Then I saw this post from Nichole on the Fun and Function FB page and decided it was time to put some ideas down. I am by no means an expert at this – I’m just a regular mom trying to find my way through this crazy and sometimes scary and almost always overwhelming world of autism. So, here goes:
1. Trust your gut. Nobody knows your child better than you. If something doesn’t feel right to you, it probably isn’t. I wish I had a dime for every time I got ‘the hand pat’ and the ‘head shake’ and was told I was overreacting. My son flapped his hands and walked around on his toes on more than one occasion in front of our pediatrician. Those are classic signs of autism (I didn’t know that then), but I was told that I was rushing to judgment and that I was just being one of ‘those’ moms. And here we are…I wish I had had the courage to stand up to those doctors back then. Now I know better.
2. Get a second opinion. Or a third and fourth, if necessary. It won’t hurt anyone’s feelings, trust me. If you don’t like the doctor (dentist, therapist, teacher) or you don’t feel like they are in tune with your kid, they’re probably not. If you start to doubt yourself, refer back to Tip #1. This might be a bit more work for you, but trust me; you’ll thank yourself in the end.
3. Stop and catch your breath. This is a marathon, not a sprint. In fact, it’s more like an Ironman than a marathon. Pace yourself because you have a lifetime of navigating and advocating to do. Pick your battles wisely and remember to conserve your energy.
4. Take some time for you and your spouse. Trust me on this one, it will consume you if you let it and your relationships can suffer. Almost 85% of parents with a child on the spectrum end up divorced. These statistics are no joke. Set aside time to talk to your spouse and then set aside time to just have fun with your spouse and NOT talk about autism. You’ll be glad for both of those later on.
5. Take a little time for yourself. You will need a break every now and then and this trip will be time consuming (refer back to Tip #3). Once in a while, take some time to yourself – get a pedicure, read a magazine or book (one not related to your child’s special needs), go out with a friend. Although you are a warrior, you still need to be a regular person from time to time.
6. Lean on your friends. This can be challenging sometimes. First, because it’s hard for us to ask for help. Second, because those who don’t have children on the spectrum may not quite understand. Their intentions are good, so you need to learn to navigate through that, too. You will also (purposely or inadvertently) develop a network of special needs parents that can help, too. Rely on all these people, because like it or not, you will need their help.
7. It gets better. It gets better because you get better at navigating this world. You will eventually get the hang of it and, although it will still be overwhelming at times, you’ll have done all the things in Tips 1-6, so you’ll have a little more of a steady hand.

Twitter: @walkwithwill

What types of exercise programs are appropriate for children with ASD?  The answer should really begin by focusing on the interests of the individual child.  What types of activities does the child enjoy?  For a child who love to run, perhaps engaging the child by running on a treadmill or around a school track may be the most appropriate physical activity, or perhaps, the child love the water and providing opportunities for aquatic exercise would be the most engaging.  There is no magic answer to what type of activity is the most appropriate for children with ASD.  The goal is simply to get the child moving.  Research studies have successfully investigated the use of running or jogging, swimming or water aerobics, stationary biking, weight lifting, treadmill walking, roller-skating, and walking in snow shoes with children with ASD.³ Incorporating exercise into age appropriate games, such as tag or simply climbing on playground equipment may also be effective. The options are truly endless.

How do I engage my child with ASD in physical activity?  Once you have determined the type of physical activity that the child with ASD may enjoy, finding strategies to maintain the child’s engagement in the activity is important.  The child may need physical or verbal guidance for the activity, meaning the child may need someone to actually hold their hand or verbally coach them through the activity.  The child may simply need someone to model the activity, meaning a peer, sibling, or parent would participate in the activity with the child.  What a great way to promote health and fitness for the whole family!  Use of stickers or favorite toys or snacks may also serve as reinforcement.  For me in practice as a physical therapist, one of my favorite strategies was to include the child in the planning of the physical activity session.  I would number a piece a construction paper and take turns with the child to select the activities we would complete for the session.  This provided a sense of control to the child, as we would refer to and check off our “list” after completing each activity.   Consider the strategies that work the best in your home and for your child.  Could you apply those same strategies to encouraging physical activity?

