IEP

Day 21. T is for Teachers and Therapists.

Jaycee KempLeave a comment

Day 20 2016: T is for Teachers and Therapists

Running through Water

Day 20

Day 20:  T is for Teachers and Therapists

97. A2 has had a total of 97 teachers and therapists in his short 9 years. Some were hand- picked….some chosen by fate and luck of the draw. Some were published…lauded recognizable names….some were quiet presences of whom I cannot remember their names. Some have been with us for the majority of his life. Some have only jumped in for a blip of time in his almost 80,000 hours on this planet. Some were stellar….life alterers….some just showed up because they had to. Some interpreted my coolness or seeming indifference to them as being non-caring. Some recognized that I always had my child’s best interest in mind all the time and understood it was important for me not to be too attached for fear of losing perspective and not holding them accountable should his learning derail. All have had a permanent impact…

View original post 228 more words

Day 18. R is for Relationships

Jaycee KempLeave a comment

Day 18 2016: R is for Relationships (originally posted 4/2015)

Running through Water

Day 18

“Are you sure he has Autism? He’s so friendly…”. While there are more nuanced aspects now to the criteria, failure to develop peer relationships appropriate to developmental level is one of the defining and most obvious diagnostic identification for children with autism. Interest in people in general, desire for friendships and loving behavior can muddy the diagnostic waters and confuse people about what autism is and what autism isn’t. Disconnectedness, aloofness and lack of desire to be touched does not always translate as a lack of desire for relationships. The desire is there, the understanding for how that happens is not. It can just be easier to be by yourself. A1 can tell you that. Indiscriminate friendliness, hugs and kisses to those he loves and the compulsive desire to be around a lot of people doesn’t always coexist with developmentally appropriate social skills. A2 probably would tell you that part…if…

View original post 217 more words

5 Pros and Cons of IDEA: What Every Parent (and educator!) Should Know

Jaycee Kemp2 Comments
IMG_4868
This tower is 4 years total of educational paper work for 2 kids and represents approximately over 300 hours of meetings, evaluations, reading and combing over data….JUST AS THE PARENT

I is for IEP, IDEA and Inclusion.

These three “I” words have forever changed me as a person.  If you have a child in special education, you probably just had a shiver run down your spine just by reading those acronyms in print and may be thinking the same thing.  All of these things serve as a blessing and a curse to our kids…and also to the educators and administration serving them.  Back in the day, the Individuals with Disability Act (IDEA) was enacted to refine and replace what few laws there were to protect children with disabilities within the education system.  It was meant to also focus more on the individual rather than on the disability itself.  IDEA has been re-written several times since 1990.  There are several things it does both in a good way and also in not such a good way:

  1.   It provides a free and appropriate public education (FAPE) to all kids regardless of disability at public expense.  The key word here being APPROPRIATE. The downside: There is a pretty decent chance that what you and your child’s test scores say and what you know is appropriate will be very different than what the district thinks is appropriate.  And most likely because of that other key word….FREE.
  2. Evaluations:  This law makes sure that children with disabilities are evaluated in a way that makes sense.  We don’t want to use one specific test to decide if a child needs special education services.  That way  discrimination is prevented and ideally, these evaluations serve as a tool to know exactly what they will need educationally. The downside:  Evaluations are only as good as the people trained to administer them….and only as good as the educator who can recognize an issue in the first place.
  3. Individualized Education Program (IEP): These are legal documents that establish goals, accommodations and modifications to the general curriculum and access to qualified professionals to ensure that a child with a disability is learning at the right pace and to his ability within their environment.  These plans level the educational playing field for those with a disability.  The heart of special education.  There are 13 categories under which a child may qualify: specific learning disability, speech and language impairment, blindness, deafness, hearing impairment, visual impairment, orthopedic impairment, traumatic brain injury, autism, multiple disability, other health impairments, emotional disturbance, intellectual disability,  The downside: Because they are legal documents and may be audited and are monitored on a quarterly basis, educators may have a very high self-preservation incentive to make certain your child is meeting his goals….at least on paper.  The more savvy the parent, the more tricky this can become.
  4. Least Restrictive Environment (LRE):  This ensures that your child is placed in an environment that meets his needs as independently as possible in an educational setting that is appropriate for him.  The goal is to work toward the LRE.   The downside:  For those of us with kiddos with Autism, this is not always cut and dry.  Especially those who are cognitively intact but perhaps have a language impairment or another issue which may stand in the way of independence.  An emerging issue in the field is for those kids who are considered “twice exceptional” such those who are intellectually gifted but with severe behavioral issues.  And what does “least restrictive” mean anyway?  My kid who needs 1:1 to learn can totally sit in a regular classroom to do that.  However, I believe my district interprets LRE to mean that he be in a contained classroom without a 1:1 because then he might have more physical independence in that room.  Who is right?
  5. Protections for your child…..protections for you as a parent:  Because of IDEA, there are procedural safeguards in place to make certain that your child is receiving the services the school says they will provide and a protocol to follow if you believe they are not.  Additionally, these protections allow for parent participation and child participation as an equal member of the child’s school team. The downside: Let’s face it…if you are not an educator…or even know where to go to get what you need, you will never be an equal member of your child’s team.   Procedural safeguards and parent participation are ultimately only as good as the questions you know to ask, as your attorney and your bank account.  The catch-22 if you do live in a very good school district?  There is a good chance that anything that goes to due process is going to take a LOOOONNNNNGGG time.  And think about that for a second.  If there is a FAPE violation and it works its way all the way up to a due process hearing doesn’t that seem counterintuitive for your school district to allow little old you to go to court with them?  Wouldn’t it make more sense to fix the problem as it would be much cheaper and less time consuming to do so?  It’s not.  At least not to them.  Because no matter how much the school doesn’t want to throw money at something they can still probably afford to pay a better attorney for much longer than you can.  And besides…the year and a half it could take…perhaps that child won’t need what it was you were asking for by then…or make your life complicated enough that you will break and succumb.   That seems like a pretty good gamble for a district.  And then it doesn’t set a standard for other families to ask for the same.

