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.”
Over 700 parents of teenagers with Asperger’s Disorder have registered on MyAutismTeam.com – a site where parents of children on the autism spectrum connect, share recommendations of local providers, and share tips with each other. That’s about 20% of all parents on the site. These parents have spent years building up their “autism teams” – all of the providers needed to help their children develop and thrive. They have endured a lot of “trial and error” to find what therapies (and which providers) work best for their teens. We looked at all the parents of children with Asperger’s Disorder on MyAutismTeam, narrowed it down to those with teens on the spectrum, and read through their stories and teams. Summarized below are five of the more common, and five more unique, types of providers on these parents’ teams.
5 Common Team Members for Teens with Asperger’s
5. Pediatrician – Every child needs one, but finding one with some understanding of autism and sensitivity to the needs of a child on the spectrum is important. Autism was not nearly as recognized 10 years ago (when many of these parents were first seeking answers) as it is now, so some parents have had to “break in” their pediatricians over the years – sticking to their guns and insisting on a referral for a diagnosis when the pediatrician has told them something like, “Speech delays are normal for a boy of his age”. You may not find a pediatrician with formal training in autism, but it’s helpful to find those that regularly see kids on the spectrum. If you need help, there are over 670 pediatricians marked “Autism-Yes” on MyAutismTeam (meaning another parent or our partner, Autism Speaks, has indicated that the pediatrician is experienced working with children on the spectrum.) If you can recommend a fabulous pediatrician, please find them on MyAutismTeam and add them to your team. A word from you can save another parent months of “trial and error.”
4. Psychiatrist / Psychologist – For initial and ongoing evaluations that not only help guide the types of therapies you pursue for your child, but also help in securing necessary services from schools and insurance companies. A psychiatrist has a medical degree and can prescribe medications. A psychologist has a doctoral-level degree in psychology. (Note: Many parents report seeing a Neurologist as well.)
3. Dentists – It’s hard enough to bring a neurotypical child to the dentist every six months, but to a child with Asperger’s and sensory sensitivity, a trip to the dentist can be daunting (even for a teen). That’s probably why so many parents list a dentist as part of their Autism Teams. Finding a dentist that is sensitive to those needs and skilled at working around them is a big deal. Some parents seek out dentists that put their patients under anesthesia to make the process go more smoothly. Check out Autism Speak’s Dental Tool Kit for more tips on making visits to the dentist office less stressful and more productive.
2. Early Intervention Therapists – When asked “What therapies worked best for your child” more parents respond that ABA, occupational, social integration and speech therapy were the most effective in helping their children make progress. They seek these therapies out through their IEPs at school, privately if they can afford them, and through other local resources where they exist. One of the most common challenges parents discuss on the site is helping their teens build social skills and relationships with other kids their age. BethComptonMathie ofMorristown,Tennessee explains, “My son used to have friends but the older he gets, the harder it gets. [He] is focused on video games.” She has tried social classes over the summer and her son now works with a psychologist who visits the school each week from the same summer program. Other parents have reported that occupational therapists have vastly improved their child’s handwriting.
1. Respite Care - Every parent needs a break of some sort. A time to run an errand , do something for themselves, or just recuperate. Many parents list the local chapters of Easter Seals as an invaluable resource for finding respite care and preserving their personal sanity. As one veteran mom responded on lessons she’s learned, “I wish I knew how important it was that I make myself a priority. It’s the little things that I carve out in MY life to self-nurture that give me the strength to live, laugh and love more deeply today and be the best parent I can be.”
5 More Unique Providers You May Not Have Considered
5. Martial Arts Instructors – Martial arts from an understanding instructor can promote focus, discipline, self-confidence, and physical stamina. Numerous parents on MyAutismTeam start their child in martial arts classes at age 5 or 6. In some instances it’s an activity that dads do with their children.
4. Horseback Riding Therapy – Occupational therapy through horseback riding can be a wonderful experience for kids with special needs. CaddysLady of Vancouver Washington lists two such providers on her autism team.
3. Attorneys – Sometimes attorneys specializing in special education law have been helpful for parents struggling to get the appropriate services from their school district or in securing coverage of key therapies from insurance companies. One New Jersey mother of a 20 year old with Asperger’s has an attorney to help secure the things the services that come after the teenage years. “After 2 years of fighting for Transitional Education, and winning in Court, my son has almost completed his first 30 days in a specialized school.”
