There is no “gain” in waiting

Over the last two weeks I have heard at least half a dozen times, that a child was put on the watchful waiting list before an evaluation or diagnosis would be made.  These were all children ages 3-6 years of age suspected of being in the autism spectrum.  The families were told that preschool or simply speech therapy once a week may be enough to meet their child’s needs.

We know that one child in every 110 is in the autism spectrum. We know that early identification and intervention provides the best outcomes.  So why are we waiting on these children.  The American Academy of Pediatrics came out in 2007 recommending that ALL children 18-36 months should be screened for autism at well child visits.  If the screen is positive, further evaluation should be done to determine why the child was positive.

By age 3, a child in the spectrum has a high risk of developing poor coping strategies.  He has a high risk of being kicked out of childcare settings due to behavioral meltdowns secondary to social emoti

My girls

onal communication problems, sensory problems, and restricted narrow interests that impair his functioning in his daily settings.  The more he gets removed from different settings, the more stressed his family becomes, putting him at risk for aversive behavioral management techniques, inappropriate medications being prescribed, and/or verbal and physical abuse.

We need to be proactive with our children.  Provide them with the interventions and accommodations from early on so that they can learn, develop skills of competence and responsibility, and be emotionally stable.  The longer we wait, the more likely they will become part of the statistics of mental health problems, school dropout, and under or unemployment.  We either pay it up front or pay a lot more years later.  We need to learn how to choose wisely.

The passion for creating a better world

On the road at Salt Lake City, UT

I just spent the week on the road, speaking for PESI on autism.  I was in Idaho Falls, ID, Salt Lake City, UT, Cheyenne, WY, and Denver, CO.  I was so pumped by the people I met and the passion they had for helping individuals in the autism spectrum.  I managed to always get my full presentation done on time, but we had some great exchanges during that time too.

There is so much that we are learning about individuals in the autism spectrum.  The DSM-V, which will be out in 2013, is hoping that there can be clarification to allow more services, instead of fragmented services.  That is still to be seen, especially for the higher functioning who may not quite make it under the new criteria. But the DSM is also adding a new category or diagnosis – Social Communication Disorder – which is hoped to pick up those who are dropped by the DSM for autism but are recognized for their significant struggles with social and communicative language.  Of course it will be about who is willing to take up with services cause for this new population.

For those that haven’t seen the proposed DSM-V criteria, there are 4 sections, and the individual has to meet criteria in all for sections right now, although they are looking at the possibility of needing only 3 out of 4.  The areas are 1) Persistent deficits in social communication and social interaction across contexts, 2) Restricted, repetitive patterns of behavior, interests, or activities (which can include sensory) 3) must be present in early childhood although not necessarily fully manifest until social demands outstrip limited capacities, and 4) symptoms together limit and impair everyday functioning.  I am fairly certain that the 4th criteria will have to be met, but how impairment is defined is gray at present, since that might be somewhat subjective based on the diagnostician.

We need to look at the redefined areas in order to determine interventions and accommodations in order to maximize assistance to this population.  I was hearing during my week on the road that there are still diagnosticians who want to wait until 4 0r 5 before they apply the diagnosis.  I am hearing of some states who are encouraging educational diagnoses in order to get services started due to problems in the healthcare field in finding and diagnosing these children in a timely manner.  I know that is a problem here in Iowa too.  I had a parent tell me within the last year that a child psychiatrist told them that getting a diagnosis of autism spectrum was just trying to find an excuse for their child’s bad behavior.  While the Des Moines area is embracing the education diagnosis to get services started, I know that this is not statewide.