The last 25 years have been interesting ones for the education system as a whole.  When the parents who walked before us clawed and fought and struggled for these laws it was at a time before the internet, before all the revisions, before standardized testing existed in the way it did, before No Child Left Behind and before Autism was 1:68.  IDEA is necessary no matter how you slice it, however it exists in a very different system than it did in 1990.  At this point I know a lot of the law like the back of my hand and the parts I don’t know I am now educated on how to find those rules.  I have a list of socio-emotional goals for almost every developmental issue at my finger tips and I have an entire community of people going through the same struggles I am at the click of a button day and night.  All of this has been achieved through this tiny-huge world we have online.  I know exactly the gap closure between special education kids and regular ed kids not only for my district, but for my school.  I know the 6 payment tiers that exist and the formula used to calculate how much extra funding my district for each of my kids for using special education services.  I know what belongs where on all 13 sections of the IEP and how to make a goal measurable. And I know when I am being BS-ed by my district.  I don’t know all of this because of my training…I know it because I live in 2016 and any parent with a computer and the desire can learn the same.   In 1990, my school district certainly was not expecting 1 out of every 6 children attending (or 15%) to have some sort of developmental disability….or for the Autism rates to be 600% higher.   My child’s elementary school currently has about 700 students and about 100 IEPs (last I heard)…all while serving about 29% of their students as English as a Second Language with limited proficiency.  Teachers are stretched thin. Inclusion and LRE are so important for our kids future, yet most regular education teachers were not taught the basics on how to include and teach special ed kids in differentiated instruction or how to manage a classroom where there are multiple children with conflicting accommodations. (ie:  When Johnny gets stressed, he can crumple paper…but Jimmy’s auditory sensory integration issues make it impossible to keep it together when he hears paper crumpling….).  Parents are communicating, educated and knowing the legal hoops to jump through if their children’s rights are being violated.  It is a system that cannot hold itself up and still serve our most vulnerable children to be the most successful they can be.  Parents…please keep fighting for your kids….keep learning everything you can.  Educators…please do the same.  I do not have the answer….I am just hopeful it is found before my children have to move on from the “protective bubble” of IDEA and there are no grown up IEPs.

