Tag Archives: autism

How an Occupational Therapist Can Help The Siblings of Special Needs Children

 

joao-rafael-662575-unsplashThe parent of one of my clients recently returned from a conference related to her youngest child’s genetic disorder, and she told me that the presentation on helping the siblings of special needs kids really only offered one niblet of advice: “Try to give each sibling 10 minutes a day of “just us” time.”

My shoulders, and my heart, fell.  Telling exhausted and worried parents that they need to find more time in their day, every day, isn’t fair.  This mom could have used so many more specific strategies.  She didn’t need another way to feel inadequate to the challenge.  When you have a special needs child, you don’t have extra time.  Some days you aren’t sure you will be able to shower and shampoo.  Even if you could carve out some time by delegating and hiring help, the truth is that living with constant worry about the present and the future, running chronically short on sleep, and perhaps still recovering from a NICU nightmare…this doesn’t lend itself to stellar time management.

There are things that really do help.  Among them are getting the right kind of assistance and support, sharing the knowledge you receive from specialists, and handling everybody’s feelings with compassion (including self-compassion) and honesty.    Occupational therapists are out there helping families deal with life, since we have a solid background in the science of occupational demands and the psychological responses to illness, injury and trauma.  We aren’t psychotherapists, but we study the science of healthy life routines and behaviors.  We also spend a lot of time learning what special needs kids need to thrive, and this includes supporting the siblings and parents of our clients.

Here are some of the things I wish that the presenters had suggested:

  1. Ask your child’s therapists to train more of your family members and caregivers.  This means the partner that isn’t the primary caregiver for a special needs child, but it also could be the grandparent or the babysitter that is the backup emergency caregiver.  There are parents who feel they can never take a break because a half-spa day would mean that no one knows how to prevent their child from falling down the steps or how to know when a child is going in the direction of a meltdown that will derail the day.  If you have a medically fragile child, more people need to know how to keep them safe and healthy.  Your child’s therapists are skilled in providing training in their area of specialization.  They may not offer it to your other family  members unless you ask for it to be done.  This is an investment in your peace of mind.  Make it happen.
  2. Find out if your child’s siblings can enter a therapy session and learn more about how to help or encourage their special needs sibling.  Therapists can teach your child’s siblings, and because they are seen as authorities and not parents, this can work well to foster understanding and interest.  Even preschool kids can learn why the baby isn’t playing with them( but she is watching) and that means “I like you”.  Your therapists are pediatric specialists and are good at helping children of all ages, even if your social needs child is an infant.
  3. Learn methods to spread your warmth and concern without promising time commitments you may not be able to keep.  Something so simple (and explained in more detail in my new book below) is to talk with your child’s siblings about your feelings of anticipation before some fun event, even if it is reading a chapter in Harry Potter.  Telling them, days ahead, that you can’t wait to be with them can feel so good.  Later, you can remind them how much fun you had.  Don’t require them to reciprocate.  You are speaking about your feelings, and if they brush it off then don’t take it personally.  Tweens especially struggle with how to respond.  They still need to hear your warmth.
  4. Express your frustrations honestly, but mindfully, to your child’s siblings.  You will both feel better for it.  You don’t have to wail and keen, and in fact I would discourage that.  You can do that with your partner or your counselor.  But your other children need to know that feeling less than blissfully grateful for their special needs sibling is normal and not shameful.  When some feelings are perceived as unacceptable, they grow in importance and sprout little behavioral problems of their own.  Start by speaking about how tired you are.  It is honest and it is probably already visible.  Mention that you feel both things; love and frustration.  You have to adjust for your other children’s age and emotional tolerance, but I promise you:  this is going to really help.
  5. Ask for help.  And accept it when it is offered.  Some people don’t think they need help, and some don’t think they deserve it.  Some think that it will be seen as weakness or laziness.  Some ask for help and get a casserole instead of babysitting.  Some get advice instead of a casserole.  And some turn down help to avoid feeling as tired and frightened as they really feel deep inside.  Think carefully about how and why you don’t have or accept help, and try doing what doesn’t feel natural or easy.  It could be the best move you make this week.
  6. Reconsider the amount of therapy and tutoring you are doing.  I know; what therapist thinks you can overdo their own treatment?  Me.  Overscheduling therapies can backfire when you, your special needs child, and the rest of your family suffer from the demands.  The time demands, the loss of participation in real life fun like hayrides and playgrounds, etc.  The downtime that any normal person needs and so few parents and special needs kids get.  That affects siblings too, in lost time with parents and exhausted parents trying to wedge “me time” into a free moment.
  7. Make choices about what your priorities are, but allow yourself to have a priority that is not all about your child.  For example, you may have to accept that your house isn’t going to be spotless, and that you may be buying rather than making most of the holiday cookies.  But if making a few batches of a precious family recipe (my best friend from college makes her Scottish grandmother’s recipe for fruit squares) will make you feel like a million bucks, then go ahead.  Yes, life with a special needs child is different from what you expected.  But you get to have some things from your previous life that bring joy!