As a country, we need to increase the understanding of the autism spectrum disorders so that Child Find can occur early at the healthcare level, not wait until children begin school.  I am not against an educational diagnosis, I simply feel that we are putting these children behind the eight ball forcing them to wait before they can get the help they need.  The educational system, also is not set up for the level of intervention needed, if we wait till they start kindergarten.  The school’s main mission is to academically educate our society’s children.  Unless the system is changed for this population, they will quickly fall into anxiety, confusion and frustration, trying to juggle academic learning, with the social and language demands of a regular classroom.  There need to be changes at the school level to accommodate these children but the bigger demand is on early identification and services so that they are more prepared for the academic learning that is the main purpose of our classroom.  We also have to look at the older individuals and how to develop a system of service for them to become productive members of our society.

Let’s look toward 2013 to say how we use the revised criteria to identify early, provide necessary services, and systems of change to allow this population to be fully integrated into their communities.  Our passion will allow everyone to function at their optimal levels.

Communicating with your children

I spend a great deal of time working with parents who struggle with their child’s behavior.  They complain about the power  struggles and disrespect they get from their child. As I watch them interact with their child in the office, I see them missing many opportunities to let their child know what they do appreciate and what they do feel is being done correctly. When I point this out to them, however, they say they shouldn’t have to tell him when he is doing what is expected of him.

My question is, if you don’t communicate when he is meeting your expectations, how will he know? Will it be the lack of communication, lack of threats, lack of corporal punishment?  Children are not mind readers.  They are also not savvy about cause and effect, especially before the teen years, and even then they are still more concrete and literal than we realize.

Children are born wanting to be loved, accepted and respected.  That is a motto I tell parents and professionals all the time. I then go on to remind them that the rest we have to TEACH them.  We have to teach them what this looks and feels like in order to help them learn how to reciprocate it.  Studies are  showing us that babies watch our faces closely to learn about emotions and how to speak.  We all know that as they learn to speak, we hear our words (good and swear) come out of their mouths, frequently with the same intonations that we use.  They are imitating us because they believe that we are showing them how to act and respond in the world.  If we don’t like what we see, maybe we should figure out how to do it differently!

The first thing to learn about communicating with your child is not to ASSUME.  The meaning of ASSUME was taught to me by my high school chemistry teacher, and it has held me in good stead over the decades.  For a parent, this means not assuming the worse case motive about your child when they do something wrong.  I was talking with mother recently about this. She was describing her older daughter, a preschooler, interacting with her toddler sibling.  The mother was sure that the older daughter was intentionally taunting her sibling with a toy, hoping to get the other child to scream and holler.

Knowing the older child, I pointed out that she, the mother,  knew that this child had language, sensory, and social skill problems for which they had her in therapy.  I walked her through the scenario from the perspective of the child.  This older sister wanted her sibling to pay attention to her.  She also had a toy that she really liked that she wanted her sibling to notice.  She didn’t connect the points that the sibling would also like and want the toy.  It is possible that she was using the toy to help her sibling notice and maybe play with her.  But instead, the toddler wanted only the toy and a battle over ownership ensued.

I discussed with the mother different ways she could have communicated with the preschooler so that she could learn how to get positive attention from her younger sibling. I suggested ways to model for the preschooler ways to engage her sibling for joint play, with immediate positive feedback for attempts.  The next week when the mother came in, she proudly announced that her older daughter was indeed trying the strategies and if the sibling wouldn’t play, she (mother) would offer to play with her instead.

We, as parents and professionals, need to learn to step back and try to walk in the shoes of our children/clients.  We need to go back developmentally to their level of cognitive awareness and coping skill level.  We then need to model methods of interaction that the children can learn from.  This will include actually saying things that we no longer need for voice, but that the children need to hear, since they can’t read our minds to hear about weighing options.  As we learn to communicate with our children, we will find that they become the type of children and adolescents that we hoped we were raising.

Why have a label?

Labels are not bad or good.  They are a form of name. A means of being able to understand or know how to use something.  They help you understand what category they are in.  McDonalds, Nike,  oak tree, rose, alligator – they are all names or labels.