Day 4 2016: D is for Diagnosis

Jaycee KempLeave a comment

IMG_4731

D is for Diagnosis

By the time my oldest was 18 months old, I knew he had Asperger’s….but no one else seemed to know except for maybe my husband.  He spoke like an adult yet seemed confused whenever anyone asked him something directly.  (“He’s a genius!  Listen to him talk…he’s just busy thinking about other things”).   At Mommy-Tot class while all the other babies would watch with wonder as technicolor bubbles floated by, he was finding his way across the gym to open and close the door over and over. (“He’s a genius!  Bubbles are beneath his intelligence!”) And yes, he loved to go to the park….but would decide which park based on what kind of public toilet was there and then would spend the majority of his time in said toilet if allowed….and I would often have to threaten him with a consequence if he didn’t go and play (“He’s a genius!  He’ll be an engineer one day…he just wants to know how it works!”).    While he also never hugged or kissed me, he would let me do it to him.  I said “I love you” any opportunity I had but he never said it back.  He would let me sit down to play with him, but his back would soon be turned and he was playing on his own again.  His conversations often consisted of repetitive phrases over a video he watched over and over for months at a time.  The list could go on and on….but the fact was that he was not particularly disruptive, he was functional and he was so cute and tiny and spoke so well people mistook him for a quirky genius.   What was difficult is that we lived far from family and friends so when they saw him for brief periods they would just tell us we were worrying too much.  They would see the quirk for a few days at a time….not hours on end like we saw.  So when my youngest got to be about 8 months old and clearly had serious medical issues all concerns we had about A1 went to the way side.  My concerns were still there but again were also pushed aside by the pediatrician when I would bring them up (“Some kids are just persistent” “Drooling has just become a bad habit”)  It wasn’t until he was 7 years old that I had him tested and really, it was only because he was floundering at school.  I was being told that “some kids are average to below average”….the same kid just 2 years earlier everyone was telling me was a genius.  I had to see if he had a diagnosis in order to get him the assistance he needed at school…And sure enough….psychoeducational testing by a licensed psychologist showed what we always knew.  ADHD and Asperger’s Disorder.  A few years later I actually got a second opinion from another psychologist…and guess what….same outcome.  On standardized testing. Across settings.  Again.  He is definitely not a genius…but he is also definitely not below average.  A1 is the fall-through-the-crack kid.  His rigidity can be seen as defiance.  His poor social skills makes him look like a loner.  His attention issues make him look lazy.  And as the person who lives with him 24/7 I can tell you he is no more of those things than any 12-year-old.  He is a people pleaser and when he thinks he has failed at that he kicks himself over it.  Overall, A1 is going to be fine….but I believe it is because we have recognized the thing that makes him different…but not less.

A2 was not diagnosed until the age of 4 despite my husband and I and everyone around us knowing something was very wrong.  What was troubling was that when he turned 6 months old and I started him on solids…everything else stopped.  Except for the worst constipation I have ever witnessed.  He stopped growing.  Stopped.  Completely.  At one year he was about the same size and weight as he was at 6 months old.  He stopped developing but did not lose any skills.  At 12 months he was the same adorable little nugget he was at 6 months.  Was it possible I willed him to stay an infant?  What also did not change was his inability to stay asleep for more than 90 minutes at a time.  Down for 90…up for 2 hours.  This went on for 2 years and one day I got the flu and was out of commission for 10 days.  I had to let my husband get up with him through the night.  When I got out of those sweaty sheets after 10 days….it occurred to me that I was not clinically depressed as I believed I was up until that moment my body became an achy, hot mess….I instead emerged a new woman.  A rested woman forced to sleep by a virus.  A2 had already been diagnosed by a fresh muscle biopsy at the Cleveland Clinic with Static Encephalopathy with Mitochondrial Dysfunction….we got a scary letter to take with us everywhere we went.  We were told not to let his blood sugar drop too low.  We were told to keep him cool in the summer.  We were told to have a very low tolerance for fever and dehydration.  We were told he had an uncertain life span.

At about 2 years old when he started crawling he found that rubber stopper thingy  behind a door. Thhhhwwwaaaang! He’d whip his head to the side and roll his eyes.  Thhhhwwaang again.  Again with the head thing and eye rolling.  I remember my heart dropping to my stomach.  I remember thinking “oooohhhhh shiiiiittt”.  I knew that was a stim (self-stimulatory behavior). For the next 2 years I watched A2 develop at 20% of the speed of the rest of his peers.  He went from being the most social baby of the group and as his peers developed speech I watched him realize he was not part of the group…to standing by the group and watching everyone play….to standing out of the group and not paying attention to everyone.  To this day I believe it is not because he didn’t want to…but because he knew he couldn’t.  He flapped.  He screamed.  He stopped eating all solid food. He had no language other than the vowel sounds of babbles of a young infant.  But he was still sweet, and loving and laughed heartily.  He was finally diagnosed at 4 years old with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).  The diagnostic version of “your kid has Autism…mostly…”.

