Respite Care: an essential not a luxury!

We have this need to find the right band-aid, kiss it just right, and make all our children’s hurts magically disappear.  When they do not, we, the Mothers, have failed.

I am not talking about just your average mistake and move on type failures, these are FAILURES, worthy of expulsion from the “Mother Clubs of America”, revoking all PTA cards and as well as their rights and privileges there unto appertaining; an indelible black mark on our transcripts from the University of Parenting.

This is probably true for most of us Moms, but even more so if our children have developmental challenges.

We are a particularly fragile bunch of Moms.  We have endured the stares at the baggage claim in airports as our child had a meltdown for no real particular reason.  We have gotten the “look” at restaurants when our child spoke to loudly or impulsively touched something.  We have sat across from the well-meaning teacher who stated rather matter of factly, “your child is just different” (from the other kids).

And so, we the ultimate family fixer set off upon hearing those words to find, not just a solution, but the best solution. It was a journey into an unknown arena where everyone was an expert but us. At times the advice made our heads swim and squeezed out what little confidence we had that we were really up to the challenge of doing the right thing for this child with whom we had been trusted.

All the advice, do this therapy, take this medicine, no one seemed to get that the caregiver needed some attention too. “What do you mean you are not taking him to OT/PT/Speech and hippotherapy, he needs it!” “Oh, and by the way let’s not forget Hebrew School.” So we are easily misguided into thinking more is better and better means Moms Never Rest!

STOP!!! BACK UP!! Is this you or someone you know?

If it was anyone else, doing anything else, we would advise, “don’t burn the candle at both ends”… “don’t stretch yourself too thin”… “don’t ear yourself out”  “you could make yourself sick, you know”…and somehow this good advice is denied the parent of the challenged child. Instead the message is do more, don’t stop, this is how you show love. Oh, you have other kids, a husband, they’ll understand!

B-o-l-o-n-e-y!!! You show love by being able to be there as a whole person, and as the song goes, “…the greatest love of all is learning to love yourself”.  Ride in an airplane and the stewardess reminds “adults traveling with small children, in the case of an emergency, to put the mask on themselves first”.  How novel, you can’t be functional for someone else unless you are first fully functional.

And that is where Respite Care comes in. Everyone needs a break. It is not desertion. It is not a lack of love. It is not bad parenting. It is the one and true way of saying to everyone, I care so much about what I am doing as a parent that I am going in insure that I am here 100%, not just for my challenged child and for the rest of my family as well.  And I am going to do this by making sure I fill my emotional and physical “tank” when the levels get low.

Respite care does not have to be expensive. It can be a weekend 36-48 hours away at a friend’s home, a trip to family, etc.  And it is the best gift the rest of the family can give Mom. Not Super-Mom, just Mom, who is there for all of them all the time.  It can also be a trip away for the child. Visiting place without the family can be a growth experience for the child, and give Mom some uninterrupted focus time for the children who might be feeling short-changed in the scheme of things.

So the next time Mom looks a bit frazzled, the atmosphere a bit tense, step back and offer her the “mask first”. Respite Care can be the most caring thing we do for the whole family.

Susan N. Schriber Orloff, OTR/L, FAOTA is the author of the book. “Learning RE-Enabled” a guide for parents, teachers and therapists,(a National Education Association featured book) as well as the GA OT of the Year 2006 and  the CEO/Exec. Director of Children’s Special Services, LLC an occupational therapy service for children with developmental and learning delays in Atlanta, GA.  She can be reached through her website at www.childrens-services.com or at sorloffotr@aol.com.

Re-routing the Road to Anger

Soothing the Sensory Soul~ is your child horrible or horribly upset?

Chad has been known to be since he was a toddler and his older sister would come to OT and he would wait in the Clinic area with his mom.  Having had the opportunity to observe him casually over time, it was not a surprise to me that he was also now participating in an OT program.

What did surprise me was the report from school that he was the “meanest” and the “worst” child they have ever had in their (public) school.

Sensory sensitive to movement with poor figure-ground discrimination, Chad is easily confused in large classrooms.  The noise the movement, the rapid changes from one task to another are very unsettling for him to the point of frustration.

Dr. David Burns, a noted psychiatrist and author of the book “Feeling Good” (Avon Books 2000) clearly delineates the path to anger.  First comes frustration, then the inability to understand what is causing the frustration, the fear (of the unknown), rigidity of thought, decreased reasoning and then anger.

This is easy to see when the road map to acting out is given the  “AAA” treatment.  Unfortunately, children do not have the life experiences to “re-route” themselves, so it is up to the adults around them to model these pathways.

Too many classrooms today run on “because I said so” mentality.  This is counterproductive for children with sensory issues that already do not process or organize information in typical patterns.   Getting reasonable explanations of what, when, why and how to do assigned tasks helps considerably with these children in helping them complete with accuracy required assignments.

