TherExtras

Functional Skills for Children with Autism

 

I do not I do not recommend you buy this book.

 

And I will tell why I do not recommend you buy this book.

 

After I mention some of the good points I read in the book. In case you want to check it out of your public library, like I did.

 

The author, whom I will refer to here as 'Functional Mom' gets credit for writing a book – her third, in fact. Perhaps some of you have read her books - ?  Please feel free to share your opinions in comments.

I also encourage you to visit Functional Mom’s website also (www.hername.com). There you can learn all about how famous she is for presenting on autism and about her other books. She has a page called ‘blog’ – of which the top two entries are dated in March and May. Just saying.

The title of this book was an immediate draw for me. I.am.so.into.function.

Like, can he DO IT?

The subtitle is even more seductive to  life-occupation-performance-me:
10 Essential Abilities Every Child Needs and Deserves to Learn.

To her credit, Functional Mom mentions OT.   A lot.

And mostly in a positive way.

Functional Mom gets credit from me for ‘getting it’ regarding teaching her son with autism what he needs to, you know, function, in life.

And to be so, uhm, succinct – only TEN skills and your child will be covered for life. Here are the 10 skills, each leading a chapter: Sensory Processing: Making Sense of the World; Communication; Safety; Self-Esteem; Pursuing Interests: The All-Important Art of Having Fun; Self-Regulation; Independence; Social Relationships; Self-Advocacy; and Earning a Living. Well I’d say that about covers it. Life. Just saying.

Here’s where I agreed with Functional Mom:

Research shows us that alternative forms of communication – whether sign language, a picture symbol system, a text-based communication device, or another approach – can actually help a child develop speech. p. 34

Here are a couple of new insights I gained from reading this book:

Use of the term “monochannel”. This refers to a child’s ability to process only one sensory input at a time. (Process roughly defined as ~ receive and respond-to appropriately.)  I thought that simplifying sensory input or decreasing input for a child with hypersensitivity to is pretty common knowledge. Perhaps not. Monochannel seems to accurately describe a very limited ability to respond to one’s environment or other persons.

In the same chapter on sensory processing, FM describes the visual distortions experienced by persons with autism. “Many children are overly sensitive to light.” p. 13  She quotes from another book by Donna Williams.

In Like Colour to the Blind, Donna describes what it was like when she put on tinted glasses (Irlen Lenses), that all of sudden the colors and patterns in the room actually became the window, the curtains, the furniture, and so on. p. 14

    “Wearing tinted glasses may help as well for some children.” p. 15

Wearing sunglasses seems like a simple, inexpensive and worthwhile trial for any child showing autistic behaviors.

I would try it.

I would have also made that last quoted sentence a “Practical Tip” in this book – highlighted and boxed at the top of some pages.

Because otherwise, I found her “Practical Tip”s to be poorly worded and so general as to be unpractical.

When considering your child or student in his environment, or when you are doing a functional behavioral analysis because of challenging behaviors, take into account factors such as the clothes the child is wearing, the light and noise level, and how people are physically handling and touching him. Practical Tip on p. 12

I blame Functional Mom’s editor.

Another not novel Practical Tip: “Starting good habits when young is useful for the long run.” p. 117

FM’s many references to her son with autism give credibility to her efforts to understand the best methods for teaching him. However, her work is caught in the time warp  of reflecting on techniques used over 20 years ago and at the same time admitting her son has not accomplished many of these life skills and he is now an adult.

She ends the chapter on sensory processing with: “A knowledgeable professional can provide therapy and make suggestions for how to help desensitize your child throughout his or her day.” Thankyouverymuch.

Perhaps my primary dissatisfaction with this book is that it did not meet my expectations based on the title, cover and chapters.

FM provides almost no reference to biological (anatomy and physiology) to explain the methods or gains from the methods she purports. In this book she is especially proponent of a particular method of communication without giving much information about the cost and appropriate subgroup this method might benefit. Unlike sunglasses, I find a recommendation like that too broad for a publication – perhaps better suited for a blog.