What’s in a name? Autism, Asperger’s Disorder, Pervasive Developmental Disorder Not Otherwise Specified, ASD, HFA, On-The-Spectrum, Neurodiverse, High functioning Autism, Severe Autism, Non-Verbal Autism.  You may have heard any and all of these used when hearing about someone who has Autism Spectrum Disorder (the now official diagnosis to describe all of the above as of 2013).  We will likely intuitively still call Autism all of these terms because as we have all heard “if you meet one person with Autism…you have met ONE person with Autism”.  The criteria was narrowed and Asperger’s and PDD-NOS were eliminated from official diagnosis.  In my private practice as a therapist, I now see children who come through my office with a list as long as my leg (I’m only 5 feet tall, but you get the picture).  Oppositional Defiant Disorder, ADHD, Sensory Processing Disorder, Dyslexia, Social Pragmatic Communication Disorder, Bipolar Disorder……all in one child.  Why??  Because we have eliminated Asperger’s Syndrome from our vernacular.  My children have both been reclassified as Autism Spectrum Disorder (as they are supposed to be due to consideration of prior history and diagnosis).  But they could not be any different.  With hard work that would make your head spin and a hard-core bitch of a mom they continue to improve in terms of working toward being independent, contributing members of our community.  But they could NOT be any more different.  This is autism.

Day 2 2016: B is for Behavior

Jaycee Kemp4 Comments

IMG_2885

B is for Behavior

All behavior serves one of 4 functions:

To gain attention

To escape a situation

To gain access to something (usually tangible)

or

A response to an internal stimuli such as hunger, illness or exhaustion.

Seriously.  Just 4 reasons anyone does anything.  Think about it–you won’t come up with a 5th. I have tried.

Of course, if it were that simple we would all live in harmony.  However, there are some times it gets tricky.  For instance, when a behavior is triggered by something internal, it can be incredibly difficult to identify.  So if a child with autism likes to clap his hands near his ears is it because he likes the sound?  Or is it because he likes how his hands feel when he claps them together?  Or is it because it creates a little wind near his face which he likes?  To make matters even more complicated…a behavior can change function midstream and without warning.  So that same kid who liked hearing the sound of his own clapping next to his ear and his parent rushes over to him and holds his hands and tells him “stop!  Lets play instead”….her reaction may have just inadvertently changed the function of the child’s behavior from internal reasons to external. Perhaps it becomes a great way to get his parents’ attention now too.  Such is the nature of human existence…including humans on the Autism Spectrum.  It is easy to judge others without understanding when looking at their behaviors through our own lenses.  So next time you see a child having a tantrum in public or seems out of control, bear in mind that the function of his behavior may not be attention like you might be used to from a bratty kid. He may be responding to sensory overload and needs to leave or perhaps if you hang out long enough you may come to find it may be screams of joy because he has no other way to express it.

Autism Awareness Month. T is for Teachers and Therapists.

Jaycee Kemp1 Comment

Day 20

 T is for Teachers and Therapists

112. A2 has had a total of 112 different teachers and therapists in his short 11 years. Some were hand- picked….some chosen by fate and luck of the draw. Some were published…lauded recognizable names….some were quiet presences of whom I cannot remember their names. Some have been with us for the majority of his life. Some have only jumped in for a blip of time in his almost 105,000 hours on this planet. Some were stellar….life alterers….some just showed up because they had to. Some interpreted my coolness or seeming indifference to them as being non-caring. Some recognized that I always had my child’s best interest in mind all the time and understood it was important for me not to be too attached for fear of losing perspective and not holding them accountable should his learning derail. All have had a permanent impact on my entire family’s lives and for all of them, I am grateful.  When reading this post today–please help me help a few whose lives are difficult right now–Debbie Jo Pierce (pictured above) was one of the first paraprofessionals to work with A2. She has given most of her life to helping others and is ill with cancer leaving her unable to work and without income. Please consider today to donate to a Gofundme account started for her to help ease her burdens. Also, if you are of the praying sort, please like the FB page for Pray for Rachel. Lauren Sullivan, a favorite home team therapist of A2 15 year old sister Rachel is in Nationwide Children’s Hospital being treated for cancer. Rachel is her heart and soul –a child of strength and character. I am only one person–Christmas gifts and thank yous always seem so trite in the face of what we ask of the professionals who help us. Can you help make an impact for 2 of them today?