What are the benefits of physical activity and exercise for children with ASD?  Research studies have noted many benefits of physical activity for children with ASD.  Perhaps not surprisingly, improvements in physical fitness, including improves endurance, strength, flexibility, and weight loss, have been noted with exercise with children with ASD.³ Behavioral improvements have also been noted with the use of exercise. Children with ASD have demonstrated decreased stereotypic and self-stimulating behaviors (arm flapping, rocking, spinning), decreased aggression and disruptive behaviors, and improvements in on-task behavior, increased responsiveness and accuracy to academic demands.³ These improvements were noted to last between 40- and 90-minutes after exercise.³ 

Who can help me if I have questions about developing an exercise program? If you need assistance in developing an exercise program for your child, you can consider consulting a pediatric physical therapist.  Even if you are not currently being seen by a physical therapist, a local physical therapist should be able to schedule an assessment to assist you in designing an appropriate physical activity program.  Your child’s physical education or adapted physical education teacher at school may also be an appropriate resource when developing exercise programs for your child to complete at home.  Finally, you may want to check with local community programs, who may also have experience including children with disabilities such as ASD into their activities.

Exercise is important for everyone!  Make it a family activity, make it fun, and GET MOVING!

1.        National Health and Nutrition Examination Survey. Centers for Disease Control and Prevention.  Accessed December 19, 2011 from:http://www.cdc.gov/nchs/nhanes.htm.

2.       Curtain C, Bandini LG, Perrin E, Tybor DJ, Must A.  Prevalence of overweight in children and adolescents with attention deficit hyperactivity disorder and autism spectrum disorders: a chart review.  BMC Pediatr. 2005; 5: 48.

3.       Lang R, Koegel LK, Ashbaugh K, Regester A, Ence W, Smith W. Physical exercise and individuals with autism spectrum disorders: A systematic review. Research in Autism Spectrum Disorders. 2010;4:565-576.

Some people have commented on my own obsessiveness  around Will’s diagnosis and my quest to help him get better.  If you had insights into life with my brother, you’d understand why.  I love my brother dearly, but at times am extremely frustrated with him and the way the rest of my family treats him.  At 42, he still lives with my mom and is considered high-functioning for his diagnoses, but is really very low functioning for the rest of the world.  Or should I say, my extremely motivated, type-A, over-achieving world?

This brings me to my next point:  siblings of kids on the spectrum.  Prior to Will’s diagnosis, I knew very little about autism.  I knew a lot about my brother’s issues, though.  I wondered for many years if I had somehow caused his problems because of the ways I tortured him as a child.  In hindsight, it wasn’t really torture – just plain old sibling rivalry and torment that you see often among kids.  I’m sure my brother didn’t have the capacity to deal with it, especially considering a possible misdiagnosis for all these years.  I’ve lived with a lot of guilt for a long time and am just now pondering how it has all affected me.

Besides guilt, there is a lot of anger and jealousy.  My brother always got extra time, extra money, extra help, extra consideration for just about everything because of his ‘problems.’  I’d like to say I got nothing, but as a rational adult, I know that would be completely unfair.  As a mother of two children, one on the spectrum and one not, I know it is simply just not true.  However, as a kid growing up in a house of five, it very often felt a lot like nothing.  Of course, I feel frustrated, too, because if he would just do certain things, I know he could get better.  Then I’m thankful for all I’ve been given so I can do what I need to do for my son.  And then I feel guilty again, because I got it and my brother didn’t.  Ugh!

