Monthly Archives: July 2017

Parents With Disabilities Deserve Real Support, Not Pity or Praise

 

 

dawid-sobolewski-285650Parenting is hard.  Everyone that has children or works with them knows that this is true.  Parenting when you have a disability is harder by far.  Like parenting… squared.  But instead of real support, many disabled people who become parents or are thinking of becoming parents face a lot of reactions from the non-disabled.  It usually arrives in one of two packages.  First, the more positive but less helpful responses.

People see disabled parents diapering a child with one hand or with both feet, or navigating the playground with a cane and remark on how amazing it all is.  They are either pitied for their struggle or praised for their bravery.  If you have a disability, what you could really use is to be seen as an equal.  And maybe the chance to share how to get your child to wait for more than a nanosecond for juice.  Real support and real camaraderie, the kind that other parents give and get on the playground.

Of course, there is another packaged form. These are those difficult responses that can and do happen.  Parents with disabilities may be treated like criminals (how dare you subject a child to your problems?) or idiots (“You will never be able to handle the challenges”).  I suppose pity and random praise could be better than these responses, but how about another reaction?  Support.

Sadly, one of the groups that should be actively supporting disabled parents often drops the ball.  Parenting issues aren’t always on the radar of doctors and therapists.  In fact, the act that gets you into the business of parenting may not even be fully acknowledged by professionals.  Yes, that one.  Accepting that disabled people are sexual and often (or mostly) capable of having children is so rarely mentioned in training and treatment protocols that it is a true crime.  When people with disabilities do have children, receiving equitable medical care and respectful treatment as parents isn’t a given.  Don’t believe me?  Think about how many accessible GYN tables you have ever seen, or how people with disabilities might struggle to attend the soccer game to cheer their child on.  Simple things that most of us take for granted.

I think that occupational therapists have much to offer parents with disabilities.  We are known for being the MacGyvers of rehab.  We love to solve real-life problems and use our wide range of skills to help clients achieve their goals.  Supporting people with disabilities to be the best parents they can be could be as simple as teaching a parent an easier way to hold or carry their child.  OTs are rarely consulted for this, but helping clients identify the positions, adaptations and adjustments needed to make that baby in the first place is actually in the OT skill set.  All discussed with respect and sensitivity, not pity.

OT support could be as complicated as redesigning a kitchen for safe and easy meal preparation.  Feeding your child is a wonderful way to participate as a parent.  Or as subtle as identifying how visual and auditory stimuli in the home set off sensory-based anxiety and agitation in a parent.  Being as calm as you can be is important when you are raising children.  A few sessions with a good occupational therapist can result in less stress, less pain, more skill and more confidence for all involved.

Occupational therapy isn’t always thought of as an essential service for adults with disabilities after the initial injury (think spinal cord injury rehab) or for people with more common issues such as fibromyalgia or back pain.  Perhaps that could change.  Parenting is hard.  It is harder when you don’t get the support you need.

 

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Lining Up Toys Doesn’t Mean Your Toddler Has Autism

After head-banging, this is the other behavior that seems to terrify parents of young children.  Seeing a row of vehicles on the carpet makes parents run to Google in fear.  Well, I want all of you to take a deep breath and then exhale.  The truth is that there are other behaviors that are more indicative of autism.  Here is what I think that row of tiny toys often means:

Very young children have a natural interest in order and understanding spatial relationships.  Kids like routine and familiarity way more than most adults.  Some children are just experimenting with how lines are formed or seeing how long a row of cars they can create.  Some will even match colors or sizes.  And it is OK if Lightening McQueen has to be the first in the line.  Sometimes routines have purpose.  When your child tells you that you read Goodnight Moon wrong (you just paraphrased to end it early), he is really saying that he likes the familiarity and the orderliness of hearing those words said in that order.  Boring to you, comforting to him.  Experts in early literacy will tell you that his fondness for hearing the same story over and over is actually a developmental milestone in phonemic awareness, the cornerstone of language mastery.

