The Most Important Thing for Doctors To Know About Autism

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Anyone have a ________who works well with special needs kids?

                                   —every special needs parent on every local special needs Facebook page

Last year was the first time in A2’s entire life he got through a dentist appointment relatively unscathed.  Sure, at first he flapped and screamed and excreted that sweat stench he does as if he is a sea slug attempting to keep predators away, but ultimately Dr. Nate (not his real name)prevailed with him in the most awesome way.  A2 received the first x-rays of his entire life, full dental exam featuring the scrap-y, spinn-y and spitt-y things and actually left the office smiling.

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No one can resist the appeal of Dr. Nate *powders nose and reapplies lipstick*

That is the thing with ALL kids on the spectrum.  Once you crack the code on how to navigate around or through the anxiety, things tend to go a bit better.

Conversely, the same is true.  Once you REAAALLLY approach something wrong, the damage is done and it is going to take a hell of a lot to bounce back from armageddon levels of panic.

Apparently, Dr. Nate and his swoon-worthy dental practices on my autistic kid made more of an impression on me than we did on him because he didn’t remember his approach from a year ago. At our visit today, A2 was visibly panicking/attempting to act cool and Dr. Nate was taking a more gentle and cautious approach.  In a red carpet level performance, I loudly proclaimed I was going to the bathroom (office visits tend to go better when I am out of eye shot). Without skipping a beat, Dr. Nate said “Sounds good. I’m going to take a look here at A2’s teeth, but you’ll be right back…So…everything is OK.”

Dr. Nate…You know what to say to all the ladies….

Of course, I was standing right outside of the exam room door and I could hear him firmly reassuring my kiddo. I peeked in to see A2 standing in the corner with a toothbrush and the toothpaste from home and the dentist mopping up his face with gauze. When all was said and done, Dr. Nate said to me, “Can you come back in three months?  I think one lesson we learned is it’s best for mom to wait outside. I think next time, I will use a firmer, more direct approach, It seems to work best with A2.”

I thanked him profusely for his insight and patience. He replied “Every kid responds to something different and sometimes even from visit to visit.”

BAM.

Every kid responds to something different.  Even from visit to visit.

Yes, Dr. Nate.  You just summarized precisely how to to work with autistic patients. They are all individuals with individual needs and you must be aware of this at every visit.  And then you meet them where the are.

Pretty much just like everyone else.

While we are at it….a shout out to all the other doctors in our lives who got it too:

To the orthotist who met us in the back of our van for years in order to cast A2’s feet for braces

To the physical medicine doctor who immediately started using sign language while she talked to A2 when she realized he might not understand her words

To the hospital nurse who spoke directly to A2 to ask him his name, age and where he went to school instead of asking me right in front of him.

Medical anxiety is a serious issue for many autistic individuals. The sensory assault, the inability to clearly communicate and the fear of not understanding what comes next can be overwhelming to both the patient and caregiver.  We recently had a specialist appointment where A2 was tearful and fearful.  It was suggested we could move forward with the visit in one of two ways. 1. I could hold my 12 year old down by myself in my lap or 2. the doctor and two office staff could bum rush him and they could hold him down on the floor.

I wondered out loud what it would be like if while we were standing there talking and  out of nowhere two men twice my size came around the corner and held me down while a third approached me and I wasn’t sure what he was going to do. Boy oh boy….if I wasn’t worried about talking in the hall before, I sure would be from here on out!!

It may seem odd to many of us that a doctor’s office would not be equipped to handle their growing clientele of autistic patients, but really, physicians have a limited amount of time to spend with their patients and many of them have absolutely no specific training in disability. As parents, we take it upon ourselves to make certain we take all the precautions with all the details and do all the educating so an office visit goes as smoothly as possible.

Doctors. Take your lead from Dr. Nate. His approach holds the key to your best success with every one of your patients. Remember they are human, figure out what they need on any given day and then do THAT.  Us moms will take care of the rest…..