2. Piano Lessons – Quite a few parents have piano teachers on their autism teams. I think a mother of 5 year-old (not a teenager) with Asperger’s, Sharon Esch ofAlbuquerque,New Mexico, sums it up perfectly. “Music seems to be a great therapy for [my son], giving him an opportunity to work on fine motor skills in a way that doesn’t seem like work. Also, I think he enjoys the immediate response of hearing music when he plays, something he controls himself.”
1. Barbers – Like the dentists, every child needs a barber, and every child on the spectrum needs a barber who “gets it.” For a particularly inspired and touching account of the bond between one teen turned adult on the spectrum and his barber read Laura Shumaker’s brilliant piece, “Mentor, Helper Friend.”
Who’s On Your Team?
You can see all of the parents of children with Asperger’s Disorder on MyAutismTeam and read through their stories and see their teams. You can also post on their walls and ask them questions. If you have fabulous local providers you can recommend to other parents just starting out on this journey, we hope you’ll join MyAutismTeam and share your wisdom!
Posted byEric Peacock, GM of MyAutismTeam
Parenting a child on the autism spectrum is challenging enough. Now imagine your spouse’s job involves moving the whole family to a new state every three years – and your spouse gets deployed to war zones for year-long stints, leaving you to hold down the fort at home. Such is the case of many military spouses, including Kristin Proffitt of Colorado Springs, CO, and Kristina Matthiesen of Columbus, Georgia. Relocations, single-parenting, lining up new providers, and building new support networks are topics these women know intimately. Kristina and Kristin were kind enough to sit down with me and share 5 key lessons learned in the past few years that are applicable to most parents of a children on the spectrum. At the end, they also share specific tips for parents in the military.
5 Tips for All Parents
5. Seek Alternatives to Long Wait Lists for Diagnosis – Kristin Proffitt’s son, J.J., was 16 months old when her husband Josh was relocated from a base in Georgia to Ft. Carson in Colorado Springs. “J.J. didn’t take the move well and at 17 months of age, he lost all his words,” explains Kristin. “The wait list to see a developmental pediatrician at Denver Children’s was insane. All told it was going to be about 12 months before we could get a diagnosis. So I looked around and found a private clinic called Legacy Comprehensive Counseling that could get us in within two weeks. I had to do a little negotiation with Tricare (the military’s health plan) to get it covered, but we did it: got the diagnosis, and got J.J. into early intervention services much sooner.”
4. Start Evidence-based Early Intervention Programs - A report of the U.S. Surgeon General states that thirty years of research on the ABA approach have shown very positive outcomes when ABA is used as an early intervention tool for autism. Like many military parents on MyAutismTeam.com, both Kristin and Kristina have ABA providers on their teams to supplement the services their kids receive through their IEPs. While there are still many insurance plans that do not cover ABA therapy, fortunately for these military moms, Tricare does.
- ABA Therapy - Kristina: “When we finally switched to a certified ABA therapist in Columbus, the change could be seen within the first week. A true ABA therapist will pinpoint exactly what your child needs to work on and update their goals often (ours is weekly).”
Kristin: “We met our ABA therapist through parent training and got her to start coming to the house twice a week to work with J.J. We have a great rapport with Kelley. She’s the only therapist J.J. refers to by name.”
- Speech Therapy once a week – “J.J.’s made incredible gains. He’s 3 years old. In November he was just starting to say ‘ball’, but now he has a vocabulary of over 125 words and he’s starting to string together two to three words at a time.”
Speech was also the biggest developmental area for Kristina’s son and the area in which he’s made the most progress.
- Occupational Therapy once a week – Kristina reports, “We’ve been going to the OT for about six months and have seen a great deal of improvement in my son’s handwriting.”
Kristin’s OT focuses on another area entirely. “J.J.’s a ‘sensory seeker’ and a runner with no sense of danger,” explained Kristin. “He crashes into things and people. We have had to put additional deadbolts out of his reach on all our doors to make sure he doesn’t run out and endanger himself. Our OT is helping him with sensory integration.”
3. Don’t Settle With Providers You’re Not Comfortable With and Trust the Ones You Like – Kristin considers herself blessed to live in Colorado Springs where the special needs services and providers are relatively bountiful. “If you’re not comfortable with you pediatrician or specialist, don’t let Tricare (or anyone else) pigeon-hole you into using someone you don’t want.”