So why do so many people have problems with labels such as autism, dyslexia,  learning disabled, and ADHD?  There are definitions of these labels, books written on how to understand and help them, and a profile to make sense of the “whys” of their behaviors.

I have been told by parents and schools, that labels such as these limit children.  That they are not needed for providing help to children.  I have also been told that they are just excuses for laziness, poor parenting/or teaching, and bad behavior.  It seems to me that these are just other labels for the same problems, but with an entirely different set of interventions put into place.

I have also seen people accept these labels but not do anything to help children.  Instead they say that the children can’t help themselves, can’t achieve, can’t be encouraged to reach higher levels because they won’t be able to succeed.  I have seen that with children with Down’s Syndrome, who when moved to a different school or situation, then begin to learn.  I have seen the same with children in the autism spectrum, when interventions and strategies that have been shown in research to allow learning and achievement, are implemented and indeed these children do learn and achieve.

I see a label, or diagnosis, as part of that child’s profile.  Their profile helps the adults around them know where to look for understanding of how that child functions, processes, and interacts with their world. The profile allows the adults to develop interventions and strategies to help that child maximize their potential, not limit it.  The profile allows the adults to predict potential barriers and work around them.

Let’s embrace labels as a means of being better helpers to children. Let’s look at labels as means of helping children achieve despite neurologic wiring differences that make learning and succeeding more work than for their peers.  We all use labels.  Let’s just make sure we use them correctly and positively.

Check out The Ed Buzz

I got a like from The Ed Buzz on my last article, so of course I checked him out.  This man is a superintendent of a school district in California, but the state doesn’t matter. What matters is that he has the right idea about what schools and learning are all about.

He has a piece on evolving or changing.  We need to heed the outcome of the dinosaur!!  I know that I hear frequently, “But this is how we have always done it.”  Now Iowa doesn’t have the charter schools that California does, and they (charter schools) are not all really meeting the needs of families. A number are in it only for the money and pick and choose the students they will accept.  Check his blog out:  The Ed Buzz.  You can learn a lot about the charter school systems and about how to be an effective educator or administrator in a public or private system.

So what can we learn from Ed Buzz.  We need to learn about taking ownership for what we have and fixing what is not working. That  means that the public school system of Iowa shouldn’t sit on its hands and complain about No Child Left Behind. The need for accountability led to the legislation. Unfortunately, schools haven’t embraced  it as a means of saying how do they get back to the mission of helping children become independent, responsible adults who can find employment in the community they live in.

I see too much emphasis on bringing higher level learning to lower elementary school students.  We have forgotten the 3 R’s – reading, writing, and arithmetic – which are the foundations of higher learning.  We push so fast for students to learn, that almost half of each classroom is left behind. If you look at the NAEP 2011 for reading, Iowa has decreased in its score form 225 to 221, while nationally the score has increased from 219 to 224.  31% of our students are reading below the basic level (national is 34%). 35% are just reading at the basic level for 4th graders (national is 34%).  Together that means that 66% of our students are reading below a proficient level for 4th graders.  Our students are expected to be proficient, are being taught as if they are proficient, but are struggling, falling behind, and showing increasing problems with behavior, self-esteem and mental health.

For math,  if you look at the NAEP for 2011, Iowa has had an 11 point increase for 4th graders in scores from 1992 to 2011 (230-243).  But the nation’s public schools as a whole have increased from 219 to 240 (21 points).  The 50% is 242, so Iowa is in the middle of the pack, just like Governor Branstad noted in his speech on Education Reform.  If we want to bring businesses to Iowa we need to make sure that our elementary students get the basics down before moving on to higher level math.

The NAEP for writing was last assessed in 2007.  Iowa was also in the middle of the pack for 8th grade students (4th not assessed) with 56% achieving at a basic 8th grade level, 12% at below basic, and 32% at proficient or above.  Writing effectively is important in the workplace of today, so we are not meeting the needs of future  employers.