So, how do you prevent a lifetime of emotional upheaval, not only for your special needs child, but also for their siblings?  My initial ‘go to’ source is always Autism Speaks – they have a great set of resources for families and one especially designed for siblings.  From there, local chapters of the Arc often have classes and support groups for parents and siblings.  You can also ask your child’s teachers and therapists – they’ve been doing this for a while, most likely.  Finally, my favorite source of information, that network of autism-moms I’ve created.

I’m certain of one thing – the conversation that I have with my ‘typical’ child about his brother needs to be an ongoing one.  It will be different at age 8 than it is at age 4 and I’m certain it will be very different at age 15 and age 25.  As long as we all keep talking, I think we’ll get through it.

Interested in reading more?  Visit my personal website http://www.walkwithwill.com/

Twitter: @walkwithwill

I am a pharmacist by training and like to approach things scientifically.  Enter motherhood and all that goes out the window.  I spent years in various clinical settings –retail, hospital, long-term care.  I landed in a very large, very well-known pharmaceutical company quite by accident and ended up staying for 12 years.  In that organization I had the pleasure of training, teaching, selling and auditing – a wide expanse of experiences.  I have a Master’s Degree in Business Administration, too, which has helped in my new role in a very small marketing company that works closely with the pharmaceutical industry.

I have been an autism-mom for almost 2 & ½ years now.  My son was officially diagnosed  in August of 2009.  I, like so many of you, went on a quest to ‘fix’ it – to make him well and make sure he had everything he needed.  I spent countless hours on the internet, in doctor’s offices, filling out paperwork and talking.  I talked to everyone who would listen.  I asked question after question to those that would take the time to answer.  I reached out to everyone that I knew who had some kind of connection in the medical community and could possibly help me.  I made a pest of myself until people felt compelled to help me!

I am constantly in motion and find it difficult to sit still for long periods of time.  I need to be moving – executing on my ideas and thoughts.  I was actually like this before my son was diagnosed.  I just make better use of it now.  I teach group fitness and yoga. I am also a personal trainer and a firm believer in the link between the brain and exercise.  I try to keep everybody in my house active.  I am also really grumpy when I miss a workout.

I have found, over time that other parents of children with autism are my greatest resource.  The power of ‘word of mouth’ is truly amazing to me in the autism community.  I was encouraged by a friend to write a book and laughed off the idea with a shrug and a sarcastic remark (I’m also known for those).  That is how my blog came to life.

Our world is full of other things besides autism.  I work full time as a marketer and teach at a gym part time.  The boys go to school and play football in the evenings.  They will start kindergarten in the fall.  I have two step-children, one doing great things in college and the other is captain of her field hockey team.  I do all the other things that most moms do on a regular basis, along with managing my son’s autism.  I try to keep it all together and take each day one at a time.  

So, you will see me around here from time to time – writing on topics that affect me as a parent of a special needs child and things that affect my family and my world.

1. Prepare the child in advance as much as possible. Practice for the trip for a period leading up to the actual travels. Talk about the upcoming experience to help your child overcome anxiety. Act out or role play anticipated events in advance, from taking off shoes for airport security to applauding after a toast.

