Category Archives: autism

Does Your Special Needs Child Have a “Two-tude”? Its Not Just the Age; its the Circumstances

 

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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Why Is The Wilbarger Protocol So Hard To Get Right?

 

michael-mims-134037-unsplashThe Wilbarger Protocol has been a staple of therapeutic treatment of sensory processing disorder for decades.  I will reveal my age, and admit that I learned directly from Pat Wilbarger.  She was an amazing teacher and a highly skilled clinician to see in action.  But I have lost count of the number of times parents have shown me how they have been instructed to administer deep pressure brushing and joint compression, and I had to decide exactly how to respond in a professional manner.  My initial internal reaction is often something akin to “STOP!”

So many parents have been incorrectly taught.  They are wondering why this technique hasn’t worked very well for their child.  Internet-savvy parents have consulted “Dr. Google” and heard both positive and critical remarks about the Wilbarger Protocol from other parents.  They are discouraged; concerned that their child is too impaired for it to work, or they are just not coordinated enough to be successful.

Well, I can tell them that the Wilbarger Protocol won’t work well if you don’t do it right.  And you won’t do it right if you weren’t shown correctly.  I suspect that, like a child’s game of “telephone”, their former therapist learned the method from her supervisor, and her supervisor learned the technique from HER boss or teacher.  And THAT therapist learned from her clinical director.  On and on, until there is no understanding of the concepts that form the basis for the technique, such as Gate Theory, or that Pat left the cranial compressions behind in the early to mid-90’s due to the risk of cervical injury.

This technique isn’t easy to do on toddlers or children with ASD.  Being comfortable with  manual treatment helps.  Understanding what not to do helps.  Knowing how to create a receptive state in a special needs child helps.  It takes a level of confidence, experience, and the ability to understand how to adapt it to the specific client without losing the benefit we are seeking:  neuromodulation.  It is possible to do it wrong and unfortunately increase sensory sensitivity or put a child into overarousal.  It is also possible to create joint or tissue damage (likely small, but still possible) with too-vigorous force.

Pat used to have her teaching assistants assess every participant in her training courses to ensure that therapists left knowing what to do and what not to do.  She couldn’t control what happened in anyone’s clinic or school.  If therapists or parents find that they aren’t getting the desired results from this treatment technique, I would encourage them to do some research and find older therapists that may have had direct contact with the inventor of this protocol, or at least a therapist that learned from someone that had the good fortune to learn directly from Pat Wilbarger.

Looking for more information about the Wilbarger Protocol?  Read Can You Use The Wilbarger Protocol With Kids That Have Ehlers-Danlos Syndrome? for some methods to adapt this brilliant technique for children with connective tissue disorders.

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Does Your Child Still Chew on Clothes or Toys?

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Babies love to munch on their toys.  They nibble at book bindings, chew the heck out of their loveys, and some little ones really love to chew their pacifiers.  As they grow, most children let go of this behavior.  Chewing and biting for sensory exploration and state modulation diminishes and a child’s behavior evolves into thinking, communicating, and smooth internal state regulation.

But some older kids slip their sleeve or shirt collar into their mouth whenever they can, and are left with a soggy mess by the end of the day.  They suck on their markers or the grocery store cart.  Their toys and pencils are ragged witnesses to the continuing use of oral stimulation, long past the first year or two of life.

Why do they do this?

Some kids are seeking to fill an oral cavity that is less stimulated due to low muscle tone, hypermobility and/or limited sensory discrimination.  Shoving a sleeve in there provides that sensory boost as muscles, skin and ligaments stretch.  Children that need more sensory input due to inactivity, boredom, physical limitations and illness use oral input as an always-available and independent option.  Other kids use biting and chewing to modulate their level of arousal (and open their eustachian tubes, BTW!).  While most OTs know about the modulation piece, the way biting and chewing impact hearing and even vestibular health isn’t so commonly considered.  Biting can stem nystagmus for some kids, and it can lessen dizziness or help a child move their eyes apart as they watch objects in the distance (divergence) for reading the board and for sports.  For kids that use biting well after the toddler biting phase should be over, evaluating any ocular (eye) or ENT issues can be helpful.

Exploring the level of stress in a child’s life outside the classroom or therapy clinic is another consideration.  Biting and chewing are calming proprioceptive inputs that a child can use when they are anxious or fearful, or just uncertain.  It may not be possible to impact the stress of divorce, moving to a new home, or adding a newborn to the family, but appreciating these situations as factors in behavior can improve how families, teachers and therapists respond.  Older children could be trying to modulate their level of arousal without causing trouble by running, jumping or yelling.  Chewing is less likely to be disruptive in a classroom setting.