Controlling their environment and creating patterns is another reason to line up those cars.  Young children do not create complex play schemes about races or adventures.  Lining them up is developmentally correct play for very young children, and it can easily expand with a little demonstration and engagement with you.  Build a garage from Megablox and see if your child will enjoy driving each one into the garage to “sleep at night”.  Don’t mention that in real life we all use our garages as storage units!  Typically-developing children may even repeat your game later the same day, having learned a new way to play with their toys.

When does lining up toys become troublesome?  When it is the ONLY way that your child interacts with those toys, or with any toys. And when you try to expand their play as above, they lose their lunch because it is all about rigid routines, not object exploration.  That line of cars is part of their environmental adaptation for security and stability; it’s not actually play at all.  There isn’t a sense of playfulness about changing things around.

A lack of developmentally appropriate play skills is a concern to a child development specialist, but it still doesn’t translate into autism.  Here are a few behaviors in 1-2 year-olds that concern me much more:

  • little or no eye contact when requesting something from you.  They look at the object or the container, not you.
  • no response when her name is called, or looking toward people when the name of family members is mentioned.
  • using an adult’s hand as a “tool” to obtain objects rather than gesturing, pointing or making eye contact to engage an adult for assistance.

Always discuss your concerns with your pediatrician, and consider an evaluation through your local Early Intervention service if you continue to see behaviors that keep you up at night.  They can help you!

Prevent Skin Injuries In Kids With Connective Tissue Disorders: Simple Moves To Make Today

Children with EDS and other connective tissue disorders such as joint hyper mobility disorder often have sensitive skin.  Knowing the best ways to care for their skin can prevent a lot of discomfort and even injury.  These kids often develop scars more easily, and injured skin is more vulnerable in general to another injury down the road.  As an OT and massage therapist, I am always mindful of skin issues, but I don’t see a lot of helpful suggestions for parents online, or even useful comments from physicians.  I want to change that today.

  1. Use lotions and sunscreens.  They act as barriers to skin irritation, as long as the ingredients are well-tolerated.  Thicker creams and ointments stay on longer.  Reapplication is key.  It is not “one-and-done” for children with connective tissue disorders.  Some children need more natural ingredients, but you  may find sensitivities to plant-based ingredients too.  Natural substances can be irritants as well.  After all, some plants secrete substances to deter being eaten or attacked!
  2. Preventing scrapes and bruises is always a good idea, but kids will be kids.  Expect that your child will fall and scrape a knee or an elbow.  Have a plan and a tool kit.  I have found that arnica cream works for bruises and bumps, even though it’s effectiveness hasn’t been scientifically proven to everyone.  Bandages should not be wrapped fully around fingers, and a larger bandage that has some stretch will spread the force of the adhesive over a larger area, reducing the pressure.  DO NOT stretch their skin while putting on a bandage.  And remove bandages carefully.  You may even want to use lotion or oil to loosen the adhesive, then wash the area gently to remove any slippery mess.
  3. If your child reacts to an ingredient in a new cream or lotion but you aren’t sure which one, don’t toss the bottle right away.  You may find that your child reacts to the next lotion in the same manner, and you need to compare ingredient lists to help identify the problem.
  4. Hydrate, hydrate, hydrate.  Skin needs water to be healthy, and even more water to heal.  Buy a fun sport bottle, healthy drinks that your child likes, and offer them frequently.
  5. Clothing choice matters.  Think about the effect of tight belts, waistbands, even wristbands on skin. Anything that pulls on skin should be thought out carefully.  This includes shoe straps and buckles.   Scratchy clothing isn’t comfortable, but it can be directly irritating on skin.  That irritation plus pulling on the skin (shearing) sets a child up for injury.
  6. Teach gentle bathing and drying habits.  Patting, not rubbing the skin, and the use of baby washcloths can create less irritation on skin.  Good-bye to loofahs and exfoliation lotions, even if they look like fun. Older girls like to explore and experiment, but these aren’t great choices for them.  Children that know how to care for their skin issues will grow up being confident, not fearful.  Give your child that gift today!

