How to Set Limits Without Losing Your Mind: Behavior Strategies That Make Life Easier

I have a continuing saga of Autism One posts, as I need to go through my notes in the hopes that I remember some of what I learned.  Bonus for you (ok, in my head I think it’s a bonus, so let’s hope it truly is) is that I put my notes online in a post so that at least this way I can find them easily – and search them, too.  There were so many sessions I attended that are applicable for all children, and this was definitely one of them.  Nicole Beurkens, PhD gave a great talk about behavior and not just how we can stop what we don’t want but a lot of discussion about why it occurs in the first place.

There are many many reasons for behavior issues from: poor processing skills, poor problem solving skills, lack of (quality) sleep, overwhelmed/anxious/stressed, poor communication (understanding and speaking), illness/pain/physical issues, lack of motivation, bad mood, testing to see what will happen, and more....

Poor processing skills - these are individuals with processing problems.  The brain isn't able to make sense of the information as quickly or accurately as others.  It can be a host of issues, visual, auditory, etc.  When your brain is slower in processing this, you get overwhelmed.

Poor problem solving skills - lacking the ability to think through “how I would solve this issue.”  When plan a doesn't work, they lack the ability to think through what the next options may be.

Lack of quality sleep - There are a lot of individuals who are not getting good quality restorative sleep at night. They can't get focused or process well this way.

Overwhelmed/stressed - the more we feel this way, the more we will respond in ways that are not ideal.

Poor communication skills – whether it is receptive or expressive issues, this leads to behavior challenges.

Pain/illness/etc - This tends to be really overlooked in this population.  Once they have a diagnosis of autism, everything gets locked into this box.  “Oh, this is because of autism” where they have underlying medical issues.

Motivation - we have to look long and hard about what our kid are spending time doing.  If they are engaged in repetitive and meaningless programs (to them), then they shut down.  If there is not something to work for, that can certainly lead to frustration and behavior challenges.

Bad mood - Just like the rest of us, these kids are entitled to bad mood days.

Testing to see what happens - Of course they're going to do this.

The first step in really addressing behavior challenges is understanding the underlying reasons for this individual.  You hear a lot of functional behavior analysis, etc.  They can be good processes but don't go far enough.  a lot of times, people will say people are just doing this for attention or because they're resisting something.  We often have to look at some of these other issues first before we can rule them out and move to those reasons.

Some of the biggest mistakes that parents make. 
One of the biggest is becoming emotional.  I'll tell you that when we as the adult begin to become emotional about the behavior, it almost becomes the kiss of death because we become involved in this spiral of death.

Taking things personally - one of the saddest initial consultations, a child who had extreme underlying medical and health issues and severe self injuries and acting out behavior.  The child is very disregulated and overwhelmed with life.  The dad said "she just hates me" - it was important to acknowledge that he felt that way, and it gives the opportunity to talk about the challenges they have are not personal attacks against us as parents, though it can feel that way at times.

Inconsistent expectations - Sometimes parents and staff will expect a lot from a child in one environment and not in another.  The bar is sometimes held at one level one day and another another day.  This creates confusion in the child over what the expectation is.  She is a very firm believer in high expectations for every child in every situation.  Every child can be a little bit better tomorrow and the next day - with support to reach those.  "Better" looks different for every child.

Inconsistent responses - One day things are ok, and the next day we clamp down on it.  This often comes up with dads who are a laid back guy and things are going ok and it doesn't bother them and then they lose it.  You go from no response to lowering the hammer.  By consistently responding to inappropriate or challenging behaviors, this helps the child respond to what is not appropriate and also helps children keep themselves regulated.

Ineffective communication - talking abut more effective communication strategies to get through the child.  Not every child will understand reasoning and not in every situation.  Once they go past a certain point, even the most even-tempered child can’t understand what you’re saying when they’re in the midst of that meltdown.  Getting the right communication that is effective for your child is key.

Rule 1 - Stay calm
If you are not emotional and behaviorally regulated, then your child will not be either.  Keep a calm but firm voice and presence.  Stay in the here and now.  Speak and move slowly to give yourself time to think.  Many of these are very simple strategies, and nothing you haven't heard before.  Just because something is simple doesn't mean it's easy to do.  Stay calm definitely fits there.  If adults can't master staying calm in the face of a child's disregulation, nothing else is going to be effective.  Part of that is because we provide a model to the child in those moments.  It shows what needs to happen in that moment.  If they get worked up and we get worked up right along with them, no one is steering the ship and showing how to stay calm and regulated.

Some tools to help do this:  Keep a very calm voice and presence.  It's almost like the more loud and frantic a child is getting, the more you do the opposite.  The more you get quiet and soft and slow because competing with the loud child is not going to provide an environment for the child to calm down.  It is important to be firm, as this is not just wimping out.

It's also important to stay in the here and now. Parents say that it goes through their heads like "what if they're 18 and still doing this" and suddenly in that moment you are living 20 or 30 years down the pike, and that's getting you even more worked up because now the situation with a 3 or 7 year old has taken you to a place a fear and anxiety.  It's important to stay in the here and now and focus on what's going on in front of you and not allowing your mind to skyrocket into the future and have the heart rate go up, panicking in the what if mode.

Speak and move slowly to give yourself to think.  One thing she sees happen, the more upset the child gets, the more frantic the parent gets.  They feel like they have to do something immediately which puts us into a fight or flight mode, so we can't think abut how to deal with the situation best.  We need to slow down that sets a tone of safety and allowing some time and space to work through this.  It brings the tenor of the emotional situation down a few notches.  When parents and teachers and everyone can master this, it changes the picture of those interactions around negative behaviors.

Rule 2 - Communicate Clearly
Make statements - don't ask questions.  Say what you need to say and nothing more.  Don't lecture; don't try to rationalize.  Don't respond to everything that comes from your child mouth.

Make more statements instead of asking questions. When things start to unravel for your child, we try to get information from our child to get an idea what's going on.  We ask what's wrong, what do you need, etc.  We have a child who is already overwhelmed and having difficulty keeping it together.  Now there is all this complex language that they have to process and respond to.  And now - I've asked a questions, you need to respond to it.  It's much more effective to make statements instead of asking questions.  Instead of what's the problem, state "wow, something is not working well" or "wow, you look really upset."  It puts a more supportive spin on things and lets the child know you aren't going to put more pressure on the child to respond.

Say what you need to say and then know when to stop talking.  This is a hard one.  Because processing systems get overwhelmed so quickly, we are talking more than what they can make sense of, so we overwhelm them more.  We need to learn to be comfortable with stopping and not doing any more talking. Silence and processing time is ok.  Things start to take a real negative turn when we feel like "This is a moment to teach a lesson."  Don't lecture.  When we start in with this lecture, it adds fuel to the fire, as they are already in a state of fight or flight, and this only exacerbates the situation.  Their brain is not functioning optimally.  It starts to say "red alert, shut down nonessential areas for functioning."  One of the first areas to shut down is the thinking and rationalizing part of our brain in the frontal cortex.  In the heat of the moment is not the time to have this discussion because their brain is not engaged in a way they can make sense of it in the moment.  This is not to suggest that you should not talk to them after the fact about what happened and what they should and should not do.

Sometimes as adults, we feel compelled to respond to every thing that comes from our child's mouth.  When children are trying to keep themselves in check, they are like the stereotypical teenager who says things that don't require a response where we end up on a hamster wheel going around and around and back and forth.  It helps no one.  Sometimes it may be a series of questions that they already know or repetitive questions or it may be some really mean and nasty things.  Just don't respond.  What majority of parents discover is that responding only perpetuates the cycle and makes things worse.  In the heat of the moment and even across the board, know that you don't have to respond to everything that comes out of your child's mouth.  You do want to avoid getting on the hamster wheel.

Use language your child can understand.  The more stressful situations may mean that language they can understand in normal situations is something they can't process.  The more stressed they are, the less they are making sense of the communication coming at them.  The more stressful the situation, the more we have to reduce the complexity of our communication.  Focus on using more nonverbal communication instead, especially in the heat of the moment.  Often a verbal directive or attempt to redirect them will fluster and get them upset where using a nonverbal gesture works better.  A child who doesn't want to do homework, you start with "ok, let's do problems 1-5" gets things wound up again.  Instead, point at a problem or put the paper back in front of them.  Kids who get really flustered about getting backpack ready to leave in the morning, point to the backpack.  Just taking the verbal piece out of it reduces the complexity of what they have to process and also gives them a firm idea of what needs to happen. 

Rule 3 - Stop the Action
Sometimes the best action to take in the heat of the moment is no action at all

One of the keys to really effectively managing highly stressful situations, think tantrums or overwhelmed, we feel like we have to do something right away to make it stop.  Sometimes the best action we can take is to stop and wait.  Give them time to process and some space.  It gives the child a chance to calm down and start processing what's going on.  This is with the  caveat that when there is a safety issues, this is not applicable - common sense.  Very often, these kinds of behavior issues don't involve an immediate safety issue.  This is incredibly important in schools where they need to let things try to resolve themselves.