We need to change “business as usual” into the “business of helping children succeed”.  As Ed Buzz noted, we need leaders not people in leadership positions complaining about how everything is “someone else’s fault”.

The leadership challenge for parents and teachers

I am reading a great book right now, The Leadership Challenge. It is written by James M. Kouzes and Barry Posner.  Mr. Kouzes is a leadership scholar and executive educator.   Dr. Posner is a professor of leadership at Santa Clara University in California.  He has a Ph.D. in organizational behavior and administrative theory.  Together they researched what it takes to be a great leader.  They determined that there are 5 exemplary practices of leadership;

1. Model the way
2. Inspire a shared vision
3. Challenge the process
4. Enable others to act
5. Encourage the heart

These are the very same practices that parents and teachers should aim to excel at.  Children are born wanting to be loved, accepted and respected, but the rest we have to teach them.  As leaders, we need to realize that we need to spend enough time for each child to learn how to reciprocate those same desires to others.

First we need to model, frequently and clearly at all times what love looks and feels like. The same goes for acceptance and respect.  We have to remember that we are the most influential models children have until adolescence when they look to their peers more than to us.  It is embarrassingly funny when a preschooler swears just like dad when he hits his thumb, but it is not what we want him to do. It may mean that we have to look more closely at how we approach situations, how we react and respond, and how we demonstrate our emotions.  We may have to do some changing so that we are doing “what we tell our child to do” not the opposite of what we do.

A child will respond with more acceptance when he can share your vision.  But you have to know how to market that vision.  It shouldn’t be marketed as a chore or responsibility that he has to get used to.  Rather it should be a collaboration so that the two of you can do something together sooner.  There also needs to be the respect to the child that if he makes the choice not to collaborate, he is choosing to forgo the shared activity  due to a lack of time.

A child doesn’t always understand why something has to be done a certain way.  You can create collaboration by agreeing to challenge the process and think of other ways that may also achieve the same outcome.  At the end, together you can evaluate  if the alternative way  was as successful in job completion, time needed, and amount of difficulty. This will instill ownership of outcomes and allow the child to feel that you respected his questions and need to check things out. This will allow him to use the same behaviors with you, which is showing you the same respect that you modeled for him.

There are times when you would rather do things yourself because your child is too slow, not capable enough, or not old enough to participate.  In the mode of acceptance and respect, however, you need to allow him the time to do the task so that he can become faster, if he is slow because he is still mastering the skill.  If he is not yet capable, you can have him  repeat after you or put your hand over his hand as you push, pull, or do some of the steps.  The same applies to not old enough, with an explanation that the later steps of an activity are reserved for people of a certain age due to size, motor skills, or the law.  Sometimes it is okay to stretch the law reason, since it makes the legal system the bad guy, not you, thus decreasing arguments.  As kids get to be adolescents they may actually do this in a manner by having you be the “law” as to why they can’t do something that their peers are pushing them to do.  This happened several times at my house, where my teens told me that if anyone asked, I had grounded them, which is why they couldn’t do an activity or go someplace.

Encouraging the heart encompasses all three of the desires of newborns – love, acceptance, and respect. It means modeling and encouraging your child to do things for others because everyone deserves assistance, kindness, and friendship.  This also means teaching them how to understand those who don’t reciprocate the three desires and not go to their level of behavior or get taken by them.

Following the 5 practices are great for business executives but they shouldn’t be limited to them.  As parents and professionals, we all have the ability and the responsibility to utilize these practices in our encounters with children and adolescents each and every day. So now would be a good time to start.  Model and they will copy you.