Looking for more information on caring for your child with connective tissue disorders? Check out Hypermobile Child? Simple Dental Moves That Make a Real Difference in Your Child’s Health and Teach Kids With EDS and Low Tone: Don’t Hold It In!

Does your child have toileting issues related to hypermobility?  Read about my book that can help you make progress todayThe Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

Hypermobile Child? Simple Dental Moves That Make a Real Difference in Your Child’s Health

As the OT on a treatment team, I am the ADL (Activities of Daily Living) go-to person.   Why then, do so few parents ask me what ideas I have about ADLs, especially dental care?  Probably because OT as a profession has developed this reputation as either focused on handwriting or sensory processing.  Maximizing overall health and building skills by improving ADLs is often pushed to the side.  Not today.

People with connective tissue disorders have a greater chance of cavities and more serious dental problems.   Knowing what to do for your child and why it is important helps parents make changes in behavior with confidence and clarity.

Here are my suggestions to support a child that has been diagnosed or is suspected of having Ehlers-Danlos hypermobility or any connective tissue disorder:

  1. Teach good dental hygiene habits early.  Why?  Habits, especially early habits, seem to be harder to dislodge as we age.  Good self-care habits can and should last a lifetime.  Automatically brushing and flossing gently twice a day is cheap and easy.  Make it routine, not optional.  I know how this can become a fight for young children.  This is one of those things that is worth standing your ground on and making it fun (or at least easy) for children to do.  Brush together, use brushes and pastes with their favorite characters, pair it with something good like music or right before bedtime stories, but don’t think that dental care isn’t important.
  2. Research on people with typical connective tissue suggests dental care reduces whole-body inflammation.  Inflammation seems to be a huge issue for people with connective tissue problems, and no one needs increased inflammation to add to the challenges they have already.  Enough said.
  3. Tools matter.  Use the softest toothbrushes you can find, and the least abrasive toothpaste that does the job.  Tooth enamel is also made from the same stuff and skin and bone, and so are gums.  Treat them well.  Water-powered picks and battery-operated brushes may be too rough, so if you want to try them, observe the results and be prepared to back off it becomes clear that your child’s tissues can’t handle the stress.  Toothpaste that is appealing will be welcomed.  Taste and even the graphics/characters on the tube could make the difference.  My favorite strategy is to give your child a choice of two.  Not a choice to brush or not.
  4. Think carefully about acidic foods.  Lemonades, orange juice, energy drinks, and those citrus-flavored gummies all deposit acids on teeth that are also mixed with natural or added sugars.  Those sugars become sticky on teeth, giving them more time to irritate gums and soften enamel.  Easy hack?  Drink citrus/acidic drinks with a straw.  Goes to the back of the mouth and down the hatch.  At the very least, drink water after eating or drinking acidic foods to rinse things out.
  5. Baby teeth count.   Because your young child hasn’t lost even one baby tooth, you may think this doesn’t apply to you.  Those permanent teeth are in there, in bud form.  Children can develop cavities in baby teeth as well as permanent teeth.  Gum irritation is no different for young children, and they are less likely to be able to tell you what they are feeling.  Sometimes the only sign of a cavity in a young child is a change in eating habits.  This can be interpreted as pickiness instead of a dental problem.
  6. Consider sealants and fluoride   I know…some people are nervous about the composition of sealants and even fluoride, which has been in the public water system here in the US for a long time.  I would never criticize a parent who opted out of either.  It is a personal decision.  But be aware that they don’t increase tissue irritation, and they protect tender enamel, tooth roots and the surrounding gums.  At least have an open discussion with your pediatric dentist about the pros and cons.  I am mentioning sealants here specifically because some parents aren’t aware that this treatment option can reduce cavity formation and gum deterioration.

