Tag Archives: autism

To Tease or Not to Tease, That is The Question

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Bullying has attracted a lot of attention, and it should.  People are much more aware of the damage that can be inflicted on a person’s psyche from any type of bullying; depression and suicide are the most imminent dangers.    The statistics about suicides related to bullying are downright scary:

Bully victims are between 2 to 9 times more likely to consider suicide than non-victims, according to studies by Yale University

Kids today are aware of the dangers of bullying, and my nine-year-old son sees it as his responsibility to protect his six-year-old sister from bullying.  This is his primary reason for taking karate, he says.  If she comes home from school with stories about someone treating her unkindly, he gets very angry and feels bad that he wasn’t there to protect her (he is home schooled due to the rigors of his therapy program to help him recover from autism).  Sweet?  I’m concerned that he may have taken this thought too far.

Lately, he is working through the concept of teasing.  Is teasing the same as bullying?  A few months ago, some boys in our church began teasing him about his aversion to sugar.  As part of his therapy he is on a special diet which eliminates sugar.  It’s not a big deal because fortunately, he loathes sugar.  Always has.  When he was a baby I gave him his first taste of ice cream and he gagged on it.  I gave him a bit of a chocolate chip cookie, and he spit it out.  For his first birthday, he looked at the cake, but was not in the least bit interested in it.  The fact that he does not like sugary foods is odd and funny to his peers, so a few of the boys taunted him about it.  I am 100% sure that none of these boys meant any harm and that their teasing fell into the realm of raillery which is good-natured ridicule and affectionate mocking.  However, my son didn’t interpret it this way.  Their taunts made him angry.  He even gets angry if one child teases another child.  It happened just this past Sunday when he was curled up and in tears over this and the fact that the child who did the teasing wouldn’t apologize to the person she teased.  She likely didn’t feel she did anything wrong.  I don’t think she did either, and the boy she teased didn’t seem phased.  My son does not recognize the affection and friendship at the foundation, and this is what I want to teach him.

Pro-social teasing is very beneficial in establishing and maintaining friendships, promoting bonding, and affectionate mocking aids in conflict resolution by teaching people to deal with interpersonal conflict in a safe manner with a person they consider a friend.  Good-natured teasing can actually even raise self esteem when it is done from a foundation of love and mutual understanding of each other’s intent.  But what happens when intent is misinterpreted and misunderstood?  There is a very good article that addresses that in Psychology Today, When Does Teasing Go Too Far?

There is a line in the sand.  Boundaries.  Each person has them, and each person’s boundary lines are different.  For those of us who are neuro-typical, who have an understanding of societal and cultural norms, it is our responsibility to recognize the signs when we cross those lines and to immediately back off and apologize when our banter violates a boundary.  We are also responsible to recognize whether there is benevolent or malevolent intent.  People like my son, who are learning to navigate our world, find this a challenge.  I need to teach my son how to interpret body language and facial expressions to know whether the teasing was okay or not.  This does not come easy or natural for him, but he’s getting much better.

This is not just about him toughening up and getting thicker skin.  It’s about him learning the rules of engagement in friendly society, and learning that not everyone is a threat.  Most people have good intentions and use teasing as a means to connect with him in friendship.  As confident as I am that those kids in our church did not intend any harm, I am confident that my son can navigate through this and learn how to be a kid in the group.

My son is a lot like Charlie Brown, often called a “block head” by Lucy who may or may not be labeled a bully.  Charlie Brown just wanted to be part of the gang, but knew he was different, as my son does.  He knew that things that were easy for some kids were difficult for him.  He was misunderstood and teased…some of the teasing good-natured; other teasing was malicious, but in the end the gang recognized that Charlie Brown is a good man and Charlie Brown knew he was accepted.  This is my hope for my son.