What Can You Do Once a Chewing Habit is Established?

Once oral sensory seeking behavior takes hold, it isn’t easy to stop.  It can be very satisfying and accessible, particularly for young children.  Addressing the core cause or causes means taking things one step at a time.  Many children do well with a multi-sensory diet added to their daily activities.  More physical activity or more frequent activity breaks can help.  I find that more vestibular input in particular can be powerful.  Using whistles can be helpful when chosen well and supervised for safety and overall modulation.   Some children need to become more aware of their behaviors; older kids can use some of the “How Does Your Engine Run?” concepts to take responsibility for their behaviors and independently seek alternative sensory input.  Kids that learn mindfulness techniques can incorporate those into their program as well.

The use of chewing objects can help, but there are three concerns that have to be addressed:  hygiene, safety, and speech.  A child that sucks or chews on any object isn’t going to monitor its cleanliness, so make sure you use non-toxic soap that is carefully rinsed off.  A chewing necklace should never be worn while sleeping due to safety issues, nor can it be used when it could become snagged on branches or sports equipment.  And finally, having something in the mouth, whether it is a pacifier or a chewing toy, will minimize and alter speech if it isn’t removed for communication.  Never allow a child who is talking or learning to talk to devolve into head nods so they can keep chewing.

Looking for more information on sensory issues?  Read Sensory Sensitivity In Toddlers: Why Responding Differently to “Yucky!” Will Help Your Child and Weaning the Pacifier From An Older Child.

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Sensitive Child? Be Careful How You Deliver Praise

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Sensitive kids need encouragement as much as the next child, but they can have a paradoxical reaction when you praise them.  What do I mean?  You compliment your child by saying “GREAT job!  I knew you could do it!”, and they react by becoming angry or even arguing with you.  They may even try to destroy what they had done.  This can include being mean to a sibling or pet, or breaking something that they created.

Why?  Weren’t you supposed to support them?  All the parenting books recommend giving children accurate and immediate feedback.  You could have done everything as suggested:  you were warm, you were specific about their success, and you used words that match their age and developmental stage.  You even avoided the pitfall of praising results and instead you praised effort.  It backfired on you.

What went so wrong?

Simply put, you didn’t expect that they would think that any future performance could be seen as a failure, and this burden was more than they could bear, or the sensory input overwhelmed them.  Or both.  This reaction is more common than you would think, and happens in very young children, as young  as two!  Some very sensitive kids cannot handle the physical intensity of some methods of praise.  Your change in vocal volume and even vocal pitch may send them into physiologic alarm mode.  The longer you go on, the more upset they become.  And they don’t have a good answer when you ask why they are so upset.  They are just as eager for true appreciation as any other child, but they know that they feel bad, not good.  You weren’t intending to create pressure on them.  Kids can place it on themselves.  These are often the kids that need things to go the way they expected, or to go perfectly or it isn’t acceptable.  They are very invested in being seen in a positive light.

What can you do differently?

If you think that your child is reacting this way, dial down your response and observe how your child takes it in.  Using a lower voice and shortening your response can help.  Making a general statement rather than elaborating might be easier to hear.  “Nice work” can be more acceptable than “You did an AMAZING job; I cannot wait to show everyone what you did!”  Dr. Karp’s “gossiping” technique, whether it is gossiping to a toy or to a person in the general vicinity might be more acceptable.  Waiting a few minutes, or even waiting until the next day to deliver praise can be helpful.  It sounds great to follow the strategies listed in the parenting blogs and in magazines, but if you have a sensitive child, you have already learned that things sometimes have to be altered to fit your child’s needs.  This is just another example!

Another suggestion is to put more effort into modeling how to handle slip-ups.  Kids need to know that we make mistakes and don’t always succeed.  We look so powerful and accomplished to young children.  We know that we have our limits and faults, but kids don’t always see it that way.  Explicitly tell your child when you make a mistake, and talk about your feelings and how you make yourself feel OK with not being perfect.  This can go a long way to helping a sensitive child handle praise.

Looking for more information on helping sensitive kids?  Read What Helps Sensitive Kids Handle Haircuts? and Holidays Hints For Sensitive Kids.  Sensitivity is common in gifted kids Sensitivity and Gifted Children: The Mind That Floods With Feeling and kids with sensory processing disorder Sensory Sensitivity In Toddlers: Why Responding Differently to “Yucky!” Will Help Your Child.