2. Redirect anxious energy into constructive activity. To take the edge off the potential anxiety of seeing many less familiar faces all at once, make the event a fun and educational by creating a special activity. Create a small photo album featuring people who will be at the event, and help your child play “Family Bingo,” checking off each person he or she greets or sees across the room. Or, create a pictogram of your itinerary or agenda and help your child follow along.
3. Encourage creative expression. For those able to write or draw, a pocket journal or sketchbook for illustrating what they’re experiencing can provide another useful outlet. Children who are more observers than participants may appreciate assignments such as taking pictures with a
digital camera.
4. Don’t expect perfection. Whenever you travel with children, it’s best to “expect the unexpected,” or at least leave room for something to pop up to divert you from your agenda.
5. Secure an extra set of hands. Try traveling with a friend, family member or caregiver to help keep things in order when you’re on the move, provide manpower for carrying belongings and an extra set of eyes, and even make bathroom breaks with multiple children an easier task.
6. Manage expectations for you and your hosts. A pending visit from a special needs child may produce stress for the host as well as the child and the parent. Prepare everyone by communicating your child’s needs in advance and asking for some general ground rules for inside the home, as a gesture toward making the visit as pleasant and peaceful as possible.
7. Bring along some “friends.” Pack a bag of objects that are fun and familiar. Sensory gadgets/fidgets, noise reduction headphones, weighted vests, or favorite belongings from home will help filter out outside stimuli and provide a comforting connection to “home.”
8. Minimize changes to eating habits. Try to keep your child’s diet consistent to prevent constipation, indigestion, allergic reactions or other adverse developments. Feed your child something satisfying to comfort them before a long  trip, and take along favorite utensils as a connection to more familiar situations. Don’t expect your child to sit for an entire meal. Rather, prepare a spot where he or she can rest, play or calm down while the meal continues.
9. RX for safer travels.  Ready a medicine kit with prescriptions, medical information and OTC products to confront fevers, allergies, cuts and other issues that may surface when you travel out of your home.
10. Preserve the moment but reserve time for breaks.  The ingredients of posing for pictures –people huddled close together, bright flashes, noise and the need to stay still – can lead to overstimulation. Don’t oblige your child to participate in all the photos, and be sure to take
breaks in between.“Traveling with a special needs child – or any child, for that matter – needn’t be a stressful event,” Weiss says. “In fact, it can be a great experience, offering lessons and fond memories for all. The keys are to prepare everyone in advance, include a few fun and  familiar items and activities, and above all remember that it takes time and patience to learn how to manage change.”

Do you know how I feel? The ability to identify with other people’s emotions can elude children who struggle to process verbal and non-verbal cues.   How can parents and teachers coach kids to develop empathy, a key to successful relationships at every stage of life?  We asked Lauren Zimet, a leading speech pathologist who works with children on the spectrum as well as individuals who don’t have a formal diagnosis but misinterpret social cues.

“I’m a big believer in setting children up for success. Before going in to a new or different situation, parents can role play with children, and model the expected and desired behaviors. Behavior is communication, and we can empower our children with tools to be effective communicators early on.

Where should I start?

“Take 10 slow deep breaths periodically throughout the day to relax your mind and body, and reduce anxiety.  Regular practice of breathing techniques builds immunity, and improves nervous system functioning and emotional regulation — in children and adults.

What are some techniques that help parents teach empathy?

Here are 10 activities that families can easily do at home or in their daily routine:

1. Draw “Feeling Faces” together and create a special family feeling poster to frame and hang up as a visual reminder.
2. Search magazines together for pictures of different feeling faces and make a collage. Then hypothesize why someone may feel a certain way.
3. Make photo books with children, and label the photos with emotions so your child can flip through and identify how his friends and family members are feeling in each situation.
4. Play board games that are designed to help children learn about empathy in ways that are fun for the whole family. I like Guess How I Feel? from Fun and Function.  I’ve played it with girls and boys of different ages, and the groups had meaningful reflections on the situation cards, guessing why a person may have a certain expression or response.
5. Encourage your child to see things from another person’s perspective. “You’re really good at soccer. How do you think the new player feels, sitting out, watching the team play? What can you do?”  “How do you think your sister felt when she didn’t get the singing part in the play?” “How do you think this person feels by looking at her face?”
6. Help your child recognize that people have different interests and preferences. See if your child can list the favorite ice cream flavors of family members or friends. Or ask what different people do for fun: Who plays baseball? Who builds with Legos? Who plays cards? Who plays video games? This sounds simple, but even older children can benefit from a habit of reminding themselves of their friends’ likes and dislikes before they get together. Have a discussion prior to a sleepover or play date: ”Let’s discuss what you and Michael may like to do when he comes over this weekend.” Taking time to discuss an event in advance shows your child that you care, and you are considering another person’s feelings and needs in the plan.
7. While reading stories to children, stop and ask children to identify the characters’ feelings in the story. Discuss how the characters’ behaviors reveal their feelings.
8. Do simple role-playing such as show me how your body and face would look if someone yelled at you, or knocked down your Lego building.  Or what if you found a puppy on the playground, or received a surprise visit from Grandma and Grandpa
9. Help children recognize that people may have different feelings about the same thing: “Cole likes to climb high on the jungle gym, but Wyatt doesn’t.”
10. Help children recognize that their feelings about a situation may change. “Jesse, you are feeling sad now and want to sit by yourself, but later you may feel differently and may want to join the group at circle time.”