 

Allergies and Autism and Sensory Overload, Oh My! How to Make Halloween Inclusive

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The Grim Reaper takes a break to ensure his safety while the ill-prepared firefighter keeps his distance just in case

(originally posted 10/2015)

Though Halloween parties of my past are now called Harvest Parties at school, the anticipation of Halloween is still timeless. As a parent I find myself still caught up in  creating spooky Pinterest fails and contemplating what candy I can pilfer from my child’s treat bag without him noticing. Some costumes are so realistically scary that I am not certain that my red meat consumption hasn’t finally caught up with me and am opening my door to the actual Grim Reaper himself. There is a revolving door of Elsas and Harry Potters who could just very likely just be the same child over and over again capitalizing on those homes with full sized candy bars.

A couple of years ago I was coordinating a party for my child’s 4th grade classroom. 20% of that classroom had food allergies. I gently reminded parents that the goal was for all our children to be included, be safe and have fun. I was perplexed when one parent refused to change the cookie decorating idea she had. “Kids who can’t make or eat them can at least enjoy them for how cute they are”. In what I believed was a teachable moment I reminded her that it still excluded them and also created a potentially dangerous situation. This parent became so incensed that she quit the committee. While I still get as excited about Halloween as the next guy, I was horrified as one of those children was mine. Another parent was willing to not only exclude him, but risk his safety because she was so excited about her adorable cookie project.
Halloween has become the holiday where those children with differences become the most exposed and have the potential to be the most left out. The numbers of children with food allergies and other differences have risen sharply since I was a child. As a parent with kids with food issues and also autism, it took me many years to figure out ways how to adapt the most super-fun holiday so it was still fun. Turns out, there are lots of ways to do this both as parents and as community members.

Here are some of the top ideas for the “BIG 3” to make Halloween still the coolest holiday ever
1. FOOD ALLERGIES:

a. PARENTS: Sort out the candy together so you can help teach him what is ok to eat. Have the “SWITCH WITCH” visit later that night and exchange that bag of candy full of offending allergens with a present. Your child will be thrilled to have the best of both worlds. And hey, there is no rule that says the switch witch can’t give you that bag to stash away and secretly eat after the kids are asleep.
b. SUPPORTERS:  If you paint a pumpkin teal and have it on your front porch it will alert parents of kids with food allergies that you have an allergen alternative available. If you are planning a class party, ASK about allergens—be sure to ask about brand specifics and preparation—that can all play a role in safety. Please remember what it would be like to be 8 years old where everyone gets to eat really cool looking cupcakes except for you. If that were easy to do, none of us would ever be on a diet. The willpower of a child with a food allergy is like nothing most of us can ever understand.

2. SENSORY DIFFERENCES:

a. PARENTS: Respect your child’s sensory difference. If noise is an issue, avoid those homes that go all out for Halloween. Your child might be in for a “jump scare” that will end his evening of fun. Costumes are not always made out of the finest of materials. Have him choose his own and try a number of options until one feels right. Contact your local support groups for special needs—there may be sensitive Trunk or Treat nights available which may suit your child much better.
b. SUPPORTERS: Teachers and room parents—if you have children with special needs in your class, tone down the scary a bit. Spooky music should not be on full blast and the mulling around of 25 kids in costume might be disorienting. Have a quiet space outside of the classroom where the child knows he can go to escape if overwhelmed. And for Pete’s sake NO BALLOON POPPING ACTIVITIES OR STROBE LIGHTS!

3. AUTISM:

a. PARENTS: Create visuals to help your child understand what to expect at school parties or trick or treat. Try on the costume ahead of time. If your child does not want to participate in Halloween festivities, don’t force them. Throw a small party at your house with old school fun and invite 2 or 3 children he knows for trick or treating. Stick to familiar neighbors homes and buddy up with a child who can model. Sometimes “just a hat” IS a costume with enough thinking on the fly.

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Freddy Krueger as a child…before all the drama. He just wanted to feed everyone cereal and soup.

b. SUPPORTERS: If a child does not say “trick or treat” or “ thank-you” he may not be being rude. He may not be able to speak or fully understand what is expected of him. Same goes for a child who appears too large or too old for trick or treating. If a child grabs a handful of candy or doesn’t seem to know what to do when you hold the bowl out, give them a prompt of what to do or physically help them. Their fine motor skills may be impaired and the ability to just pick one or two candies from a dish might be difficult. Still compliment an aspect of their costume even if it seems incomplete. This is still their Halloween too!