This book reads like 10 high school term papers from the same student. Not.much.depth. LOTS of quotes and references from well-known authors with autism. With each and every reference, she fully states the person’s name and the book title.

I blame Functional Mom’s editor.

The many references to other authors and the resource list at the back might make perusal of this book worthwhile for some parents.

Functional Mom uses the word “should” too much for my taste. Telling readers what they should or should not do is far too dictatorial and an anathema to my credo for giving parents a chance to make their own decisions regarding their children.

“People with autism have to learn these subtleties” (of culture or idioms). p. 40

“Behavior is communication, but we are not always so good at picking up on what the message is.” p. 5  All very fine, but when behavior is explained in the same context as the result of sensory processing impairments – what she is saying is that without language, the level of communication is very low (expressing discomfort or satisfaction). But she doesn’t actually say that.

I think this book has huge potential for confusing the reader.

Functional Mom and I don’t see motor development the same way. She reports from an autistic adult: “having trouble planning deliberate physical movements, a challenge which is shared by many on the spectrum.” p. 5 Sorry. There is so much wrong with the message in that sentence….volumes on motor development….I would oppose with the following: therapy should be geared toward repetition of movement without thinking about it (vs. deliberate).

She has her sensory systems confused, too. Under body awareness (proprioception with a little vestibular mixed-in) is a story of someone without temperature sensation – a tactile function.

Functional Mom and I don’t agree on how self-esteem is achieved. “Although good self-esteem is a necessary trait in life, rarely does it get mentioned in any curriculum geared toward children on the spectrum.” Self-esteem develops from achievement and is not easily measured in anyone. Self-esteem is a psychological construct. How does that fit into a teaching curriculum?

“A big problem area for many on the spectrum is their lack of organizational skills.” p. 114 [Definitely a cognitive issue.]

“Everything we do in life takes planning and organizing, and should be taught to everyone.” p. 116 [Not always or exactly teachable skills.]

We were told our son was severely autistic, that he was retarded…..No one explained that if his sensory process was out of whack, that could be why he was not learning.” p. 2

“If a child does not appear to understand what you are trying to teach him, do not assume mental retardation.” p. 27

“Children with autism are often misjudged by their erratic behavior ……we conclude that most autistic children must be retarded” p. 34

Functional Mom makes reference to retardation several times in the same way as depicted in the sentences above. As if a diagnosis of mental retardation is more-bad than a diagnosis for being on the spectrum.

I believe the inference from these sentences is that she believes being retarded is worse than being autistic. Looks like she is explaining a “special class system” for who is higher or lower on the class scale.

I think Functional Mom’s expressions in this book reflect a denial on her part that many persons on the spectrum are mentally retarded.

MR means one learns slower than most of the population. Because there are many (physiological or organic) causes for the neural dysfunction that results in MR, learning slowly is not defined by the cause of learning slowly. Sensory processing disorders that interfere with learning can cause a child to learn significantly slower than his peers.

Most children identified as autistic learn slower than their peers.

Language is the primary means for measuring intelligence. The earlier language is learned, the greater potential for identifying the rate of cognitive learning – as either slower or in keeping with one’s peers. 

With a vast amount of support and adaptation and still learning skills typically learned in childhood as an adult, the initial labeling given Functional Mom’s son was accurate.

I interpret her book as a treatise expressing her denial of the very first diagnosis she was given for her son.

I just can’t recommend her book to other mothers.

 Other Books I Have Reviewed 

Promoting Oral Function Through Therapeutic Techniques

No matter the reason for weakness* if muscle fibers exist, working them (exercise) will cause them to grow and become stronger. (*Almost always. Not mentioning every exception here.)

AFTER positioning your child for optimum oral function  and preparing the muscles with stretching techniques, exercising the muscles around the mouth is essential for developing oral motor function – eating. 

I have seen success = development of active muscles - by placing small amounts of soft food into the sides of the mouth between the teeth and ch-eeks. If you try this technique (in consultation with your child’s therapist) plan to wait, watch, add some touch-pressure to the ch-eek, support the jaw, talk to your child in a calm voice while facing him directly.

