We All Have A Little Crazy In Us

There are things my husband does that drives me nuts.  And some of it is silly, but I’ll admit to my slightly compulsive tendencies.  I have systems for doing things that are important to me because I’ve figured out what is (in my mind) the most efficient or best way to do something, and that’s how I want it done.  Doing it any other way seems wasteful to me – and so I like my laundry hung a certain way and I like the wee ones fed at certain times (like, you know, before their low blood sugar turns them into roving maniacs with the logic of a flea and attention span of a cockroach).  My husband is much more go with the flow.

I admit to my crazy*.  Mostly because a) it works for me and b) it isn’t something that interferes with my life.  While I like things a certain way, I deal with them not that way on a regular basis.  Not everyone admits to it though, but there is plenty of … specialness to go around.

I take a look at my family, both my immediate family and my extended family, and I can point to various family members both on my side and on my husband’s side of the family and say, “oh yes, she is the X in our family” or “he is the Y in our family.”  I can identify all sorts of nuttiness, and I’m fine with that.  Every family has it.  Some to a greater and lesser degree, but it’s all there somehow.

One of friends has a great expression, and it’s one I go back to time and time again.  If you look around your family, and you can’t point to who that person is in your family, then it’s you.

Can you identify who is who in your family, or is it you?  What’s your brand of crazy?

*I admit to this bit of ummmm eccentricity. Outside this little little quirk, I admit to nothing.  Stick toothpicks under my fingernails, and you’re still not getting anything else from me.



In the interest of full disclosure, this post was part of the From Left to Write book club where we write posts inspired by books we read rather than traditional reviews.  This month’s post is based on the book “Gone Girl” by Gillian Flynn.  I received a copy of the book as part of the book club but was not compensated in any way, and all opinions remain my own.

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!

Blueberry Crumb Bars

Todayis the last day of school for the wee ones.  As a special treat, I decided to make them something that reminds me of summer.  There are certain foods that just scream summer to me, blueberries and lemons chief among them.  And voila, I decided to make blueberry crumb bars.  I edited them to make them dairy free, but use butter if you can.  Mmmm, butter!
And yes, these were a huge hit.  I'm storing them in the fridge because I want a cool treat in the heat of summer, and they do really well there.  So what foods scream summer to you?

Blueberry Crumb Bars

Ingredients:
1 egg
1 c butter (or butter substitute for me), room temperature
1 1/2 c sugar, divided
3 c flour
1 t baking powder
1/2 t salt
1 t cinnamon
1 lemon - zest and juice
4 c blueberries - I used frozen, use fresh if you have them
2 T cornstarch
1/2 t nutmeg, fresh grated

Directions:
Preheat your oven to 375 and grease a 9x13 glass baking dish.

In a bowl, mix together the butter and the egg and butter.  Add the baking powder, lemon zest, cinnamon, and salt, and mix well.  Add 1 cup of the sugar and the flour and mix until it's crumbly but not overmixed.

In another bowl, mix together the blueberries, cornstarch (use 4 t instead of 2 T if using fresh blueberries), remaining 1/2 c sugar, lemon juice, and a little nutmeg together.

Pour a little over half the dough crumbs into your prepared pan and pat them down.  Pour the blueberries atop that, then sprinkle the remaining crumb mixture on top of the blueberries.

Bake at 375 for 50-60 minutes, until the top is a beautiful golden brown color.  Let this cool completely befor you cut it so that it doesn't juice all over the place.  Store it in the fridge for a great cool sweet treat.

Enjoy this and more with Blessed With Grace and Tempt My Tummy Tuesday. Also posting now with A Southern Fairytale and her Mouthwatering Monday.

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?

Peach Coconut Milk Ice Cream - Tasty Tuesday!

I love ice cream in the summer.  There's nothing like that cool and creamy yumminess on a roasting hot summer day.  I used to make ice cream and frozen yogurt all the time, but with Little Miss' dairy allergy, I haven't made ice cream in years.  With summer coming up, I'm going back to using my awesome machine and making ice cream that is fun and also has ingredients I can pronounce in it.

With Memorial Day yesterday, I took my chance to start making good on my ice cream resolution.  With the dairy allergy, I decided to make a dairy alternative ice cream.  Have you ever had coconut milk ice cream?  It is so good and creamy and delicious, and no, it doesn't make everything taste like coconut.  It's lighter and more refreshing than regular ice cream, I think.

Peach Coconut Milk Ice Cream

Ingredients:
2 cups coconut milk (the full fat will give you the creamiest results)
2 cups peaches - separated (it's not peach season; I used good quality jarred peaches)
2 T brown sugar (yep, brown - yum)
1 t lemon juice
1/2 juice - not syrup - from the peaches, or simple syrup (equal parts water and sugar, boiled then cooled)

Directions:
Before you start, ensure you have sufficiently chilled your bucket for your ice cream - assuming you're using a machine that requires you to have a frozen bucket.  Mine needs to be in the freezer overnight, and now that I'm making ice cream again, I'm keeping my buckets in the freezer permanently.

Place the coconut milk, 1 cup of the peaches, brown sugar, lemon juice, and peach juice into a blender.  Blend on high for a minute or so until it's completely incorporated.  Add the remaining cup of peaches and blend on low for ten second, just until the peaches are chopped into bite size pieces.  Honestly, this is one of those times when I fall in love with my Vita-Mix all over again.

Taste test the ice cream base - someone's gotta! - and ensure that it's too your liking.  I don't like my ice cream super sweet, so you may need to doctor it a bit to get it perfect for you.  That isn't to say that this isn't sweet - it definitely is - but it isn't syrupy.

Prepare your ice cream maker.  You don't want to take your bucket out of the freezer until this point, or it will start to melt.  Carefully pour your base into your ice cream maker, and turn it on.  Let it churn for 20-30 minutes.  You don't want it to go too long, but let it start to get a little solidified and have plenty of air incorporated.

Pour your almost ice cream into a container that you can seal and put in the freezer for two to three hours, and you're ready to go.  This ice cream does best when you let it warm up just a little bit by sitting out 10 to 15 minutes before serving.  It will keep in the freezer, but it's best in the first few days after you make it, but it's good no matter what!  We served this with fresh fruit atop it yesterday, and it was awesome.

Enjoy this and more with Blessed With Grace and Tempt My Tummy Tuesday. Also posting now with A Southern Fairytale and her Mouthwatering Monday.