**This post has been updated since the original post  in April 2015, Debbie Jo passed away..taken too early in this world, yet someone must have felt her job here was done….and what a job she did in a quiet world where her time impacted so many.  Rachel Sullivan has made a full recovery and is enjoying school, family, sports and her community.

Autism Awareness Month. O is for Obstinate.

Jaycee Kemp1 Comment

Day 15

O is for Obstinate

All kids can be defiant. All kids can be persistent. Most can be both at one time or another…..however the persistence of a person with Autism can sometimes be far outside typical willfulness of even the most obstinate of kiddos. Most of this stems from intense need for familiarity, order and sameness of routine. This rigidity is part of the diagnostic criteria of Autism Spectrum Disorders. Sometimes I have no idea what will trigger A2 into a 3 hour long battle of wills. What can be a 5 minute routine one day can take 2 hours the next even when he knows that routine ends in something he enjoys. A1…no matter how much punishment, berating or time outs he got, he would get right back up and do the same thing over again. One summer I decided to ‘put my foot down’ and send him to the time out step after every single infraction.  No warnings.  That should teach him!  After about a week of this, there was a day that I had sent him 17 times all before my husband got home from work. And he went willingly. Every. Single. Time. Something was very wrong and thankfully I had a moment of clarity.  I got a clear cup, drew some lines across it and found a bag of marbles.  Every time I caught him doing the right thing, I would throw a marble in the cup with the caveat that he couldn’t point out to me how good he was being. Unless he hurt someone (which he never did), there was no more time out step. Every time we filled the cup to a line, he got to pick what we did next in our day.  If we got to the top (by the end of the day), he could get a dessert after dinner.

Just. Like. That. Everything was different. He would listen the first time and look out of the corner of his eye to see if I was digging for a marble. He got double marbles if he initiated social interactions. Before long, we were engaged in pretend play in the basement.

I had someone close ask “Don’t you think it might not be autism?  Don’t you think it is could be his personality?”.

“Well, ” I indulged “if everything we do serves a function, what function do you think his behavior served that week?”  Without much hesitation, she drew her hand up as if she was grabbing something and said “To have a ‘gotcha’ moment!” I thought for a moment.  “What 4 year-old would rather sit on a step over and over, day after day instead of playing just to get under his mother’s skin? Isn’t a week long enough to learn that without the behavior increasing?”  A four-year-old.  Clinically, that would be a much, much bigger issue than autism.

Before that, I used to joke about how even a dog can learn to salivate to the sound of a bell when paired with food over time, yet I could not get my child to understand how his behavior had anything to do with the consequence he would receive. It’s one of the most bewildering and frustrating parts of parenting because regular consequences do not work. Though A2 may connect consequence to behavior in the moment, the pathology outweighs all and it is likely that he may not learn from his behavior for the next time.  A2’s Childhood Apraxia of Speech required us to do drill work with cards for sounds and words over and over.  Did we create some of this rigidity with him because of this?  Probably.  Did I have any idea that would be possible then?  No. But the trade off was that he learned to try to speak and can make some needs known so that people other than me and my husband understand.  Was it worth it?  As a parent with limited understanding and resources  I would have to say “yes”, because he displayed rigidity before that.  Even as I add to this blog post from the original version written two years ago, I realize how much I have learned to even question if this was possible.  We have lots to continue to learn.

Autism Awareness Month 2015. K is for Kismet.

Jaycee KempLeave a comment

Day 11

In the month of our 15 year anniversary, I can confidently say we have embarked on a journey neither of us could have expected.

In some ways I wonder if our trek is easier than others since we never had musings of what our unborn children would be like or what kind of parents we would be.

…or if we would be parents at all….

I believe in a judicious balance between predestination and free will. Sort of like walking into a movie complex. You can pick the movie you will see, but once you choose it, the plot and ending remain the same. It is up to you if you decide to leave the theater to get popcorn or simply decide that movie is not for you and you should have never listened to Siskel and Ebert’s reviews to begin with.

All marriages require a gentle balance between cohesiveness and independence….and especially with families like ours. Stress is a constant, sleep deprivation a given, and child rearing? Well, throw out everything you ever thought you knew about that. Not everyone can do that.  Usually, the stronger is left holding the bag on their own.  I know too many families like that and watch in awe as the parent left behind carries the weight of her world.

Through thick and thin we give each other the space we need, recognizing we are in for the long haul.  Our children are who they are supposed to be.  We make the same mistakes as every other parent in every other union, but with the knowledge we must be united as forever parents, even long after we are gone.  And for that, perhaps we are luckier than most.