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Archive for the ‘Autism’ Category

How Do You Do It All?

The following is a personal story written by Alicia, an ambassador of MyAutismTeam, the social network for parents of children of all ages with autism.  Below she shares the story of how she and her family balance the challenges and triumphs of life.  If you are a parent of a child with ASD, go to MyAutismTeam and connect with other parents who ‘get it.’ Thousands of parents from all over the country are here to share not only their stories, but their daily lives: the good days, bad days and the accomplishments!

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Just recently I was asked by a new friend, “How do you do it?” I responded somewhat perplexed. “How do I do what?” She went on to alicia pictureelaborate, asking me how do I raise three young boys, with two on the spectrum, while living on a single income and living with the constant pain of multiple sclerosis? I honestly rarely stop to ponder my situation because honestly I see it as a way of life and not a situation. Soon after, another friend asked me this and then I began to notice the number of parents on MyAutismTeam that were asking similar questions.

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And then I was asked to do a blog post on the subject. So here it goes, keep in mind I am no writer, I write from the heart, sometimes what I have to say is quite blunt and sometimes it will make you cry but it is what I live every day.

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Parenthood

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We entered the role of parenthood on a cold December day. After 12 hours on Pitocin my oldest son (Big Fry) was taken by C-section due to distress. He passed all APGAR tests with flying colors. From birth he was a baby that had wisdom beyond his years and has always had adult-like mannerisms and humor. We contributed this to being the first born, first grandchild on both sides, the only baby among all our friends. He was constantly surrounded by adults therefore he acted like an adult. His only delay was speech which we just assumed was due to us using sign language. When he was just 18 months, we had our second son (Medium Fry) and Big Fry’s response to having a new brother was to potty train himself. Medium Fry was a different story, he was 2 ½ months early and whisked away at birth due to me crashing on the table. He refused all contact (except mine) from birth onward, he refused to breast feed, and he refused the bottle. He was born at 5lbs 2oz and left the hospital four days later at 4lbs 1oz.

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They refused to keep Medium Fry at the hospital because he did better with me. It was a long rocky road and finally at the age of four Medium Fry received the Autism diagnosis, which was something we had decided around the age of one, but couldn’t get any doctors on-board. This diagnosis didn’t stop us from having a third son (Small Fry) whom was born just one year after Medium Fry’s diagnosis. Small Fry was born with a major but non-life threatening heart problem and severe food allergies. Around that same time Big Fry began to struggle in school. We contributed it to having a new needy brother at home. Lo and behold that was the beginning of all the tell tale signs of Autism in my oldest son. So this is how it all started, but still how do you do it?

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Life Rules

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There are three rules to surviving life with children on the spectrum and little did I know that these three rules were handed to me at a baby shower for Medium Fry. I was given a simple blue blanket that had words stitched on three sides; the words were Live, Love, LAF (I will tell you the significance of the misspelling later), with the final side having my middle son’s date-of-birth (my shower was after his birth since he was so early.) These three words have stayed with us through our entire journey.

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Live In my lifetime I have died twice, neither time were there white lights guiding me on to another place. The first time was horrific, to this day I remember the pain and hate that I felt at that time. The hatred was so intense that I vowed to change my life. I recovered and started my journey in helping children on the spectrum. I was only 14 at the time. The second time was during my middle son’s birth, I remember nothing but my husband tells me that I only returned to him after the nurse declared, “It’s a boy but I must take him.” How can we not live each day as if it’s our last? I want my boys to live a full and normal life, so we live in the moment. We cry when times get tough and we laugh when times are good. We struggle together as one through everything. Some people say I need to let go and let my boys live their own lives but my response to that is I will never let go. I give them space when needed but I’m always there to catch them if they fall. There is a poem my mom would always read me when I was younger. The poem stated the only gift a mother (or father) can give their children is roots and wings. Wings to allow them to soar to their fullest potential and roots to guide them home when they fall.

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Love is unconditional, love is blind. Love your children no matter what they do. We have no way of knowing the pain they feel, how hard it is for them to do daily life skills. But with unconditional love they can make it through everything. When my oldest son was diagnosed, I cried. The doctor, who knew our family well, looked at me and asked, “Why are you crying? You didn’t cry for your middle child so why do you cry for you oldest?” I said, “This can’t be, I knew something was different with my youngest from birth but my oldest is so normal.”