I am so excited to report that my newest e-book is finally done!

The JointSmart Child:  Living and Thriving With Hypermobility Volume One:  The Early Years is designed to empower the parents of hypermobile kids ages 0-5.  There are chapters on picking the right high chair, toys, even pajamas!  One section is just on improving communication with your family (including siblings), teachers, therapists and even doctors.  No other book answers questions that parents have about finding good eating utensils and how to navigate playdates and social events more successfully.

It is available on Amazon as a read-only download and on Your Therapy Source as a printable and click-able download.  Look for more information and a sneak peek at the ways every parent can learn what therapists know about positioning here:The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!

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Binaural Beats and Regulation; More Than Music Therapy

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When you have so much to choose from, how do you pick the right one?

For people who have read about or tried Quickshifts  Quickshifts: A Simple, Successful, and Easy to Use Treatment For Processing, Attention and Postural Activation, you may be wondering what all the fuss is about listening on headphones versus speakers, and why the music has this echo-y tone to it.

The use of binaural headphones allows the ears to hear the full range of sound with as little interference or absorption from the environment.  It is important that the left and right ear are hearing the sounds separately.  The echo-y sound?  What you are hearing is the BBT; binaural beat technology.

It isn’t new.  BBT has been used and researched since the 70’s.  It is out there in many forms; you can even find it on YouTube.  There are enough studies done to prove that this technology has real effects on alertness, attention and mood.  It makes sense that therapists would like to use it to help kids with self-regulation issues.

BBT is helpful for learning and self-regulation, but only if you know what brainwave state you want, and why you want it.  And that is where therapists can help.

But which one to use?  I only use Quickshifts in my therapy sessions.  Why do I prefer Quickshifts to deliver BBT?

  • Quickshifts entrain an alpha brainwave state.  This state is associated with calm focus and, wait for it, interoception.  Yup, the biggest new word in OT is interception, and there are some excellent studies done by neuropsych researchers that indicate that alpha brainwave states increase interoception.  Yeah!  Interoception is the ability to perceive internal states, and this includes basic physiological states such as fatigue, hunger, and the need to eliminate.  So many of our clients struggle with knowing what they feel.  We can help.
  • Alpha brainwave states are theorized to act as a gating mechanism for anxiety, and anxiety isn’t a great state for kids with ASD, SPD, or, really, any of us.
  • The music used in Quickshifts is very carefully designed to enhance specific functional states, and every OT is all about function.  We don’t want just relaxation, we want engagement in life.  There are albums for attention, for movement, and for regulation.  They all use BBT.  At any particular time, one functional goal will predominate.  I don’t need to induce a meditative state in a child that is working on handwriting.  I need calm focus and movement control.
  • The avoidance of pure tones means I don’t have to worry about seizure activity in most kids.  If a child has frequent seizures, I can be confident that I am not increasing them.
  • The choice of instrumentation on Quickshifts albums is often more grounding than other BBT choices.  I want kids to feel grounded, not floating on a cloud.  That state makes it harder to speak, move, etc.  Being jolted into a high level of engagement without grounding isn’t great either.  Remember:  OT is all about functioning.  That happens at that “just right” point of arousal.
  • There is a progression of instrumentation and rhythm on many Quickshift albums that guides the brain into more environmental awareness and postural activation, but it is done gently.   Getting to an alpha state is a goal, but improving functional performance with less risk of overload is most important to me.  I have to give kids a chance to leave our session in a good place.
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He picked out his perfect pumpkin!