It's about finding the space between forcing and a free for all.  There are two opposing options in most people's heads, but this isn't the case.  “You are going to do X,” a force mentality.  Many of use know that this is just going to exacerbate the situation.  When we try to force a child to do something, at best is a surface level compliance.  What we don't get is any thoughtful understanding of what's going on in the situation so things don't get better over time.  The other end is the free for all - every time we try to do this, he gets upset so we're just not going to do that.  When we just allow the kid to do what they're going to do anyway, there is no learning that comes from this.  There is a great middle ground, which is where the stop and wait comes in.

What does this look like?  Don't let the child get away.  Don't try to force the child to do anything. Maintain a close physical zone of connection if needed. Don't walk away while they have a tantrum, just wait expectantly with them.  It teaches the child to come back on their own.

Rule 4 - Be consistent
Inconsistency make things much more difficult.  If you say something is going to happen, then follow through - but know when to fold.  Figure out what is going to work for you in terms of expectations and consequences, and then stick with it.

Being consistent is so important.  This is not like keeping everything the same in a complete routine.  This is about having one set of expectations day in and day out.  This is especially the case when we tell the child that something is going to happen when they make a choice.  Frequently, a family will say that something is going to happen and then they don't consistently follow through with it.  This is about the telling one time what's going to happen and then enforce it.  Don't give warning after warning or what you do means nothing.  You have to follow through, but know when to fold.  You will all at some point have a threat or consequence flies out before you think about it and you wish you hadn't said it.  You need to know when to say "you know what, I need to take a minute to think because I just said something and didn't mean it."  That teaches our kids that sometimes we say and do things without thinking and it models how they should behave when they do it, too.  In general, when you say something is or is not going to happen, that is exactly what is or isn't going to happen.  You need to have that kind of relationship with your children, too.

You need to figure out what works for you.  Every family is different and there are different things that work or don't work for you.  Figure it out an then stick with it.

Rule 5 - Focus on the positive
This seems so simple, but we forget about it.  If you have a child who is spending a lot of time acting out or being criticized, it gives your child the knowledge that you do appreciate them when you focus on the positive.  It helps balance out the negative that has to be focused on sometimes.  It also allows the parents to focus on the positive sometimes because we are so often thinking about the negative.  When we're in that place, that keeps us from positively engaging with our children and from staying calm.  It's important for us to stop and remember that there are positive things that happen, no matter what.  You can find something in the course of a day where you can say, wow I was so impressed that you just did that. 

Positive reinforcement works best.  Focus on the positive of "sure you can have this once you do x."  Form things in a positive way of what can happen once we do something else.

Remind yourself of the good things your child does, and make time to have fun together and enjoy each other.  When you do this, it makes a world of difference in terms of your ability to stay calm when your child does have challenges.

Nicole Beurkens, PhD
info@horizonsdrc.com
Free resources on the web - horizonsdrc.com

Yes, a lot of it is common sense, but putting it all together really makes a big difference.  I’m one of the talkers when the wee ones are upset, and I know I need to chill more there, and I’m working on it.  I also love the reminder that when we accidentally come out with a major consequence (no going to the pool for the rest of the month if you X), we can back up if needed and it’s not a bad thing – provided we’re not doing it all the time.  What are some of the behavior lessons that most stick with you?

Creating an IEP Strategy

I’ve been writing off and on about the sessions I attended at the recent Autism One conference, so many of which are applicable for tons of people, not just those with autism or other special needs.  Some of my favorites were those about GMO foods and organic gardening, and I’ve also written about getting an outside evaluation instead of having the school district conduct your child’s evaluation.

Today it’s about IEP strategies, and this comes at a great time for me because Mister Man’s IEP has expired.   He needs a complete assessment before we can even write the IEP, which will happen when we get back to school in the fall.  Because he’s been in Catholic school for the past three years, he doesn’t have an IEP and I’m a little out of practice, so this came at the right time for me, especially as I’m a little leery of the changing autism diagnosis in the new DSM-V.

Timothy Adams, Esq. and Lynne Arnold presented a great panel on putting together the IEP strategy.  My notes from the session don’t capture it all, but the amount of information presented was amazing.

This is not about fighting your district; it's about fighting for your child.  This isn't about battle or war.  You just want to have the right strategies in place to get the outcome needed.  Everyone sitting around the table wants what is best for the child - it's not just about money or resources, but this is also about getting the district into compliance with state and federal laws and getting what the individual child needs. 

Any parent who wants to break out of the norm is likely to meets resistance.  95% of parents don't know the children's legal rights.  When talking about programs for your child, it isn't just the programs available in district because they don't necessarily meet the child's needs, so we need to look outside the district.

Why use an attorney in the process?
Most parents are afraid of the costs and complications.  Many districts say they want to work with you but won't work with you if you bring a lawyer.  Districts act differently when there is an attorney on board.  The district knows that someday there is a potential for reimbursement where they will have to pay back the hours you've put in.  They often will work to resolve issues more quickly if there is a lawyer involved so they don't have to reimburse lawyer fees.  They do not have to reimburse advocate fees, however. 

There is no standard for what is a qualified advocate, so watch what they are experienced with.  If you want to improve an IEP, use an advocate.  This may make you feel better about the process. The attorney is useful for getting what the district rarely or never offers for your child - that they need.  You let them know that you will go to a due process hearing if needed or filing a claim in court.

If you use an advocate or a lawyer, find out what their qualifications or experience is.  Get references and ask people why they liked working with someone.  This is a new field, so you have to be careful to get someone worth your money.

Deconstructing the IEP Process
If you have no idea how this works, you will lose a lot of time and help for your child, potentially.  One analogy is the idea of a cafeteria line - you will be in this with your child typically.  You either take what's there or you don't.  You don't go in and tell the lunch lady you want creme brulee.  The cook doesn't know what you're talking about, and it's not what they're offering, so either take it or don't. 
Many IEP meetings are telling you this is what we have, so take it or don't.  Federal law says you have to do what is appropriate for your child, regardless of what is available in district.  This is more like cooking from scratch.  This is where an independent evaluation comes in handy.  They will provide a recommendation that is best for your child and what they need, regardless of what is available in the district. 

The district still needs to provide what is necessary for your child and make it happen.  This is based on what is appropriate for your child in an independent evaluation.  This also keeps them cooking from scratch so you aren't getting generic recommendations.  Use what your child learns - which you learn by what a qualified neurologist has determined.

It's hard sometimes because of what little district staff know.  Sometimes it's intentional, sometimes they don't know about what they educate parents on.  So many districts create procedures to keep your IEP on a predetermined path, which is confusing for parents.  They are waiting and waiting for the reports hoping there is something good and then a special day class is recommended.  When a parents asks, “Where is the ABA component or another behavioral component?” the district responds with, “Oh, well, you should have recommended that you need a behavioral component, so we can't even start doing this until you sign off an IEP.”  However, the district is on notice that there should be a behavioral component to the assessment the moment that there is a suspected autism. 

If they tell you that program X is full, this is not your problem.  They still need to solve it and find the best solution for your child.  If something is full, they need to get a solution anyway - even if that's writing a check to do something in home or at a private school, etc.  If they throw up the "we have union issues around this" - that's still not your problem.  They still need to find a solution.

When you get an IEP goal, find out what it means.  The strategies need to be specific.  The only way to know what it means is to ask.  What does it meant to be exposed to the general education curriculum?  If my child is being exposed to this, will he know these things by the end of the year?  If it states "to develop positive peer interaction"  who are Johnny's peers?  What do those interactions looks like?  What is positive peer interactions? When it talks about "improve social skills" or "gain academic competence"  - what does this mean?  Why are there no goals around this in the IEP?  How do you measure this?  If the IEP states that your child "will not receive any grades"  - question it.  Why are there no grades in 3rd grade already? 

Mark up the IEP and ask all those questions.  Keep asking, because they may give you words that still don't explain what it means.  Ask what it looks like.  If some of the words or lingo doesn't make sense, ask!  Have a visual reference of how things are being taught and what is happening.

District's Top 15 common and unlawful IEP responses #3
We are done hearing from you now.  We are never done with the process of discussion until all questions are answered and the progress on goals, placement and services, new goals, etc.  You can set a reasonable time limit on a day, but the IEP creation may be a several day process.  It is imperative that your concerns and questions are addressed and that you are actively involved and that your concerns are also addressed and that the time for convening the meeting is not limited.  This may have to be reconvened on a different day.