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At that point in time I was given the best words of wisdom. The doctor looked at me and said, “Does this one word (Autism) change who your son is, does it change who he will be, and most of all does it change how much you love him?”

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Does it?

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Think, do you love your child any less now that you know why they struggle? If you are like me, it is just the opposite; you love them even more. Don’t get me wrong my boys are a challenge but to be honest I find my NT child way more of a challenge than my two on the spectrum. Times get hard but I love them through it. Pull everyone you can into your circle of love, it is contagious. If they see your pure admiration for your kids, they will also feel it. And honestly the more people you have in your circle the better it is.

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LAF We spell laugh this way because L.A.F. are my son’s initials. Little did we know how much he was going to make us laugh. When you laugh at the little hitches in your life you feel better. Stress goes away, solutions become evident. When times are tough, let your mind wander to a time when your child has made you laugh. If your life is anything like ours, your mind won’t have to wander far. On any given day, I can count the melt downs on one hand. But most days the number of times my boys make me laugh are far more than the number of fingers on my hand. The good does outweigh the bad and we often just need to sit back and remember.

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So Live, Love, and LAF. My boys were a gift from god and though his plan is sometimes unclear I know he only deals us what we can handle. Put your faith in yourself and know you can handle life on the spectrum.

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Our Story – My Tristan

The following is a personal story written by Juliet, an ambassador of MyAutismTeam, the social network for parents of children of all ages with autism.  Below she shares the story of her family and her son Tristan.  If you are a parent of a child with ASD, go to MyAutismTeam and connect with other parents who ‘get it.’ Thousands of parents from all over the country are here to share not only their stories, but their daily lives: the good days, bad days and the triumphs!

He was extremely colicky as an infant. Midnight car rides almost every night, he slept no longer than a couple hours, at most,Tristan during the day, and began digestive issues as young as two months old.  Literally, my husband and I were tired and grumpy all the time hoping this stage would someday be behind us.

Tristan, now 4 years old, hit all his major milestones up until two years old, but there had always been something a little peculiar about my little guy.  He spoke a few words here and there but nothing distinguishable to a non-parent. When Tristan was excited, he would jump up and down flapping his arms. And we just said to ourselves, “oh, how cute! He loves to watch football!”

At 3 years old, when most parents begin preschool preparation I was racking my brain telling myself, “I don’t think my little guy is ready. Actually, I know he is not ready.”  My biggest concern and the anxiety he demonstrated the most was being around others – children, adults, and even family. Socially, I knew he was behind – way behind.

Outside of routine trips to the store ,such as Costco, refusing to be separated by Mommy and the check-out counter, or regular phrases such as “I’m scared” when approached by anyone other than an immediate family member– it was the sum of these situations that my husband and I realized we had to make something happen on our own.

I immediately met with Tristan’s pediatrician, I should note that my concerns were not new to her either, but I pressed it further and she supported our request.  Our next visit was with a Pediatric Neurologist about an hour outside of town who instructed us to contact out local regional center.  After some research of my own, I also decided to contact our local school district to get him tested for academic purposes since he was of school age (being 3 years old).

The tests and evaluations were moving on the fast lane, it was continuous evaluations for 3-4 weeks.  Lucky me, and lucky for my son he loved puzzles and games.  So he was having one party after another for a month. Final assessments came in both from the regional center and the school district within days of each other and both were in agreement that my son had PDD-NOS, known as Pervasive Developmental Disorder – Not Otherwise Specified. It was extensive-wordy diagnosis with an awkward title but we now had an official diagnosis for my son.

In my son’s case, he exhibited most of the elements of being autistic but because of the mildness of his characteristics he did not have Autism, but better put he had Autism Spectrum Disorder.  We shared the diagnosis with the school district who then discussed possible therapies to help Tristan begin moving in the right direction.  They laid out two possible therapy sites both using applied behavioral analysis (known as ABA), and even set up visits for me to the two locations. After the visits, it was clear which would be the best fit for my son.