Does Your Child “Trace” the Room’s Perimeter or Hate Big Spaces? There is a Sensory-Based Explanation

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Space; the final frontier?

When you see it, it looks like Helen Keller crossed with a Roomba.  A child enters a space, even a familiar space, and runs the perimeter without stopping to play or examine things.  They may trace the room with their fingers, or repeat this process many times before they “land” and engage in some kind of purposeful activity.  If they get upset or challenged, they may resume this behavior.

One explanation for this behavior is that it is a solution to spatial processing difficulties.  When a typical child over the age of, let’s say 14 months, enters a room, they use their visual and auditory skills to tell them about the shape, height, and contents of the room.  As we mature, we use higher-order sensory input to inform our awareness and thinking.  We use sound in particular to tell us about the space to our sides and behind us that we cannot see.  Kids with ASD and SPD are stuck using immature types of information, and need to use them more often and more intensely to get the same knowledge.

How does this feel for them? Think of Notre Dame cathedral (before that awful fire).  The soaring ceilings and the long aisles create an other-worldly feeling you cannot escape.  Your brain knows you are not in your living room, or even in your own place of worship back home.  The medieval architects knew this too.  That was exactly the effect their were aiming for.  To set you back on your heels with the wonders of G-d.  How?  By making the spatial characteristics very unfamiliar and difficult to square with everyday experience.  To have you feel smaller and less in control in the presence of the almighty.

Now imagine that every space you inhabit gives you that feeling.  You enter a room and your eyes go everywhere.  You want to walk around to give yourself more information about where you are.  You don’t, but your nervous system is suggesting it.  You feel off balance and vulnerable.  Sound familiar?

What can you do?  Treating spatial processing issues isn’t easy.  Addressing limitations in vestibular and visual processing can really help, but I think that sound-based treatments are some of the easiest and most effective.  I use Quickshifts effectively to address spatial processing issues  Quickshifts: A Simple, Successful, and Easy to Use Treatment For Processing, Attention and Postural Activation.  Of course, it is best to address all the sensory processing issues any child has to get the best results.  You want to cement in the skills of better sensory processing by achieving good functioning in multiple situations.  But spatial processing problems have to be addressed to achieve a calmer and more organized state.  You want every child to feel safe and supported wherever they go!

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Effective sensory processing treatment helps kids feel safe in big spaces

Does Your Special Needs Child Have a “Two-tude”? Its Not Just the Age; Its Frustration Minus Skills

 

patrick-fore-557736I spend a lot of my work week with toddlers, and they can be a challenge.  One minute sunny, the next screaming because their cookie broke.  Special needs toddlers can have a “tude as well, but many professionals sweep it under the rug.  They tell parents that this is normal, and that they should be grateful that their child is going through a completely normal stage of development.

Except that many parents who have already raised typically-developing kids KNOW that there is a difference with this child.  It could be the intensity of the ‘tude, or the frequency of the meltdowns, or the types of events that trigger the tantrums.  OR ALL OF THEM!  Parents know that this doesn’t feel the same, but they often shut up when they are told that it is so normal.  Perhaps their eyes and ears and memory isn’t correct.

They aren’t wrong.  Their perception that something is a bit different can be totally correct.  And the reason(s) are quite obvious to me.

Special needs kids come in an almost endless combination of needs.  Some are physical, some are communication needs, and some are cognitive or social skill needs.  Some are all of these.  Having challenges in moving, speaking, comprehending language and/or concepts or struggling to interact will create more frustration for every single day of a child’s life.  That’s the reality of disability.