The feel of the food in the side of the mouth is the stimulus for the muscles to activate. If you see the response you want, then repetition is important – like daily. And repeating myself, you will be choosing when to do this – while he is hungry, or not, and with the knowledge that this is not how to feed him for nutrition.

If you want more formal and structured techniques for improving oral motor function you might consider using these - 

These bite blocks are used to help learn to grade chewing or exercises that promote more chewing control.  Bite blocks are used within specific programming by Sara Rosenfeld Johnson. 

Asking around here, few therapists use Sara’s techniques exclusively – except one of my therapist-friends who swears by using these bite blocks. If your therapist(s) are not familiar with her techniques, perhaps you can introduce them to her.

Sara even has a blog! asktheslp 

I considered turning-over this whole sequence to Sara’s blog, but, alas, she only posts about once a month. Still, the 4 posts she has up are very good and I encourage you to pelt her with questions. [I’m being feisty again.]

In case you are wondering, the blocks are used in the order of biggest to smallest. Regular biting exercise on each side with a specific number of repetitions using the blocks is a staple of Sara’s recommended techniques.

Do you think there is carry-over between eating and talking?

 

Me, too.

 

Danette  gets this – she left a comment noting the differences in speech between her three sons with autism. (Seen in the video.) 

If a child overcomes oral weakness with exercise then we might expect an improvement in articulation or speaking clearly.

But we also know that oral motor function – connected to speech (language) – is not only oral. In some children  it appears the speech centers of the brain and the motor centers of mouth are either not connected or some neural parts are missing. 

I also think that strengthening the muscles of the mouth and neck will enable functional swallowing and reduce drooling. However, if swallowing does not become automatic, drooling will persist.

My next post in this series on feeding/eating will be on the tongue and gag reflex. Meantime you might notice I’m struggling to post as often as I did in the spring. Don’t be too hard on me. Because.I.am.old. [I used this line a lot in my first blog-year.]

And feisty.

Last year at this time at TherExtras: 
I used to live in this world.

Therapeutic Techniques to Promote Oral Function

Not my preferred post title, but supposedly the kind of title that will draw more readers through searches.

Subtitle: This Worked When I Used It. (Next in the eating/feeding series) 

Sub-subtitle: This Worked When I Saw Someone Else Use It.

[Now don’t be getting uppity – you do this all the time – telling each other what you tried.]

Besides, I have already given SOME* background as to the why of what I recommend. 

[*No one is getting their DPT by reading my blog. Ahem.]

*There are so MANY factors influencing a child’s ability to eat. I am offering guidance but you will be the person making decisions about how your child eats or who to trust for intervention for your child.

Absolutely the MOST frequent and important eating intervention I have used is to set the child into a good position for the task. This might seem both counterintuitive and unnecessary as the results of changing a child’s position might not come immediately. For that I refer to the MANY children I have met whose caregivers have used all the other correct techniques in and around the mouth for years only to give-up for lack of success.

If head/neck posture (and subsequently spine or back/trunk posture) are not used to the advantage for both eye and oral motor control you.get.(mostly).nothing. In general, and preventing a common feeding error, the child’s head should not be tilted back (neck extended) – as in the position for CPR.

Neck extension tends to open the airway and close-off the food-path. In times past I met many-a-mother of a school age child who had persisted in feeding her child as an infant in a cradled position. Through years of repetition the child was taught to ease hunger in this position – very difficult to reverse.

Conversely, a slight head tilt forward facilitates opening of the food-path to the esophagus and closing of the trachea. But this position also can be overdone and overused.

I am NOT a proponent of using this particular positioning device for feeding. Only an infant should be in this position for feeding and any of many other infant-sized equipment options can be used. Specifically and especially the common and useful highchair(!)

Just 2 things about using a highchair – because I know none of you are working on eating just by reference to my blog – blankets and towels can be used to pad/support a smaller baby or one who is still working on control in sitting.

And 

A highchair affords the child to sit at a socially acceptable level with others at a table during meals. Babies can benefit from sitting with the family even if they are not eating. (Social aspects of eating are mentioned for the second time – the first time being by Mrs. Mac in a previous comment).