If you are interested in the Leadership Challenge, click here: The Leadership Challenge, 4th Edition

A note for parents of special children

Children that we advocate for as parents

Another week has ended and my brain is tired from all that I have heard and the help that I have tried to give.  I keep hoping that parents will come to me, sharing their successes working with their child’s school.  While there are a few, the majority are still coming in with anger, confusion, and frustration.  They may have an IEP or 504 Plan, but the needs of their child is still being ignored, sometimes by the entire school, but more often by one of the teachers working with their child.  It may be a child with moderate to severe dysgraphia, who is supposed to have copies of notes and information from the overhead given to them, but told that they can have a copy at their desk that they can copy for themselves.  They are expected to copy the assignments off the board in the short period of time between when the teacher writes it on the board and the bell rings to go to the next class.  The parents have given the teacher information both from the OT that is  working with the child as well as the consultant who found severe processing problems that would require several minutes to copy five lines off another sheet of paper.  Don’t even talk about writing a paper or test essay, which requires the multitasking of

• developing the idea,
• holding the idea in his active working memory,
• while visualizing what it would look like including the correct spelling,
• activating the hand to begin forming the letters, and
•  inserting the correct capitalization and punctuation.

We understand that there is only a limited amount of RAM in a computer, which if overwhelmed will either slow significantly or totally crash.  The brain is the same way with a limited amount that the active working memory can do at once before things slip through or collapses all together.

I would like to tell parents that I greatly respect the advocacy they do for their child.  I applaud their continued research into why their child is struggling and attempting to share this knowledge with their child’s teachers.  I encourage them to keep the faith that they are doing the right thing for their child.  I know that they have too many times been made to feel like they are being unreasonable with their requests, even minimal cost ones like a teacher making an extra copy of his notes to provide to the student.

I do understand when schools balk when they are being told that they need to institute expensive, experimental methods, but the majority of accommodations for students are less than $ 25.  There are also times when the parents are correct that the school needs to provide professional development to bring in new methods and curriculum which are research-based, and proven effective, and can be applied to several students each year.  An example would be the young man with Down’ Syndrome who was illiterate at 19 years of age, after the school stopped trying to teach him to read at the end of 2nd grade.  After a year with a MSL (multisensory, structured language-based) reading approach he went from less than kindergarten level to beginning 2nd grade level.  And the mother was only able to afford tutoring once a week, working as best she could with him for the rest of the week.  The school finally got one of their teachers trained so he could receive it in school for the last year that he was eligible for services. While his growth has not been as fast since then, he is still making progress and gaining a love of reading.

So parents, please continue to be your child’s best advocate.  Together we will continue to make change.

Thanksgiving for all of our special children

Thanksgiving is just around the corner. It is a time for families to gather together, celebrating our community.  It is also a time to honor God and all that he has bestowed on this year, which encompasses joys and sorrows.

Thanksgiving - A time of families

I see Thanksgiving as a time for thanking God, in whatever form you view him, for our children.  Our children with their strengths and struggles, help us remember the complexity of life and learning. Our children with special needs make us aware of how even the “simple” acts in our daily lives are complex, made of multiple steps, many of which need to occur in a precise order, in order to have the desired outcome.

At this time of Thanksgiving, we need to also pause to consider the barriers to our children that are still present.  These barriers slow or stop our special children from reaching their full potential.  Some of these barriers require technology to overcome.  Some need medication.  But too many of them require a change in attitude in our society.  Many special children are mislabeled as lazy, unmotivated, disrespectful, oppositional, incapable, and unteachable.  Through my 30 years I have found that these same children would be better suited with labels of learning disabled, language disabled, having sensory integration disorders, autism spectrum disorders, and anxiety disorders.

You ask how can these describe the same children?   The answer is in knowledge of child development, child behavior, temperament, and brain functioning research.  It also lies in the need to take a moment to ask “why” a child is showing the behavior or being noncompliant for a task.  That “why” should then lead to interventions and accommodations to allow that child to behave more appropriately and be more compliant.

As we thank God this Thanksgiving, let us also ask for the wisdom to look for the answers to those “whys”.  Let’s take the time as we go forward to seek out the teaching, training, and assistance to help our children, our gift from God.