The image of the placid and sweet special needs child, patiently waiting to be assisted and supported is just that: an image.  Most kids bump into frustrating barriers every day.  The toddler that has just learned to walk but can’t run, the toddler that is talking or signing but still isn’t understood by their older brother, the toddler that cannot handle a change in routines…it goes on and on.

Typical toddlers spend less time frustrated that they are unable to accomplish simple skills.  The typical 14 month-old that can’t tell you what he wants becomes the 18-month old that can say “cakker, pease” for “cracker please”.  A special needs child could be 4 years old and still struggling to explain that he wants another cracker.  That is a long time to be frustrated.  The typical 26 month-old that can’t run after their brother in the backyard becomes a runner at 30 months.  A special needs child may not run for years.  That is a long time to be left in the dust when everyone is running.  Is there any wonder that parents see more frustration, more tears, more stubbornness?

My saddest story of failed inclusion is when a family placed their special needs child in a toddler development group with mobile kids.  Even though this child had a personal aide, he still watched as his peers got up from the snack table and ran outside.  They left him with the aide, who then carried him outside so he could WATCH his peers climb and run.  He became distraught at home when he was left alone in a room.  A puddle of tears.  It was so sad to see.  No one had thought of the emotional cost of inclusion to this toddler, only the social and academic benefits.

What can be done?

I teach families the Happiest Toddler on the Block strategies as soon as they are appropriate.  Dr. Karp’s techniques build a child’s skills while enhancing interpersonal connections.  Yes, sometimes you have to provide consequences for aggression, but mostly it is about building frustration tolerance and emotional intelligence.  For everyone.  I use these techniques all day long.  I could never handle so many toddlers for so many years without them!

Looking for more information on special needs toddlers?  Read Need to Support A Child’s Independence? Offer to Help Them! and Safety Awareness With Your Hypermobile Child? Its Not a Big Thing, Its the Biggest Thing.

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Halloween is Coming: For Sensory Sensitive Children, It’s No Celebration

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I wonder what the little girl with the sparkler is really thinking?

I love Halloween, but not everyone does.  Kids with sensory sensitivity top THAT list!  The strange transformation of their classrooms, homes and yards aren’t exciting; they are disorienting.  The masks and loose costumes?  Pure Hell.  But at least here in America, it often seems like it is almost unpatriotic to shun this holiday unless you have a religious objection.  What can you do?

I am re-blogging this post since I think it is worth another look: Have More Halloween Fun When Kids Don’t or Can’t Trick-Or-Treat , and because even if you DO take your child out for treats, the ideas could help them handle things more easily.

In this climate of diversity challenge, I sincerely hope that there is room for all of the people, young and old, who don’t really have fun with Halloween in it’s traditional forms.  I would like to think that holidays could be what you make them.

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Just because the squash on the left aren’t orange, that shouldn’t mean they aren’t great symbols of the season!

Not Making It To the Potty In Time? Three Reasons Why Special Needs Kids Have Accidents

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If your special needs child isn’t experiencing a medical reason for incontinence (infection, blockage, neurological impairment) then you might be facing one of these three common roadblocks to total training success:

  1. Your child has limited or incomplete interoceptive awareness.  What is interoception?  It is the ability to sense and interpret internal cues.  The distention of the bladder, the fullness of the colon, etc are all internal cues that should send them to the potty.  Unfortunately, just as poor proprioception can hinder a child’s ability to move smoothly, poor interception can result in potty accidents, among other things.  Working with them to become more aware of those feelings can include monitoring their intake and elimination routines.  You will know when they should have more sensory input, and can educate them about what that means.  Listen to how they describe internal feelings.  Kids don’t always know the right words, so use their words or give them a new vocabulary to help them communicate.
  2. Your child’s clothing is difficult to manage, or their dressing skills aren’t up to the task.  They run out of time before nature calls.  Tops that are hard to roll up, pants that have tricky fasteners, even fabrics that are hard to grasp and manipulate.  All of these can make it a few seconds too long once they get into the bathroom.  If you are not in there with them, you may have to ask them to do a “dry run” so you can see what is going on and what you can change to make undressing faster.  In my e-book, The Practical Guide To Toilet Training Your Child With Low Muscle Tone, I teach parents the best ways to teach dressing skills and the easiest clothing choices for training and beyond.  If you have ever had to “go” while in a formal gown or a holiday costume, you know how clothing choices can make it a huge challenge to using the toilet!
  3. Your child is too far from the bathroom when they get the “urge”.  Children  with mobility problems or planning problems may not think that they are in trouble right away.  They might be able to get to the bathroom in time in their own home.  When they are out in public or at school, the distance they have to cover can be significant, and barriers such as stairs or elevators can be an issue.  Even kids playing outside in their own yards might not be able to come inside in time.  If you can’t alter where they are, teach them to use the potty before they go outside or when they are near the bathroom, instead of waiting.  Taking the time to empty a half-full bladder is better than an accident.

Looking for more information on toilet training?  Read How To Teach Your Child To Wipe “Back There” and Low Tone and Toilet Training: Learning to Hold It In Long Enough to Make It to The Potty.  and of course, my e-book is available for more extensive assistance The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

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Teaching Safety Awareness To Special Needs Toddlers

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Parents anxiously wait for their special needs infants to sit up, crawl and walk.  That last skill can take extra months or years.  Everyone, and I mean everyone, uses walking as a benchmark for maturity and independence.

They shouldn’t.  A child with poor safety awareness isn’t safer when they acquire mobility skills.  Sometimes they are much less safe.  Yes, they may be able to move without your help, but they may need to be more highly monitored and given more assistance to learn how to be safe.  They are exploring their environment and their new skills that took them a long time to develop.  They have been wanting to climb on the couch for months.  Now they can.  Getting down the “safe” way isn’t as important to them, and maybe not as easy as sliding or rolling off.  Oops.

What can parents do to help their child be a safer (notice I didn’t say “safe”) ambulator, crawler, cruiser, etc?  

  1. Talk about safety before they are independent.  Will they understand what it means?  Probably not, but your tone and your insistence on how movement is done says that you value safety and you want them to do the same.  Kids learn from all of our actions.  Make this one familiar to them by being very obvious and explicit.
  2. Take your physical therapist seriously when she or he teaches you how to work on core strength and balance skills.  Yes, I still maintain that safety is more than a sensory-motor skill, but having the best possible sensory and motor skills is important.  Having good safety awareness and safety behaviors without these skills will make a child more vulnerable to falls and injuries.
  3. The same goes for sensory processing activities.  If your child cannot perceive the movement of falling, the tactile and proprioceptive change as they crawl or step on something, or tolerate multiple sensory inputs at once, they are much less safe, even with good strength and coordination.  Really.
  4. Know your child’s cognitive and social/emotional skills.  Impulsive children are less safe overall.  Children that cannot process your instructions or recall them without you are less safe.  Children that enjoy defying you more than they want to avoid falling are less safe.  If you know any of these things, you can gauge safety and react more appropriately.  You will be less frustrated and more helpful to them.
  5. Reward safe execution and do not reward unsafe behavior.   My favorite way to avoid punishment but also to send my safety message home?  Not providing eye contact or much at all in the way of conversation as I stop unsafe actions, and either removing a child from an unsafe situation or assisting them in using the safe method to execute their move.  They get no satisfaction from seeing me react strongly, and they get the message that I am not accepting anything but their best safety skills as they move.
  6. Stop a child that is moving in an unsafe way, and see if they can recall and initiate the safe choice before assisting.  You don’t want to teach them that only you will make them safe and they need someone to be safe out there. They have to learn how to assess, react and respond, and all children can build their skills.  Some need more teaching, and some need more motivation to begin to take responsibility for their safety.  Give them both.

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