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Is Your Kid With ADHD Also Gifted, or is Your Team Missing Their Giftedness?

david-clode-635942-unsplashAre you hearing that your child is a management problem at school, but is a joy at home?  Do you see them thrive when your older child’s friends include them in play?  Does your child sustain their attention and manage their behavior well when the class goes on field trips or has speakers come in, but dissolves into troubling behavior on a “regular” school schedule?  Your child may have a dual diagnosis of giftedness and ADHD, or have been misdiagnosed completely.

I know, I am not a psychologist.  But I am aware of the many kids I have treated that blossom when, instead of simplifying the environment or the activity, I expand it.  This goes against the standard treatment protocols for kids with sensory processing disorders and ADHD.  But it is exactly what gifted kids love and need.  Give a gifted kid more complex work, leave them alone to solve a challenging problem, or ask them to mine their passion more completely, and you often see better performance, not worse performance.  The kids with ADHD without giftedness often struggle more and need more help under a more complex environment.  The misdiagnosed gifted kids shine like little pennies when challenged.  Gifted kids will show ADHD behaviors in situations that restrict or frustrate their tendencies to dive deep into a subject (intensity ) and look terrific in a setting where they are stimulated and engaged.  Kids with ADHD might be happier out of school, but they struggle with the same issues of distractibility, disorganization and they show a lack of focus, not a deep absorption.

As an aside, many of the kids I treat that look like they have Asperger’s (or now high-functioning autism) are gifted, and their delays in speech or motor skills mask their gifted performance when they are between 1 and 5 years of age.  What gives them away as gifted instead of disordered?  They light up when someone wants to talk about their deep interests, and they would seek that interaction out.  Their interests may seem quirky, but they aren’t incredibly obtuse.  For example, a gifted child could be interested in ocean life, with a strong interest in squids.  If you like squids, they will talk your ear off and enjoy it tremendously if you do.  A child with Asperger’s will be interested in something so unique that they couldn’t find someone to share it with, like threshing machines, and they couldn’t care less if you share their interest.  They won’t want to convince you of the many useful things they do, they won’t want to discuss it.  Will they want to talk?  Sure, but talking to you isn’t the same as discussing it.  They may find your input annoying, in fact.

Grades, and even cognitive testing, sometimes aren’t enough to identify gifted kids.  Some of them aren’t going to try very hard.   Some will mess with the evaluator’s mind.  I have heard at least one parent report that their child deliberately gave the wrong answers to see what would happen.  This child is reading chapter books at 3.5 years old.  He really doesn’t understand that getting a low intelligence score is going to send him to special ed instead of advancing him to a higher grade or an enriched program.  Emotional maturity is one of the skills that are often not advanced in gifted kids.  To paraphrase Jack Nicholson’s character in the movie “A Few Good Men“, these kids want the truth (or the facts, or the experiences) but sometimes they can’t handle them.  Young gifted kids can fall apart when their imagination doesn’t match their execution.  Whether it is writing, building, drawing or another skill, they can display anxiety and anger when things don’t match their amazing thoughts.  This isn’t oppositional defiant disorder or an anxiety disorder, it is an asynchronous development problem.

I can’t ignore the strong bias against giftedness in our culture.  Sure, there are cultures that applaud accomplishments, especially intellectual accomplishment, but not when it is accompanied by impatience, a tendency to dominate the conversation, perfectionism and frustration with others and themselves.  Gifted people of all ages become aware that it could be easier to speak about being on the left side of the Bell curve than on the right side.  Whether you share your suspicions or your testing results is up to you, but know that you may get pushback from some unlikely sources, especially at school.

If your child is gifted, seek out support wherever you can find it, and learn how to discuss your child’s gifts with them.  There are online sites like SENG that can offer you some strategies and some resources.  You may want or need outside help to learn how to harness their overexcitabilities OT and Non-Disabled Gifted Children and handle their feelings, but a child that understands their gifts will not consider themselves impaired and will learn to accept their atypical nature with confidence.

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Universal Design For Parents of Special Needs Kids: It’s Important for You Too!

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Stunning, but how many potential safety problems can YOU spot?

I just finished the coursework for my CAPS certification (certified aging-in-place specialist)!  Amazing instructor and loads of valuable information about construction and renovation that only the National Association of Home Builders could impart.   And not just for aging-in-place; the concepts of accessibility make homes more visitable for family and friends, and more livable and adaptable for the future.   Now I have to decide how to add this knowledge to my practice to help families make their lives easier and better….might as well start blogging about it now!

