Monthly Archives: February 2019

Are Your Other Children Resentful of Your Special Needs Child?

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This is something that is hardly ever spoken of, but it happens in many, if not most families.  The good news is that it is normal, it doesn’t predict future behavior, and you can address it without sending everyone to a psychiatrist.

The time and energy demands of a special needs child aren’t always in proportion to a child’s delays.  Surgeries or therapy intensives can pull you away for weeks.  The little things, like therapy always being at the same time as someone’s soccer games, are actually harder for siblings over time.  Even sharing lap time can be tough for a toddler who was, until recently, able to climb into your arms anytime.

Remember, toddlers naturally see the world as theirs, and assume that they and their actions are a part of everything that happens to them, good or bad.  They will not be able to fully comprehend why their sibling may take a long time to be able to play with them.  Older children may perceive that it isn’t “nice” to complain about their perceived lack of parental attention, but they feel it.

What can you do?  I believe that quality time is the answer, but only part of the answer.  When you are planning, engaging in, and reminiscing about the quality time that you spent with your child, regardless of whether they are 18 months old or 18 years old, you approach it as if you were in a long-distance love affair.

If you were dating someone across the country, you would talk about the upcoming rendezvous with excitement, you would savor every short minute of it, and you would reconnect afterward, reminding your beloved of the wonderful time you had, and what you hope will happen the next time.

The twist that I learned from Dr. Harvey Karp’s wonderful book The Happiest Toddler on the Block is to put into words exactly how you FEEL about your child and the terrific plans (or event that just passed).  Saying “I am SO, SO, looking forward to reading our special book tonight!” with a smile can mean that a child will put up with your absence at that soccer game.  Reminding a child “Remember when we went out for ice cream alone, nobody else?  That was fun!” helps them handle the fact that they are bathing with the nanny or big sister while you bathe and dress your special needs child.  Even responding with sympathy:”I know…I am sad too that I can’t go with you to your playdate because I have to take Jonah to PT” and using a tone of voice, facial expression and body language that messages real regret; this will help your child handle their feelings without becoming aggressive or shamed for their feelings.

I think this works extremely well with your special needs child’s siblings.  Kids need to hear how happy you are to be with them, that you look forward and backward with pleasure.  They know on some level, even as toddlers, that they don’t get all your attention.  But they really want and need to hear that you love being with them as much as they love being with you.  It could be an ice cream run just with them.  A game of catch just with them.  Reading a new book together.  Almost anything will work, as long as you elaborate on your feelings as well as talking about the event itself.  Mentioning your excitement or good memories during a calm time works better than wedging the comments in between correcting actions and giving consequences.  A casual mention of your future plans can smooth out a lot of feathers!

Looking for more information on parenting when you have a special needs child?  Read How An Aging-In-Place Specialist Can Help You Design an Accessible Home for Your Child and Universal Design For Parents of Special Needs Kids: It’s Important for You Too! and also The Cube Chair: Your Special Needs Toddler’s New Favorite Seat!

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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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Should You Install a Child-Sized Potty for Your Special Needs Child?

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Affordable accessibility and no institutional appearance!

I know that some of you don’t even realize that such a thing exists:  a toilet sized for preschoolers and kindergarteners!  Well, you won’t find it in Lowe’s or Home Depot on the showroom floor, but you can buy them online, and it is an option to consider.  Here are the reasons you might put one in your child’s main bathroom:

  1. You have the space already.  Some homes are large enough to allow each bedroom to have its own bathroom.   If you have the option, it might be worth it during renovations.  It shouldn’t add considerably to the overall cost, and it should not be that difficult to swap out when your child grows.  If you have a bathroom near the playroom, that might be another good location for this potty.  Most older kids and adults can make it to another half-bath on that floor, but it might be perfect for your younger child and his friends!
  2. Your child is terrified of the standard-height potty.  Some kids are unstable, some are afraid of heights, and some have such poor proprioception and/or visual skills that they really, really need their feet on the ground, not on a footstool.
  3. Your child was a preemie, and their growth pattern indicates that they will fit on this toilet comfortably for a while.  Some preemies catch up, and some stay on the petite size.  Those children will be able to use a preschool-right potty into early elementary school.  Even if your preemie is average in size, they may have issues such as vision or sensory sensitivity that will make this potty a great idea for a shorter time.