 Those of us who try to make our kids feel included no matter what can get very good at scooping up the world around, tying it in a different bow and re-presenting it to our kids and Halloween is no different.  With the help of our community, little tweaks can make all the difference between Halloween being fun or being truly scary.

Autism and A Gun By Any Other Name

img_4970My brother and I were sitting on the couch chatting about politics last winter when I showed him a segment from the Daily Show.  It was a humor bit about calling a Wyoming elementary school to find out if they had a gun in the event of grizzlies. There was a laugh track and a brief photo of a gun, so it was odd to me when A2 gasped loudly, stood up from the couch waving his hands and both tearfully and fearfully begging, “No gun!  No! Shoot, no!”

We are not hunters nor are we gun enthusiasts and neither are my friends. As far as I know, A2 has never seen a gun in person or on TV, given 100% of his viewing includes Barney, The Wiggles and NBA.  He has never heard a gun shot. Neither he nor his brother ever pretended things were guns.  He has been known to blow some zombie pirates away gleefully at Chuck E. Cheese, but those are not even guns.

I reached for him to comfort.  He pulled away and continued to plead “no!”

A2’s language disorder renders him without the ability to elaborate and his anxiety rendered him without the ability to say much of anything as he stifled tears. I was perplexed.

The next time I saw his Intervention Specialist, I asked her how they handle lock down at school since I grew up when there were only tornado or fire drills. I literally have no concept of what they do.  She informed me they tell the kids it is in case there is someone in the school who should not be.  No mentions of guns or lack of personal safety, she assured me.

Fast forward one month.

While visiting my mother out of town, A2 was playing in the bathtub when suddenly he became very quiet.  After staring off for a few moments, he pointed and gasped ” No. Shoot. No. Boom!” I tried to follow his gaze, when I saw this….

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What in the world is “No shoot boom?!”

Apparently, the item of concern was the bottom of an electric toothbrush and he would not get out of the tub until I removed it from the bathroom.

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Upon further inspection

My child who has no experience with violence or guns knows what a gun barrel pointing in his direction looks like. He knows he should be afraid. And he clearly was now on two very different occasions. 

 I HAVE NO IDEA WHY.

He is never, ever alone with an adult we don’t know well, generally not even family. His aides are almost always supervised.

There is only one place it is possible. This meant we would have to question the people at the place he spends the most time and we are to have the most trust.  The ONLY place where he has potential to be alone with adults without us.

How in the world does one even go about doing that without placing the teachers, therapists and paraprofessionals in a position of not only defensiveness, but of questioning your motives or your sanity as a parent. A2 went 11 years with no mention of guns let alone a knowledge and fear of them. We had no other option than to ask because we don’t have the option of taking anything for granted in our world.

What is the worst case scenario you can imagine for your own child? 

Those of us with anxious personalities can come up with a bevy of outrageous ideas when it comes to our child’s safety.  However, let me assure you, when you have a child who cannot tell you anything while paired with the knowledge they will likely outlive you, you don’t have to have to be Type A, neurotic,  high-maintenance, helicopter or any other of the words that may be assigned to you behind a closed lounge door by people who don’t truly understand the fears of every single parent of a child with a disability.  We send our kids out into the world as a leap of faith in their teachers, therapists and caregivers.  And we also have no choice but to accept whatever the answers are when they have nothing solid to give us in moments like this.

I have worried about many things throughout A2’s life, but gun violence/gun safety has been super low on the list of worries that keep me up at night. (Let that one sink in for a minute….).  Almost more so than my frenzied concern over where A2 might have gained this new-found awareness was my sadness in knowing something stole a level of innocence from his blissful naivite about how the world works.  We don’t have difficult discussions in the way my friends do with their children when they show up wide-eyed and fearful about confusing and upsetting events of the world around us. So many things that we as adults keep our fingers crossed behind our backs as we reassure them they are safe, hoping with all our souls we are right.  I have assumed because A2 has not seen hurricane devastation up close and personal, cannot conceptualize a mushroom cloud and has never seen an automatic weapon mow down 500 people while enjoying themselves at a concert that he does not contemplate or worry about his own safety in these ways.  That the things that fill his iPad with cartoon characters and songs about fruit salad are all he should worry about. Man alive…I am pretty sure I was wrong.  Maybe the belief this is true is to protect my psyche, not his.