Universal design is more visible in public places.  Hotels are installing features that make showers more accessible and banks are providing variable-height counters to fill out deposit slips.   But most of us don’t think that we need universal or accessible design in our own homes as non-disabled adults.  Wrong.

Universal design allows your great-grandmother more ease when she wants to meet your baby in your own home.  It helps your neighbor with multiple sclerosis come over and water your plants when you take the kids to Disney.  And it allows you to carry a kid, carry a bag and pull the dog into the house without dropping one of them.  Universal design also allows your husband, who tore his achilles tendon during a pickup basketball game, to get into the shower by himself while he decides if he can admit he’s not 25 anymore.

 But for parents of kids with special needs, the need is two-fold: universal design helps them do a demanding physical job, but it also allows their children more independence earlier. These parents are lifting and carrying heavier children than they might otherwise.  In and out of the car, the crib, the stroller and more.  There is a big difference between lifting a 20-pound toddler and a 47-pound preschool child wearing heavy AFOs.  Parents are hauling around equipment like therapeutic strollers, standers and medical equipment every day.  I have written a bit about positioning your child How To Get Your Special Needs Child To Sit Safely In The Tub and Kids With Low Muscle Tone: The Hidden Problems With Strollers  and Should You Install a Child-Sized Potty for Your Special Needs Child?, but now I will be addressing design beyond equipment.

Universal design’s principles of low physical effort and adequate size/space for approach and use will give enough room at a landing for the stroller, and the parent, and the dog.  It will make it possible for your child to open the door for himself and to reach the sink without being held up to the water.   Universal design’s principles of equitable and flexible use will allow children more access with less assistance as they build skills.  The principles of simple and intuitive use, tolerance for error and perceptible information reduces confusion and safety risk to children.  A good example would be faucets with both temperature control valves to prevent scalding and handles marked with red/blue codes instead of H/C.  No reading interpretation is required once your child knows “red is hot” or “red is stop”.  That happens easier and earlier than reading skills.

I don’t hear a lot of parents complain about the wear-and-tear on their bodies as they care for their children, but I see it.  Parents: don’t think that because you don’t say anything that your occupational therapist isn’t aware that your back is giving out.  That is a shame, because OTs could be helpful to parents in this situation.  Not in telling them to hire help, but in teaching them how to move with more ease and how to select and use equipment based on universal design principles to make life better for everyone.  Read How An Aging-In-Place Specialist Can Help You Design an Accessible Home for Your Child for more information on this subject.

Maybe after this post, I will be hearing from all those parents who go to bed tired and wondering how they will be able to keep up with the physical demands of special needs parenting over the years to come.

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Teach Your Child To Catch and Throw a Gertie Ball

 

71rwmnHGrHL._SL1500_These balls aren’t new, but they don’t get the recognition that they should.  The ability to catch a ball is a developmental milestone.  For kids with low muscle tone, sensory processing disorder (SPD) or ASD, it can be a difficult goal to achieve.  The Gertie ball is often the easiest for them to handle.  Here’s why:

  1. It is lightweight.  An inflatable ball is often easier to lift and catch.  The heavier plastic balls can be too heavy and create surprisingly substantial fatigue after a few tries.
  2. Gertie balls are textured.  Some have the original leathery touch, and some have raised bumps.  Nothing irritating, but all varieties provided helpful tactile input that supports grasp.  It is much easier to hold onto a ball that isn’t super-smooth.
  3. It can be under-inflated, making it slower to roll to and away from a young child.  Balls that roll away too fast are frustrating to children with slow motor or visual processing.  Balls that roll to quickly toward a child don’t give kids enough time to coordinate visual and motor responses.
  4. They have less impact when accidentally hitting a child or an object.  Kids get scared when a hard ball hits them.  And special needs kids often throw off the mark, making it more likely to hit something or someone else.  Keep things safer with a Gertie ball.

The biggest downside for Gertie balls is that they have a stem as a stopper, and curious older kids can remove it.  If you think that your child will be able to remove the stem, creating a choking hazard, only allow supervised playtime.

Looking for more information about sports and gross motor play?  Check out Picking The Best Trikes, Scooters, Etc. For Kids With Low Tone and Hypermobility and Should Your Hypermobile Child Play Sports?.  You could also take a look at What’s Really Missing When Kids Don’t Cross Midline?.

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