Segueing into one of my emotional triggers concerning eating….grrrr!

Grrrr! to whoever taught a mother to feed their child while sitting on the floor.

Grrrr! to all subsequent therapists who did not help the mother break-out of that habit after the child began preschool.

And can I say just one more thing?

Sure I can. It’s my blog! The popular and useful Bumbo seat can be helpful BUT it offers some of the same disadvantages as the ‘seat’ shown above. I caution you not to overuse or mourn your child outgrowing one.

I have seen children benefit from all of the massage / stretching techniques  mentioned previously. I think I failed to make this point explicitly – massage is a form of stretching – by pressing the middle or belly of the muscle it is stretched. Just different from pulling both ends of the muscle.

Inasmuch as the ‘sensory’  explanations for poor oral control are valid I hope to impress on you the motor aspects of eating.  We chew through muscle action that is controlled neurally – just like movement in the rest of the body.

Aligning muscles properly through positioning (relative to gravity) and prepping muscles for activity through stretching are valuable techniques to help your child develop or learn oral control for eating.

Okay. I’ve got break this into two posts. Quell your uppity-ness again, please. But instead of looking for ‘Part 2’ in the title, just look for the title words to be re-arranged.

S-t-r-e-t-c-h!

Stretching-recommended-before-exercise is pretty common knowledge. You stretch your muscles (and soft-tissues: tendons, ligaments, nerves, blood vessels, joint capsules, fascia) before you exercise – don’t you?

 

Much of what you see therapists do in and around the mouth of your child-with-oral-eating-impairments is actually stretching  the muscles and soft tissue. 

 

 

Most children respond with avoidance or fussing or expressions that we interpret as pained or feeling discomfort. Some might use the words: orally defensive or tactually defensive or sensory processing disorder. Whatever words are used, stretching (and in some terms, massage) is used to change the physiological status of the muscles of the jaw, the face, the tongue, and the lips.

Why are stretching and massage used?  Because inactive muscles shorten and become smaller and weaker – a downward cycle unless there is intervention.

Why are some muscles inactive or contract in ways that prevent eating?  The muscles are not guided well by their 'masters' in the nervous system.  Muscles are controlled by the nervous system – as is developmental progression.  Some children with development-altering-diagnoses have mouth muscles that do not function for eating.

Enter the speech pathologist or occupational therapist serving your child with her latex-free gloves, flat spoons and syringes. Some might even bring in a small vibrator. [Cheesh, I hope that word does not bring weird searches to my blog.]

The first thing your therapist will likely do is specifically position your child for eating therapy. Particular attention to the position of his neck is important. Remember that the esophagus (tube between the throat and stomach) and the trachea (tube between the nose and lungs) are next to each other in the neck.

You might see the therapist press her gloved fingers into your child’s face – to each side of his mouth – with a massage-like pressure. The therapist might grasp the masseter muscle between her finger and thumb and pull forward. She might press around his lips and pull the upper lip down and lower lip up. Pressure directly onto the tongue is another commonly-used technique. She is stretching the muscles and soft tissue to prepare for activation.

After preparation (stretching), the therapist might specifically insert a bit of food into your child’s mouth and assist his jaw and mouth to chew  (if that is the intent) and swallow the food. 

 

This whole process is to help the child develop the ability to eat.  Some parents and therapists choose to do eating therapy just before feeding or while the child is experiencing hunger. 

Eating therapy is tedious and not necessarily meant to provide nutrition in the moment. Some parents give-up on oral eating  after a lack of complete success.  As mentioned in comments previously, eating/feeding  a child is an emotional issue for many parents. 

If your understanding of your child’s eating/feeding problem is primarily sensory, the same techniques might be used. Deep pressure is often used to decrease tactile hypersensitivity.

I encourage you to learn some of the techniques used by the therapist to promote your child’s ability to eat. But I suggest you incorporate the techniques slowly or one-at-a-time - whatever you and the therapist agree upon.

