Childhood Traditions: We Climb Trees

Fall has arrived, as I admitted to myself on Monday.  The days are still decent though - the chill of Chicago winters has yet to arrive, thankfully - and we're spending as much time as possible outside.  The wee ones love to ride their bikes and go for walks with us and more.

Each morning as we wait for the bus to arrive, Little Miss immediately runs for the tree in our front yard and scales it.  She's my monkey, my athlete, my gymnast, my strong little girl who has no fear.  Mister Man has always held back.  As much as he wants to climb the tree, he can't.

I've been convinced for a long time that his "can't" is more a "won't" than anything else.  I know that he lacks core strength and that his coordination isn't the same as other kids' abilities, thank you autism, but we've been working at it, and I'm seeing a difference in a lot of things from his ability to now do a pushup when he really wants to the ability to do a bridge up (trust me, this is incredibly difficult if you have low core and shoulder strength).

He will run to the tree and grab the climbing brand and his feet will peddle uselessly against the trunk, unable to gain enough purchase to stay.  He quickly drops back down, unable to use his arms and shoulders to lever himself up and over that branch.  He's been frustrated by it, not just because of his failure to climb, but because his almost two years younger sister has been climbing this tree for two plus years now.

I love that he never gives up.

And last weekend, he asked for my help for the first time in a long time.  I explained again that he needs to bend his elbows so that he has a chance to use his strength to pull himself up.  He has a tendency to not realize what his arms and body can do and what they are doing, so he will hand walk his hands further up the tree, never bending his arms and pulling his body towards the tree, not realizing that this tactic is doomed to failure.

Nodding, he grabbed the branch and used his feet to get his body horizontal.  With my hands touching and supporting him - letting him know I was there were he to fall, but not pushing him at all - he remembered to bend his arms when I pointed it out.  And he pulled himself into the tree for the first time.  You have no idea how bright that smile was.

I helped him down after awhile, and he practiced it another few times, the last couple without my help to prove to him that he really was doing it all on his own.  And then he stayed up there to read a book, finding the most comfortable branch to hang out on.

He now runs to that tree each time we have a few spare minutes and scampers up it.  Or tries.  He was shocked the other morning after it had rained that the tree was too slippery to climb.  And I watch him struggle into that tree, knowing that he can do it and that he's figuring out that he needs to have faith in himself to accomplish more than he ever dreamed.

And that?  That right there is all I want from him in life.  Happy, challenged, with faith in himself.  It isn't a big dream, but it's the one I have for my children.  What is your dream for your child?

Special Needs Teacher Introduction Letter

We start school tomorrow.  Mister Man is in a new school - one he attended for a just a few weeks last year.  The teachers there don't know him, and with his special needs, there are strategies that will help the teacher - and him - if both know them from the start.

So what's a mom to do?  I put together a little book about Mister Man.  It's four half sheets of paper, stapled together, that includes both pictures and text.  It tells a little about him - his strengths and weaknesses, along with things that we know help him.  The point of it all is to make a quick and easy introduction for the teacher - not reports that she has to wade through, but instead a portrait of an actual child.

I am bringing a copy for his teacher, as well as one for the social worker and the specials teachers - especially gym - so that they can better understand and work with him.  It's short and doesn't include everything, but it's a decent primer.  And next year?  I'll just update it with new skills and learnings, and his new teacher will have one, too.

***

Dear Mrs. B,
My name is Mister Man, and I am so excited to be in your class this year. I attended New School for just a couple weeks at the end of last year, as I attended Old Catholic School before that. I know many of the rules of New School, but not all of them, so please help me remember!

My mom says that I’m a really sweet kid, which has its pluses and minuses. I always want to help someone or stick up for them, but I don’t always do it in the best way. My heart is in the right place, though.

I love to learn, and I can’t wait for school to start. I am a “fact kid” and it’s so much fun to share what I know – or what I think I know. That’s the problem. I don’t always know everything I think I do, which can sometimes be hard in group situations where not everyone has my opinion.