It is also beneficial for the teacher (parent, OT, etc.) to let the child know in a gentle manner that this is one of those “new route” times.

This happened recently with Chad.  In a conference with both Chad, his mother, his older sister and his math tutor Chad listened and participated appropriately most of the time.  The first part of the conversation was Chad providing us with information about what upsets him.

The list was exhaustive but clearly outlined the build up process from frustration to anger:

1.     Gets the assignment but didn’t understand the directions

2.     He asks the teacher but the teacher asks a peer to re-explain it to him

3.     He is still confused but afraid to ask again—thinking the classmate will think he is “stupid”

4.     So he does the best he can and gets it wrong and the teacher accuses him of
not listening” and “not doing his best” (this is last fall back response is a major pet peeve of mine)

5.     He gets upset and cries and then can’t stop and is sent to the principals office for being “disruptive”

6.     He gets angry because he feels he is being punished unjustly…and then…

7.     P…..O….W!! 

And this cycle repeats itself everyday. Enthusiastic about learning and simultaneously experiencing diminished self-esteem because he “can’t ever seem to get it right”. He also reported experiencing rejection (by both the teacher and the students) and fear of interaction.

Chad should be receiving in school OT 2X a week for 30 minutes each, but the OT quit and services have been sporadic and with various fill in OT’s.

We talked about Chad getting a fidget such as one of these squishy balls where the eyeball pops out but stay attached to the ball and when he feels the frustration building just squish the ball he can do this in his desk away from the eyes of his classmates or keep it in his pocket, etc.

One of those times came up for him during our conference.  I told him (he was squishing a balled up damp paper ball) that this was one of those “squish” moments, and just gently taking his hand, he self-calmed and the conversations went on without missing a beat.

Now let’s go back to the dysfunctional road to anger and see if we can re-work it:

The issue

The behavioral shift

1.   Gets the assignment but didn’t understand the directions           2.  He asks the teacher but the teacher asks a peer to re-explain it to him      3.      He is still confused but afraid to ask again—thinking the classmate will think he is “stupid”             4.       So he does the best he can and gets it wrong and the teacher accuses him of not listening” and “not doing his best” (this is last fall back response is a major pet peeve of mine)      5.       He gets upset and cries and then can’t stop and is sent to the principals office for being “disruptive”       6.     He gets angry because he feels he is being punished unjustly…and then…       7.     P…..O….W!!

1.     Chad can read it over 2x and highlight exact areas of confusion       2.     Prearrange via condition on the IEP that Chad and his teacher will have a system by which she answers his questions directly and not a fellow student.  3.  If he is still confused he should put the issues that confuse him most on separate pieces of paper. It is also important to reinforce with Chad that he is engaging in a form of “fortune telling” and “mind reading”.  He does NOT really know what the other children are thinking and emphasize that most likely they are thinking about themselves; just like he thinks most about himself!       4.     Have the attending OT explain clearly about sensory modulation and that right now this is a skill Chad is learning and as with any new skill there will be days where he “gets it” and days where he needs to “practice some more”.       5.     It should not get to this point but if it does, then ask Chad if he needs some time in the bathroom to “cry it out”—this should be done discretely and not as a classroom announcement.  Chad responds extremely well when he feels safe.  At times like these the teacher can pull up a chair next to him, take his hand and just keep on giving the lesson.  Human touch has been verified and the most healing of all touch and using it for external (teacher OT instigated) calming can be extremely effective.       6.     / 7.  This doesn’t happen, and by slowly working back up this pattern it will over time extinguish itself.

What has been happening with Chad is that his amygdala has consistently been hijacked by irrational thinking that has led him to incorrect conclusions that in turn provided him with dysfunctional action choices.

Occupational therapy should be focused on his thought processes as well as increasing his tolerance of extraneous background noises and movements.  Additionally, OT should help Chad establish fallback action choices that will be acceptable to the school still provide him with both self-calming and relief from frustration.  In addition to squishing the eyeball-ball, having a pre-made list of behavior choices he can flip through (3x5 spiral pad) so that he can get in the habit of doing something else before reacting, etc.

Over-reaction to everyday stimulations in typical classrooms can be addressed through structured games and activities that have these distractors built in to them.

Sensory sensitive children are reacting because of one of two reasons; either they see and hear everything blasting away, or they hear and see everything muffled as behind a thick curtain.  Either way the “environmental message” is not getting   delivered properly resulting in what seems to be, upon superficial glance, intentional, but what is probably a child in survival mode.

It is the job of occupational therapists in addition to treating the child,  to differentiate and explain these actions and reactions to the teacher so that the child can be understood and not blamed; motivated instead of being labeled “mean”.