Looking for more information about ADLs and hypermobility?  Take a look at Easy Ways to Prevent Skin Injuries and Irritations for Kids With Connective Tissue Disorders and Teach Spoon Grip By Making It Fun And Sharing a Laugh With Your Child and Low Muscle Tone and Dressing: Easy Solutions to Teach Independence.

Is is Sensory Or Is It Behavior? Before 3, The Answer Is Usually “Yes!”

If I had a dollar for every parent that asked me if head banging when frustrated means their child has a sensory processing disorder...well, I would be writing this post from a suite in Tahiti.  Modulation of arousal is the most common sensory processing concern for the parents that I see as a pediatric occupational therapist.  Their children struggle to transition, don’t handle change well, and can’t shift gears easily.  But hold on.  A lot of this behavior in children  under 3 is developmental in nature.  Not all, but a lot.  Parsing it out and addressing it takes a paradigm shift.  Not every annoying or difficult behavior is atypical for age and temperament.

Everyone knows that you can’t expect your infant to self-regulate.  Nobody tells their baby “Just wait a little; why can’t you be like your brother and sit quietly for a minute?”  But why do adults assume that once a child can speak and walk a bit that they can handle frustration, wait patiently, and calm down quickly?

I know parents WANT that to be the case.  Toddlers are a handful on a good day.  Adorable silliness can melt your heart, but getting smacked by an angry child that was just given a consequence for trying to put your cell phone in the toilet to see if it would float?  Nah, that isn’t going to put a smile on your face.  Parents tell me “If they could only understand that when I say “wait”, I mean that you will get what you want, just not immediately.”  But no.  The toddler brain grows very slowly, and even the super-bright children who read at 3 cannot make their emotional brain grow any faster.  Sorry.  Really.   This brain thing means years of developing communication and regulation skills.

Here is the good news:  Even young children with clear sensory-based behaviors do better when your responses to their behaviors help them self-calm.  The recipe is simple to describe.  You give limits based on age, use familiar routines, teach emotional language and responses by modeling, and communicate effectively.  The Happiest Toddler strategies have transformed my work because children feel listened to but I don’t give in to toddler terrorists.  Everybody wins.

Here is the bad news:  You have to change your behavior in order to help them.  And you have to do it consistently and with loving acceptance of their limitations.  “Behavior” isn’t just their problem.  It is both of yours.  Take a look at my posts on Happiest Toddler techniques that really work for the little ones, and see if your suspicions of a sensory processing disorder wane or even evaporate as you and your child learn some valuable communication and self-calming skills.  The posts that can alter things today might be Nip Toddler Biting in the BudToddlers Too Young For Time Out Can Get Simple Consequences and Kind Ignoring, and How To Get Your Toddler To Wait For Anything (Hint: They hear “Wait” as “No”)

Good luck, and let me know what works for you!

 

Can Hypermobility Cause Speech Problems?

 

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As a pediatric OT, many of my clients have speech and feeding problems that are attributed to low muscle tone.  Very often, that is where assessment ends.  Perhaps it shouldn’t.  Joint hypermobility can create issues such as dysarthria, disfluency and poor voice control.  It isn’t only about muscles and muscle coordination.  Being able to identify all the causes of speech delays and difficulties means better treatment and better results.

I have had the privilege to know a handful of master speech pathologists whose manual evaluation skills are amazing.  These clinicians are capable of identifying joint laxity and poor tissue integrity (which contribute to injury, weakness and instability) as well as identifying low muscle tone, sensory processing issues and dyspraxia.  They can assess whole-body stability and control instead of ending their assessment at the neck.

It is more difficult to clearly differentiate low muscle tone from hypermobile joints in young children.  Assessing the youngest clients that cannot be interviewed and do not follow instructions carefully (or at all!)  is a challenge.  Many times we are forced to rely on observation and history as much as we use responses from direct interaction with a child.  In truth, laxity and low tone often co-exist.  Lax joints create overstretched or poorly aligned muscles that don’t contract effectively.  Low muscle tone doesn’t support joints effectively to achieve and maintain stability, creating a risk for overstretching ligaments and injuring both tendons and joint capsules.  A vicious cycle ensues, creating more weakness, instability and more difficulties with motor control.

