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Posts tagged ‘Parenting’

Music & Autism: How Music Helped One Mother Connect With Her Son

 “Music is the shorthand of emotion” – Leo Tolstoy

After her friend suggested that she join MyAutismTeam, Amy Pentz, of Riverview, Florida, used her phone to check it out. On the homepage of the social network for parents of kids with autism, she played the MyAutismTeam video tour, while her almost-3-year old son watched a movie. When the theme music for the video tour began, her son’s ears perked up, he turned around, began dancing, moving his arms and feet, smiling, making eye contact, and for a moment, “Autism didn’t exist. The music was so cheery, it made him happy listening to it,” says Amy, the self-described stay at home mom.

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Amy joined MyAutismTeam to get “a little help, support and camaraderie” from other parents who’ve been in her shoes. She wanted to be connected to those who understood the daily ups and downs of raising a child with autism. Little did she realize she would end up connecting even more with her son, Dayne, with the music from the site.

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“He’s never responded to any other music. Classical, country, rock… I’ve tried everything. But nothing has ever got him up and moving like the song that played on the MyAutismTeam video.”

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Here is a video of Dayne feeling the music.

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Amy explains, “I suspected that he was “quirky” when he was around 18-months-old, and lost all of his verbal language. My concerns were ignored by his pediatrician, so I found a new one who listened to me. Over the next year, there were numerous speech/language, occupational & behavioral evaluations. November 7, 2012, my suspicions were confirmed by an ADOS test.”

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Dayne, who will be three this month, gets a lot of therapy through a team of providers (Occupational Therapist, Speech Therapist, Behavioral Therapist and soon an ABA Therapist) at Total Therapy. One member of Amy and Dayne’s team is Nicole Shea, an occupational therapist who also specializes in Therapeutic Listening, and who first introduced Amy to music therapy, combined with the other OT and ABA therapy Dayne was benefiting from.

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The American Music Therapy Association says that music therapists, like Nicole Shea,

…use music therapy to enable those without verbal language to communicate, participate and express themselves non-verbally. Very often music therapy also assists in the development of verbal communication, speech, and language skills.

The interpersonal timing and reciprocity in shared play, turn-taking, listening and responding to another person are augmented in music therapy with children and adults with autism to accommodate and address their styles of communication.

The rhythmic component of music is very organizing for the sensory systems of

individuals diagnosed with autism. As a result, auditory processing and other sensory-motor, perceptual/motor, gross and fine motor skills can be enhanced through music therapy.

Musical elements and structures provide a sense of security and familiarity in the music therapy setting, encouraging individuals with ASD to attempt new tasks in a predictable but malleable framework.

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treble-clefZingDog, the musician and composer who wrote Happy Campers, the song that Amy’s son, Dayne connected with, had no idea how much the cheery music moved Dayne. “I was very pleased to hear the effect my music had on Dayne. It is both humbling and very satisfying to know that my music has made a connection with people. It makes me smile,” says the musician.

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“I wrote Happy Campers over the course of a few hours, so it happened about as quickly as all of my music does. I picked that title because to me it conjures up images of happy kids without a care in the world. I try to envision how each piece of music could be used and what visual images would work well with what I’m composing.”

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When asked about other music recommendations similar to Happy Campers, ZingDog agrees that musicians like Feist, Jack Johnson and Ingrid Michaelson also offer a collection of up-beat music.

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A Look Back To 2012

At MyAutismTeam, we looked back on some of our favorite stories of kids with autism ‘feeling the music’ in 2012. Besides Dayne, here are two more kids on the spectrum who connect with music in their own ways.

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Jacob, a blind child with autism literally feeling the music with this street:

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Ethan, the 6-year-old playing Billy Joel’s Piano Man accompanied by his music therapist on guitar:

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Do you have a story to share about your child with autism? Share it with us on MyAutismTeam.com, the social network just for parents like you. Are you a parent looking for music therapy for your child? Browse the music therapists listed in the MyAutismTeam Provider Directory (Keyword: “Music Therapy” Location: U.S.).

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The Trouble With Eye Contact

Navigating Asperger’s and reflecting on other learning differences

by Michael McManmon, Ed.D., (originally published in Psychology Today)

SHIFT HAPPENS: Letting go can make all the difference

I was recently speaking with some college students about cognitive rigidity and transitions. We were discussing how, as a young adult on the autism spectrum, shifting to the next stage of their life can be difficult for not only themselves but also their parents. I asked them to attempt to take perspective of the situation their parents are facing.

