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Posts Tagged ‘tips’

Teaching Safety in Conjunction with Re-Launch of the Autism Safety Project

December 13, 2011 5 comments

Safety is a critical part of all of our lives, whether we are at home or out in the community, alone or with loved ones. Being aware of our surroundings and taking precautions to stay safe is even more important for individuals with autism and their families. The Autism Safety Project is designed to provide families affected by autism with tips, information, expert advice and resources so that everyone in our community can stay out of harm’s way.

Since we have launched the updated Autism Safety Project this week we wanted to know your best tips and ideas about teaching safety to your family and friends.

What About the Siblings? – 6 Tips from Siblings of People with Autism

November 7, 2011 15 comments

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.”
Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.

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

September 21, 2011 16 comments

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.

  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.
  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. “

  1. 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.  @MyAutismTeam  @ejpeacock

How to Prepare for a Hurricane When You Have a Child With Autism

September 2, 2010 7 comments

My house after Hurricane Gustav

This post is written by Shelley Hendrix, Autism Speaks’ Director of State Advocacy Relations. She currently resides in Baton Rouge, La. with her two children, Liam and Mairin. Liam was diagnosed with autism age the age of two in 1998. She began advocating on behalf of her son and other children with autism almost from day one.

This week marks the fifth anniversary of Hurricane Katrina, the nation’s largest natural disaster to date. Our own family was severely affected by the storm. Katrina ripped off portions of our roof and the siding from our house but the most destructive part came a few days after the storm when crews were clearing sewer lines pumping gallons of raw sewage into our home. We were without indoor plumbing for close to four months.

I was completely unprepared for Katrina and did not respect it for the storm that it was. As a result, we were looking for food supplies and water from neighbors because we were so sick of drinking diet strawberry-flavored soda water which was all they had left at the store when I got there. People don’t realize that when a storm like this hits that it can take days to start to get shipments of food and water back into an area. Baton Rouge is located approximately 60 miles northwest of New Orleans. I never imagined that a storm of that size could create such a disaster with us living that far inland.

Three years later our home suffered extensive damage with Hurricane Gustav. A neighbor’s tree landed on the back of our home and this time we had to move out for nearly seven months while it was repaired.

With Hurricane Earl bearing down on the eastern seaboard in a couple of days, we wanted to take the time to remind families how important it is to evacuate. The damage from Hurricane Gustav taught me that. While we weren’t at as much risk for wind or flooding damage from that storm, I never would have expected a tree located nearly 80 feet from my home to cause that much of a disaster in our lives. If we had been home we could have been killed easily. I was so grateful that we were not and will never ride out one of these mega-storms again.

Evacuating with a child with special needs, riding out the storm or surviving the weeks of no electricity that follow are stressful and difficult. Our children depend on routine and there is nothing that obliterates a routine like a hurricane. Weeks without electricity make cooking and daily life very difficult.

You have to plan ahead.

Some lessons we learned following these recent storms that we would like to pass on to our East Coast buddies from the Gulf South include:

1)      Be prepared! Stock up on food supplies and water.  Make sure you have enough to go for at least a week to 10 days.  One gallon of water per person.

2)      Fill up your bathtubs so that you are able to flush your toilets.

3)      Make sure you have your important documents – including birth certificates, insurance documents and IEPs in a safe and handy place. If you evacuate, bring this with you in the event that you have to relocate temporarily after the storm passes.

4)      Fill your car with gas and save a couple of gallons at your home if possible.

5)      During the days leading up to the storm withdraw as much cash from your bank’s ATM as possible each day so that you will have cash on hand.  We forget sometimes the luxuries that electricity bring like the use of credit cards, which are rendered useless in a post-storm, cash-based economy.

6)      Stock up on charcoal so that you can cook on the grill.

7)      If you evacuate, put all of the things in your refrigerator in a garbage bag and put the bag back in the fridge.  If you aren’t able to return for a week, you will thank us that all you have to do is hold your nose and grab one bag out of the fridge/freezer.