Some children that are diagnosed with flaccid dysarthria, poor suck/swallow/breathe synchrony, phonological issues and poor respiratory control may be diagnosed later in life (sometimes decades later) as having Ehlers-Danlos Syndrome or generalized benign joint hypermobility syndrome.   They often drop the final sounds in a word, or their voice fades away at the end of a sentence when they are younger. These kids might avoid reading or speaking front of the class when older.  This isn’t social anxiety or an attitude problem.  They are struggling to achieve and maintain the carefully graded control needed for these speech skills.

You may notice a breathy-ness to their voice that makes them sound more like their grandparents than their peers.  Children that avoid running in sports like soccer or hockey aren’t always unable to continue because they are globally fatigued or in pain.    Being unable to stabilize their trunk results in inefficient muscular recruitment and limited grading of breath.  Ask any runner or singer and they will tell you what that means: game over.

If your child is struggling with these issues and isn’t receiving speech therapy, now may be the time to explore it.  You and your child may be relieved to learn that there is effective therapy out there!

Looking for more information on hypermobility?  Dental problems and skin issues are two common concerns with children that have Ehlers Danlos syndromes and other connective tissue diagnoses.  Take a look at Prevent Skin Injuries In Kids With Connective Tissue Disorders: Simple Moves To Make Today and Hypermobile Child? Simple Dental Moves That Make a Real Difference in Your Child’s Health for more strategies that solve problems or even prevent them!

 

 

Problems With Handwriting? You Need The Best Eraser

 

 

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A good eraser can make a frustrated child more willing to fix writing errors.  A bad eraser confirms their failure as a writer.

Occupational therapists in some schools hand out HWT pencils and a variety of pencil grips like candy, but many forget about how important it is for kids to erase mistakes successfully in order for their work to be truly legible.  The Pentel Hi-Polymer eraser is the one that gets the job done.

I will confess that I did not discover this eraser on my own.  A smart parent turned me onto this amazing school tool, and I am over the moon about how much it helps children complete their writing assignments.   It would be almost criminal to let kids go back to school this fall with those nasty pink erasers that leave more of a mess than they remove!

Here is an example of how well this eraser works.  I used my fave mechanical pencil for younger children, the one I blogged about in Great Mechanical Pencils Can Improve Your Child’s Handwriting Skills , and wrote a few numbers in the darkly shaded boxes of a Handwriting Without Tears sheet.  Notice that the shading wasn’t removed along with the pencil marks:

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Numbers 5 and 6 have been erased so well that tracing-over the original mistake is impossible!

Here are a few reasons to add this eraser to your back-to-school list:

  • While large enough for small hands to use, it is not so big that it is difficult for children to control.  Think erasing isn’t a real skill?  Take a look at Teach Your Kindergartener How To Erase Like a Big Kid
  • It is latex-free, a necessity for children with latex sensitivity.
  • There are fewer eraser “crumbs” created during use, so less mess (for parents) to clean up, and less visual and tactile distractions for kids with ADHD, SPD and ASD.
  • This eraser doesn’t require substantial pressure to remove marks.   Great for kids with Ehlers-Danlos, JRA, and all the other conditions where strength and endurance are concerns for handwriting.
  • Because of it’s softness and effectiveness, it rarely tears paper, even the thin paper commonly used for school worksheets and workbooks.

Pentel Hi-Polymer erasers are very affordable, and commonly come in packs of three. This is helpful when you know in your heart that the first two will be lost before the week is over, never to be seen again.  When your child realizes that this eraser helps them finish their homework a bit faster (you might want to mention this if they don’t notice it right away), they will work harder to hold onto that last one!