Reading is one of my favorite things to do. In fact, if I have free time, that’s what I usually do. In the past, teachers have rewarded me with reading time when I finish my work, but unfortunately a lot of times that means that I rush through my work and don’t give it my best effort. If we’re reading in class, I get really wrapped up in it and sometimes get curious about what’s coming next, so I forget to stop when I’m supposed to, or I’ll page ahead when you’re talking to see what I can learn. Feel free to take away my book to keep me on task. It helps me remember to do what I’m supposed to.

Organization isn’t my strong suit. Sometimes, I forget to write down my assignments in my assignment notebook, or I don’t write down enough information to figure out what I am supposed to do when I get home. If you can check briefly to ensure I got down the important things, I’d really appreciate it – although I’m working hard on getting better at this!

I sometimes struggle with impatience, too. Remind me that you’re the teacher, and I’ll remember that you’re in charge and that this isn’t something where I always know what’s coming next or what the right answer is. It’s more because I’m so excited than any actual disrespect, so please understand that. I like to do things my way, which I know I can’t always do.

Because I think I know what’s coming next, sometimes I don’t actually read the directions on my assignments or read all the parts of a problem. Sometimes having me highlight the directions or labeling them 1, 2, 3 for steps helps. Or have me keep my paper upside down while you give instructions, so I’m not tempted to start working before I know what I’m really supposed to do.

Math is a lot of fun, and I like to do computations in my head. I don’t tend to show my work as often as I should, and sometimes that means I get problems wrong when I know the answer. I’m working on slowing down and showing my work, but sometimes I don’t think I need to. And as much as I love the concepts of math and enjoy them, doing quick computations and then writing them down (a la Rocket Math) is hard for me because I struggle with my fine motor coordination and the connection from my brain to my hand.

And yes, I do have issues with fine motor. I know how to hold a pencil, although I need a reminder to “hold my pencil the right way” – which really improves my writing. I haven’t quite decided that neat handwriting or even capital letters make much of a difference, so I have to be reminded to write “small and tight” but I absolutely can do much better handwriting than I will usually show you. Keep pushing me.

I love to be challenged and engaged. When I’m learning something new, I’m happy and focused on that. Sometimes I get down on myself and frustrated when I don’t know things, but I’ve learned a lot about how to keep working hard and have positive results in the end. Sometimes, I need a reminder about that.

Socially, I struggle sometimes. I’m not quite on par with the rest of the third graders, but I’ve made huge strides. I want to be their friends, but sometimes in play, I don’t know where that line is and so don’t know when to stop. I don’t have that instinct. I do know that when someone is bothering me, I’m supposed to walk away and then tell an adult if they still don’t stop.

I tend to talk louder than I should, although a pinching motion with your fingers reminds me to turn the volume down. I also forget to look at people when I’m talking, and I rock back and forth when standing. Reminding me of “eyes” and “rocking” helps me realize what I’m doing. I also jump up and down when I’m excited, but I’m trying to remember to stop that. Every once in awhile, I’ll chew on my shirt, too. Usually that’s because I’m anxious about something. Remind me that I’m doing it, and I’ll stop. My mom thanks you!

I’m also not super coordinated, part of my issues with motor planning and fine motor skills. Gym is hard for me. I run awkwardly and slowly, and my hand eye coordination leaves a bit to be desired. For that reason, I don’t love sports, which sets me apart from my peers. I do Tae Kwon Do, though, and I love it. I know that it’s not ok to demonstrate it in school, however.

I’m learning still to deal with frustration and failure, as I know a lot of my friends are, too. I’m getting better at it. Before, I wouldn’t want to even try something if I thought I would fail, but now I usually will try at least three times before I get frustrated – and sometimes even longer than that!

If I don’t answer you right away or am in my own world, touching me on the shoulder and saying my name reminds me to stay in the classroom instead of thinking deep thoughts. It’s the best way to get my attention. 