8)      If you evacuate to a shelter, consider going to a shelter at a church or school where your family might be able to have a quieter, more private Sunday School/classroom. Sitting in a large gymnasium with lots of people can be extremely stressful for our children.

9)      Be sure to pack enough medication for two weeks and be sure you have prescription numbers for refills if needed.

10)   Make sure to have first aid supplies on hand and readily available – including mosquito repellant (because they are awful after the storm hits) and sunscreen.

11)   Don’t get all caught up in the hype. Don’t get overly dramatic.  Parents that are stressed out invariably stress out their kids.  The more calm you can be, the better your children will be able to handle this disruption in their lives.

12)   Stock up on batteries and flashlights. Candles can be used if your kids will stay out of them. Mine never did so we use flashlights only.

13)   Do not go outside to go look around. It is everyone’s first thought to go outside after a storm to survey damage but don’t bring the kids outside until you know it is safe. Downed power lines can be everywhere for days and it is difficult to determine which ones are live.

14)   Be careful about snakes and insects – especially bees, wasps and fire ants because their homes have been disrupted too and they are likely looking for new ones … and stressed out and angry too!

15)   Pull out that battery operated radio from the 1980s that you have stored in your garage to stay informed of the storm’s progress.

You can find an excellent evacuation checklist here.

We encourage all families to evacuate and stay safe during this hurricane season!

Ten Tips for Vacationing with Your Child – Part 3

July 30, 2010 2 comments

This guest post is by Elaine Hall, author of the memoir NOW I SEE THE MOON: A Mother, a Son, a Miracle and founder of The Miracle Project, a theatre and film arts program for children with special needs. She is also the mother of a fifteen-year-old son with autism. Discuss the book on Facebook and follow Elaine on Twitter @CoachE.

This is the final post in a three-post series about vacationing with your child who has autism; read the first post here and the second one here.

Tip # 7 Staycations: Same place, different experiences. Customize!

When I was a child we went on a family vacation every year, usually to the beach. One year, our finances were particularly low and we couldn’t get away – so my dad made a fun time of “Vacation at home!” My dad and mom set it up so that each child and parent got “their day,” and the other family members went along.  My dad’s choice was fishing at a nearby lake, my mom, “vegging” out at a local pool, my brother chose an amusement park, my sister a movie, and I chose going to an art museum. This special week stands out in my memory as one of the best vacations in my life.

Let your child be part of this planning process. Use a dry erase pad and write down possible ideas. Let your child circle or point to where they would like to go. For kids who are nonverbal – there is a new app for the iPad called Proloquo 2Go, which “provides a full-featured communication solution for people who have difficulty speaking.” Find what communication system(s) work best for your child so that your child with ASD can have a voice in choosing where they wish to go. Let each child feel special. If possible, you can bring along a teen volunteer to help out. For moms – maybe your special day can be going ALONE to a spa day, while the rest of the crew has a picnic. Refuel. It matters.

AMC theaters now offer Sensory Friendly films where our kids can walk up and down aisles, make noise, and just be themselves.

Tip #8 Get a special pass when you go to an amusement park (or other busy venues like concerts, plays, etc.).

Some children with ASD love amusement parks; some find them too stimulating or overwhelming. Again, preparation is the key to success. Before taking Neal to Disneyland, we showed him photos, went online and let him do a virtual tour. Once we arrived there, we had a pretty good idea of what he wanted to do. Remember too that your child’s interests may seem odd but they are his or her interests. (Neal could go on Space Mountain 10 times!)

Most of the major amusement parks have a special disability pass where your child and family members do not have to stand in long lines. Don’t be proud!  Get this pass! In fact, Neal is one of the most popular kids on our block, when it comes to going to Magic Mountain, his now favorite amusement park, since everyone in his party doesn’t have to stand in line!

