a hysterical story about her little brother Mikey who went through a phase when he was younger. I paraphrase, “Mikey was really into rain boots…… Just rain boots. One time I had my first boyfriend over the house and Mikey walked in wearing nothing but his rain boots.” – On a more serious and actionable note, many parents are now going into their kid’s first-grade classrooms to explain autism, so that kids (and their teachers) get a better understanding of this early on in life.
- The “R” word – Related to the above, one word that really can be upsetting to people is any derogatory / casual use of the word “retarded”. They often have to explain to their friends why that is upsetting.
- “Pockets of normalcy” – At some point your kids may seek “pockets of normalcy” – times when they can experience life as though they didn’t have a sibling on the spectrum. This may lead them – when they are old enough – to spend more time at their friend’s house than at yours. “Our house was always a mess and crazy. I spent most of high school at friend’s houses.”
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