I’m excited to be at New School and in your class this year, and I can’t wait for it to start. Please be patient with me, and when I’ve done something wrong, if you can explain what I did that was wrong, that will help me, as I don’t always know why I got in trouble, just that I did something I wasn’t supposed to do. 

Sincerely, Mister Man, 3rd Grade

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.

Through My Child's Eyes

Tomorrow, Mister Man is making his First Holy Communion tomorrow.  Instead of getting ready for the party we're hosting here afterwards, I spent part of this morning going through some of the items that are slotted for the wee ones' memories boxes but haven't yet actually made it into them for some unknown reason (read: my husband hasn't gotten them off the very high shelf where they live).

I found this portrait of me that Mister Man made two years ago when he was in kindergarten.  It was for Mother's Day, and I remember how proud he was to present it to me at the tea held at his school.  We had a lovely afternoon, and all the kindergartners were so sweet.

But it's this portrait that keeps drawing me back.  It's always so interesting to me to see what children see when they look at people on a daily basis.  What is it that they remember and that sticks out to them?

I love that he ensured I had brown, curly hair.  Because at the time, my hair was long and curly.  While I've since cut it - significantly - and typically keep it straight now, this was a good representation.  And it's so like Mister Man to not have it be as long as it should be because he was afraid to color on the shirt because that might be against the rules.

The necklace is also very fitting.  I'm sure there were limited colors available - and I'm also sure that Mister Man chose every single purple bead that he could because he knows that purple is my favorite color.  Given how evenly the shirt is cut, I am certain that the teacher created these and simply handed them to the children, which is why the shirt is yellow.

There were things that surprised me.  I noticed for the first time today that Mister Man drew earrings on me.  I wear earrings every single day.  In fact, my earrings are generally the same ones each day, favorites that go with everything.  Interestingly, the earrings Mister Man drew look nothing like the ones I wear, but how would a six year old know how to draw diamond hoop earrings in Crayola marker?  I don't think I could do that.  Actually, I know I couldn't.  I have zero artistic talent.

And though he added many details - from the eyebrows to pink hearts on my cheeks (I'm guessing that was suggested by the teacher?) to the multitude of eyelashes, the details weren't exactly spot on.  I only wish my eyelashes were that long and thick.  Yet there is one error.  Mister Man gave me green eyes.  My eyes are blue, a very light blue actually.  And that has me thinking.

Do kids not pay attention to eye color on a regular basis?  Is the fact that Mister Man doesn't look in my eyes because of his autism play into the fact that he doesn't know what color my eyes are?  Did he color them green because he has hazel eyes (green is the closest approximation in marker) and wants to be like me?  Or did he just flat out forget?
Either way, this is a portrait I'm keeping.

Los Angeles Doesn't Exist

So do you remember when I talked about how Mister Man's teacher didn't do the best job correcting his math homework? I let it go because Mister Man needs to learn that people in authority aren't always right, and really... in the grand scheme of things, it isn't that big a deal. He was fine with it, and I chalked it up to a bad teacher book, though it wasn't the first time it happened.

Last night, we received his Daily Five (little bits of practice work students spend 5 minutes working on each day in school) for the past week. As always, I looked through it to see what I need to work on with Mister Man. And my jaw dropped.

The possessive correction? Meh. Yes, it should be "Mr. Tyler's" but it was a little hard to see where he put the apostrophe. It almost looks like a comma for the sentence above instead of an apostrophe in the sentence he wrote. He needs to work on his penmanship, but fine motor skills are one of his challenges common amongst those with autism. That's part of why he's in private OT once a week.

Ditto with the correction of "two." I can see that he wrote two with a "w" and not just to, but the "w" is half into the o, so it's hard to see what he wrote unless you're really looking closely. Again, he needs to do a better job writing, and that's fine.

Sock? I totally get why he circled that answer. It's something that goes on your foot. It makes sense, but it's wrong. They're really looking for the more specific "footwear" answer, so sock was out. Categorization is also something that he struggles with sometimes due to his autism.