 

If I Had Only Known

Several times per week, I go over results of my evaluations of children with learning and/or behavior challenges.  Many of these parents come in originally because of frustration at their efforts to change their child. The majority have used “discipline” to try to force their child to comply or succeed.  They voice frustration about the child being disrespectful, lazy, or a liar.  The ages range from 2 to 20 years.

Learning from hearing, seeing, & feeling

As I go over the temperament profile, to describe how their child is wired to react or respond to their environment, they begin to feel ashamed or embarrassed at how they have treated their child. Over 90% of the children I evaluate have temperament profiles that have little natural ability to adapt to different environments.  This leads to anxiousness, confusion, and frustration on their part.  In return they receive the negative responses of their parents and teachers, seeing everything from the view of intentional noncompliance to show disrespect, not a response out of fear or confusion.  The discipline escalates as the child is not able to modify his response.

After going over the temperament profile, I then go over the results of language, visual motor and visual spatial, and if appropriate educational testing.  Just about every one of these children are barely average or definitely below average to significantly below average in one or more  areas.  If there are delays in sensory processing, such as auditory, visual, touch/pressure/ position sense,  the child struggles  to function in his environment.  Words may not make sense. He may not be able to process sequences of information. He may  struggle with movement in space and manipulation of objects in his hands.

By the time I am done explaining who their child is, almost all of the parents say “If I had only known I wouldn’t have responded or treated him that way.”  Only rarely do I get a parent who says “But he has to learn to do it the right way.”  These are the children I worry about the most, since their parents can’t distinguish between disability and disrespect.  The other families may need a lot of work to learn how to respond differently and how to advocate for the needs of their children, but they will do it.  They now understand.

This is why I speak around the country to parents and professionals.  I want to help them all  learn to look more closely at a child who they feel is a challenge. I want them to ask “why” is this child finding it hard to stay within the boundaries, to socially fit in, to learn the way I feel they are capable of. I want them to begin to develop positive plans of support and intervention that will lead the child to feelings of competence.

 

Suffer the Children

This week I read an article on the horrible outcomes for some children due to extreme corporal punishment.  The parents were Christians (which is not the problem) who believed the writings of a Tennessee minister and his wife, Michael & Debi Pearl.  Several of these children died from following what he wrote in his book To Train Up A Child. This book endorsed using a switch on children as young as 6 months of age. He described it as being no different than how the Amish trained their stubborn mules.

Does anyone else have a problem with relating a 6 month baby to a farm animal?  I thought we had gone beyond seeing our children as property that we could do with as we pleased.  I thought we had learned in the last century that children are not born knowing right from wrong, but need to be led with love and guidance to understanding.  He  points to the bible referring to the rod, as justification for his teachings, but we live in a much different society than when the Bible was written.  Children were not seen as important, but rather workers for their parents and others that they may lend them out to.   If we didn’t see children differently than in biblical times, why did we institute child labor laws? Why did we create laws against child (and any) abuse?

7 months old is a time of exploration

Fifty years ago, according to the Journal of the Academy of Child and Adolescent Psychiatry, Chess and Thomas had their first article on temperament published.  It was a longitudinal study to understand the behavioral responses of infants and children in order to determine how to best help them grow mentally as well as physically. They followed those children then into adulthood, looking at the role of environment and other influences on their personality and mental health.  Others have followed, some with slightly different groupings and labels for these traits, but they all found that children are wired individually, inheriting behavioral traits from their families, which need nurturing and guidance to flourish.  This is what they called goodness of fit.

Parent training such as what is promoted in To Train Up a Child, and many Assertive Discipline methods don’t use the knowledge from this longitudinal research.  They stay back in the dark ages of seeing children as property or as “evil” and needing to be coerced into compliance.  We as a society need to say enough is enough to old ways that mentally and physically abuse children.  We need to learn to use the knowledge from temperament research to create methods of raising children that allow them to flourish and learn cooperation and problem solving skills, not just fear  and cowering.

What do you think?