Playing the blame game - this has to be turned around.  For every deficit, there should be a subsequent goal.  If you have a five year old and are told that they have speech of a two year old, there is a shame and blame going on – “we could do a good job if you could just send a normal kid to school,” but that's not who our children are.  How do we turn this around when our children's behaviors are so out of whack that they can't do something because of our child's limitations? 

Know everything bad that the school wants to say about your child.  I would love to know every challenge - every challenge you tell me, I want to know more.  When you tell me about something that has happened at school - when did it last happen?  How often does it happen?  Then I want to know - what did you do when this occurred?  Next, I want to know how did the child respond?  So often what teachers are going to describe to you is that they are continually doing something that does not work or makes it worse for your child.  Often this is used as an excuse to put the child in a more restrictive environment, which isn't necessary but caused because they're making it worse. 

Once you know all the issues, get a goal for every SINGLE issue.  For every problem, there will be a remediation.  Goals drive placement and services.  Don't let the district say that there are too many goals.  Learn to be a parent who is eager to learn the problems because you can't solve the problems until you know what they all are.

The district has an obligation to take the child as he comes.  You cannot be required to medicate, etc. before the district has to take the child and make meaningful progress.

Overcome the fear factor. 
What will happen if...  the parent rejects a school placement.  You as a parent have a right to choose to some extent how a child is educated.  You still have the right to make choices regarding appropriate education for your child.  Districts often use the Student Attendance Review Board to try to force your child into a program that you don't want in.  You have the right to supplement the education as you wish.  The district may take you to due process for this.  You may take an assessment from a district or go into a program to start out and then then be able to get into the "right" program. 

Districts often tell us that we have to sign something by a certain date, etc.  Don't feel pressured.  They have things they are required to do by law.  Parents don't.  Don't let them pressure you into doing things because of what they are legally required to do.

It is not our policy to assess a child first without conducting a student study team.
There are a gamut of policies that a district might put in front of you.  It has to not conflict with state or federal law with regards to what they have to do.  Federal law is going to control, although it won't cover every area.  If a policy sounds a bit fishy or is not clear what a policy is based in, ask about it.  The district will have to provide you a copy of the policy if you ask and have to explain how a policy is consistent with the law.

What are you doing and why? 
Learn to be a minimalist.  In the beginning, you tend to do what they ask you to do.  Think about if you want to do it now, if you want to do it in a different way.  You can decline things or provide minimal information.  Provide information on a need-to-know basis.  The amount of information or sign off you have to provide sometimes depends on what state you live in.  In California, if they give you an IEP offer, you can say yes to the speech but declining the offer to reduce the ABA.  If you do so, the old IEP continues until the child ages out.  In some states, the burden is on the parent to file for due process if you disagree.  Sometimes this dispute has to take place in the midst of due process, but it depends on what state you live in.

Two avenues for recourse - sometimes you and the district won't agree and you need to know what to do next.  You can either file a  compliance complaint through the CRP which is more for procedure issues.  For example, your child is supposed to receive 3 hours per week, and the therapist is on maternity leave and so we'll make it up at the end of the year.  This can be enforced with the hours mandated by a compliance report.  Explain the compliance violation with a copy of the IEP and that the district has communicated that the services won't be provided. 

Federal law requires that you go through an administrative hearing before you can go to court as part of a due process hearing.  They will hear the claims like a trial - usually an attorney on the district's side, an advocate or attorney on the parent's side and the issues have to be proved by the party with the burden of proof (varies by state).  Once you get a decision back, if either party doesn't like the decision, it can be appealed to a federal district or a state court, then you  can move up to an appeals court and keep moving through the process. 

When it comes to due process, it's important to note why you'd want a due process complaint v a compliance complaint filed.  If you have a right to complete an assessment within 60 days and hold an IEP, it's a pretty clear cut procedural violation.  If it's more subjective like you feel your child requires a behavior intervention program and there is a dispute over the level or type of service, then that is a more subjective decision that should go through a due process complaint.  This could not go to a compliance complaint, although the violations could go through due process - but that's more costly.

Concerns over labeling your child
If we determine eligibility under autism or autistic like characteristics, you child will be labeled for life.  Do you want this?  In most cases, no one looks at your child's educational file because no one has the time.  So many teachers never even look at a child's IEP.  If this is relevant to any college in the future, then they need an appropriate designation on the IEP with the hope that it is all remediated.  If the kids don't get this label, the other kids in school will label him with something else.  There is an emotional appeal for your child to get nothing instead of what's appropriate. 

It is not meaningful to worry about labeling your child.  you don't need a medical diagnosis to get a label.  You  could have zero diagnosis and get a label, as there is a legal definition that the districts can use based on federal and state law without having a diagnosis to use to get an IEP or services.

Getting Support
Know your district.  Talk to other parents.  If there is a parent support group that you can join, network a little in the community.  Try to understand what other parents and families have had to go through.  Find out about the quality of services offered.  When trying to choose a school district, get involved first and ask questions. 

Volunteer at school.  If you want to know what's going on at your child's school, volunteer.  This is different from observing; the district will frequently put on a show for you with another aide brought in or something else.  They can’t keep up the dog and pony show on a regular basis, so volunteering helps you see what the school is like on a typical basis.  Also, a district cannot have a policy for what parents can do for regular education vs special education students, so find out what schools require to volunteer.

Privacy v Confidentiality
Districts often don't know the difference between privacy and confidentiality.  Students at public schools are not entitled to privacy  There is a court case on this - you see pictures in the newspaper because of awards, there is the annual class photo, etc. However, students are entitled to confidentiality.  The IEP, his eligibility category, etc. is all confidential.  The fact that he is in a certain classroom is not private. 

Districts struggle with understanding privacy versus confidentiality.  There was a district that posted every special ed student in a classroom with the diagnosis – that is a violation.  You cannot take every child with a label and put them in a yearbook with identifying information about their disability or label in the yearbook.  This is a violation of FERPA.

Getting What Your Child Needs
You need to make a list of what you have to have.  What services, programs and placements are required to benefit your child.  Once you have this list down, you can start the negotiations.  Tell the district what you want and expect in services.  Don't negotiate in an IEP itself - I'll give up this to get that.  Figure out what your bottom line is and what you hope to achieve as part of the IEP and what you're willing to discuss and negotiate outside the IEP. 

If you anticipate filing a due process, you are required to have a resolution meeting.  Ensure that this is confidential.  Know that what you discuss in an IEP and what you discuss outside an IEP should be different.

Districts are watchful of what they are willing to offer outside the IEP process that they don't want in the IEP because it becomes the default and stay put if you decline to change an IEP in the future and they are required to provide it and pay for it in years to come.

“You do not need to take notes.” 
That is not the case.  The district's notes generally won't include when the parents has disagreed with something and instead shows just that the parents declined things.  Parents can send in an amendment to the record, or an parental addendum.  If you find something that is inaccurate or that you disagree with, then you need to put this into the record by writing a letter with the details why of something is not appropriate for your child. 

Ask for a separate page for the IEP notes or minutes that you can add to reflect what was discussed that day, e.g., if you are going to place privately.  To do a private placement, you can give notice 10 days before you place or you can do it in an IEP.  If you give it verbally, it may not be accurately reflected, so you put it in with your own notes.

For me, the big thing to remember is to ask more questions - the what does this look like and how will you do this types of things so that the IEP is measurable and, I hope, effective.  What else helps you during an IEP meeting?

IEPs: School District Versus Independent Evaluations

We are lucky.  So far.  Although Mister Man is a special needs child, our school district has never presented us with any issues around providing therapies or accomodations for him.  When he was in private school, that wasn't the case, as they weren't set up to handle IEPs.  While they made some accommodations, when Mister Man was in kindergarten, we went for an outside evaluation to gain some additional insights and ideas of how to make the classroom an smoother experience for everyone.  And I'm glad we did.  That's when we got Mister Man's official autism diagnosis, and the pediatric neurologist did a great job in coming up with other ideas to make life easier for Mister Man.

There are others, however, who aren't nearly so lucky with their school districts.  Their schools aren't so cooperative, or they want to do an internal evaluation with someone who may or may not provide results that reflect your child's best interests but may reflect the district's interests or may be someone who just doesn't have the right expertise to fit with your child.  That's where you need to start thinking about whether an school district evaluation (free) is the right way to go or whether you want to conduct an external evaluation (generally at your own expense, though often covered at least partially by insurance) and bring those results to your IEP team.

There was a great presentation at Autism one by Dr. Mitchel Perlman on this topic, and I sort of wish that I had known much of this before we had taken Mister Man to have his evaluation done, though ours did turn out fairly well - mostly through luck and not skill, however.


Part 1 - Evaluating the Evaluator
Part 2 - Assessing the Assessment


What do you look for in the evaluator?