But ummm Los AngelOs? That's the one that threw me for a loop. Actually, it had me questioning my own spelling abilities. Maybe I've been spelling Los Angeles wrong for more than three decades (hush, I learned to write early).

Oh. Wait. I googled it. I haven't been spelling it wrong.

Less than two months left in the school year. Less than two months remaining. It's the mantra I keep repeating as I wait to hear whether or not Mister Man's petition to attend Little Miss's school is approved.

What are the words that throw you for a loop when you're writing?

Wordless Wednesday: White Belt

I wrote last month about how Mister Man was struggling with his behavior associated with his autism. I was having a really bad day, but much of it was exemplified by his attempt to move up to the "big kid" class at Tae Kwon Do.

It turns out that we got a chance to try it out for the remainder of January to see how he did once he got more used to it - as he told me later that he was very excited and nervous. On February 1, the owner of the studio asked him if he wanted to have a white uniform, and he about passed out from happiness.

I officially have a white belt in the big kid class. Even better? At last night's class he earned his first white belt stripe (they do it only for white belts to help them know where and when they are progressing, with four stripes required before promotion is even a consideration).

Failure Is Not A Four Letter Word

This has been a challenging school year for Mister Man. I've discussed before the fact that he's high functioning autistic, which has its blessings and curses. Social interactions is his biggest challenge because he just doesn't get why so many things matter - and he frequently doesn't read the clues. As he's getting older in school, it's beginning to set him apart more, and he's no longer so oblivious enough that he doesn't notice that he's being treated differently.

We've been having a lot of discussions about what he needs to do differently - waiting for the teachers to give directions on the work because it isn't always what he thinks it will be or making sure he's using his best handwriting and not making it silly writing. I've learned to be careful in those conversations because he so easily shuts down.

I've been hearing from his teacher that he's rushing through his work so he can read and that when he has to redo his work because it's sloppy or wrong or didn't follow directions, he resists and the work comes back still not where it should be. When I talked to him about it the other night, I was able to get him to open up a little about it. He told me that when that happens, it makes him feel lonely in his heart.

"Lonely in my heart" - that's a phrase to break a mother's heart. As I hugged him and talked about what it really means to redo your work and why his teacher asks him to do it, I searched my brain to understand where this came from. I explained that he's a smart kiddo and that means his teacher expects a lot from him. When he doesn't meet expectations, she will ask him to do what she knows he can easily do. When he's rushing, he's showing a lack of pride in his work, and he isn't showing her that he knows the material. If he doesn't learn the basics to create a strong foundation, then he can't move forward to learn the more complicated - and often more fun - things that he wants to learn.

It seemed to sink in a little bit because he does want to learn and he does want to please. It slowly dawned on me that the things he rushes through and the things he claims he "hates" in school (ahem, writing) are the ones that are the biggest challenge to him. They're the things that don't come easily to him. As I pointed that out, he nodded slowly.

But Mom, when I do those things, I fail lots of times, he explained.

Oh.

OH.

Ahhh, failure, my friend. I lived a lot of my life not wanting to fail. It kept me from things I wish I had tried or done. I don't want the wee ones to live that way.

I took a deep breath and looked at him. What does failure mean to you? I asked him. What does it mean to fail? Why do you not want to fail?

And we had a most awesome conversation after that. We talked about how what's important in life isn't doing things perfectly. It isn't about getting 100% on every test. It isn't about being the fastest and the smartest and the "best" at everything. Failure is what happens when we try and things don't work out the way we want them to, but there's no shame in that. Instead, we need to take pride in our effort, knowing that we did the best we can, regardless of the results. And if those results weren't quite what we wish they'd been? Well, we have a great opportunity to take a look at what we did and analyze it to see how we can improve upon it.

We walked through some of the great figures in history and mistakes they made - though still they are so highly regarded and had so much of what so many people consider to be success. Thomas Edison. Albert Einstein. Marilyn Monroe. Vince Lombardi. There are so many examples out there. And he started to get it. I think.