Tip # 9 Enjoy the great outdoors.

Neal loves to be outside. I have seen him the happiest when he can be out all day long. Go camping, to the beach, hiking, have picnics, do things where your child can feel boundless with few opportunities to have to say “No,” or manage inappropriate behaviors. Today there are many outdoor programs that families with special needs can enjoy:

Leaps and Boundz
FACT Family
Surfers Healing
Autism on the Seas (look for the new Miracle Project on the Seas, next summer!)
Camp Surf in San Diego
Extreme Sports Camp

Tip #10 Be Here Now (wherever “Here” is that day)!

Give yourself the present of being Present. Enjoy this precious moment. I once attended a family surf camp where the dad had spent hours preparing his son for surfing: practicing standing on a surfboard, paddling in a pool, etc. However, once at the beach, his son was so excited about being in the ocean, that he just wanted to play and dance in the waves, he didn’t want or need to surf as planned. The dad moped on the beach, feeling this situation as one more failure. I suggested that he stop for a second and look at his child who was in complete joy. The father soon realized that it was his own need for his son to complete the task at hand, rather than enjoying the moments with his son.  He realized as we all do from time to time, that the gift of the present is sharing time, experiences, and engagement with each member of our family … in their own special way, and in their own special time.

As I look back, even that first seemingly “failed” beach trip where my mom and Neal spent time on the patio together, was actually a beautiful bonding time between grandchild and grandmother.

Enjoy the moments. Yesterday is gone, tomorrow is a mystery. Today is a gift that is why it is called the Present.

Vacation is in part, a state of mind.

Enjoy your summer. And please let me know how your vacation goes!!!


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Ten Tips for Vacationing with Your Child – Part 2

July 28, 2010 6 comments

This guest post is by Elaine Hall, author of the memoir NOW I SEE THE MOON: A Mother, a Son, a Miracle and founder of The Miracle Project, a theatre and film arts program for children with special needs. She is also the mother of a fifteen-year-old son with autism. Discuss the book on Facebook and follow Elaine on Twitter @CoachE.

This is the second post in a three-post series about vacationing with your child who has autism; read the first post here.

Tip # 4 Expect the Unexpected. Go with the Flow (as if we had a choice!)

As well-prepared as Neal was for his flight, once he got to the airport, he was so excited he couldn’t contain himself. At the airport, as we waited to board, Neal stared at the huge planes out the windows. He had great anticipation. I turned my head for a moment. I then heard the sound of an alarm. Neal had raced to the exit door and tried to open it so that he could go outside and be with the airplanes. He panics. People glared at him. Security raced over. “It’s okay sweetheart,” I told Neal, trying to comfort him.  To the security guard and the concerned onlookers, what could I say? “He has autism! He just likes airplanes!”

I remember early on in our diagnosis becoming outraged at others for making what I thought were “stupid comments” about my child and his behavior. Too, I resented their judgment of how I handled unexpected situations based on Neal’s reactions to circumstances. Now I understand that such reactions come from ignorance (just plain lack of knowledge).  I now try to use every occasion as an opportunity to educate and sensitize others to the special needs of my very special child and others like him.

TACA (Talk About Curing Autism Now) has cards that you can present to strangers to help them understand autism.

Tip #5 Call the airline (cruise line or hotel) in advance and let them know you are traveling with a child who has special needs.

Our choice to go with the flow continued throughout the flight. Once we boarded the plane, Neal remembered all that we had practiced (backpack under his chair, seatbelt snapped closed, and ears covered at take-off). Success! Until beverage service does its thing in the aisle, blocking the path to the bathroom in coach (where we are seated) and Neal indicates that he needs to go NOW. This we hadn’t practiced.