In almost every case, deciding on a position for feeding is the first technique to incorporate into your habits or lifestyle. I advise against trying to replicate a therapy session with every meal.

Whatever you are working on – developing oral eating while using a gi-tube for nutrition or transitioning from suckling to chewing, or broadening the range of foods eaten by your child, an ST and/or OT are your best resources for helping you and your child.

Next in this series: The techniques I have used myself to promote oral function – what I believe are effective. [Note to self: remember to mention gag reflexes.]

B-lime-y!

I have been gathering the fruits of the blooms.

Studly Hubby planted 3 lime trees 4 years ago and one of them must’ve hit the perfect spot. This is the second year the limbs have bent under the weight of a crop of juicy green orbs.

These are the drawers in our extra frig.

There are more on the tree and I have been gathering about 2 dozen at a time and washing them - although we have not sprayed the tree with anything. I guess that makes them organic! Don’t forget that our 3 bunnies have supplied the fertilizer, too.

Sorry, I’m not doing a lime-giveaway on the blog. I will be sharing our home-grown limes with local friends and family members.

Perhaps y’all could help me with other suggestions for using our limes. Right now, we mostly use them to squeeze into our filtered water for drinking. If you see a good idea on the Food Network, let me know.

Where is everybody?

If the last post was somehow offensive not to your liking, please let me know. [I can invite criticism because I screen comments.]

The feeding/eating series will continue next week after I get back to my pc.

Meantime, consider taking your child to a planetarium laser show. (Well, except if you know this will send your child into crazed behavior or uncontrollable neural misfire.) [Readers of this blog have children with a WIDE variety of diagnoses.] A laser program might be especially interesting to children developing vision. Perhaps my favorite legally-blind-photographer will give his opinion on laser shows - ? 

Mast – i – ca – tion

That’s what those cute little animals were doing in the video and what you did if you did your homework.

For those of you just joining us for this series of posts on eating and feeding, today’s taste is the subtle but complex sample of disintegrating food by pressure between the enameled-surfaced-protrusions of the gums.

 

 

Meet the masseter. *

 

 

When students (PT and OT) study muscles they learn the origin, insertion, innervation and function.

 

 

 

Seeing actual muscles ** is helpful for learning where the muscles attach on the skeleton and which nerve(s) activate the muscles.

The function of any muscle is the resultant (skeletal) movement when the muscle contracts. The function of any muscle is dictated by the angle-of-pull (kinesiology or biomechanics).

The masseter attaches to bone (origin) under the eye along the cheekbone and (insertion) below the rear corner of the jaw. The angle-of-pull is affected by many factors but I want to emphasize the position of the head and neck ultimately affects a child’s ability to effectively contract the masseter. (Example positions: head forward and chin down or head back and mouth open.)

You can feel your own masseter by inserting an index finger inside your cheek and pinching the back part of the cheek with your thumb on the outside. Clench your jaw and you will feel the masseter tighten and probably expand.

The masseter primarily functions to bring the jaw (mandible) forcibly closer to the upper part of the skull causing upper and lower teeth to meet – crushing food [hopefully].

Diverting to the emotional aspects of eating (included in most of the comments) clenching-teeth-masseter muscles are visible on some people and interpreted as part of a facial expression of anger or stress. The masseter serves dual purposes for eating and expression of emotion. 

A couple of other muscles are usually active with the masseter during chewing: the temporal muscle and the medial pterygoid [sounds like the name of a dinosaur, eh?]. Those two muscles – having different angles-of-pull but crossing the same joint (TMJ) and they work with the masseter for grinding or moving the jaw sideways (rotating).

The function of just a few of mouth muscles has been detailed here to emphasize the complexity of eating. (Not analyzed: tongue movement and lip movement.)

Just a reminder that months of inactivity – even weeks and truthfully, days – affect muscle function dramatically. Muscles become smaller (atrophy) and weaker with inactivity. (See Janette’s comment on the last post.)  

Next up in this series: techniques your therapists might use in eating therapy and why they use them.