We talked through how he doesn't like the things that are difficult for him and how that's been a trend for much of his life. My child who I cannot get to put down a book used to hate reading. My free-wheeling child used to hate bike riding. And on and on. Once he practiced and gained some expertise, many of these things because his favorite activities. The light bulb grew a little brighter.

And then I went to the gym where Pandora played Pink's "Less Than Perfect" as I was running. With little else do to, I listened to the lyrics, really listened. And I almost started crying in the middle of the gym. This is the song that explains it all. No matter what, you're perfect to me. Through all the wrong turns and bad decisions and and mistaken by others, you're perfect to me.

I found a clean version of the song and played it for him last night. I made him listen to the lyrics - especially the ones discussing the negative self-talk and not looking for critics - and we talked about how everyone often feels this way. We reiterated that there is no perfect, but that instead we do what we can - and that no matter what, he will always, always be perfect to me.

Because failure is not a four letter word. If we don't fail, we aren't trying. This conversation isn't over with him. What we've talked about doesn't fix everything, but it's a start. I had no idea he felt so strongly about failure already at eight years old. How does your child feel about failure?

PS I'd link to the video, but a) explicit lyrics and b) some disturbing imagery. But if you haven't listened - really listened - to Pink's "Less Than Perfect" I strongly suggest you do.

Also, I'm giving away a $25 American Express gift card. By entering, you're helping me out, too. So... would you? Who can't use an extra $25?

He Doesn't See The Clues

Did you know that I'm really shy at heart? While I love hanging out with friends and talking to them and spending time around them, I always feel a little shiver run down my spine when I have to approach a large group of people I don't know - or don't know well. It's that reaction of a new girl walking into the high school cafeteria again.

I know what to do, though, and I generally do it well. I know what the situation calls for. I pull my shoulders back and lengthen my stride. I look directly at people, choosing when and where I'll make a good entrance into the conversation or group. And then I have fun. I turn on that extrovert portion of my personality and make it work for me. And I enjoy it.

Then I'll go home and just look for quiet. I'll enjoy sitting by myself and reading a good book. I need to take the time to recharge and gain the energy that I'd spent around all those people so I can go do it again. That doesn't mean that I don't love to entertain and spend time with people - I absolutely do. It just takes energy I need to replenish.

Fortunately, depending on the situation, there are different traits needed, and I adapt. So do most people. While we may tend to be either more introverted or extroverted, we can still pull out the qualities required from other personality traits to - for the most part - succeed in each of those situations.

Yesterday in church, we said the Our Father, as we do every week. At the end, everyone lifts their linked hands. We all lift them to about eye level, bending our elbows to keep it comfortable. As I looked down at Mister Man, He had his hands lifted as high as they go, his shoulder scrunched up. It's a little thing, but it's something that sets him apart.

I talk a lot to him about using the clues of people around him to help him in social situations. When he talks about something he's interested in, he walks. He doesn't pace or walk in circles or anything so regular. It's almost like rocking but not in place. It's really hard to talk to him when he's doing that, as he's frequently not facing the person he's talking to - and thus unintelligible. Or he's playing with children and as they approach that invisible line, all the kids back off, but he doesn't notice and continues until way after that line is crossed.

He misses the cues, sometimes the big ones and frequently the small ones. And my heart aches, not because I need or want him to be the same as everyone else around him, but because it separates him from his peers in a way that makes his path harder. He gets frustrated because situations don't work the way he wishes they would but doesn't understand that much of the reason for this is his inability to to adapt his personality to the situation at hand. He is oblivious to the cues around him, and that keeps him from being as happy as he deserves to be.

Is it better to be an introvert or an extrovert? No. And I mean that - it isn't better necessarily to be one or the other, but we all need to be able to take bits and pieces of other tendencies to get us through life. But how do you teach that?

In the interest of full disclosure, this post was inspired by the book "Quiet" by Susan Cain as part of the From Left To Write book club. I received a copy of this book as part of the book club where we write posts inspired by the books rather than reviews of the book. I received no compensation, and all opinions remain my own.