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A student in the group raised his hand and stated, “Shift happens!” Everyone in the room had a good laugh. The next day I ordered a dozen or so tee-shirts with the phrase “Shift Happens” in big bold letters across the front, and presented one to the student who had so wittingly coined the phrase.

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Those of us who work with young adults with ASD (autism spectrum disorders) are often stymied by their rigidity. In addition to teachers and other professionals, it’s important for the parents role to change as their son or daughter transitions or “shifts” into the next stage of their life. The symbiotic relationship that develops in early years between a parent (usually a mom) and their son or daughter with a learning difference needs to evolve and change. These young adults need to be given the opportunity to take the lead and advocate for their needs. Many times they are more capable than you or I even know.

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I call this “cutting the steel umbilical cord.” It has to be cut from both sides with a diamond blade. If a parent persists with the same supports they provided for their son or daughter in junior high or high school, it can actually work against the student’s progress.

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The fact is, the more a parent slowly lets go, the better the student does. The key is being able to teach the student to self-actualize. They need to become their own advocate as they shift to the next stage in their life, and the earlier the better. Whatever they can start to do for themselves, let them do it. Show them, don’t do it for them.

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The biggest problems occur when a parent folds their life around their student and develops their own emotional need to be involved. While this is an important part of parenting a child, it can dis-empower a young adult and may lead to “learned helplessness”. Many parents I speak with have the same worry, that their son or daughter may end up living at home playing video games until they are 35. What I am speaking about is a classic example of a ‘less is more’ type of approach; ‘being” rather than “doing’.

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It is a real art to know when to help, how much and for how long. Parenting a young adult on the autism spectrum can be challenging and there are no easy answers. Parents can ask themselves when should their son or daughter need to feel the pain or the repercussions of their actions? When should they step in or sit on the sidelines?

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The sayings ‘calm mom, calm child’, ‘flexible parent, flexible student’ ring true. Taking care of oneself is crucial. You cannot give something you don’t have to someone. You are useless to another person if you are anxious, fearful or controlling. Parents can transmit this fear and anxiety.

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An adolescent with special needs benefits from a parent who is healthy and clear minded. If parents take proper care of their own personal needs, they will be in a better position to help their son or daughter make the shift to independence. By modeling a peaceful, healthy lifestyle and resisting the urge to continually step in and fix problems for their son or daughter, their young adult will have the best chance for long term success.

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When a young adult is beginning to shift or transition to the next stage, a parent can slowly let go and focus on taking care of their own needs. Like the flight attendants say “put your mask on first before your child’s”.

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Originally Published on Psychology Today

Dr. Michael McManmomMichael McManmon, Ed.D., holds a doctorate in special education from the University of Nevada/ Las Vegas, a masters in Counseling from Shippensburg University and a masters in Human Development from the University of Kansas. He is the father of seven children from 45 years old to 6 years old. His oldest child was the first interacial adoption in Nevada History. His youngest child is also adopted and has Autism and ADD. He has eleven grand children. He is the founder of the College Internship Program and works with students with learning differences and Asperger’s syndrome. McManmon has worked on curriculum development, staff training, program evaluation, and administering community based programming. He has an inside perspective as he himself was diagnosed with Asperger’s syndrome and grew up in a large family with several individuals on the spectrum. He speaks nationally and internationally on topics related to the CIP curriculum and Aspergers Syndrome. His book Made for Good Purpose: What Every Parent Needs to Know to Help Their Adolescent with Aspergers, High Functioning Autism or Learning Difference Become an Independent Adult was released by Jessica Kingsley Publishers early in 2012.

5 Things Every Parent in the Autism Community Can Learn from Military Moms

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

Kristin and JJ

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!”

Kristina and her son

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.

  1. 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.  Another great site for military parents is Operation Autism run by the Organization for Autism Research.
  2. 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.”
  3. 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.
  4. Talk to Tricare When You Need Another Referral or Another Options. “You don’t have to settle for the first referral you’re handed .”
  5. 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.
  6. 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.”

You can reach out to Kristin and Kristina on MyAutismTeam.

- Interview Conducted by Eric Peacock, GM of MyAutismTeam. Follow on Twitter: @MyAutismTeam @ejpeacock

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