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Opening the Curtains

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Before becoming a mother whenever I heard the term “high-functioning autism,” I used to think, “Oh that just means that there really isn’t anything wrong with the person.”  Now I am the mother of a child diagnosed with high-functioning autism, and I know how wrong I was.  I understand that high-functioning means that my son can speak, he can feed himself, brush his teeth, use the toilet, bathe himself, dress himself, etc.  However, he doesn’t function like a typical 8 year-old boy.  On my Facebook page I celebrate the highlights of my children’s accomplishments.  I determined that I would not use that platform to complain or to draw sympathy or to in any way talk about the struggles we have with our children.  However, here on my blog, I have the freedom to share some of the gritty details of what our life is like with an autistic boy in the family.  Not to draw sympathy nor to complain, but to open the curtains so people can see more of what really goes on and perhaps gain understanding and insight so they might have compassion when they see a child acting out in a peculiar way.

A few months ago a friend of mine posted a meme on Facebook:

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I cringed because I know people have made that accusation about my son as well as making other accusations about my poor parenting skills.  I had to respond to my friend that sometimes that bratty behavior really is a disorder, and I asked the question, “How would you know?”  Most often, you wouldn’t know the difference because what you are witnessing is a brief snapshot of a moment in time.  In that moment you may be seeing a child in the midst of an uncontrollable raging meltdown and the parent staring glassy-eyed into space and ignoring her child.  You may think, “Why isn’t she doing something?”  The simple answer is that there is nothing she can do at that moment except try to keep calm and wait for the storm to pass.

When an autistic child is in melt-down mode, their limbic brain takes over.  This is the area of the brain that is responsible for emotional and social responses.  In melt-down mode they are completely irrational.  They can’t simply calm down.  Any word spoken to them is like a sword piercing their ears.  Any touch is like fire on their skin.  It is typical for a child like this to have up to ten melt downs per day lasting 20 minutes on average.  That’s 200 minutes.  That’s 3 hours and 20 minutes of screaming.  Every. Day.  That glassy-eyed parent is merely trying to cope.

Hyper-sensitivity to sounds

My son is hyper-sensitive to sounds, so going out in public can be difficult for him.  Imagine being in a restaurant.  What are the different sounds you hear?  People talking.  Dishes clinking.  Music.  Babies crying.  To us, some sounds are loud or soft, and we have the ability to filter sounds so we can pay attention to the conversation at our table.  For my son, everything is loud, and the most irritating sound to him is any noise a baby makes.  My son squirms, complains, and can be down-right rude in his comments about the baby.  He has no filter.  He is being brutally honest about how he is feeling.  The only thing that helps is having him wear sound-protection ear muffs to block the sounds.

To give another example of his hyper-sensitivity to sounds, we were staying at a hotel and he really liked to watch various elevators.  There was a glass elevator in the lobby and regular elevators other places.  He studied them.  When I could finally get him to move on, I was surprised to hear him comment about how the elevator in the lobby had a higher tone than the elevator that was close to our room.  Who pays attention to that?  My son.

Rigidity in routine

My son schedules every moment of everyday, and everything must happen exactly at the time he schedules it or the entire day is shot.  An exaggeration?  Nope.  If he schedules something at 9:00 a.m. he will stare at the clock and wait for it to be 9:00 before he starts his scheduled activity.  If his mind drifts off for a moment and he looks at the clock and it says 9:01 he goes into a melt-down because he missed the time and he doesn’t know how to do what he scheduled at a different time.  He becomes so distraught that he will say things like, “I don’t want to be on the earth,” which is scary to hear.

Oblivious to social cues and manners

We were at a concert at church a few weeks ago.  Before the concert started, the woman behind us introduced herself, and my son introduced himself, “Hello, I’m Aaron, and I’m a human duck.”  The woman was understandably puzzled and didn’t know how to respond to that.  Yes, my son has convinced himself that he is a human duck.  This is due to a cartoon character named Quack from the show Peep and The Big Wide World.  He even takes it so far as to walk like a duck, and quack in the middle of talking.  He thinks he is being cute and funny and has no idea that he comes off as weird and strange.  It’s heartbreaking knowing how much he longs for friends, but this strange behavior repels people who are meeting him for the first time.

This past summer there was a neighborhood night out event.  This is a new neighborhood for us, and my husband went to meet our new neighbors.  He was talking to someone who had children close to our children’s ages.  When he mentioned that our son is autistic, the person became uncomfortable and distanced herself.  It was clear to me that these people don’t want to deal with an autistic boy being friends with their kids.