How can educators reinforce empathy in the classroom?

Teachers can have a tremendous impact every day, especially with young students who look up to them.  In addition to modeling and facilitating empathy in the classroom, teachers can establish foundational skills in talking about feelings. 
Preschoolers and Elementary school children who are able to identify a wide range of facial expressions and non-verbal body language have a head start on the empathy characteristic.  In our Healthy Foundations curriculum, young students identify different feeling faces (drawings, pictures, and photographs), make their own feeling faces, share feelings with family members and friends, and then guess or infer why a person may look and feel that way.

As a pediatric physical therapist, I love working with children and
their families to develop obstacle courses using common household
objects.  Designing an effective and therapeutic home obstacle course
can be accomplished by following a few simple steps.

Step 1: Identify motor and cognitive skills that you would like the
obstacle course to help address with your child.

Try to include different types of skills and activities in your
obstacle course.  Begin by identifying skills that are strengths for
your child and areas that may require some additional practice.  By
combining skills in these two categories, you will ensure that the
obstacle course is not too challenging and will maintain your child’s
interest.  Combinations of too many simple or too many complex items
may discourage your child from participating.   Examples of skill
areas you may want to consider include:

-       cognitive skills such as sequencing, following directions, or
motor planning;
-       gross motor skills such as balance, strength, coordination or
specific motor tasks;
-       fine motor skills such as grasp, manipulation, or handwriting;
-       sensory processing skills.

Step 2: Plan specific activities for your obstacle course that target
the indentified skill areas.

Start brainstorming with your child.  Develop lists of fun activities
that you could include in your obstacle course.  I like to begin by
identifying a theme (ex: pirate ship), and then identifying activities
that would fall under my theme (ex: walk the plank).  Help your child
indentify activities that will specifically address areas of concern.
Aim for 3-5 activities in an obstacle course for young children under
5 or for children with difficulties with sequencing and 5-10
activities for older children or to challenge sequencing abilities.
Remember to include a mix of easier and more challenging activities.

Cognition
-       Sequencing – Remember order of course activities without cueing
-       Planning of activities
-       Following verbal or written directions for activities
-       Motor planning – how to complete each task or how to move from
one task to the next efficiently
-       Matching, ordering, or cognitive questions (riddles, math
problem, etc) activities built into the obstacle course
Balance
-       Walk on uneven surfaces
-       Balance along a line or beam
-       Sit on unstable surfaces
-       Stand or hop on one foot
-       Walk with eyes closed or blindfolded
Strengthening
-       Push or pull heavy items
-       Play with weighted toys
-       Carry heavy items such as books
-       Complete pushups or sit ups
-       Walk like different animals
Coordination
-        Jumping jacks
-       Dancing in patterns
-       Hop scotch type jumping
-       Running through hula hoops or around cones
-       Walk like different animals
-       Throwing/ aiming/ catching tasks
Fine Motor
-       Handwriting tasks – write names or numbers of each activity
-       Dressing tasks – buttoning, zippers, tying shoes
Sensory
-       Find items hidden in packing peanuts or rice
-       Dive into stacked pillows or cushions
-       Ball pits or baby pools filled with leaves or packing pea nuts
-       Spinning
-       Jumping
-       Moving on uneven surfaces

Step 3: Collect materials to build your obstacle course.