In order to move forward with the ABA at Applied Behavioral Consultants, ABC School, they had to conduct their own evaluation of Tristan to create a personalized program to fit his areas of needs. Over a period of a month, ABC School finally concluded their assessments and they began Tristan on a “slow start.”  A “slow start” just meant he would begin half day and gradually add on an hour or so until he was able to manage a 8am-3:30pm schedule at five days a week.

Let me tell you mom and dad – the first week was, of course, the biggest transition. Which meant every morning; I would hear my little guy declare, “no school Mommy, no school.”  And for many days, I would do my best to console and reassure him that everything would be ok.  Even though, I too had doubts. Not because I didn’t think we were making the right decision but more else that I too was scared as we were taking this journey together…blindly. As soon as I would drop him off at school, there was clinging to the legs, clothes, screaming, crying – some of that from Mommy too.  Yes, the first couple days I sobbed as I held my daughter’s hand walking to the car hearing my son screaming from inside the building.

Tristan artworkBut all that eventually ended and now almost five months into his ABA therapy – my Tristan is doing amazing.  He was evaluated for occupational therapy (it was recommended at the beginning of the school district evaluations but has improved drastically since then and so was deemed not needing occupational therapy at this time) and she had relayed that he was “the most developed child she had seen in the last ten years.”

Just over this last year, I have come to realize more clearly how blessed and gifted that my son is.  Because of his love to learn, he has exponentially grown in his academics even at four years of age.  And now loves school! In the fall, we enrolled him in a mainstream pre-kindergarten, so with the balance of both ABA therapy and pre-k he is doing wonderfully!

We are so grateful for the amazing specialists, teachers, doctors, and individuals who have had an impact, both big and small, in our lives to create this journey that we’ve been on with our son. Autism Spectrum Disorder has become a blessing in disguise and is a part of who my son is.  And we wouldn’t have it any other way.

If you are the parent of an individual with autism you can join MyAutismTeam for free at http://www.MyAutismTeam.com.

 

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Lessons on Navigating the Holidays and Family

The following is a personal story written by Kristin, an ambassador of MyAutismTeam, the social network for parents of children of all ages with autism. Below she shares the lessons that she has learned incorporating her extended family into her son’s life.  If you are a parent of child with ASD, go to MyAutismTeam and connect with other parents who ‘get it.’ Thousands of parents from all over the country are here to share not only their stories, but their daily lives: the good days and bad days and the triumphs!

KristinThis time of year my favorite for one main reason—the food! Seeing extended family and getting time off from school or work is also a bonus. Sometimes spending time with your extended family can be a hassle, especially if you have different circumstances than the rest of your family.

My son happens to be the only child with any sort of special needs (ASD) on either side of the family, which can make the holidays stressful. Yes, getting my son to do something other than climb the stairs over and over again is frustrating, but that’s not the main stressor, the extended family is. We all love our families (hopefully!), but sometimes things aren’t all pleasant.

I remember how interactions with my son went at the first family gathering following his diagnosis. It was nearly nonexistent. We have two doctors in the family, so they interacted with my son, but others didn’t. Over time I began to notice a trend in who would make an effort to talk to and play with my son, but also that did not. I even conducted an informal experiment to see how often my extended family interacted with my son last Thanksgiving. You know what I found? The family members who barely engaged my son had little to no knowledge about autism.

It can be so easy to just get angry, assume they don’t want to be a part of your child’s life, or even dislike your child. Try not to jump to conclusions and think about why certain family members avoid your child. There could be a whole host of completely rational reasons why they avoid your child.

Here are some reasons that I have found to be true:

  • They don’t know how to interact with your child. This is the most common reason that I encounter. Not everyone is as versed on the ins and outs of autism as us ASD parents. Telling your family that your child has autism may not be enough to prompt investigation on their part. Try bringing your child up in casual conversation and state how they should interact with your child. For example, you could say “Talking to him like we would other children is most beneficial for him,” or “we typically talk to him with short, specific sentences,” to emphasize how to communicate with your child. I did this exact thing with my siblings-in-law to let them know that we talk to our son just like we would any other kid. Modeling it also helps. I noticed that a few of them began to make consistent efforts to interact with my son after that.
  • They want to help, but don’t know how. I specifically noticed this with my mother-in-law. She wants to help, but doesn’t really know what to do. She used to repeat herself over and over again to my son, trying to help, but it just made us angry. We felt like she assumed our son was unintelligent. Turns out, she was told that repetition helps with learning. She took that too literally, hence the repetitious nature of her conversations with my son. When she last visited, we actually told her about things he was working on at school and asked that she practice those things, too. One thing in specific was hugging. My son is very affectionate, but in unique ways. He has been learning to hug at school, so we told her about it and asked her to do it. When he did hug her, she was so proud! She even instructed my father-in-law to start doing it, too!
  • Awareness is crucial.  The simple act of knowing has major influential effects on how people behave. I can attest to this myself. Even as a parent to a child with autism, I still find that initially I feel a little bit of anxiety when initially meeting a new child with ASD. The more exposure I have, the more comfortable I feel. I am an undergraduate research assistant in an Applied Behavior Science program, so I interact with children with ASD all the time. The more time I spend with these kids, the more comfortable I get with new children and new issues. Just try to inform your extended family about your child’s situation. This can be formal and informal. Chances are your family may have some idea that autism is something that it really isn’t. Express the great things your child does as well as struggles (chance to ask for help!).

I have noticed that the more information I provide to my family, the more they want to interact with my son and ask about his progress. It is so important to not jump to conclusions and get angry. Let’s be honest, raising a child with ASD is hard work. Why add more work and stress to your load? Try to enjoy the holidays, eat lots of yummy food, and teach your child some new social skills. And if some family member refuses to be social with your child, then don’t sweat it. Your child needs to be surrounded by supportive and loving people anyways.

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MyAutismTeam Reaches Major Milestone: 50,000 Parents Nationwide!

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MyAutismTeam, the social network for parents of children of all ages with autism, today announced a new milestone of 50,000 registered parents.

 

MyAutismTeam attributes the rapid growth of the social network to pent up demand and word-of-mouth amongst parents of individuals with autism, unique product features based on parent feedback, and partnerships with leading autism organizations.

 

For parents of children (from infants to adults) with autism, MyAutismTeam is the social network for parents to meet other parents who understand the daily ups and downs that come with parenting an individual with autism. Through shared tips, ideas, referrals, and general support, the parents of MyAutismTeam make real and lasting connections with other parents.

 

Since MyAutismTeam launched in 2011, parents have made more than 500,000 connections on the site. From discussions on effective therapies and finding the dentist or barber who “get it,” to tips on everything from insurance coverage to implementing a successful bedtime routine, the parents of MyAutismTeam share openly and honestly about their daily issues, concerns and triumphs.

 

“It’s been amazing to see MyAutismTeam grow from 35 parents two years ago, to 50,000 parents today because it means that more and more parents are finding the support they need,” says Eric Peacock, co-founder and CEO of MyAutismTeam. “However, with estimates that 1 in 50 children will be diagnosed with autism in the United States, we know that are many more parents out there that need to connect with parents on MyAutismTeam. Our goal is to continue getting the word out to all parents who have children on the spectrum, and our partner organizations will play a critical role in that.”

 

Autism Speaks, the world’s leading autism and science advocacy organization, a partner of MyAutismTeam since the community launched, recognizes the value of the connections made by parents on MyAutismTeam.

 

“Parents of individuals with autism are amazing people helping their children live fulfilling and rewarding lives,” said Lisa Goring, vice president of Family Services at Autism Speaks. “MyAutismTeam provides an invaluable community in which parents can support and learn from each other. Our partnership with MyAutismTeam is just one of the many ways we continue to bring the best possible resources to families impacted by autism.”

Two Tips for Finding & Working With a Great Occupational Therapist for Autism

Most parents of kids with autism constantly ask themselves, “Am I doing enough to help my child?”  And yet, thousands agree on a specific type of therapy that they feel has helped their child most: occupational therapy.  We’ve asked over 40,000 parents of kids with autism on MyAutismTeam “What therapies, if any, work best for your child?”  Out of all responses, the number one answer was occupational therapy (OT).

When we explored this area more with our parents to find out why OT was so useful, and how to pick the right OT for your child, two tips surfaced:

Tip 1: Finding an OT Trained in Sensory Processing Disorder or Sensory Integration Can Make a Huge Difference for Your Child

Useful skills for sensory overload

“Five minutes with [our  OT trained in Sensory Integration] and we had a wealth of information on techniques for calming [when overstimulated], ideas for a sensory diet [that helps prevent sensory overload], and tools for managing crises.  [For each skill] our OT provided us with a hands-on demonstration for how to work with our child [so that we could do it ourselves].”