I am just beginning to build my materials to do in-home consultations as a CAPS, but I think that an underserved population are parents of special needs kids that would benefit from universal design and adaptive design.  This toilet would come under the category of adaptive design, and it is an easily affordable solution for some children.  Having more comfort on the toilet speeds up training for many kids.  It also decreases the aggravation of training and monitoring safety for parents.  I am very committed to helping the entire family have an easier time of things like toilet training.

Think about what your family’s needs and capabilities are, and if you are planning to remodel or build a new home, consider finding a CAPS professional in your area to help you make your home as welcoming for your special needs child as possible!  For more information, read How An Aging-In-Place Specialist Can Help You Design an Accessible Home for Your Child.

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How Being Toilet Trained Changes Your Child’s Life

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Think your child doesn’t care that he is wearing pull-ups in pre-K?  Well, he might not…yet.  After all, he doesn’t know another life.  He has been using a diaper (because we know that pull-ups aren’t anything other than a diaper, right?) for elimination since his first day of life.  Wait until he is trained, and you may see the difference that being trained will make for him.

Children who have accomplished toilet training have made a significant step forward in independence.  They are the masters of their domain, to borrow from Seinfeld.  Not needing help for something so personal, they have a different attitude about body ownership and privacy.  This is important and personally meaningful.  We want children to have pride in their bodies and a sense that they own them.  Even though you would never harm your child, when you are involved in their “business”, you are taking some of that pure ownership away.  The sooner they have a sense that they can manage alone, or with only a bit of help for the hard bits, they build their sense of self.

When kids master a major life skill, they often are more willing to take on other skills such as writing and dressing.  They are interested in holding their spoon and fork the “grown-up” way.  They have entered the world of the older child, in their minds.  And adults aren’t immune.  We see potty trained kids differently too.  When they are able to take care of themselves in the bathroom, we start raising our expectations for them as well, and treat them as older children, not babies.  And they react to our change in perception as well.  Toilet training can lift everyone up!

The practical realities of life mean that being trained allows them to go to activities and even schools that they wouldn’t be able to attend.  Pools and camps have rules, and being fully engaged with their community means being out there and participating as much as possible.

A mom told me yesterday that her 5 year-old told her “I am so happy that I can use the potty!”  It took him a long time to get all the skills together to be fully trained, and he is off on a family cruise next week.  This will be the first time he can attend cruise camp with his older brother.  He has arrived!

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The Not-So-Secret Solution for Your Child With Motor And Sensory Issues: Dycem

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Many different ways to use Dycem!

In adult rehab, occupational therapists are regularly providing patients who have incoordination, muscle weakness or joint instability with both skill-building activities and adaptive equipment such as Dycem.  In pediatrics, you see a predominance of skills training.  Adaptive equipment shows up primarily for the most globally and pervasively disabled children.  I think that should change. Why?  Because frustration is an impediment to learning, and adaptive equipment can be like training wheels; you can take them off as skills develop.  When kids aren’t constantly frustrated, they are excited to try harder and feel supported by adults, not aggravated.

 

What Dycem Can Do For Your Child

Dycem isn’t a new product, but you hardly ever see it suggested to kids with mild to moderate motor incoordination, low tone, sensory processing disorders, hypermobility, and dyspraxia.  We let these kids struggle as their cereal bowl spills and their crayons roll away from them.  Dycem matting is a great tool for these kids.  It is grippy on both sides, but it is easy to clean.  Place a terrific bowl or plate on it OXO for Kids: Great Tableware For Older Kids With Sensory and Motor Issues, and it won’t tip over with gentle pressure, and not even if the surface has a slight incline.  It lasts a long time, and can be cut into any shape needed for a booster seat tray or under the base of a toy like a dollhouse or a toy garage.  Placing a piece of Dycem under your child while they are sitting on a tripp trap chair or a cube chair A Simple Strategy To Improve Your Child’s Posture In A Stokke Tripp Trapp or Special Tomato ChairThe Cube Chair: Your Special Needs Toddler’s New Favorite Seat! will help them keep their pelvis stable while they eat and play.  The bright color contrasts with most objects, supporting kids with visual deficits and poor visual perceptual skills.  It catches their eye and their attention.  As you can see, Dycem has a lot to offer children and parents.