At my husband’s suggestion, Neal and I make our way forward to the first class restroom where the flight attendant recites the usual “first class passengers only” spiel. As I try to explain the situation of my son’s special needs, a man from first class, clearly able to overhear our conversation, heads into the bathroom, pushing ahead of Neal. “He’s going to have to wait like everyone else,” she prattles on. As I start arguing with her,  Neal sees an opening. He darts towards the bathroom door. And yet another man jumps in front of the door with the cocky condescension of a first-class citizen. Neal tantrums. “Return to your seats,” demands the flight attendant. Neal grabs her eyeglasses off her face. She panics and calls for security. All this happens within twenty seconds. I’m losing it. My husband steps in. He calms me and quiets Neal enough to get him to wait behind the cart as it passes each seat. He then takes Neal to the bathroom. I return to my seat, fuming. If that stupid flight attendant hadn’t been so stuck on her rules, if that guy in first class hadn’t been so arrogant, none of this would have happened. How can people be so cruel?

Now I know to phone the airline in advance and tell them about my child’s special needs and apprise the flight attendants, that if something unusual presents, they need not be afraid. My child has the best intentions and he has autism. Things happen. I believe that people really do want to help families like ours if we tell them how by sensitizing them to our circumstance.

Airlines are becoming more accommodating. When I do the work beforehand, they offer comforts including letting us board early, being kind, patient, and attentive to Neal. I have found that, generally, fear of the unknown creates discomfort and anxiety which manifests in judgment or unkindness. The more we proudly travel with our children or go to movies, malls, or neighbors’ homes, the more they too will come to learn compassion, understanding, and non-judgment, just as we have.

Tip # 6 When traveling long distances prepare activities to keep your child engaged.

For older children, this might include computer games, DVDs, magazines, etc. When Neal was younger, I wrapped up little “gifts” in aluminum foil and let him unwrap them periodically on the trip. I remember going to a party supply store and buying bags of favors, little match box cars, airplanes, bubbles on a string, animated characters, plastic pretend food, etc. Unwrapping each package took up to three minutes.  He would then take another three minutes to play with the toy car, spin the wheels, flicker it in front of his eyes, and then line the cars on the tray before he would get bored again. I also wrapped his favorite foods in little packages, a couple crackers here, a piece of string cheese there, three apple slices. Once we we’re in the air, he was intrigued and distracted by his little presents. Once in a while he ran up and down the aisle. I just ran with him. Life happens!

Check back later this week for the rest of Elaine’s tips and subscribe to the Autism Speaks Blog to make sure you don’t miss out!

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Ten Tips for Vacationing with Your Child – Part 1

July 26, 2010 15 comments

This guest post is by Elaine Hall, author of the memoir NOW I SEE THE MOON: A Mother, a Son, a Miracle and founder of The Miracle Project, a theatre and film arts program for children with special needs. She is also the mother of a fifteen-year-old son with autism. Discuss the book on Facebook and follow Elaine on Twitter @CoachE.

Ahhhh, summer vacation. It’s finally here!

For many of us who have children on the autistic spectrum, long gone are the expectations of spending glorious temperate days lounging under a coconut palm in a tropical paradise while watching the kids effortlessly scoop sea-critters into a bucket of brine. Understandably, some of us may decide to forego summer fun-in-the-sun getaways.  Our experience has been that taking a family vacation is “just too difficult!” and these days, also too expensive. But with a little planning, family vacations need not be so stressful, and may even be joyful!

So what can we do to enjoy time together while on holiday?

First, it is important to consider where our children are in their ability to process and hold information, to evaluate their sensory needs, and to contemplate how well they are able to respond to stress (seemingly fun-filled environments can be completely overwhelming for our kids). Extensive preparation is key for all of these.

Tip #1 – Focus on doing something that you know your child enjoys.