Yes, He Really Is Autistic

Thursday was not a good day. It started off all well and good, but by the end of the day - for the first time in my parenting history - I was alone in my bedroom sobbing. Things just hit at the wrong time.

Mister Man is autistic. He's very high functioning, and he attends Catholic school with no support, but he's still autistic. That's why I pick him up to take him to twice weekly therapies. And yes, when he's playing or when you observe him long enough, it's obvious that he's "different" from the other kids. Most of the time, I can, unconsciously perhaps, pretend that all is well and that maybe he doesn't truly have autism. He does.

Thursday afternoon, I got an email from his teacher. His teacher doesn't like email and only sends email if there's something brewing. Apparently he's been "making decisions that are having a detrimental impact on his ability to do his work effectively" although there was no other specific information behind that. He also had disappeared on the way to Mass on Wednesday, then jumped out from behind a pillar to scare his teacher on Wednesday. The teacher had provided him with a life learning lesson (part of their discipline) to talk to me about, but he had failed to do so. And Thursday a boy at recess took a ball he was playing with, so he had started hitting the child. Repeatedly. He spent time with the assistant principal and was told he was staying in for recess on Friday and perhaps again today.

I had thought the new year was going well. On Tuesday, Mister Man came home so excited because he had earned four tickets (rewards for outstanding "something" - generally behavior) that day, something he had never done before. Wednesday, he hadn't earned any more tickets, but he told me it had been a great day and went into detail about what he'd done and who he'd played with. Apparently not. The email burst the bubble of my day. We have talked to him more times than I can count about how he is not allowed to hide and try to scare people because - as part of his autism - he doesn't get when it's ok to do that and when it isn't, so most of the time he tries it, it's an inappropriate time or place. And he isn't a hitter. He's never been a hitter, but this year, behaviors like this are coming out, and I don't know where they're coming from.

That afternoon was also to be Mister Man's first day trying out the "big kid" class at tae kwon do. His dojo has two programs - a little kid program where they start at five years old and learn a lot of the basic moves and the first form, but also start to learn to listen and follow directions well and begin to develop a sense of responsibility before moving to the big kid class at around age 7, once they've completed the "black belt" and all its stripes in the little kid class.

When Mister Man tested for his black belt in the little kid class early this summer, there were three kids testing with him - two moving to a red belt, the belt below him, and one moving to a black belt with him. At the end of the test, the instructor asked the other black belt if she wanted to move to the big kid class because she was ready. Mister Man wasn't even though he's eight. He's had all the stripes on his black belt since mid-October, and still the instructor waited. Her goal was to move him over with two or three other students at the start of the new year. Now.

And so he had his first class in the big kid room on Thursday. It was a standard class, plus him, a brand new student to tae kwon do who was obviously younger than him, and a child who is a purple belt (two below where Mister Man is) with only a couple stripes there. As I sat and watched the class, I could feel the tears gathering in my eyes. He didn't belong there. When the class did kibon - the first form that they learn, and one Mister Man has known for over a year now - he was moving in one direction by the end of it while the entire other class was moving in another. He didn't have the strength still to keep his knees bent while standing in various positions and awaiting instructions. Between punches, he would have his arm almost straight up in the air, looking around him - even after an instructor would walk to him and manually correct his arm position. His kicks were less kicks and more a foot swatting at something near his ankle, again even after an instructor demonstrated specifically for him and worked with him on them. And when they played the "belt game" at the end of class? That was the worst. Each child was given two very short white belts, which they were told to tuck into their existing belts - picture flag football. Every child did as instructed, except Mister Man. He removed his belt - the only one to do so - and tried tying the short belts, which didn't work. Then he tried wrapping the belts, both of them at once, around his waist and putting his original belt atop it. The instructor eventually had to come and fix all his belts for him. If he had the awareness to look around and see what the other kids were doing, he could have saved himself this. But looking around and seeing what others are doing is essentially his problem - he doesn't have that instinct or understanding, and my explaining it to him does nothing.