The “sensory diet” can be incorporated into the school setting

“Our OT not only explained the sensory issues our son had, but she [also] gave us strategies [and a written 'sensory diet'] so that he can be as independent as possible.  A lot of the activities in his sensory diet can be incorporated into his daily routines.  His school also has a copy, and his IEP states that he can be given sensory breaks when needed.”

Sensory issues impact all areas of day-to-day living

“Both outside and school occupational therapy have helped our now 14 year old son [with everything from] being able to be hugged, to touching food with his fingers, [avoiding] hand cramps from being so forceful when using a pencil,…wiping his mouth with a napkin, [and] putting his face under the shower water.”

Tip 2: Partner with Your OT and Reinforce the Goals at Home  

“Even the greatest OT needs help and support from the family.  Take what the OT teaches and then add skills done at home to reinforce the goal of your child living [independently] in society.”

“You know a great OT when they have a one-on-one with you and they take what you say into the therapy room.  They let you see what they are doing and they give you homework!  OT has to be done at home by you!  It doesn’t start and stop with the therapist.”

“Our OT never made our family feel like we were not doing things right, and she was super supportive in finding answers to the questions we had.  She really listened to what we thought his major challenges were and we worked together from there.”

Warm Reception from OT’s

Last week we shared these results with OT’s who specialize in autism at the American Occupational Therapy Association‘s Annual Conference in San Diego.   They were thrilled to see the response to OT by parents in the autism community and genuinely hungry to hear the parent perspectives and anecdotes about autism and OT.  We were swamped with questions following the talk and really moved by the passion of the OT community to make a difference in the lives of individuals with autism.

If you already have an OT that you and your child love, please be sure to add them to your team on MyAutismTeam.com, today.  If you’re looking for an OT, follow the tips above and start your search by connecting with parents on MyAutismTeam near you to see which OT’s they are using.

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More information on Occupational Therapy

Occupational therapists (OT’s) and Occupational Therapist Assistants (OTA’s) help individuals with autism gain independence and participate more fully in life by integrating cognitive, physical and motor skills.

These skills might include:

- Daily living skills (dressing, grooming, going to the bathroom)
- Fine motor skills (writing and cutting with scissors)
- Gross motor skills
- Playing, coping, sharing, self-regulation, and social skills

By definition, occupational therapy is tailored to the specific developmental needs of the child – and the will evolve as the the child turns into an adolescent and an adult.

Other good reads:

The Autism Speaks 100 Day Kit has a primer on OT and other therapies that is quite useful.

What to Ask of an Occupational Therapist” – from The Thinking Person’s Guide to Autism offers more information on sensory diets and everything else your OT can help you with.

MyAutismTeam Reaches 40,000 Parents

MyAutismTeam Reaches 40,000 Parents

Free Social Network for Parents of Children with Autism Provides Much Needed Support and Information Sharing

SAN FRANCISCO – April 2, 2013 – MyHealthTeams today announced that more than 40,000 parents have registered for MyAutismTeam, the social network for parents of children with autism.  The free social network, which launched with just 30 parents in June 2011, has experienced rapid word-of-mouth growth as parents of children with autism look to connect with other parents for ideas, tips and support.

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Recent research from the Centers for Disease Control revealed that Autism now impacts as many as 1 in 50 children in the United States. Where do parents turn for support and answers to the many questions they have ranging from insurance issues and bullying to therapies and how to handle behavioral challenges?

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“If your child is diagnosed with autism, it should be easy to find the best people around to help you,” explains Eric Peacock, co-founder of MyAutismTeam. “Parents on MyAutismTeam connect with other parents who have been in their shoes, learn from them and get support, so that they don’t have to reinvent the wheel.  It’s an amazingly caring and constructive community.”