She also points out the importance of being open to the suggestions of providers you have grown to trust. “When J.J. went to school I was convinced it would be best if I were to drive him instead of letting him take the bus. Our ABA therapist encouraged me otherwise, saying the school bus ride would build valuable routine into his day and make it easier for me to drop in at school to observe without him assuming it was time to go home. She was right, and it turns out that riding the school bus is the highlight of J.J.’s day!”
2. Incorporate Fun Extra-Curricular Activities into Your Team – Many parents on MyAutismTeam have extra-curricular activities on their teams – from piano lessons to gymnastics to martial arts. Kristina has a Taekwondo gym on her team. “They work on things like listening, following directions, and of course taekwondo skills in a fun environment that the kids enjoy.”
1. Reach Out / Don’t Do It Alone – Having moved cities multiple times and faced extended, stressful periods of single-parenting while their husbands are deployed, both women understand the importance of reaching out for help. “You need to find the emotional support in your community – online or locally.”
- Reach Out Locally: “When you’re moving so much it’s hard to keep putting yourself out there,” explains Kristina who had to move from Texas to Georgia just ten days after receiving her son’s diagnosis of PDD-NOS. “When you have a child that isn’t acting in a socially normal way – it can be even harder to put yourself out there, but you need to reach out. I’m more comfortable around someone who has a child on the spectrum because nothing fazes them anymore! Searching for parents near you on MyAutismTeam is a great way to find other people in your area (military or not) and a place to find new providers. I also turned to the local mother’s club website.”
- Reach Out Online: Despite being separated by 1400 miles, Kristin and Kristina connected on MyAutismTeam when they saw they were both Army Wives. “I definitely try to connect with other military spouses,” explains Kristin. “I can identify with them more no matter where they are stationed or what branch they are in. I can feel more comfortable with them saying, “My husband is deployed” because they instantly knows what that entails. “
(Note: More broadly – we see this trend happening on the MyAutismTeam live feed where geographically separated parents connect to discuss common challenges such as family members blaming autism on “bad parenting”, feeling isolated (another military mom), acting up in school, sleeping problems, feeling overwhelmed by new autism diagnosis, and transition to adulthood.)
Additional Tips for Parents in the Military
Heather Hebdon, Founder of Specialized Training of Military Parents (www.stompproject.org) reports that 1 in 50 children of military parents are diagnosed on the autism spectrum. That rate is higher than the 1 in 110 ratio typically quoted for the United States. The military has been relatively forward thinking when it comes to helping families dealing with special needs. Here are some extra tips Kristin and Kristina shared for parents in the military.
- Sign up for EFMP (Exceptional Family Member Program). The different branches of the military have their own programs. More information about EFMP can be found on the Military Homefront site.
- Enroll in ECHO – Echo is the Extended Care Health Option, a program through Tricare open to people who need assistance above and beyond EFMP. Having ECHO allows you to get coverage for ABA therapy and more. Kristin reports, “Our EFMP case manager at our on post hospital told us about ECHO. J.J. was automatically approved for it since he already had been diagnosed on the spectrum.”
- Become friendly with your EFMP coordinator and the Pediatrician – Kristin: “Get on a very good basis with your pediatrician, particularly if they are on a MTF (Military Treatment Facility) on post, as well as your EFMP coordinator. Dr. Choate, our pediatrician, knows us and knows what J.J. needs. That personal relationship makes your providers want to fight for you. Our EFMP coordinator, Laurie, has been an invaluable resource and member of our team. She knows Dr. Choate and she will talk to him about getting us a referral (like for a speech therapist and OT) when we need it.
- Talk to Tricare when you need another referral or another options. “You don’t have to settle for the first referral you’re handed .”
- Encourage providers you like to register with Tricare so you can continue to work with them and get it covered.
Kristin: “We met our ABA therapist, and OT through the early intervention program in Colorado Springs. When J.J. was about to age out of early intervention, we got both of them to register with Tricare so that we could continue to work with them as J.J. got older. “
- Research New Providers Ahead of Your PCS & Share Your Team for Other Military Parents - Kristina: “I know MyAutismTeam will be really helpful when we are PCS’ing. I will be able to look ahead and see what services are in the area and what people there can tell me about those providers. There’s nowhere else I’m going to get that information, military or not. It makes me want to share my team to help out other military parents who might move to my base.”
- Interview Conducted by Eric Peacock, GM of MyAutismTeam. @MyAutismTeam @ejpeacock
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