Soon after I adopted my son, Neal, from an orphanage in Russia, we joined my family reunion at a beach house in Delaware. When we get to the beach, it is clear that Neal is petrified of sand, of water, of anything to do with the beach.  I make excuses to my family, “He doesn’t know the ocean. He comes from the Ural mountains in Siberia, for goodness’ sake.” Even as I defend him, I’m disappointed. I love the ocean, and I yearn to share the joy of the boundless sea with my son. Instead, we surrender, and end up spending our time on the patio of the beach house where there’s a wading pool. We’re joined by my mother, who was also raised in the mountains – the Shenandoah Mountains in Virginia, and she doesn’t like getting sandy.

Know what truly interests your child and plan your trip where you know he/she can be successful. Also, it is important to note that our children’s ability to regulate their own emotional states is largely affected by our own. So if we are anxious, disappointed, frustrated, or angry, guess who’s going to feel even more so?

Tip #2 – Prepare your child’s sensory system. Anticipate, it makes Sense!

If you decide to go somewhere you’ve never been with your child, or try new activities together, make the effort to really prepare (weeks before you take your trip, if possible). After the “failed” beach experience, one of my son’s therapists, Shelley Cox, and I take Neal close to the ocean. Shelley takes a bucket of sand and actually brings the ocean to Neal. Slowly and compassionately we allow Neal to get acclimated. First Shelley puts sand on his feet, rubbing it gently on his skin. I then realize that the hot, scratchy sand must have been irritating to his sensitive tactile system, reflecting why he avoided walking on the sand, preferring to be carried to his beach blanket. I am even clearer that Neal’s fierce preferences are not random. I better understand his world and anticipate his needs.

Each day Neal walks a few steps closer to the beach. Shelley continues to bring the various elements of our impending vacations experience to him. He smells the water Shelley brings to him; she pours it over his legs, getting a sense of his comfort zone. This goes on for seven days, until, finally, Neal walks on the sand to the ocean with confidence. For the rest of the summer, Neal is able to walk to the ocean with me. He wants to. Today, Neal loves the surf and can’t wait to jump in the waves!

Tip # 3 Rehearsals for life: Practice, Practice, Practice!

Before we fly on an airplane with Neal, we role-play everything you can imagine – packing bags, waiting in lines, taking off his shoes and going through security lines, placing luggage under the seat, wearing a seat belt, and sitting patiently. We use visuals – we watch DVDs of airplanes, go online for pictures, we pretend play with toy airplanes, look through airplane magazines. We practice placing our hands over our ears during take-off/landing and we actually visit the airport.

If he is going to meet new people, we show him pictures and tell a story about them, letting him “meet” them first in the comfort of our home. If we are visiting family members whom he hasn’t seen for a while, we show him photos of passed experiences and current photos so he can see what they look like now.

We use social stories to help make sense of new experiences. This provides Neal with a sense of control, and diminishes his anxiety.

This is the first post in a three-post series about vacationing with your child who has autism. Check back later this week for more tips and subscribe to the Autism Speaks Blog to make sure you don’t miss out!

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In Their Own Words – In the Workplace: Expect Ruffled Feathers

June 8, 2010 3 comments

We thought our dreams had come true when our 22-year old son with autism landed a job as a custodian at an Army base just outside of Washington, D.C . Full health benefits, paid vacation, and a starchy new uniform – yahoo! With his intense focus on repetitive tasks and military trivia, he had the makings for a model worker, but our euphoria didn’t last long. After a rocky start, six weeks into it a Human Resources rep called me into her office to say my son was becoming increasingly unreachable, “a pain the neck” for his supervisors to deal with. As a square peg in the round hole of a straitlaced military base, with little or no interest in office politics, he was making for an inscrutable co-worker. What to do?

Here’s the surprise: instead of tossing my kid out, they invited me in to a well-attended managers’ meeting to talk about how to manage autism in the workplace – a first for this forward-thinking service provider company. Topic A: As an employer of people with physical and intellectual disabilities, how likely were they to see an increase of  clients with autism in the coming years?