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Often, parents of children with autism find themselves feeling alone, confused and overwhelmed. MyAutismTeam offers several key features to address this:

  • Find People: Parents can search for other parents by city, age and gender of child, and sub-diagnosis on the autism spectrum to help deepen connections with those who have shared experiences
  • Activity Page: The core of the site where parents share updates, photos, ideas and  daily ups and downs with each other – support is provided for the tough moments and successes are cheered
  • Provider Directory: This searchable database provides parents with a database of more than 35,000 Autism-friendly resources; submitted by parents
  • The Team:  Parents share the team of providers who help them ranging from doctors and specialists to everyday services like a hairdresser/barber, babysitter, friendly restaurants, music teachers, etc. Parents also add other MyAutismTeam parents who they find supportive to their team.
  • Q&A:  With a 97% response rate, this database of more than 2,000 questions grows daily, parents can search or ask a new question on any topic for which they are seeking guidance.

“You have no idea how alone I felt before MyAutismTeam,” Christine Pasour, a parent in Dallas, NC. “I wish I had it years ago. Just knowing there is someone else out there going through the same experiences is huge.”

To start your team today, visit: MyAutismTeam.com

 

About MyAutismTeam

MyAutismTeam is a social network for parents in North America who have a child or on the Autism spectrum.   MyAutismTeam, makes it easy for parents of children of autism to find and connect with each other, share tips and support, ask and answer questions, and even find first-hand referrals of great providers and specialists.  MyAutismTeam, the official social network and family resources guide for Autism Speaks, was founded in June 2011 as the first health social network created by MyHealthTeams.

About MyHealthTeams

MyHealthTeams believes that if you are diagnosed with a chronic health condition, it should be easy to find the best people around to help you. It builds deeply engaging social networks for people facing chronic health conditions in the US. In addition to MyHealthTeams’ flagship site, MyAutismTeam, the company launched MyBCTeam in September 2012 to support women diagnosed with breast cancer. It is currently introducing MyMSTeam, a social network for individuals diagnosed with multiple sclerosis. To learn more visit them online at MyHealthTeams.com.

Media contact:

Rachel Alltmont
Alltmont Strategies
(703) 863-3296
Rachel.alltmont@gmail.com

Autism Parents Share: 8 Tips For Keeping It Romantic In A Marriage

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Having a child with autism can be tough on a marriage. Besides the emotional and financial strains that come from providing for a child with autism, there’s a huge time commitment involved with therapies and medical appointments. All that responsibility and pressure can make it difficult to have time or energy left for romance. So what are moms and dads to do? We asked parents on MyAutismTeam how they “keep the romance alive” in their marriages. These are their tips, most of which apply to any busy parent!

1. Plan date nights.

Take the time to line up a sitter or respite care at the beginning of each month to make sure you get out. No planning ahead usually means no date! As one mother on MyAutsimTeam shared, “My husband makes it a point for us to have date night at least two times per month. Sometimes we only go out for pie and coffee.  It’s not much, but it makes me feel like a million bucks.”

If you’re having trouble lining up a sitter, several parents on MyAutismTeam have had success using sites like SitterCity.com to find sitters who are familiar with autism.  With 1 in 54 boys being diagnosed with autism in the U.S., it’s no surprise that there are a lot of sitters experienced in caring for people with the condition.

2. Try the weekday lunch date.

If getting a sitter is difficult or too expensive, try meeting up for lunch while your child is at school—or have a late breakfast date before heading into work. As New Mexico mom Sharon Esch explains, “My husband and I have a weekly lunch date while my son is at school.  It’s great because we don’t need to get a sitter, we have time to talk to each other about adult things, and we are not falling asleep!”

3. Set a dedicated bedtime for your child.

This is the secret weapon that far too little parents use: Create a fixed bedtime for your child that leaves an hour or two in the evening for you to spend with your spouse.  “Our son has a designated bedtime at which he goes to sleep every single night. Non-negotiable,” says Debbie Caruso of Massachusetts. “We have a night-time routine that starts around 7:30 with bath, books, a favorite calming video and sleep time. ” Word to at-home moms: rest up! Says Caruso, “I nap while my son naps, so I can still have energy left when my hubby comes home.

4. Flirt! (Remember that?) 

Re-introduce flirting with your spouse, recommends Terri Eagen-Torkko from Michigan.  ”Write love letters while you’re in the waiting room during therapies.  Send flirty text messages.  Every day, tell [your spouse] that you love them and why.”  To take advantage of those times for intimacy, she continues, “teach the kids that a closed door means knocking AND hearing an answer before entering!”