How To Use Dycem To Build Motor Skills

Will it prevent all spills or falls?  No.  But it will decrease the constant failures that cause children to give up and request your help, or cause them to refuse to continue trying.  Children are creating their self-image earlier than you realize, so helping them see themselves as competent is essential.  Will it teach kids not to use their non-dominant hand to stabilize objects?  Not if an adult uses it correctly.  Introducing Dycem at the appropriate stage in motor development and varying when and where it is used is the key.  Children need lots of different types of situations in order to develop bilateral control, and as long as they are given a wide variety of opportunities, offering them adaptive equipment during key activities isn’t going to slow them down.  It will show them that we are supporting them on their journey.  When kids are new to an activity or a skill and need repeated successes to keep trying, Dycem can help them persevere.  When children are moving to the next level of skill and see that they are struggling more, Dycem can support them until they master this new level.

Should you buy the pre-cut mats or the roll of Dycem?  It depends on your needs.  Be aware that Dycem doesn’t stay tacky forever, so the cheaper strategy is the roll.

The Cheap Hack:  Silicone Mats

I will often recommend the use of silicone baking mats instead of dycem.  These inexpensive mats often do the job at a lower cost, and can be easily replaced if lost at daycare or school.  Dycem is a specialty item that can be purchased online but not in most stores.  Silicone mats aren’t as grippy, but they are easily washed and dried.  Some families are averse to anything that looks like adaptive equipment, so I may introduce these mats first to build a parent’s confidence in my recommendations.

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How An Aging-In-Place Specialist Can Help You Design an Accessible Home for Your Child

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I finally did it; I got my CAPS certification!  I know, you are asking yourself “What does a pediatric occupational therapist want with an Aging-In-Place certificate?”  Well, as it turns out, many of the barriers and home access problems that require redesign or better design for older adults are also issues with children dealing with developmental issues.  And they deserve the most functional home they can possibly have!

I treat children in their homes, so I see a wide variety of situations.  Here are a few of the most common problems I encounter:

  1. Entries and stairs that don’t have railings at a helpful height for children with motor control issues.  If your child is likely to struggle with stairs for a while, adding a lower railing on both sides of the stairs is very, very helpful.  They can be removed later on, but since you cannot alter the risers (the height of the steps) without major construction, do what you can to give your child a secure handhold.
  2. Slippery floors.  Tile can be treated to make it just a bit tackier, but not feel like gravel.  Online sellers will offer this, and you can apply it yourself if you are skilled, or hire a tile company to coat your tile for you.
  3. Right-height work areas.  Young children with motor issues often need the play table to be the correct height for them.  Their reach and grasp, as well as their balance, improves when they are sitting well.  But they grow.  What can you do?  I suggest buying an inexpensive wooden table and cutting the legs until they are the right height.  When your child outgrows it, buy a new table and trim the legs as needed.   You can add brackets on the leg joints to add stability to an inexpensive table.

If you are in the market for a new home, a CAPS professional can help you think about accessibility as a factor when shopping for real estate.  Although the easiest way to achieve universal access is to build a new home, there are homes that are easier to adapt, and home that are nearly impossible.  Being able to see what a house offers is more than location, location, location.

Know what the implications of your child’s diagnosis means for accessibility and function.  Children with cystic fibrosis, cerebral palsy, or muscular dystrophy will likely do better in a ranch house or a house with an elevator.  Don’t think you have the room for an elevator?  You might, you might not, or you might install a lift instead.  Your CAPS consultant can help you look at all the options.  Improving bathing, grooming and safe play spaces is on the list of things that a CAPS professional can address.  Read Should You Install a Child-Sized Potty for Your Special Needs Child? to find out how this simple and affordable swap could make life easier for both of you.

I will be exploring all of my options for consulting as a CAPS, but my training as an OTR and my background in adult and pediatric home care means that I will be as excited to help young families as to help older people.  Who knows: I may decide to offer a multi-generational package of services!  Stay tuned for more information and suggestions for accessibility!

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