*Image from: Textbook of Anatomy, 3rd Edition by W. Henry Hollinshead (1974) [my old text].
**Image from: Grant’s Atlas of Anatomy, 8th Edition by James M. Anderson, M.D. (1983) [my old text].

Chew on this.

Before my next post – on the muscles of the mouth – a little homework for you all.

Get one of these

 

 

or something similar

small, firm but crushable.

Place a single serving between your upper and lower lip|s and draw the food into your mouth without using your fingers.

S.L.O.W.L.Y. chew the food and notice how the food moves or travels in your mouth before swallowing.

How.does.that.happen?

You do it everyday, many times a day and don’t.even.think.about.it.

Repeat if necessary to gain the full wonder and complexity of your mouth.

No wonder the mouth takes-up LOTS of your brain.

Oh, and that swallowing thing – not so easy for some children. Nanaslug explained ‘swallow study’ so well – I linked it into the last post.

Inasmuch as eating is a natural behavior, lots of emotional and social overtones are attached to the intake of sustenance. Like the ‘aaww’ feeling one gets while watching cute animals eating.

This time last year at TherExtras:
Think 'canopy'. 

You are what you eat.

Separate but related to feeding your children and how they eat  is the food you give them.

I know a bit more-than-average about human physiology, but what I know, have learned, and think about food is outside of my professional designations.

I am not a nutritionist or dietitian.  What I share regarding food is related to therapy to help children develop eating and feeding. 

Calories are an insufficient measure of nutrition.  Where the calories come from are important to your child’s growth and development.

For developing movement (motor skills) and language/communication (cognitive skills) I am especially concerned that children get adequate fat and calcium.

Fat is very important for the correct growth of nerves and the brain.

 

Calcium is critical to muscle contractions and bone formation.

With only these few facts, I can reasonably connect the dots  suggest further diet help to a parent in some situations.

 

For example…

- for a baby or young child who is gaining weight faster than height and is delayed in motor development I might suggest that the child is getting too many calories.

Extra weight can make learning new movement more difficult. I reiterate, I am not suggesting cutting the amount of food in this situation, but that the child’s diet be adjusted to slow the weight gain while retaining necessary nutrients. Professionals other than therapists can determine which calories and if the calories are being stored correctly by the child’s body.

- for a baby or young child who is very thin and also spastic, I might suggest a review of nutritional intake with specific attention to calcium.

Lack of calcium can cause muscle stiffness or increase spasticity. Professionals other than therapists can determine if calcium is not being absorbed correctly in the child’s system. (A mineral closely related to calcium in importance and effect is potassium.)

I will not comment or give an opinion on any diet under the moniker of DAN.

I have known children whose seizures have been reduced via the ketogenic diet.  I read  a blog by a parent   who gives the ketogenic diet to her child. I mention the ketogenic diet as an option to explore if your child has seizures.  

Clarifying the food path and a therapist’s part in that path...

Your therapist can help you choose foods to use during therapy to develop eating skills. The foods recommended by your therapist will likely be based on the texture, size and taste of the food.

You decide – with or without consultation from a physician or nutritionist – what your child eats for nutrition. A physician or nutritionist are the professionals who can help you find the correct food if your child does not metabolize food well as part of a diagnosis(es).

Therapists have less to say about what happens between the mouth and, well, the diaper.

Except…

some therapists participate in obtaining and using the results from a swallow study to discern whether food is taking a side-trip into the lungs via the trachea.

The cliché I used to title this post is born of a natural component of mothering.  Inadequate nutrition early in life can have long term effects for both physical and mental function.

I agree with Katy  (in comments) that strong emotions are attached to feeding our children. If you are struggling with eating/feeding issues with your child, I urge you to take your questions, struggle and emotions to the professionals you know and ask for some help.

Therapy is intervention, but not all intervention is therapy.

Summarizing.... 

Early intervention services are written into law under Part C in a slew of regulation in IDEA. “I wish that EI wasn't so fraught with bureaucracy.” (datri in comments) 

In a format similar to special education’s Individual Education Plan, EI services revolve around the Individual Family Service Plan or IFSP. Not just the child, but the context of the child’s life is given codified importance in early intervention.