Common materials from around the house make excellent supplies for
building an obstacle course.  There is no need to buy expensive
equipment.  For example:

-       Pillows and couch cushions can be used to create climbing or
walking balance activities
-       Cardboard boxes can be used to make tunnels or targets to
throw items into
-       Rolled towels, blankets and pool noodles can make obstacles to
step or jump over
-       Packing peanuts, rice or dried beans can create a great
sensory environment to climb into or dig through to find items
-       Construction paper can make targets or stepping stones or visual cues
-       Consider using small balls for kicking and throwing skills
-       Have children jump from hula hoop to hula hoop or between
various colors of paper
-       Small children’s step stools can create obstacles to jump off
-       Use jump ropes, chalk or tape to create lines to follow on the floor
-       Fill cardboard boxes with heavy items and have your child push
or pull the box for heavy work
-       Forget the equipment and consider walking like various animals
(Bear, frog, crab, etc.)
-       Don’t be afraid to be creative with whatever items you have in
your home.

There are many websites available with additional obstacle course
activity ideas that can assist you in planning.

Step 4: Practice and describe the steps to the obstacle course with your child

Give the obstacle course a practice run.  Walk through the course with
your child to make sure they understand the order and directions for
the activities.  For children who have difficulty with motor planning
and sequencing, this will be important practice and will provide you
an opportunity to give them cues or ideas of how to complete the
tasks.

Step 5: Enjoy your obstacle course

Run through your obstacle course with your child.  For an added
challenge, consider the use of a stop watch to time how quickly your
child can complete the course.  Encourage siblings and peers to
participate in the obstacle course with your child.  Overall, have
fun!  Remember that not every activity has to be about therapy and
goal improvement.  Having fun and enjoying time with your child in
active play is equally important!

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Stephanie Stoltenburg

We have a new Featured Parent to introduce you to!

Fun and Function: Who are you and your kids?

Stephanie Stoltenburg: I’m Stephanie Stoltenburg. I have two children; Thomas, 9, and Jada, 6.

FF: What is the nature of their special needs?

SS: Thomas has Autism.

FF: What would you say is your biggest challenge in raising a child with special needs?

SS: Dealing with other people. Everyone from family members, teachers, therapists, doctors, friends, to random strangers. Dealing with others’ opinions on what they think is the best way to deal with Autism leaves me feeling rather exhausted. After almost a decade of having a child with Autism I’ve learned to trust my own instincts and opinions. I attempt to keep my inner circle rather small, keeping my focus on my children.

FF: What would you say is your greatest joy in raising your children?

SS: Simply watching them grow into completely unique strong willed children with amazing ideas of what they want to do in life. They never cease to amaze me!

FF: What would you say has been the biggest help you in raising your kids?

SS: Support from my husband, mother, father, and two brothers. It has brought us all closer together. Also – online Autism support groups. I’ve met so many inspiring parents online.

FF: Give us one tool you would hate to live without.

SS: Our calendar! We have so many appointments I would never be able to remember everything without my huge calendar. It’s a life saver!

FF: If you could give one piece of advice to another parent who’s child has just been diagnosed, what would it be?

SS: Join support groups in your area or online. Connecting with other parents is essential.

FF: And finally, an addition to our interview series, how do you help your kids adjust to the new school year?

SS: It’s a little bit different for us since I home school my son and my daughter goes to public
school. So they both have to adjust to different schedule changes. Though I find that dry erase boards with schedules on them help to keep them on track. We make sure there is lots of free time throughout the schedule so they don’t get stressed out. Also making sure everyone is getting plenty of sleep is key in our house.

Stephanie, thank you so much for taking the time to talk to us and all the readers  here at Fun and Function.

If you  would like to be a featured parent or professional, just let me know!

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