Eating as social, sensory and developmental activity

I get lots of emails from families to help them with issues that arise with their children. This recently came in:

“…..  I am wondering if I should be concerned or not about my daughter’s  eating. She is 17 months old and still prefers pureed foods.  She picks up and eats plenty of foods on her own, but they are mostly cracker-type foods. Never meats, vegetables, or fruits (with the exception of apple slices). I am sure that I am mostly to blame, but just curious if this is an issue at this age, if he needs help, or if there is simply something that I need to do differently at home. She is growing very well and is usually in the 50th-75th percentile at least…”

Alarm bells went off—the answer a resounding YES!! Be concerned!  And address it now before the child becomes so resistive to foods that you are looking at a future eating disorder.  It is important to note that “eating disorders”  do not all fall within the anorexia/bulimia category.  Eating disorders can include obesity, food aversions, and more.

I advise parents to ease out of the “preferred foods”. Mix the baby puree with the lumpier toddler foods and slowly make the transition to the more “chewable, age-appropriate foods.  I also advise that it is easier to do this now when the parent is 100% in charge of what the child is served than later on when these behaviors and preferences are habituated.

The fact that the child will eat crackers says to me that the child is not rejecting textures, and so there might be a swallowing issue to investigate.  If the youngster is eating the cracker until it becomes very mushy then that is a significant suggestion of  possible swallowing concerns.  Occupational and some speech therapists specialize in this and a proper referral should be made so that this can be ruled out (or in).

One cannot ignore that eating is sensory. It smells (think holiday cooking odors and how that makes you hungry), it feels (think ice cream in your mouth, it tastes (salty, sugary, sweet, etc.), it has temperature (hot/cold) and it is visual (that is why cookbooks have pictures!).

If it is a sensory issue then there are protocols that the OT can create so that the sensitiveness to specific foods can diminish and eating become less of a struggle and more typical.

Keep in mind that the right foods choices are no longer in the aged-old pyramid; it is now a pie chart of balanced options.   

Fruits and vegetables should make up 50% of your daily diet; dairy products and calcium rich foods should be 34%, proteins from meats and beans, etc. 8% and whole grains 8%.  It used to be that carbohydrates were king but they have definitely been “dethroned”.

An article in the New York Times by William Neuman (May 27, 2011), stated that the switch from the pyramid to the plate will be beneficial in many ways and not missed by either professionals or consumers.  The article in part states that “….Few nutritionists will mourn the passing of the pyramid, which, while instantly recognized by millions of American school kids, parents and consumers, was derided by nutritionists as too confusing and deeply flawed because it did not distinguish clearly between healthy foods like whole grains and fish and less healthy choices like white bread and bacon. A version of the pyramid currently appearing on cereal boxes, frozen dinners and other foods has been so streamlined and stripped of information that many people have no idea what it represents…”  The article says that by looking at a plate the consumer can relate to how it should be filled with healthy foods.

Parents and professionals can easily access various versions of this food plate chart on the Internet.

So if the issue is merely “attitude” encourage parents to be strong and to tough out the toddler tempers and better foods are added.  If however the issue is sensory and/or physiological then create a protocol that encompasses the issues and provides easy access solutions.

A sample chart can look like this: Age range toddler

Problem	Manifested by	Physiological concerns	Social emotional concerns	Interventions
Scenario #1
Refuses to eat table foods beyond the appropriate age for eating more typical foods	Pushes it away Cries Temper tantrums	Had swallow reflexes checked Had oral sensitivities evaluated—no issues noted	Difficult to go out to restaurants as a family—child has meltdowns when family goes out	Slowly introduce textures at home Keep plates small for “one-bite” samples Let the child “cook” with you Make foods fun: i.e. heart shaped chicken pieces using a cookie cutter, etc.
Scenario #2
Cannot tolerate any crunchy foods in mouth Does not like to brush teeth	Severe rejection of both food and non food items in mouth and at times does not like hair combed either	Swallow reflexes appear to be within normal limits Generalizes sensory hyper-reactions t touch and habituates wearing same type or same clothing Stereotypical behaviors especially noted at meal times	Child refuses to eat with non-family members has a difficult time with snacks at friends homes and/or at pre-school	Get oral toys such as cars that go by blowing up a balloon, vibratory toys that can be put in mouth Blow paints Smoothies with raspberries –it has mini seeds and therefore ads texture while being sweet. Special Gum massagers maybe ones the child can “decorate” and make special just for them

Occupational Therapist are by nature problem-solvers and when picky eaters are presented to you remember that it is the whole family that is having this problem, not just the child.

Susan N. Schriber Orloff, OTR/L  FAOTA is the author of the book. “Learning RE-Enabled” a guide for parents, teachers and therapists,(a National Education Association featured book) as well as the WIN™ Write Incredibly Now™ Program (available through YourTherapy’Source.com).  She is also the CEO/Exec. Director of Children’s Special Services, LLC an occupational therapy service for children with developmental and learning delays in Atlanta, GA.  She can be reached through her website at www.childrens-services.com or at susanorloff@childrens-services.com.