Aaron has difficulty with group games, especially games that involve physical activity like running or throwing a ball.  He’s awkward and slow.  He has issues with his gait and with balance, so he doesn’t run as fast as other boys his age.  Due to issues with under-developed depth perception, he doesn’t throw and catch as well as his peers.  Team sports don’t work for him because he doesn’t pick up on social cues about what is happening in the game and each person’s role on the team.

His strange behavior also affects our daughter.  One day at church, after service, he decided he wanted to be a baby and started crawling around the sanctuary.  Our daughter burst into tears and exclaimed, “I don’t like when he acts that way.  I just want him to be normal.”  So do I, Sweetie, so do I.

Conclusion

All this to say that when you see a child acting out in a peculiar way, don’t assume that you know what is going on.  The best thing you can do is to give that parent the benefit of the doubt that they are doing the best they can.  Offer to help them with their bags while they wrestle their child into their car seat.  Whisper in their ear, “You’re doing a great job Mom/Dad.”  If you know this family, invite them to your home.  Spend time with them.  Get to know them.  Dare to allow your kids to play with them.

I grew up with a boy who has cerebral palsy.  I was horrified to hear the story his mother tells about taking him to a playground and other mothers scooping up their children to get away from him…like his condition was contagious.  This was the early 1970’s, and I would like to think that we’re more open and accepting of people with visible disabilities now.  Knowing this story, when I was with my daughter at a playground over the summer, there was another little girl there, who had cerebral palsy, with her mother.  She looked to be about the same age as my daughter.  The mother was holding her up and helping her play on the different equipment.  My daughter noticed this little girl, and I whispered to her, “Would you like to play with her?”  My daughter agreed, so we joined her.  The little girl’s face lit up when my daughter started playing with her, and my daughter talked about this experience for weeks afterward.

Aaron likes to write stories.  His stories follow a theme which reveals his greatest desire, which is to make friends and have adventures.  My prayer for him is that he would experience that.

 

Our Journey of Hope–Six Month Reevaluation

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We just arrived back home from our visit to the Family Hope Center (FHC) for our son Aaron’s (age 7) first six month reevaluation.  The reevaluation process is a repeat of the initial evaluation–two days of intense testing and assessments on all of his neurological pathways to determine his neurological age and his percentage of function.  At our first visit in November 2014, it was verified that Aaron was neurologically 45.4 months (3 years 9 months), resulting in functionality of 54% with a severe brain injury.  We received a robust therapy program that we were charged with leading him through at home.  Then we come back every six months to check his progress and tweak his program to move forward.

To see an outline of what the therapy program looks like, please read my post Our Journey of Hope–The First Months.

We had difficulty implementing the entire program.  The first 3 months was a huge struggle.  Aaron simply did not want to do any of it.  I don’t blame him.  I wouldn’t want to do it either.  It’s physically, emotionally, and mentally demanding.  It took time to figure out how to make it work.  After fighting and struggling nearly everyday for more than 3 months, one day my husband simply gave up.  He told Aaron, “I don’t know what do say to you anymore.  I give up.”  Then he went into his office.  About 45 minutes later Aaron came into the office, “Daddy, I did it.”  He did all of his crawling all by himself.  From there, Aaron took ownership of his program and scheduled specific time each day to complete his crawling and creeping and has been consistent since mid-March.  Then for the last couple of weeks before our trip, Aaron was able to complete 80-90% of his program each day.

The FHC team explained that it often takes a year to get into the groove of doing the program consistently, and from participating on the parent support Facebook group, I realized that NO ONE was able to do everything everyday.  However, there were all sorts of encouragement that even doing some of the program would yield results.

We did experience a major breakthrough in the beginning of April.  Aaron regularly had 1-2 meltdowns everyday.  These were usually caused by a disruption in routine.  He would scream, yell in a high-pitched voice, throw things around the house, etc.  Additionally, Aaron kept “messing up his words,” having trouble articulating his thoughts verbally, and this was very frustrating for him.  So much so that he would angrily stop talking.  My husband called the FHC, and they suggested that we remove all fruit from his diet so that he eats only meats and vegetables at every meal.  Long story short:  We followed their dietary directions,  Aaron went through one day of detox, then 5 days later, my husband realized that Aaron was no longer messing up his words, and Aaron realized it too!  In the entire month of April, he only had 1-2 meltdowns, rather than 1-2 meltdowns per day.  He knows he’s getting better, and he knows this most recent improvement was due to removing fruit, and he doesn’t even ask for it.