With more than 730,000 cases of children currently diagnosed with autism in the U.S., I assured them they could expect many more resumés like my son’s to be crossing their desks, and soon. Then someone suggested that perhaps the more relevant question is – if an employee who has autism is missing the piece of the puzzle that engages in typical social discourse, how can a workplace manager bring this new staffer into the fold?

Here’s how I look at it:

1. Start by becoming a noticer. When you see any of these behaviors – the lack of eye contact, the missed social cues, the wrong body language, the impulsivity, the flat affect, or the nervous tic-ing – consider that instead of just being rude or behaving inappropriately, this person may be somewhere on the autism spectrum, and inherently challenged by social expectations.

2. Use concrete language, not abstract images. Don’t talk so much when giving out instructions. People on the autism spectrum are very often visual learners and tend to tune out complicated directions – they frequently learn by watching and doing a task – so don’t be a chatterbox. Because, trust me, at this point the window has closed and he is no longer listening to you. Instead, be blunt. Say the thing you need to say simply and clearly. Then ask him to look you in the eye, (very important), and have him repeat it back to you. If he still doesn’t get it, maybe send him a text message or create a check list to read and keep for reference. Then shadow him. Stand back, watch, and let him monitor his own progress. Repeat as needed.

3. Prepare to have your feathers ruffled and then learn how to shake it off. For example, you might notice my newly employed son steps through that door ahead of you and lets it slam in your face, but this is not intentional or mean-spirited. Instead, remind yourself that being inwardly focused is a big part of what autism is. Don’t take it personally, and learn to let it go. This sounds so much easier to do … time after time … than it actually is. On the other hand, gentle reinforcers of acceptable behavior are always a good idea. Little things, like “Could you get the door for me, David? Now hold it for me until I get all the way through. That’s it!”

4. Lighten up: everyone benefits from a good sense of humor. After wrapping up David’s first week of work, he came upon his supervisor in the parking lot and said, “I’m off the clock now so you can’t boss me around.” The supervisor was initially shocked at David’s impromptu comment, but fortunately, he had a sense of humor. This kind soul didn’t exactly understand it, but he got it, and defused the situation with a good-natured belly laugh.

5. Respect the Two-Foot Rule: Give him room to breathe. Providing two feet of personal space around someone with ASD may be paramount for his peace of mind. So don’t add stress to a situation by imposing your physical self into the conversation. Many people with autism are tactilely defensive with acutely heightened senses and miserably uncomfortable when stuck in small spaces or subjected to loud noises. A handshake is fine but you do not want to goose this young man, or poke, or hug him – I know my son would react to that like he’d been snake-bit. Instead, make a standard handshake part of your daily routine with this individual, so that he knows it’s coming and doesn’t perceive it as an assault. All these things would come out if he could tell his own story, but chances are your new employee is a consistent loner, so he probably never will.

6. Pass it on: make a conscious effort to raise awareness about ASD during staff meetings. As managers of these workers, you will face many of the same problems we families do. Like us, you will have a few triumphs and plenty more setbacks. Be aware that the enigmatic part of autism is also going to create frustration in your staff’s well-meaning efforts to get through to him. Make sure all supervisors of employees who have autism understand that the disability simply is what it is—and nothing more. And yes, there will be times when you find yourself thinking this guy is a jerk or a pain in the neck, but remember to take yourself out of the equation – because (and take it from a someone who really knows) it’s not about you. Then, pat yourself on the back because – as every parent of an autistic child knows – you’ve earned it.

This “In Their Own Words” essay is written by Glen Finland. Glen is the author of Next Stop, a memoir about raising her son, who has autism, to adulthood and learning to let go, forthcoming from Amy Einhorn Books/Putnam in early 2011. Read another blog post by her – In Their Own Words: What Happens When I Am No Longer Here?

Please visit our Advancing Futures for Adults with Autism initiative at www.afaa-us.org and “like us” on Facebook, where we regularly post articles and items of interest regarding adult issues and services.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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