Part C was written with much more state-level management which leads to early intervention services that might look different in every state county, town, agency.

In my lovely state of OR-- services for EI are like a lovely cocoon -- if there is even a bit of discomfort there is one person to call -- But once you transition out of EI into preschool-- you end up with help but now it's more like a big fish net-- there are holes that you can fall through. (Stacey in comments)

Current early intervention services implementation is explained in part by regulation that has changed over the 30-year-history of Part C.  What used to be has been changed to (something) and is now (something else).  [Feels like a time warp.]

“We have been blessed with EI....until yesterday when I opened up a bill from them for $483.00. ouch. Up until Feb of this year, the families were NEVER billed. Things have now changed.” (Lisa, in comments)

Time warp happens to parents, too. “When they're small it's hard to see the progress.” (Mrs. Mac in comments)

Concurrent with the history of EI was the development of the medical specialty neonatology - medical care to save children born early (and earlier).

Being born early increases the risk of developmental delay but does not predict delay that is not recoverable. Many babies born earlier than 40-weeks-gestation have (genetically related or prenatally caused) diagnoses at birth. No matter when they are born, any child with a diagnosis known to cause delayed development is eligible for early intervention services.

Whether or not a child receives therapy as part of their EI services is decided within a complex set of circumstances. Here I  emphasize that nearly all therapy can be considered intervention, but not all intervention is therapy or therapeutic. In the development of EI services over time, therapists have had to morph long-held tenets of practice into the philosophical context of educational law and social services.

Ooops! I just realized I promised to post on how I make decisions on therapy dosage for children under the age of 3-years. (Very abbreviated and not absolute) I recommend (within a stupefying small range of frequency choices) based on the potential I perceive I can influence a particular child’s outcome. I will recommend more therapy for a child who has the most potential and less for a child who has less potential.

[Do NOT try to pin me down on this. I am experienced with dosage arguments discussions and will not submit to any hypothetical situation.] Final note on this: potential has as much to do with the family as it does with the child. If the family is disengaged from the therapy process or unable to participate actively or only slowly, less frequent visits will fit their lifestyle.

You might have been thinking….hmm, “I thought the diagnosis would be the most predictive factor for frequency of therapy. No?” You were not thinking wrong – diagnosis can offer some expectation for each child – but remember that prognosis is less prophecy than educated guess prediction. I have read plenty of “my child proved the doctors wrong!” posts in the past 2 years. [Feeling like I’m in a time warp again.] 

Or as Julie correctly commented: “Diagnostic categories have done more than morph into a social descriptive. They have morphed into a requirement for funding of services.”

Returning to the idea that the family figures significantly in decisions regarding therapy intervention – a reminder that most parents experience extreme emotions with the diagnosis of their baby/child. I call this time “the throes of cure and care”. The parents’ emotional status must be considered with every therapy decision.

“I am still learning to accept life with a child who has a disability.” (Katie Sharp in comments)

datri (in comments) correctly sees irony in my thinking on frequency of therapy visits:

Parents who are clamoring for more therapy, are probably the parents who would do fine with less therapy because they are the one who follow through on suggestions by the therapists. But the people who may not have the understanding of why therapy and therapist suggestions are important and probably won't follow through are the one the service coordinators stick with fewer services because they won't complain about it.

However, datri, they don’t complain because they truly do not want more inter(ference)vention than is provided. I long ago realized how to read disinterest from parents – no point in trying force unwanted services.

I often use the single word “therapy” instead of specifying OT, PT and ST. Each of these therapist-professions provide specific (but overlapping) areas of developmental intervention. Ideally the therapists who come to your home work well with each other on a team. (Or not. Personality is a significant variable in EI service provision.)

For all their individual-ness, therapists have worked hard to earn their titles. I encourage you all to inquire about the educational and career background of the therapists who work with your child. You will want to know, for instance if your therapist will be supervising an assistant to work with your child, or will provide services herself.