Often, my husband and I discussed our perceptions of Aaron’s improvement.  However, we knew we could not be objective, so we were looking forward to some concrete objective numbers to determine whether or not he was progressing.  What they like to see is a gain in neurological development (measured in months) to close the gap between his neurological age and his chronological age which will boost his percentage of function.

We arrived at FHC on a Wednesday.  We were one of 6 families there.  The director explained the schedule, and we got started.  We began by meeting the nutritionist (who is also an M.D.) to discuss his diet, then we met with another doctor to go over his general health.  After that we met with the co-director, Carol, to begin Aaron’s neurological evaluation.  She tested Aaron’s vision (not just a chart like we’re used to, but how his brain perceives what he sees, and how his eyes are tracking).  His tracking improved, but he still doesn’t track smoothly (which is important for reading), and when she had him follow an object with his eyes in a circular pattern, he always lost sight of it in the upper left.  Then she moved onto his hearing, and he had some slight issues with identifying where various sounds were coming from, but a definite improvement from last time.  Then for tactile, he had to identify heads or tails on a coin by touch.  Last time he never got it right.  This time, he never got it wrong!!  She tested his ability to smell.  Again, there was an improvement, but there are still issues with this.  He does not like the smell of anything–lavender, lemon, cinnamon, vanilla; however, the one smell he kind of tolerated was black pepper.  One thing I notice is when introducing a new food, he will declare that it smells terrible but tastes yummy.  There’s a disconnection there, and we have some work to do to help him in this area, which is part of his limbic system and controls his emotions.

After a break for lunch, Carol tested his reading and comprehension.  Aaron can read anything you put in front of him, but that doesn’t mean he understands what he’s reading.  For the last visit he missed all but 1-2 comprehension questions at the 1st grade level (which is where he should be).  This time, he only missed 1-2 questions at the 2nd grade level, and Carol read a lengthy 3rd grade level story and verbally asked him some comprehension questions.  He only missed 1!  In 6 months, he went up an entire grade level.  Keep in mind that we haven’t been able to do any school work.  We decided that the therapy program to heal his brain function was more important and that he would catch up academically, and that is what we’re seeing.  As his brain is healing he is able to take in and process more information.  So, at the end of the day, Carol sent us out of her office while she calculated the results.  In 6.5 months:

Aaron gained 19.7 months in neurological function…that’s more than a year and a half…which is a 303% improvement!  He progressed from 54% brain function to 72.8%, and the level of his brain injury moved from severe to moderate.

You may ask, what are the improvements we’ve seen?  Well, Aaron is much happier and much more social.  He plays very well with his younger sister, and joins in with playing with kids at church.  Aaron participated in a home school co-op, and my husband felt comfortable enough to leave him in the class while he attended the parent encouragement sessions.  Reports were that Aaron behaved and participated with the class very well.  He has a much greater ability to articulate his thoughts, which is a relief to us, because before we were at a loss for what was really going on with him, now he can tell us!  It was really fun to have the FHC team read through notes from our previous visit and discover that issues that were monumental then are nonexistent now.

The second day was a series of appointments with various team members to develop his new therapy program: sensory, breathing, mobility, and learning/social.  We are now home with a tweaked therapy program, and ready to move forward.  Our biggest issue right now is Aaron’s rigidity with routine and schedule.  Aaron schedules every minute of the day, and completely falls apart if there are disruptions to that schedule.  It is very difficult for our family, and my husband and I would like to be the ones to make the decisions rather than our 7 year old son, and we’re looking forward to this issue resolving.

Our conclusion is that our labor is not in vain.  We know Aaron has a future and a hope (Jeremiah 29:11).