Detective, Scientist-clinician, maverick
As a detective, your independent assessor evaluates your student and the data.  The data generally is overlooked, especially the more green the evaluator is. When we investigate the student, we gather files depending on the needs of the child - medical, school, special ed, juvenile, probation - then perform interviews and observations, experiencing your child as you experience your child.  The observation may be in the home, school, community, office - depends on where you feel the evaluator will best experience your child where you want the evaluation to take place.  You want to get information from tests, but it is just one small portion of the entire independent evaluation.  What we're talking about is something a school psychologist can't do because of time.  As independent evaluators, we have the time to do this.  This way, you can look at the school report and see what it says versus an independent education evaluation, which should be much more comprehensive.


The autistic community needs to do much more of the observations than testing - depending on how testable your child is.  We need to see the whole range of behaviors in order to understand your child better. 


Testing is just a small portion of the report.  A good evaluator will investigate the data.  You have to look at the data to see what you have.  It's important for the examiner to be less dependent on the scores and subtests names.  Just because the test author labeled the test visual discrimination, that doesn't mean it's actually testing that.  It's what that author happened to label the test that has some relationship to it of some sort, but it doesn't necessarily completely evaluate it under the types of things we'd do on an every day basis.  He has to fight this in IEPs all the time.  The names may be ok for the general public, but it may not be testing it for your child because group data and individual data is totally different.  Again, there is no population that there is no population that this is more true for than the autism community because they don't follow developmental lines.  Because tests are normed developmentally, it may not do that for your child, which takes more detective work on the part of the evaluator to see if the data matches the child.


Interpreting the data:
How many children are truly doing what the test states?  to, on, in, cat - how many kids go t-ooo, to!  It's not reading decoding, it's word recognition.  Nat, tiff zoop - does your child do that there, or do they use subprocesses that are word recognition because they're fluent?  The test may or may not work for your child in testing what they state they are.


Items on the same test may not be testing the same thing.  If the child is missing a lot of items on a particular test, look at the items to see what they are missing.  Are they the ones that are really requiring a social nature where that's what it's testing and not the "sequencing" that you expect.  Make sure you talk to the evaluator to see if they do an error test to evaluate the errors to ensure that the test is valid for your child or what it does test.


The burden is on the test users to be better than the test they use.  The more green the person is, the more difficult that will be.  When they exit school, they will execute the test flawlessly.  The interpretation is the challenge because they just don't know what they don't know.  It's very important that the examiner you choose is someone who comes armed with a certain amount of research knowledge, clinical expertise, and theoretical sophistication.  It just takes experience to do this.  They dismiss data they already have or they gather the wrong data because of the tests they administer or they misinterpret the data they do have.


The first thing he does, he needs to see the files.  He will read through those and make some hypotheses and then start to know what questions to ask and what to evaluate.


Testing, including IQ tests, are samples of behavior and not exhaustive.  Tests assess functioning under fixed, experimental conditions.  Some processes we are able to remediate, so the test won't be the same going forward.  Test the child to find the strengths and weaknesses, then remediate the weaknesses.  Test the child again, and we have killed the prediction from the first test by providing the appropriate mediation.  We want the child to not qualify in the same rubric after we've remediated - data isn't there to say "this is your child" - what are you going to do to fix it?


we need to give the evaluators information that you have that the evaluator can't see at this point.  Take video to show the behaviors in action.  Create all sorts of video clips.  When they first started doing this, the mother of a six year old won an IEP to see what the child was like four years ago.  Give all the examiners, including the school psychologist, what the child is truly like in other situations.


Especially if you do interventions, create a chart of what your child was like in various points.  October - Jo could not respond to yes/no questions appropriately.  march - Jo could respond to yes/no questions for desires.  June - Jo can do all that and also to open ended questions. Also h has generalized all to across settings.  Do this for all areas where there is improvement - ability to go to a grocery store without the child running.    This is what the hearing officer wants to hear; how is your child a different person?  Show how he is now participating in the community, interacting, etc.  It proves what you suspect.  This is data that you need.  This is not testing.  This needs to be a part of an IEP, as you can't expect the examiner to pull it from you.  What is different now as a result of what changes you've implemented.


You want to show the learning trajectory before the placement change and after the placement change, especially in RTI day and age.  Is the intervention making a difference in your child.  If you have made a change, be sure you share this with your evaluator so they can plot the trajectories and can talk about it.


Strict adherence to scores can be entirely misleading.  Why would you give a verbal test to someone who has verbal deficits?  This taints to score applicability, and the implications that the erroneous test scores provide create issues.  You can't simply then average the two scores.  It's like having one hand in a fire and one hand in a bucket of ice and averaging it to say I feel just fine.  You'll never see an IQ test where all the subtests line up perfectly, and you don't want them to.  While they all test the IQ, they have slightly different parts of IQ.  We don't want the subtests to test the identical thing; we want them to test slightly different things or get at them in a different way.  We want them to be similar but not identical.  They also shouldn't be completely divergent so you can't pull a full scale result from the ones that are completely divergent.  Too much variance means that they aren't measuring the same thing.  It's up to the school psychologist to explain where the true score lies given divergence you see.


A neuro-psych approach means you don't take just one view.  You take all the data and look at it to see where the child's strengths and weaknesses.  In autism community, it separates into two very different visual issues.  The difference between visual spatial and visual discrimination.  "He's better visually than verbally" - it breaks down into these two areas all the time.  Visual spatial is when the eye eats everything at one time, it sees everything at one time - the marquee of the mall says you are here, where the shop you want and you know where you want to go.  Then you can break it down linearly into how you need to get there.  Visual scanning is different.  Whenever you see the soccer ball next to the dog in that order, then time this.  Interesting to see that when they scan the first line, they will then draw a line across and then down to the next line or cover up lines so that they can appropriate find the right place.  They have visual scanning issues, hands down.  If they skip a line or do a line twice, then they will do this with reading 100% of the time.  Reading is visual scanning.  If they do poorly or have to compensate, they will have issues reading.  This is where you would refer to vision therapy.


The scientist-clinician understands that too much data can cloud the diagnostic picture.  Read the file, then make some hypothesis.  Make a priori predictions - I predict that this will happen if I do that.  It's powerful to make an advance prediction and test it out to see if it comes true.  When they write up the report, they will generally refer to old files - this should be done before testing so that you don't have the same test given over and over again.  It's not a good use of resources.  Ask your independent educational evaluator what tests you are going to give your test.  They should not know what to give yet - they should ask what you want to get out of it and also they need to know the history of what your child has taken in the past.  Many tests cannot be repeated given the function level of your child.  If they tell you tests X, Y and Z, hang up and find someone else.


Wording and reports are poorly done frequently.  Below average and below the average range is a very different things.  What is a personal weakness an what is a normative weakness - that needs to explained to parents.  Person has a bad accident and is in ICU.  How is he doing?  He's doing great!  Ummm then why is he there?  Oh, he isn't doing great, he's improved but it is a NORMATIVE good.  You need to clarify what that means because evaluations will say that there are improvements only.  It isn't absolute; it's normative.  The overarching statement becomes uninterpretable.  Doing "great" or doing "very good" needs to be clarified with examples.  A personal weakness is something that is relative to that personal child.  A normative weakness is a weakness relative to the general population.  You may be gifted on certain processes but not other processes.  Relative to gifted strengths, his weaknesses might be stronger than those of a child next to him.  That is a relative weakness for HIM but not for the general population.  You need to understand what the strengths and weaknesses and progress are in relation to.


They often do an average range for IQ - there is the 85-115 for IQ covers 68% of the population.  Is that really average?  90-110 is the coverage of 50% of the population, so this is the true average.  The typical understanding is the 85-115 range.  2% above 130, 0.1% above 145, 14% above 115


Examiner as a maverick - your examine has to be able to defend the evaluation in due process and not be afraid to do so.  You have to be very clear with the examiner before the evaluation what you want.  IF you are shopping for a diagnosis for funding or a home program, and if this is something that the evaluation is not showing this, then the evaluator needs to tell this before the evaluation is complete.  Otherwise you'll get the same standard results that don't get at what you need.


You want to be able to ask your evaluator if you can stop the meter - if you aren't going in the direction I need to go, can I stop the evaluation.  If it's going to be useless, there's no reason to go on from there.  They should charge by the hour not a mass at the end.  Maybe come in for a few hours to see if the child is even testable or the direction is going in the right way and then decide to do a full eval or not.


The examiner does not need to limit recommendations to the district's menu du jour.  If the funding is available for 10 hours per week, they will recommend 10 hours per week.  You can't limit to what the funding covers but what the child truly needs.  The examiner can look to see if the district can meet the child's needs, but the recommendation needs to be what the child needs.  Many district will step up to the plate and buy the software they need or find what they need to help the child - they just don't know right now.  The examiner also does not need to make recommendations only related to FAPE.  It doesn't mean the district is responsible for providing it.  You can ask for everything the child may need, even if they district won't or can't provide it if it doesn't relate to FAPE.  You need to clarify what is or isn't related to FAPE so the examiner doesn't waffle when meeting with the district or in court.