As the students exited the class at the end, the owner stopped the purple belt. She handed him the new uniform for the big kid class and told him he was going to those classes from now on. Mister Man wasn't handed a uniform. She told me that she would talk to the instructor of the big kid class to get his feedback. But really, I knew. By the end of the class, I knew what the response from the instructors would be. He doesn't belong in the big kid class yet. He needs to return to the little kid class - the only child there who has his black belt with all the stripes. He doesn't need to gain any more skills there, but he needs to continue maturing. And that breaks my heart.

As I climbed into the car, I was already fighting back tears. All I want for my children is for them to find what they're good at and to be happy. Mister Man adores tae kwon do, and he was so excited to move to the big kid class. Except that he isn't, but when I asked him, he had no idea that he'd done anything that didn't warrant him staying in the class. Instead, I had to prep him that maybe he would have to wait a little longer and tried to give him some examples of why.

What's so frustrating for me is that he is almost a completely neurotypical kid. He's so close to fitting in and getting it, but yet he doesn't. He's a smart little cookie and as sweet as pie, but there are things that he just can't do, but because he looks and acts so "normal" most of the time, everyone raises their expectations. Coupled with the issues at school, my expectations were fully dashed, and I was crushed.

As we drove home, he told me about what had happened at school, too. When the child took the ball, his first instinct was to hit. He didn't ask the child for the ball back. He didn't involve a teacher. He didn't walk away. All the social stories we work on about what to do in various situations flew out the window, and instead he hit the child. In my head, all I could hear was "What more can I do?" ringing over and over. And for that moment in time, I had no answer.

When we got home, my mom was just arriving with Little Miss. My mom blew off my concerns of the tae kwon do after a sentence with an essentially "oh well" type answer. And then there was a misunderstanding over her pronouncement that Little Miss's coat was dirty, and my mom refused to tell me the story of why it was dirty. And then she tossed out a catty, "When I make a commitment, I keep it" - something I knew was a dig directly at me.

And my day was done. Fortunately I'd prepared dinner for the wee ones - although it hadn't finished cooking when I had to leave for tae kwon do, so in desperation I had put it in the oven on a timed cook in the hopes that it would be done when we arrived home. Check it out. Another failure on the day on my part. I put the dinner on the table for the wee ones and excused myself, something I've never done before. I couldn't sit with them. I couldn't eat dinner. I was just done.

And for the first time in my life as a parent, I went upstairs and closed myself in my bedroom and sat on the floor to cry. I was absolutely and 100 percent feeling sorry for myself, but knowing this didn't change it. I was so frustrated and so ... done. It seemed that no matter my efforts, nothing I was doing was the right step or the right path. By the time the wee ones had finished dinner and started getting themselves ready for bed, I was able to face the world again. I wasn't happy by any stretch, but I could at least give them their requisite hugs and kisses and tell them I loved them before again retreating to my bedroom for some solitary - because my husband wasn't home yet, of course - self-pity time.

On Friday, the day dawned bright and sunny. And the good news is that it was a new day. A different day. Nothing had changed but me. I had a good discussion with Mister Man about what he needed to do when he stayed in for recess, and I braced myself for what the instructor would say on Saturday when we went in for our tae kwon do class. I talked with Mister Man with the understanding that Wednesday and Thursday had been really hard days in school and that might have led to some of his issues with the new tae kwon do class. I learned that he was really excited about trying the new class and that he was also very nervous. Put all that together with an autistic child, and of course you have a recipe for disaster. I prepped him that he might have to stay in the little kid class for a bit longer, but I also explained that he could show maturity in talking to the owner and telling her what he had told me, which might grant him the opportunity to try the big kid class again.

Thank goodness for sunny days. Thank goodness there's always the dawning of a new hope and another try. Thursday is not a pit that I want to live in, nor could I. Because yes, Mister Man does have autism. And I can't forget that. That was my problem - pretending in my head that everything was "normal" when it wasn't and can't ever be. And that's ok.