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Our Journey of Hope–The First Months

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DISCLAIMER:  The program outlined in this blog post was prescribed specifically for my son by the Family Hope Center‘s team.  I wrote some of the details for friends and family who wanted to know what we’re doing.  I strongly caution anyone from trying to implement these therapies without explicit instruction from the team at the Family Hope Center.  This program does work, so, please contact them and make plans to attend their 3-day parent conference.

We just passed the three month mark since beginning our Journey of Hope and the program outlined by the Family Hope Center.  We are seeing results, so although the program is demanding, we are motivated to continue.  My husband, Bruce, essentially put his life on hold so he can completely focus on working with our son, Aaron, while I work full-time.

Each activity is designed to trigger various areas of the brain and form new connections to promote healing.  There was a recent article in the Wall Street Journal reporting about new research that proves the brain’s amazing ability to heal through physical and mental exercise.  This is the hallmark of the Family Hope Center’s approach.  They operate on the premise that the brain can heal.  They spend time to teach parents how the brain develops, and we now understand that Aaron’s brain function is simply disorganized, and each of the therapies works to help his brain organize itself.  Here is the list of all we need to fit into each day:

Reflex bags–40 times per day.  This stimulates deep breathing reflexes which increases blood flow to the brain.  Once the bag is covering his mouth and nose and we notice him beginning to take rhythmic deep breaths, we set a timer for 30 seconds, then we wait at least 5 minutes in between.  Aaron finds this very pleasant and calming.

Crawling (commando style)–300 meters (working up to 500 meters).  We do this on a hard smooth surface, so he glides across the floor.  This is the therapy that Aaron resists the most, but he can get the distance done in less than 30 minutes if he focuses. This activity stimulates the brain stem, and there are important functions in the brain and reflexes that didn’t develop correctly in Aaron because he didn’t crawl enough like this as a baby.

Creeping (on hands and knees)–600 meters (working up to 1,200 meters).  We laid out a path of foam tiles in our basement.  Back and forth; back and forth.  This stimulates other areas of the brain stem that are vital.

Sample of what this looks like

Olfactory–9 different scents per day (3 in the morning, 3 in the afternoon, 3 in the evening).  His sense of smell is way off.  Smells that we find pleasant are repulsive to him, but he loves the smell of his sweaty shoe.  We find the same with his sense of taste.  He hates candy, cakes, cookies, ice cream, etc.  However, he loves the taste of fermented cod liver oil.  Is it any wonder that he was a very picky eater?  His eating habits are much better now.  Anyway, with each smell he needs to be able to identify it, and we are to watch for appropriate reactions to each smell.  Smelling also triggers the brain’s limbic system (people on the autism spectrum typically have under-developed limbic systems):

The limbic brain’s primary function is to warn us of danger. It is associated with autonomic functions such as arousal, motivation, emotion, sex, recent memory, smell and bonding. The olfactory pathway feeds this part of the brain directly.–Family Hope Center

Listening to a special music CD–30 minutes per day.  This helps him filter sounds.

Hyperbaric chamber–60 minutes per day.  By far, Aaron’s favorite therapy.  4 pounds per square inch of pressure increases blood flow and has been proven to grow new tissue.  We do this at the end of the day.  He goes to bed right afterwards and sleeps soundly through the night.

Hyperbaric Chamber photo 2

Nutrition.  We are following the GAPS diet.  His typical daily diet:

  • Breakfast–scrambled eggs and fruit
  • Snack–grapes and cheddar cheese
  • Lunch–organic, grass-fed beef patty and lentil soup
  • Snack–Larabar
  • Dinner–zucchini spaghetti and grain-free meatballs with a sugar-free pasta sauce
  • 24 oz of water per day (working up to this)
  • Supplements (fish oil, fermented cod liver oil, vitamin, probiotic…)

Tactile therapy (smooth and rough on skin)–10 times per day.  We still need to implement this.

Social behavior and boundaries (reduce repetitive play and sit quietly in church).  We notice a definite reduction in repetitive play, and we need to work on the “sit quietly in church,” though he did sit with me for 10 minutes last Sunday and did great!

Education (building vocabulary and language skills as a foundation for social communication)–We are seeing significant improvement with his social skills.  He carries on wonderful conversations and joins in with games and activities with other children.