Target placement.  What processes can be remediated and what processes can be supported based on testing.  For severe dyslexia, where you've already tried to remediate where they still can't read or write at a particular level at age 12.  They need to support those processes and not remediate them at this point.  You can train the child for what tools they can use to make life work.  For example, you want to support certain processes while trying to remediate them.  As they get older and the remediation isn't helping, then start to focus on the supports. 


You want the examiner to write them as if it were his child.  What would you do in priority order, and when would you do it?  If I only have $X to spend, when would you spend the money and on what programs or interventions to maximize the results.


Part 2 - Assessing the assessment
The files are so important because a good part of the story has already been told. They haven't been told completely or maybe not correctly.  Until they see everything ,they don't know what they don't know.  You want academic and psychiatric and everything, including teacher narratives.  ADHD is typically diagnosed in kindergarten and first grade.  You can get great things from the teacher narratives that are otherwise missed.


He loves SST meetings.  Student Study Team meetings, it's where they document all the problems the child has and none of them are going to be worked on.  Get those notes because they lay out all what the school knew....


The IEP notes in the school files are key - what they write in the IEP "seemed normal to me" may not be reflective of the notes taken that day. 


IEP goals - chart the goals from year to year.  If it's a reading goal, put it in reading, ditto with language, occupational therapy, etc.  Go back a minimum of three years in a row.  This really shows if there has been progress.  If a person has been struggling in math, why is there no goal written for math.  IF they have made no progress in an area, why are there suddenly no goals in that area.  Do this and hand to the independent evaluator.  This is also helpful for teachers prior to writing the IEP goals for the next year.  it also shows whether you have been provided FAPE or not.  While it is helpful in a due process case, this is helpful in general for all IEP meetings.


Functional programs - they are generally not diploma bound.  Look at the CARDS program.  They sequence the goals.  It shows how to remediate that particular area of the goal.  It helps spit out the goals.


The interviews - it's very important that you tell the examiner what you've done to bring your child to where he is today, especially those who are on the road to being recovered.  If someone says your child doesn't have autism ,that's a great compliment but they have to understand what it took to bring the child there.  If it's an SLD child and you're doing 3-4 hours of homework a night, that's why they are succeeding in school.  Teachers and everyone else need to know what we're doing as parents; otherwise, they can't factor it into the progress your child is making or what else they need to do.
My biggest takeaway for this one was the relative norms.  What's "great" for my child may not be "great" for a "typical" child.  I want to know what "great" means.  That's where the details come in - and I need to remember to ask those questions!

Will DSM-V Change Your Child's Diagnosis?

My son is diagnosed with mild to moderate autism.  I'm lucky in that he's very high functioning - he's in a mainstream classroom with no aide.  He has just mild delays - he has fine motor and social delays, and he isn't super coordinated, but one way or the other, he will live a happy and mostly typical life.  The down side?  DSM-IV - the manual used to diagnose not just autism but all other disorders that psychiatrists treat (yes, I have issues labeling autism as a mental disorder, but I'll let that go for the moment).  It's in the process of being updated right now, and my concern is that he will no longer have an autism diagnosis.  That's great, right?  Well, not so much actually.  Mister Man still needs various therapies from speech groups to occupational therapy - and who knows what he'll require in the future to ensure that he has as full a life as possible.  Without the diagnosis, insurance won't cover his therapies, and paying out of pocket... ouch.  And there's also the issue that without a diagnosis, beginning at age 9, he loses his IEP.  Did I mention he turns 9 in October?

There was a great panel at Autism One discussing the old and new DSM versions and many of the issues it encompasses.  These are my notes - completely unedited at the moment.  I found much of it fascinating, and my initial gut is that Mister Man will lose his autism diagnosis.  Whether he'll gain the new label or not, I'm not sure.  The big question is what to do next.  How will these changes impact you?

NOTE:  THESE NOTES HAVE NOT BEEN EDITED YET.  THERE WILL BE SPELLING/GRAMMAR ISSUES.  I WILL REVIEW THESE LATER TODAY AND FIX THEM.

DSM V is the revised version of what physicians will use and is updated periodically.  They have been looking at the autism diagnosis for about the past five years.  They felt pretty strongly that it is a spectrum and should not be split into different disorders.  If they are going to have autism spectrum, Asperger's and PPSD will not be diagnosed.  They are also trying to capture other areas like if there was regression, if htey have speech and language or not.  What's come up lately is that a study has come from Yale with major press that looked at the data sets from DSM IV and found that 55% of those cases would not meet an ASD criteria under the new critieria in DSM V.  We aren't entirely sure how this will play out.  We have several studies now out showing a significant drop of cases - approximatly 47% of toddlers they diagnosed would not meet the new crtiera.  The panel has also spoken with the DSM panel and they are seeing a net zero change in the trials.  There are some children - 5-10% who are dropping off the spectrum - and some who are now being picked up.  So we don't know now whose data is more accurate.  There is a question of whether insurance is going to require children being rediagnosed to get coverage or whether school districts will have to report different numbers.

With such a change in the diagnosis, it is really going to muddy the waters in terms of truly understanding if autism is growing significantly or if there is better diagnosis or something else - it is already a controversy and question.

There is a handout showing the criteria of new nad old criteria to see if this impacs you or a loved one.  We are also in a public comment peirod so you can go to comment on this to provide your feedback.  The DSM V as a whole - this is everything from bipolar to PTSD - is scheduled to be published next May, but it is already 2 years late, so there is huge pressure to publish it on time.  The committee promises that they read every comment submitted.  Urges caution - the manual is intended to be updated periodically, so maybe the new diagnosis should go into DSM V-1, still publish now so that we have the time.  Concern is that we don't have de-diagnoses and that insurance is covering what the children need.  Want to ensure they are not impacting families.

They are also adding social communication disorder.  They are anticipating that some kids who fall off the sepctrum in this new definition would get this diagnosis instead.  It is focused more on the speech and communication but removes the repetitive actions that not all children have.

The work group has been together for about 5 years.  Originally had 28 researchers around the world come together and put into 9 groups.  Should it be 1 spectrum v multiple diagnoses.  What would be the impact of eliminating the diagnosis of Aspergers.  Did a first round of field trials - screened an entire city in Finland and found the number of people diagnosed has been reduced.  Since that time, they updated the diagnosis criteria to address some of these issues.  There is also a study that shows that the new diagnosis has good spectificity that means people aren't being diagnosed who don't belong on the spectrum.  There are many, many studies, and all the studies are not agreeing in terms of the impact of the diagnosis change.

Mitch Perlman:
Living with a child with autism is so different than raw research.  Two criteria that are not in DSM - every child with autism is drop dead gorgeous.  As he's testing these kids, they pick at their nose.  There is some sort of allergy of some sort - not regular picking the nose but picking at it.

It is important to know just a couple quick things.  Psychiatry is not psychology.  The field of psychiatry was never developed as being scientists or clinicians.  The field of psychology was always meant to be the diagnosers.  They are trained to be with people to see what it looks like, they are trained to do the research and diagnosis.  The DSM-V isbeing put out by the American Psychiatric Association.  There are a lot of offlabel prescriptions going on right now.  The new manual needs to be updated so that they cover themselves as prescriptions will no longer be offlabel - particularly for bipolar.  But if you are being medicated for autism, it's chasing the symptoms, not fixing anything.  This eleventh commandment of covering yourself is not applicable to autism because any prescriptions will be offlabel because there is no pill for autism.

Most research being done is being used via DSM-IV to see do they fit PPD or Autism or other.  What we'redoing now is 30 some odd criteria that are questions, rather than letting someone diagnose, it is either a yes or no to these questions.  The clinicians just need to say do they meet the criteria for these questions.  This includes all the diagnosis criteria for Autism, Asperger's, PPD, social communication disorder.  This keeps the provider from being biased because they aren't diagnosing, but it tells the researchers what they meet the criteria for, and if they don't meet a criteria, where is the failure.  Then can go to the committee to say "if you include this piece of crtieria, it will solve a lot of the issues" and they will give everyone the data so they can do other statistics and also see what they have done.

The DSM has always had subtypes for certain disorders.  ADD with and without hyperactivity, ADD with and without other subtypes.  Their research can start to help promote the thinking for these types of subtypes.  No two children with autism are alike, but we do know that there are certain children that respond to diet.  There are certain children who received vaccines and regressed.  There are certain children who have regressed that we can't tie into vaccines.  Because we include all these subtypes into one diagnosis, we end up with muddled studies that makes is much more difficult to untie everything and start to see what makes a difference.

