Monthly Archives: November 2019

Are You a Trauma Survivor AND the Parent of a Special Needs Child?

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First, let me say that trauma survivors can be among the most loving and active parents I work with as a pediatric occupational therapist.

How do I know they are survivors?  Some parents share their histories openly, and some aren’t aware of what their actions and words reveal.  Occupational therapists that have worked in psychiatry are particularly attuned to patterns of behavior that suggest a history of trauma.  And after therapy has gone on for a while and the therapeutic relationship blossoms, some parents wish to share more of their personal story with me.

Trauma survivors that had complicated pregnancies Can The Parents of Pediatric Clients Have PTSD? , have children with genetic disorders, or deliver children who develop developmental delays, come in all ages and social/support situations.  Some currently have a psychotherapist for support, and some have done a tremendous amount of therapy in the past.  Others may not even recognize that what they experienced in the past was traumatic, or that there is specialized help for trauma-related issues.

What they all have in common is the (mostly) sudden stressor of having a child with special needs, the seemingly endless daily demands of care, and the constant seeking/managing of medical, educational and therapy services.  Survivors of trauma may not realize that they aren’t alone with their feelings of distress, or that their child’s therapists can help them cope.

I wrote a post on how therapists can help a child’s siblings, How an Occupational Therapist Can Help The Siblings of Special Needs Children , but parents with trauma backgrounds can ask for and receive support from their child’s therapists as well:

The simplest way therapists can help you is to validate the real demands of care and give you some perspective on what other family’s lives are really like.  We are aware that we are asking parents to do home programs and obtain equipment and toys that facilitate development.  We also know that life is messy, and it is OK if you admit that you find it hard just getting through the day.  You can ask us if other parents go through the same things that you do, and you will find out that you might be doing more than we expect.

If you are having a rough period, ask us to give you just the ONE thing that would be the easiest to incorporate into your day that would help your child this week.  We won’t be offended.  You might be surprised to find that we know what those days/weeks/months feel like too.

Some parents who are trauma survivors are less likely to ask for a review or clarification of a technique or treatment when therapists give them instructions.  This can come from fearing criticism, having been taught not to question authorities, feeling judged by therapists they perceive as punitive authorities, and even being dissociative during their child’s therapy session.  “Spacing out”, forgetting, being confused, etc. are all possible dissociative responses.  Parents who are reliving a NICU nightmare or who are triggered and recall their own medical trauma or physical abuse may have a lot of difficulty learning to do treatments on their child that involve any level of restraint or distress.  This can be managed, but only if it is addressed.

Your child’s therapists have many different ways of holding and positioning a child, and different ways of administering a treatment technique.  You can express your discomfort in general terms or you can tell us that this is a trigger for you, and you can ask us to make things easier for you without having to tell your own story.  Asking for a few reviews of home programs is seen by most therapists as indicating interest in what we do.  We aren’t offended; we are flattered.

Some survivors need to be out of the treatment room, and that is also OK.  We like to share your child’s progress, and we welcome you into the session, but we understand if you need to have some distance.  Scheduling treatment at your child’s school or in a therapy center, rather than at home, may be easier for you.  Your child will still receive excellent treatment.

Trauma survivors can be extremely distressed when their child cries in therapy, or even while witnessing their child struggle to learn new skills.  This can bring up distressing childhood memories for them, some of which they may not fully recall or even connect with their responses to their child’s therapy session.

Therapists can be healing models for actively managing a child’s distress and expressing how they handle their own feelings when children struggle.  A parent that grew up in a punitive home may not have seen adults model healthy reactions to a child’s distress.

Therapists can teach you their techniques for grading challenge and providing support that reduces your child’s level of agitation.  My favorite book to learn how to respond to young children warmly but with limits is The Happiest Toddler on the Block by Dr. Harvey Karp.  His techniques support healthy attachment and children respond much more quickly than parents expect.  Everyone feels better, not just the kids!  Read Teaching Children Emotional Regulation: Can Happiest Toddler on the Block Help Kids AND Adults? for more on this amazing program and how it can help both of you.  Today.

Some of the OT treatments that help children also can help their parents with regulation issues.  Read Should the PARENTS of Kids With Sensory Issues Use Quickshifts? about one easy treatment to develop a wider window of tolerance that works well for both children and adults.

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Easy Secrets For Getting Young Children to Share

 

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It is the rare toddler that eagerly gives up a desired toy or snack to share with another child.  Yup; your child isn’t any different from the great majority of kids out there.

You may even have witnessed the “grab-and-go” move, where they take a toy from another child and then quickly escape to a corner of the room.  I know it doesn’t feel great when the thief is your child, but it also doesn’t mean they are destined to be selfish or live a life of crime.  It is normal for young children to behave selfishly; they haven’t fully developed the cognitive abilities that provide them with awareness of another’s perspective, nor do they fully appreciate social norms.

So, what can you do to teach your child to share?

Well, here are a few things that don’t work:

  1. Shaming.  Telling your child that they are selfish and bad because they don’t want to share isn’t going to build empathy.  It may have the exact opposite effect.   And they may try to hide or deny their behavior from you.
  2. Bribing.  Paying off for good behavior has been scientifically proven to backfire.  Paying kids for good grades, paying employees to exercise or lose weight, etc.  It won’t create a more empathetic child, but it could create a scheming child who parlays their desire for something else into a little show for you.
  3. Begging.  Pleading with your child makes you look powerless and puts your child in an awkward-but-intoxicating position.  It won’t make you more credible when you deny them something or try to teach another civic lesson.
  4. Playing the “Your behavior makes Mommy sad” card.  Children desire love and will do almost anything for it, but making it appear that they have crushed your heart because they followed theirs?  This is a slippery slope, and shouldn’t be taken unless you think long and hard about what you are teaching.

So what ELSE could you do or say that might elicit sharing?

  • You can demonstrate sharing YOUR items, and be very clear about how you made the decision and how you feel.  Make sure that you admit that sometimes you want all of your snack for yourself, but then you remember how good it makes you feel when you share and see how happy the other person is.
  • You can also have another person say how they feel when you share with them.  Children really don’t always pick up on the subtle feelings of others, and they need to hear it out loud.
  • When your child does share, be crystal clear about how good it makes you feel when they do.  This is different from telling them how bad you feel when they don’t, and different from bribing them to share.
  • Read some age-appropriate books on sharing, and try to discuss how the characters felt in the story.  Some kids prefer to talk about characters and not about their own feelings.

Your child may still shrug and refuse to share, or they may want to try sharing, now that they know so much more about it!

How To Stop Your Toddler From Hitting You and Use The Fast Food Rule For Better Attunement With Your Child are two of my popular posts that also help you help your child manage their feelings without crushing their spirit!

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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 always 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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