Now about all the other people who provide intervention but are not therapists….do the best you can with them  try to get a clear understanding of their role from them. [And then come back here and tell me, please.] Well, Jeanette did say (in comments)

ECI has been fabulous for us! I feel like my specialist has taught me so much about child development and she is on the same page that I am, that we should ‘work’ through play.

[Are you getting the message that commenting and reading the comments here might be a good idea?]

“Why does my friend's child with DS go out to speech and PT every week and Ralph has EI at home MAYBE twice a month?” (Stephanie, in comments – where I answered her question.)

Some of my thoughts about EI have been judgmental. For instance, the term ‘natural environments’ seemed like spin for implementing dramatic change (at the time this change was enforced). At the same time, I believe there are benefits to offering therapy in the home (of any patient). 

One down-side to providing services exclusively in the home (or daycare) was that mothers (and fathers) were more isolated with their child with a diagnosis. But “Our home was not just ‘safe’ for Trevy...it was for me as well. It takes time for the heart to come to terms...and each parent moves through it differently.” (danielle in comments) Danielle also wrote (in comments), the broadest range of options – home, small group, and outpatient therapy in a clinic - is what we think is best. [Means I agree with danielle.]

Alternatively, henry’s mommie shared (in comments):

however, at six months i started taking henry to private outpatient therapy and i noticed a huge difference. he started accomplishing goals a lot faster. one thing that is a huge positive, especially for when a child gets older, is the private therapy [clinic] has lots of equipment to better help a child reach goals.

So is therapy in a clinic an early intervention service? Revisit the title of this post.

Medical vs. educational is a sort of philosophical difference. I easily think in terms of continuums vs. dichotomies. So these two terms are not opposites but relatively different and not mutually exclusive.

On the meaning of natural environments, I think Maureen said it best (in comments):

Natural environment is not simply the location. We first received services in a clinic, then in our living room and FINALLY in the natural enviromment. And let me assure you that when we finally found a practitioner who understood NE, my son made significant gains and I felt more competent and confident to care for me (a goal of IDEA). NE means providing functional services to support a child and their family doing all of the things in all of the different places that they would if that child did not have a disability. Thus it is about supporting a mom to take her child with sensory issues to the grocery store, helping the mother with a child with motor disabilities to attend the local gymboree, assisting the Dad with a child with a hearing impairment to attend storytime at the library. It is helping families to stay connected to their local community--houses of worship, neighbors, extended family. 

And this is the natural end of my summary on early intervention. Much thanks, Jeanette!

Food for Thought

As requested (in comments  by Mrs. Mac  and Ellen) this is the first post in a series on feeding issues.

There is a difference between eating, feeding, and using food therapeutically.  [Let's see if I am consistent with the key-word-color-code for the whole post.  This lightly-used cookbook will go to the first commenter who correctly catches a miss in this post.]

 

Eating starts within the mouth but includes biting, chewing, moving the food around the mouth and to the back of the tongue, swallowing, also sucking either edibles or liquid through a straw or nip-ple for the purpose of ingesting nutrition. 

Feeding is getting food into the orifice-of-choice for the purpose of ingesting nutrition.  Therapists might choose to use the lips as a line of demarcation for who does what - like Ecki shared in comments.  I'm of a mind that is not the best practice and hope you find your OT and ST working together on feeding and eating. 

The most commonly-understood  use of food therapeutically might be the old M&M reward for desirable behavior. 

However, as you read along with me [and comment, ahem] I will narrow the meaning of food-as-a-reward for desirable movement during eating and feeding.   That is, a favorite and possibly restricted food (like candy) might only be used to elicit better mouth control (chewing/swallowing)  or better hand control (feeding self).  

Several reasons give importance to understanding these differences.  Sometimes feeding is adapted for children who do not eat functionally through their mouths. 

Learning to eat orally is usually not sufficient for supplying nutrition - for many children this means an alternate feeding method like a surgically-created stoma to allow tube-feeding. 

I'm hoping this is enough for you to mentally munch-on Monday.  [I love alliteration.]  Now is the time to share your own understanding of therapy that involves food or ask questions to guide my posts on feeding and eating. 

I will also summarize the series on early intervention  this week.