The first trial of this will be with clinicians.  Then we are opening it up worldwide to log in with a username and passwords.  The Safe Minds newsletter will put up updates around when this opens up so we can participate.  If you want it for your own personal usage, he can get this to us to use on our computers - not part of the research but so we can look at and how this relates to the different criteriafor our own children.

We are not doing retroactive diagnosis but proactive.  Don't use it to look at your previous patients but instead use it for the next patients who come through your doors who you suspect may be on the autism spectrum.

Even after the DSM-V is published, we can still make an impact on this.  We can urge congresmen or state legislators or the people diagnosing our children to do the old and new critiera together for at least two years.  We have a five year window for MMPI when we went to the new version so we could learn how to take advantage of the previous research and apply it to the new criteria.  Diagnose with old and new criteria so we can see the impact and how this goes.  The American Psychological Association is likely to ask if not demand that this is the way it be done.

In the beginning of DSM-IV, it states that this is a work in progress.  As a worst case scenario, we can still bring in new research and make an impact via legislation and other methods.  There is no group of people as cohesive and passionate as those of parents of people with autism.  You are more educated about your children's diagnosis and you don't just sit back and say "we lost."  Again, the manual is psychiatry.  Who is diagnosing your kids?  Psychiatry is not your first line.  It's the psychologists and others you turn to.

Jody Barrow:
Insurance carriers are driven by language and definitions.  They are driven by the language in the statutes and the language in the policies.  It is important that we look at the language in the statutes.  California, Illinois, New Jersey - all compel coverage for diagnoses that fall under PDD.  PDD will no longer exist, and carriers will go with the language in the statutes.  Worst case standard, they no longer have a coverage obligation.  There are going to be some carriers out there that are going to make that argument.  Best case scenarios is that most statutes either discuss specific diagnoses, but if the new diagnoses don't cover the same children, they may have issuses.  Recommended that social communication disorder be added to the language in the statutes.  In New York, there is a statute in the work that requires that insurance carriers cover under the definitions of the old DSM.  If the new DSM loses people, that is who will not be covered for new cases.

There is a concern that insurance carriers will require people to get re-diagnosed.  There is definitely going to be an issue.  If a child falls outside the new criteria for autism, they aren't going to get the speech, OT, ABA, etc that they said they needed this because there is no longer research showing that this is an efficacious researched based need for this.  There is no research right now any new disorder because they are brand new.  This is going to be an issue to get coverage for these kids.  It is important to think of how this is going to affect kids.  If we have a state mandate, it is important to find out how it is drafted and see how we can change it to ensure that people get what they need.  Require doctors to use both DSMs for a certain number of years to ensure there is coverage until research is completed with new diagnoses.

If an insurance company can argue that there is no requirement to cover a therapy, then we are stuck to get insurance paid as we have to show medical necessity for the treatment and for the diagnosis.  Possibly if you have a child who is mildly autistic and may fall off the spectrum, they may be able to get an alternate diagnosis so they can get some types of therapy that those will cover - e.g., pica.  Many insurance have exclusions for developmental things that they don't cover or it's only for short term therapy.

For states that have parity acts where they don't have a state mandate, then they have to provide medically necessary therapies.  If a child falls off the spectrum, they are also not going to have a coverage right under state parity acts, which is often the last line of defense for coverage.

Steve Kossor:
With DSM-Iv, we are talking about a diagnostic system where you have to take some from column a and b and c, etc.  Then you get to an overall agreement on the diagnosis.  Circle the areas that relate to your child.  Then look to the DSM-V side and circle the words that you circled in the lower left corner and you've translated the DSM-IV diagnosis to a DSM-V diagnosis.  Both of these are written at about an 8th grade level, so you can diagnose autism "Read a  cookbook and follow the recipe"  There is not the evidence yet that DSM-V is going to be a train wreck, but there are suspicions.  In the psychology/psychiatry/mental health field, for every expert there is an equal and opposite expert.  Show your comparison of your diagnoses to your licensed practioner who is your ally.  You need an ally on this one.

You have to find a courageous professional who will do the right thing and then render a diagnosis and based on the criteria and go to the insurance  company.  I know this child, I observed and interacted with the child, I went to the school, and I believe the child has X.  The insurance company 99 time of 100 won't try to challenge the diagnosis.  You want to have the DSM to help your child.

In New York, there is a bill proposed A9983.  In Senate 7072.  These are the bills mentioned earlier to have insurance still cover under the old diagnoses.

There is a federal mandate out there to compel all large group and self-funded insurance groups to cover ABA therapy and other therapies for autism.  ABA in the research literature is only validated for autism disorder.  There is nothing published for social communication disorder because it doesn't exist yet. 

Video everything - there is nothng better than video to show impairment on a daily basis with your child. Put together a video clip whenever you have an evaluation so that you can easily get this to the necessary people to help the diagnosis.  Or write "A day in the life with my child" to send to the evaluator that will be added to the report, so that you can really feel the child and get more data to them.

One comment or concerns over multiple diagnoses on claims forms.  1 is the primary diagnosis your child has that connects with the claim.  If therapists put multiple codes, insurance companies tend to choose the one that that will deny the claim and doesn't go with that diagnosis code.

For children with sensory issues, the DSM-V does use this as more of a criteria now than DSM-IV.  So long as your child still falls under the new autism diagnosis, you will be fine getting the OT covered.

For many companies, they are self-insured.  While they hire insurance companies to process claims, use their in network doctors, etc, the claims come from the employers' pocket.  They are not covered under state mandaters.  You need to truly get a copy of the contract to work through this and see what is covered and not covered.  You can also appeal directly to the company, as they rule the plan.  Many times they will make exceptions even when there are exclusions written because they know how autism touches so many.

One member of the audience mentioned that her insurance company (BCBS) has told her that speech disturbance 784.5 is best code to get services coverage for what she needs.  Potentially look into this to have providers - legitimately - utilize this diagnosis code when submitting claims.

For those children who have not gotten a diagnosis on paper, get the diagnoses done now so it's in stone and on paper.  For those who do have somthing on paper, look at the criteria to see where you are going to fall under the new crtieria.  For those who are receiving medication for anxiety under autism, get a diagnosis for anxiety so you can continue to have medication covered if you no longer have the autism coverage as a backup.  Just be careful of how you put the diagnoses and codes on claims so they aren't denied as discussed above.

How To Reverse The Effects Of GMO Foods

This is another post from my week last week at Autism One.  And once again, this is definitely a post that is relevant not just to those who have or know someone with autism but for everyone.  I am sort of freaked out by GMO foods the more I read and hear about them, and this is only part of the reason we try to do organic foods as much as we can.  The presentation by Bill Scheffler, who is from Pure Prairie, a farm near Chicago that provides organic and nutrient dense produce for local restaurants and farmers' markets.  They are opening a U-Pick operation this year, and I'm personally going to do my best to get down there to supplement the veggies I am not managing to grow.

What I loved best about this presentation is that it wasn't all doom and  gloom based.  Instead, Bill focused on what we can do to reverse the effects of what we're ingesting on a daily basis.  This is all evidence-based, and if you weren't ever sure how Round-Up and other pesticides used today work, this is great information.  Thank goodness we already love our berries around here!

Bill Scheffler, from Pure Prairie, at Autism One:
GMO foods are not an improvement.  This is DNA species crossing, and the plants don't react well to it.  It's like if you took some stray dogs or horses and put into your spare bedroom because you have an empty bedroom or garage, and therefore the problem is fixed.  The scientists don't bother to check to see what's going on in the house.  They say the protein is the same, etc.  Animals won't eat GMO grains unless they're really hungry.  To get animals to eat the GMO grains, they cover them in molasses. 

If you happen to see some squirrel food that is traditional (GMO) grain, try this experiment by putting some out for squirrels.  Then put out some GMO free popcorn. The squirrels will take the popcorn every time.  GMO foods aren't nutrient dense.  Field hybrid corn weighs about 55 pounds per bushel.  Popcorn (GMO free) weighs 75 pounds.  It's the missing minerals that makes this difference.

The pesticides used now aren't poisons.  Round-Up and all the others are chelators.  They go inside the organism and grab copper or another mineral.  Since these minerals are needed in the organism to function, the nervous system can't function in the bug so they twitch or in the plant so they can't function either.  But it isn't a poison. 

We use enzymes to turn things on and off.  The organophosphates hold the coppers; it's like I took the key out of the car.  I didn't break your car, but it doesn't work.  If you have a spare key, then it will work again.  The key is to take in the micronutrients - that's how you can overcome all the pesticides on our food and get our bodies working again.

When these foods go into us, they are low in minerals, and the pesticides will chelate a mineral in our bodies and deny it to us.  It's like disease by nutrition.  We need to supply the minerals to our body to get it working again.  Fortunately, the organophosphates are like sponges.  They have a limited ability to work.  Once the sponge is full, they stop working. So if we keep supplying our bodies with the nutrients, it keeps the sponges full so we have sufficient minerals for our bodies to function correctly.