In addition to all of this, Aaron takes karate lessons twice per week and weekly piano lessons.  Aaron also has a sister, Naomi, who is in pre-Kindergarten and involved with dance lessons.  Bruce takes karate three times per week and is involved with prayer meetings and worship gatherings at our church.  I work full-time, and I’m training for two half-marathons this year.  We lead a busy and full life.

Our next milestone will be Aaron’s re-evaluation at the Family Hope Center at the beginning of May.  They will repeat all the tests they did in November, then adjustments to his therapy program will be made, and we continue on.

Our Journey of Hope

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Our journey of hope begins.  For the first time since we received our son’s diagnosis and started putting together the puzzle pieces, we have hope.  We have a compass and a map, and we have gas in our car and are ready to go.

Hearing that our son is on the autism spectrum was hard and painful, but even more painful was the resistance we encountered from our physicians and therapists who gave us no reason to hope that there could ever be a day when he wouldn’t carry the ASD label.  He may improve, but he would always be autistic.  Anything we wanted to try was shot down and not supported by the very people we were supposed to lean on for help.  Whenever we asked about a particular test or a nutrition protocol they seemed to condescendingly say to us, “Shut up.  We’re the experts!” because they thought there wasn’t enough scientific evidence to back it up though there were plenty of accounts of success that convinced us to at least try.

Up until now I feel like we’ve been wandering through a labyrinth and slamming into walls of resistance at every turn.  Our son met with a therapist over the summer, but she determined that he would be better served by going to speech therapy.  We got him going on that only to have his therapist quit and move to another city.  My husband wasn’t too impressed with the therapy anyway.  The local autism centers are overflowing, and there is a long waiting list.  We have been following the GAPS diet with some success, and the person who is coaching us through the diet told us about The Family Hope Center about a month ago.  We checked out their website and liked what we saw.  For me, I especially liked that their approach is to train the parents to do the therapy at home.  This is part of their philosophy:

Our clinical team and your family become partners in the strategic development of your child while keeping the family first.

Last week, my husband and I attended their three-day conference for Parents of Special Needs Children, which far exceeded our every expectation.  The staff at The Family Hope Center works from the premise that all kids can be made well, and they believe in the potential of the brain to heal.  You see, they don’t imprison kids into labeled cells.  They believe that kids can become whatever they want to be rather than what their deficiencies say they have to be.

Rather than assigning a diagnostic label like autism, ADD/ADHD, cerebral palsy, down syndrome, etc. they

…evaluate your child’s development, pinpoint the location of the dysfunction in the brain, and design and develop a highly-individualized, tailored treatment plan—physical, physiological, emotional, social, and nutritional—that specifically targets the injured area. Then, we follow up with support, supervision and ongoing counseling.

The Family Hope Center developed an Integrative & Developmental Progression Chart which they use to calculate each child’s neurological age.  The neurological age compared with the child’s chronological age is used to calculate the percentage of the child’s functionality and whether the injury to the brain is mild, moderate, severe, or profound.  Their staff walked all of us participants through the chart and we calculated these numbers for our children.  My husband and I calculated that our son, chronologically 83 months (almost 7 years), is neurologically 63 months (5 years 3 months) and functioning at 73% with a moderate brain injury.  However, we did suspect that perhaps these numbers and percentage would be higher with more expert assessment.

My husband and son are at The Family Hope Center now, and the results of their expert assessment are that he is actually neurologically 45.4 months (3 years 9 months), resulting in functionality of 54% with a severe brain injury.  This is much worse than I suspected.  Hearing the explanation, I completely agree with their assessment though it feels like I was punched in the stomach.  But now we know.  We know where we are, and we know where we are going, and most importantly, with the therapy program they’re developing right now, we know how to get there.  We have hope.  We have that feeling that what is wanted can be had, and that everything will turn out for the best.

And we know that God causes everything to work together[a] for the good of those who love God and are called according to his purpose for them.  (Romans 8:28)

What do we want?  We want our son to live the life God intended, to fulfill his every potential, and to be a blessing in the earth.

Before I felt like we kept slamming into walls.  Since we found out about The Family Hope Center I feel like a whole new world of opportunity and bright horizons have opened up for us.