5. Have moratoriums on autism talk.

Parenting a child with autism can be all-consuming; it can easily take up every minute of daily conversation with your spouse if you let it. Kansas father Martin Cunningham says it’s critical to occasionally set autism aside so you can have time to “remember the reason you married your spouse in the first place.” He recommends that couples take a few hours every week for “conversations with each other, and with friends, that have nothing to do with autism.” Adds Chris Tryon, a father of two in New York, “Keep up with your friends! You need to keep sight of who you are apart from your child.“

6. Create structure for your child on weekends.

Shifting from the structured school day and therapy schedule to an unstructured weekend can result in exhausting parenting work that leads to no relaxing time with your spouse. Many parents schedule activities such as taekwondo, gymnastics, or swim lessons to start the weekend off with structure–and hopefully gives them some time for each other later in the day.  In her blog post How this autism mom stays married, noted autism writer and MyAutismTeam mom Laura Shumaker shares that her husband got up every Saturday morning, made pancakes with her boys, and then watched Disney movies with them.  He did it to let her to catch up on sleep, but regular weekly traditions like that can create its own predictable structure for a child on the spectrum.

7. Give your spouse time to him or herself.

Sometimes the best thing you can do for your romance is to ensure each spouse gets time to him or herself.  A 2009 study showed that Autism Moms have the same levels of chronic stress as combat soldiers. Whoever the primary caregiver is in the household, make sure that person gets some time to recharge! Laura Shumaker shares that she and her husband cover for each other on parenting duties each week.  “My husband has played tennis every weekend [possible] for the past 28 years, and I get out to exercise, shop, see friends, or have one on one time with my other boys.”

8. Remember, you’re in this together.

“One sure way to destroy romance in a marriage is to extend the fighting we must constantly do (on behalf of our children) to the spouse”, says Martin Cunningham, a father and husband in Kansas. “It’s too easy to view our spouse’s perspective as adversarial when it does not match our own.  It takes a special intent and energy to remember that they want to help and, more often than not, a tremendous effort to maintain open communication about those differences.”

Laura Shumaker suggests couples taking extra pains to keep things civil.   “When I’m stuck at home all day and am STIR CRAZY, I resist the urge to say “Your turn!’ and race out the door the second my husband gets home.”  She explains that they hug and kiss, and have a moment to acknowledge each other before she says, “I’m going nuts.  I think I’ll go to the bookstore for a little bit. Is that OK?”

To connect directly with the parents mentioned in this article (and thousands more) and share your own romance tips, visit MyAutismTeam.

 This post originally appeared on Parents.com.

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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5 Practical Tips for Parents of Kids with Autism This Holiday Season

Autism Holidays

While the holiday season can be exciting because it lets us break routine, thousands of parents on MyAutismTeam.com have told us that it’s the breaking of routine that can create unexpected behavior in their kids with autism. Here are 5 tips from thousands of parents on MyAutismTeam.com to navigate the holidays:

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1) Practice – do a practice run of holidays events like gift exchanges with others, or meeting Santa at the mall, or even eating at the special occasion dining table. By getting their children familiar with typical holiday festivities, parents on myautismteam.com told us, the anxiety in their kids goes down.

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2) Keep it small – If you can, avoid large or loud groups. Some kids with autism get easily overwhelmed in large groups and loud noises, even if only music. Parents say it’s a good idea, to permit your child some downtime away from the hustle and bustle, so they can feel a moment of calm.

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3) Comfortable surroundings – gradually decorate your home and have them help. Some children with autism experience sensory overload from decorations, like flashy lights and music. Homes with non-flashy decor can feel more comfortable.

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4) Keep it simple – avoid over-scheduling. Parents suggest time-boxing certain events, and managing your child’s expectations of how long it may be that we’re visiting Aunt Katy’s or Granny’s.

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5) Finally, create a food plan – if visiting others for dinner pack snacks and meals that are familiar to your child, and communicate with your hosts that’ll you be doing that so that everyone is on the same page.

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These are just a few tips. Kids with autism are so different, and have different needs. Parents interested in learning more should ask other parents in their shoes on MyAutismTeam.com.

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