Round-Up will grab manganese, iron, zinc, and copper.  Round-Up does not kill a plant; it weakens the plant so the disease kills it.  In a sterile soil, Round-Up won't kill a plant because there aren't any diseases.  Round-Up weakens us through malnutrition.  There are three growing points for a plant - the seed, the roots, and the tips.  Some of it goes into the body of animals that eat the grains or grasses, but most of it goes through.  That means it ends up going into the manure, so organic farmers cannot use manure compost/fertilizer anymore.  When a traditional farmer applies the manure, they're applying Round-Up on their soil, as well.  They won't see it in the beginning, but it will keep adding up and be visible.

If we eat the foods with the minerals of manganese, iron, zinc, and copper, our bodies can replenish these.  The preservatives and all the other additives added to food will be removed, as our bodies can differentiate.  Plants look for calcium.  If they can't find it, it will go for the next best thing, which is generally lead.  There is a lot of lead in our soil in Chicago, so we need to add calcium to the soil to keep the lead from being taken up.

What foods are high in these minerals?

Manganese is also called the seed of life.  When plants want to make a seed, they start with manganese and build out from that.  Strawberries, raspberries, cranberries, pomegranate, zucchini, tomatoes, etc.  Every seed has manganese in it.  If you want to supply your body with manganese, eat things with seeds in them.

Oats have all four minerals in them.  Oats have exactly what Round-Up takes out.  Oats have a high glycemic index, so our children might be sensitive to this.  When we eat our nutrients, the minerals are available to our body 10 times more than they are in your supplements/from a bottle.  They are ten times more powerful.  To supplement, look at kelp tablets, which are very concentrated.  You can also cook with seaweed - it contains 78 minerals.  Alfalfa has 60 minerals.  Comfrey has 43 minerals.  Kale has 20-30 minerals.  This does depend on the farmer, however.  It's more important to know your farmer than to buy organic.  So much organic food is low in calcium.  They haven't been taught nutrition and are just not spraying pesticides.  This is especially true for organic fruit growers.

How do you recognize nutrient rich foods?  The aroma.  They will also be heavier for their size - because of the minerals.  They won't be bitter.  If you have vegetables that are bitter that you're cooking, drizzle a tiny bit of molasses over it, and that will smooth out the bitterness.  You don't want to be able to taste the molasses - this is like dipping a fork and drizzling, and that's it.

The reason that preservatives and GMO foods and pesticides are hurting us is that they are damaging us through malnutrition.  We need chlorophyll, so keep up on our greens.  If the greens taste bad - they should be mild, even a little sweet - then use molasses right there in the pan while you're cooking them.

You can add 1 tablespoon of molasses to 1 quart of broth.  This will also make it far more nutrient dense and also adds a huge amount of flavor when you're making soups.  The molasses also makes it much richer.  Try it for chili or lentil soup or even chicken noodle soup.  Use the darkest molasses you can find.  A little maple syrup will work, too.

When fruits and vegetables are nutrient dense, the plants make their own food - it is mineralized sugar that make fats and essential oils, just like what maple syrup and molasses is.  The Omega-3 that fish have come from the cell walls of the chlorophyll from the micro-algae that the krill eat that then everyone else in the sea eats.  It's just concentrating the chlorophyll for us.  The fish don't actually make it themselves.  Same with the cows - the omega-3s come from the grass they're eating that gets concentrated.  The oils are made from minerals and sugars.  They are copper based enzymes that put these together.  Farmers need to make sure the plants have the raw materials they need to do this, and they need calcium to do this.

If our body has iron and iodine, then our body can make it in our liver.  This is another good reason to take a lot of kelp.  Leukemia is an extreme deficiency in these minerals.

Diseases don't run in the family.  Malnutrition runs in the family.  Families tend to eat the same things and the malnutrition for the same issues appears over and over.  Try changing the foods you eat, and look for the difference.

You can improve your digestion very much with the use of lemons.  It's the same as the acid in our stomachs.  The liver needs calcium to make bile to break down foods.  For generations now, farmers have been making low calcium foods (unintentionally, but still doing so).  To get the calcium up, one of the best remedies is hydroxyapatite, available at Whole Foods and elsewhere.  There is also a calcium orotate. 

If you want a food source for calcium, powdered milk is the best for calcium - it is calcium glycinate and will be in your body in 20 minutes.  It isn't a food, but it's a great calcium supplement.  Home gardeners who have blossom end rot in their tomatoes, put 2 ounces of powdered milk in a gallon of water 2 times a day, then spay your plants.  It will get rid of it quickly.  Here, the liver is not functioning and your bile is weak, so you aren't digesting well.  Take one ounce fresh squeezed lemon and nine ounces water, sip on that and it will help a lot, especially when you're eating a lot of fats in your food.

Raw fiber is good, as your body will pull gelatin from the fiber which will loosen bowel movements.

Because corn is self-pollinating, there are a lot of concerns about cross-contamination with non-GMO corn.  A lot of organic corn guys wait until two weeks after the other guys have planted their corn - maybe until June 1 so that your corn is tasseling when the conventional corn is finished.  This will help with the cross pollination.  There is a gene that is owned by a private corn breeder in Indiana that not allow foreign pollen to cross-pollinate with the sweet corn.  The sweet corn breeders have been using this for awhile to keep the conventional corn pollen off their sweet corn.  Other quality oriented plant breeders are working closely with him to make the genetics available to them so more can have the excluder gene - this is not a GMO, it is a natural occurring plant defense.
So what do you think about GMO foods and the pesticides used routinely?  Are you concerned?

How To Make Pots From Newspaper

I mentioned last week that while at the Autism One conference I had attended a great session about We Farm America where Seneca Kern talked about organic gardening.  The most fascinating part was making seed pots from newspaper.  It was amazingly easy and far more effective than I had thought it would be when he first started talking about it.

When I plant seeds, I can get them to sprout and grow - to a point.  It's the transplanting that I have a hard time with, and these pots solve that issue neatly.  You simply plant the newspaper, opening up the bottom just a little bit for the roots.  Brilliant, no?  I think, too, that having a larger initial pot will help develop the roots better so that they don't start to suffer as they get bigger.  I can't wait to test out that theory!

This couldn't be easier.  Even the wee ones were able to do it, and I love projects like this that can involve kids because they should know where their food comes from and that they can make a difference, too.  All you need for this is a can, some newspaper, and dirt.  Since newspapers now are all made with soy ink, you can use any newspaper so long as it isn't the glossy paper.  Sweet, no?

Step one is to rip the newspaper into strips.  You want to have a strip that is the length of a front/back page.  Rip or cut it a couple inches taller than your can.  I find I can get four good strips from a standard size newspaper, so I just cut it into quarters.

Gently and loosely wrap the newspaper around the can, leaving a little space at the top of the can.  If you wrap it too tightly, it gets hard to remove the pot from the can.  Trust me on this one.  You'll have an overlap of several inches on the bottom of the can, which is exactly what you want.  See how you don't have to have perfect edges?  This is the perfect project for me.

Fold down your edges into the center of the can bottom.  Start with where the seam of the pot is, to help it stay together later.  See how easy?

Once you have the bottom folded in, turn the can right side up again, and twist and push it against a hard surface to help get the bottom to stay in place the way you want.  This is just a couple seconds, and you don't have to push super hard.

Then, gently pull the new pot off your can.  If it comes apart a little bit, don't worry.  You can easily push it back into place, and it doesn't have to be perfect anyway.  Once you get the dirt in, and especially once it's watered, it will contain the dirt and seeds very well regardless of how sturdy it was initially.

Place your pot in something sturdy.  I used a disposable roasting pan simply because I had one handy.  You want something that is at least a couple inches deep for watering purposes.  I'm a little concerned about having something so shiny and reflective outside when the sun in shining, so I may place some extra newspaper around the edges showing so that the sunlight doesn't damage the plants, but use what you have.

Fill the pots with dirt all the way to the top.  Don't push the dirt down at all.  You never want to tamp down your dirt because you need and want the air, etc.  I used a small cup to get the dirt into the pots without making a massive mess.  It worked fairly well for me.  I would make a couple pots, then fill them, then make some more pots.  If I made too many pots without filling them, they started to tip and come open a bit without the weight of the dirt.  Once the pots are filled with dirt, you're ready to plant. 

Plant your seeds to twice the depth of the diameter of the seed.  That means it's a whole lot shallower than what I usually do.  Possibly that's another problem for me previously.  Note that I labeled my pots.  I need to know what I'm growing, and I know myself.  I'll never remember otherwise, and I want to ensure that when I plant my plot, I'm able to strategically arrange my plants.

Watering is super easy.  Again, because we don't want to have the dirt pushed down any more than necessary - or wash away the seeds accidentally.  Simply pour water into the bottom of the container you're using.  Depending on how many pots you have, you'll need a whole lot of water.  The newspaper will help to wick the water up the pots and keep them evenly watered - yet another benefit and bonus.  As your plants need to be watered going forward, you'll do the same thing; simply water the pan and the water will be absorbed from the bottom of the pots on up.

Once your pots are watered and the dirt is moistened, you'll want to remove the excess newspaper.  The newspaper wicks up the water really well, but any newspaper the isn't covering dirt will make the water evaporate faster.  Simply peel away any exposed newspaper.  As you continue to water your plants, the dirt will compact more, so you'll need to keep doing this every once in awhile.

Totally easy, right?  And green?  And amazingly effective.  I can't wait to see the impact of my garden once it's grown.  Thank you to We Farm America for sharing all this great information.  What will you plant?

Autism One: Organic Gardening - Get Growing This Season!

I am currently at the Autism One conference in Lombard – yay driving distance from my house! – and I again amazed by the amount of information available here.  There is absolutely no way that I can digest it all, but I’m doing my best to grab bits and pieces that I think can help me – and others – and trying to synthesize them into something that makes sense.  One of the things I love about the sessions I attend at Autism One is that they aren’t all specific to those who are interacting with others who have autism.  Many of the sessions are just generally applicable, which I think is awesome.  The first session I attended yesterday is exactly in that vein.  It’s all about creating an organic garden.

Now, I don’t know if you remember the garden that I attempted to create last year.  Let’s just say that it ended in epic failure.  I had two issues.  The first is that I was overwhelmed by the weeds currently existing (and still existing) in the area where I want to have my garden grow.  The second is that once my seedlings were large enough to transplant, I couldn’t get them out of the berry containers and egg cartons where I’d panted them.  Now?  I have a plan for the first one and the most awesome solution ever (in my not-so-humble opinion) for the second.

The presentation was given by Seneca Kern of We Farm America, an organization based in Illinois that creates organic gardens in homes, schools, and empty lots.  I love the concept, and I learned a ton from this.  My favorite quote came late in the presentation, and it really sums up the problems we face today.  “If the only animals that want to live near us are rats, pigeons, and squirrels, something is wrong.”  Sorta eye-opening, isn’t it?

From Seneca:
The power that lies in a garden.  Most society is based off the fact that we can grow food.  Now only a tiny fraction of people are growing food, and we're disconnected with it and do not know where our food comes from.  We can drive in the suburbs and see miles of corn and soy and think it's all good, but it's not.  Many people have heightened sensitivity to all sorts of things, especially chemicals. Growing our own organic gardens can help with this, plus it saves a ton of money and helps teach others of the value of this gardening.  It is the ultimate conversation starter.  Food is something we can sit down and talk about.

Kids come into the farm and have never seen a tomato or an eggplant or arugula.  Arugula isn't expensive - it's like a penny to grow.  It isn't elitist, so Seneca tries to teach people at the farm that there is no difference in what you can grow and what is at the fancy, expensive grocery stores.  You get to vote with your food.  It is a great way to build community and a foundation for economic sustainability.

He started an organization called We Farm America.  It is basically a way to get people to grow food in the easiest way.  We take a simple formula like a raised bed - get some lumber, some organic soil and some organic seeds and grow.  Permaculture is the idea that we can observe nature and then build systems that don't try to outsmart it but instead understand how to work together.  The main challenge is people - they are the hardest part in the city of Chicago.  Humans want their things in boxes; we want to make things this way even though in reality they aren't.

In order for us to get started in basics to get connected to the land, we have to accept that we need boxes, which is why we start with the raised beds.  The important thing is that the garden takes care of itself - we have busy lives, so they will put in an automatic irrigation system for the garden.  They also use organic compost to help avoid weeds and get really lush harvests.

If you’re starting a garden, a raised bed is the best way to start.  You can put a weed barrier at the base that stops the weed seeds - they can stay for 40 years.  If you don’t, as soon as you start to water your lush spot you will get "volunteers" in your garden, so the fabric barrier with stop that.  Put it down before you build the bed.  Start with a 4x8 foot bed.  Four feet is important to start because you have to be able to reach the middle of your bed.  You don't want to step on your soil or the bed.  You can reach the middle from each side with a four foot wide bed.  You have to protect your bed.  Put the wood around your bed to keep it separate from where you step.  When you step, it compacts the soil, and it makes it harder for roots to develop.

Thirty-two square feet will grow you two portions of vegetables per square foot per day in the peak season.  You square it off in one foot by one foot squares.  Most plants take only 30 percent of the water and sun in the spot.  Plant on tomato plant then lettuce around it - the lettuce helps keep the soil moist because it stops evaporation, while the tomato provides some of the shade that the lettuce is looking for.  It’s all about those symbiotic relationships.  In a square, you can plane one broccoli and 16 carrots.  Having the squares also allows you to do rotation. 

Be mindful of the systems that work.  Some plants like other plants around them, others don't.  Tomatoes and broccoli don’t like each other - it has to do with the chemicals they release, etc.  Generally, you don't want them next to each other, but you can skip a foot and plant it there.  Look up companion plants to see what to plant together.  You can look this up in the handbook at We Farm America's website.  You have to rotate – crops don't do well in the same spot each time; they deplete the soil or have predators that go after them.  Using a grid helps you track your rotations.  If you put in beans next season, the bugs attacking your potatoes will die and go away.  If you keep planting the same thing in the same place, you will have a degradation in your harvest as you go.  On that note, marigolds are a must in your garden.  They attract pollinators and also help keep away pests.  Think about perennials - strawberries and blueberries grow back every year. Try serviceberries that taste just like blueberries. You can definitely grow these in Chicago.

When building the beds, he uses wood from the Rebuilding Exchange.  It's wood that's being repurposed.  They haven't been painted or have chemicals, and they've been tempered, which hardens them and helps them resist rot.  Don't use pine or you will replace it every 2 years because it degrades too fast.  Don't use treated wood. Cedar works.  Fir may work, but he's never used it.  If you have to use pine, line it with plastic so the water can drain out - you need drainage.

You put down a weed barrier that is semipermeable - water goes down but not up.  Get a soil test before you start.  There is so much lead and arsenic and other things because of all the cars and planes and factories, even paint chips, etc. that infect your soil.  Go to University of Massachusetts, Amherst - for $10 they give you a kit for testing that results in a great set of info and recommendations of what to do with it.  Plant fava beans and sunflowers to get rid of heavy metals in your soil.

Watering is one of the most difficult things about gardening.  They put in a timer, which is great for those who have a busy schedule.  Set one in the morning and at night.  Watering in the morning is best because it's not hot.  If you're going to do it, water one hour after sunrise and one hour after sunset.  Doing it in the middle of the day is a huge waste of water because of evaporation.  There are 2 types of irrigation - poly tubing and a soaker hose or use a dripline.  He recommends using irrigation like this because it is easier on you and also because it provides a better way of watering for the plants.

If you have a rodent problem, put dog hair in the bed and around the perimeter.  It works really well.  Go to a groomer and ask for it.  It doesn't affect your plants, but the chipmunks, etc. have highly developed olfactory senses and don't like it.  You can also use pepper or chili flakes.

So many people never get to pull the vegetables out of the ground.  It's a great connection to your food when you see it right there.  Only three percent of food consumed in Illinois is actually grown in Illinois.  We have amazing soil, but it's because we grow for commodities here, for ethanol and partially hydrogenated soybean oil, etc.  We grow vegetables for industrial uses and not for consumption.  It's very inefficient, but it's easy to mechanize so we do it.  Other states around us grow substantially more food that they consume, but our food tends to travel very far.  You'll see Mexico, China, South Africa, California, etc.  How does it travel so far and still stay competitive in cost?  It comes from someone's wages and environment.  Traveling is gas and wages, the pollution and all the waste.

For rain barrels, go to delis or factories or car washes.  They get product in huge barrels.  They will give it to you for free.  You just have to get a biodegradable rinse to clean it.  It's much cheaper than the $70 barrels.

Putting your hands in soil releases endorphins.  It has the same effect as Prozac.  It makes a real difference - and so cheap.  Get your kids playing in the dirt.  There are also so many great microbes that you want to be exposed to for your overall health.  The electromagnetic fields from the gravitational pull is also very healing.  It's like walking on the beach with your bare feet.  It makes you feel exhilarated and calmed.  It helps to ground you.

I don't know about you, but I'm inspired.  This has solved my first issue - especially since I've discovered that We Farm America will actually come to my house to build my raised bed for me.  Ahem.  The second issue with the seedlings?  Well, I learned a pretty awesome trick for that, too, but that's another post.