I have to take my best guesses as far as what my child does and doesn’t understand about the world. I also have to take my best guesses as to how he is affected by those things. It’s not wrong for me to shelter my tween from guns. For us, there is no meaningful teaching of gun safety or exposure that doesn’t end in a loop of doing it wrong somehow. The stern warning of “STOP! DON’T TOUCH! LEAVE THE AREA! GET AN ADULT!” is a useless four-step command since my child can only follow a two-step with any regularity.  He certainly doesn’t have the fine motor skills to learn the power and healthy respect a gun commands under adult supervision at the shooting range.

So according to the professionals, my non-dangerously-mentally-ill kid (who does not have an aggressive or hateful bone in his body) who can technically have a gun just like everyone else when he is 18, can’t be taught how to handle it carefully, how to shoot it or when to use it, yet I am to expose him to firearms in a way that won’t frighten him and also so he knows they are not toys and won’t pick them up. I would very much like the manual on how to do that.

There are 300 million guns in the US.  It sounds like my child has seen one of them in a way that caused him a great deal of upset and anxiety and how that happened will likely always remain a mystery.  We have dulled our senses and turned down the volume on what we are willing to accept as normal here. And this uncomfortable truth will eventually spill over onto my beautiful boy who can never tell me what happened.

 

 

And Then He Was Gone

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My boy went missing yesterday. He went missing near water. Don’t worry.  There is a happy-ish ending.

I keep reading about the ““sweet spot” of parenting in summer.  This is the phenomenon where after years of hyperigilance, parents can relax at the pool because the $3000 in swim lessons have finally paid off.  You are now officially the chauffeur and the loan officer but no longer also the lifeguard and babysitter. Your kids have the buddy system at the local pool just by showing up to same aged classmates and are released free from the bonds of water wings and demands barked from mom suits.  The first summer a mom experiences this, she is ecstatic. I know this because I’ve spotted an alarming amount of women openly reading Fifty Shades of Gray in their lounge chairs.  Maybe there is a twinge of wistful “last time”, but ultimately their palpable sigh of relief to just relax next to the pool overrides preemptive nostalgia.

I’m not here to wax poetic about the woes of the special needs parent at the pool because I have already done that and also because we too have a sweet spot….it’s just different and likely the bruised part of the banana people normally cut off.  If I could cut that brown spot off I would for some things. Things like yesterday…..

We have a pass to our local water park. A2 likes spending the majority of his time in the young children’s area full of manageable water slides, spinning water wheels, hoses and a non-slip structure featuring a giant bucket on top which slowly fills up every 10 minutes and dumps gallons of water on the crowd gathering below in anticipation. A2 doesn’t mind water in his face and the bright colors and sounds–the constant movement and slow drips of water are the things of joy for him.  I hate Monkey Junction.  I navigate it alone, pudgy and pasty. The water is 25 degrees colder than it is in the wave pool and in order to stay close to my kid, I have to follow him through the maze of spitting water getting me wet and cold enough to use guided imagery to disassociate myself from my sensory differences. A2 is now 12 and still cannot swim which works out fine at Monkey Junction with its ankle deep water. I have attempted to entice him to follow the structure up to the far more exciting curly slide where kids closer to his age might be. This is still met with the same screech and Houdini-like limb disjointing to remove himself back to the same 4 places he prefers to stand and flap as he has every year before now.

This year, I realized his predictability was my sweet spot. Yes, I participated in his happy, flappy, water drinking glory and slid down short slides with cloudy and disturbingly salty/sweet water at the bottom.  But I also let him have that time to do his thing without me trying to redirect him.  I plopped down in a super-short lounge chair situated 20 feet away from his predictably favorite places and this year…..I dared to open a professional journal.  Ahhhhh…..the sweet spot for me. Read two sentences, see where A2 is….read two more….yep…same place….. “Ok, just like everything else…we have a modified sweet spot and here I am living the dream!” I thought to myself.

About 5 minutes into this, I looked up to see A2 was standing at the bottom of the baby slide flapping away to toddlers making tiny splashes against the yellow curved plastic.  A crowd was gathering under the giant bucket….the next stop in the pattern of stimmy afternoon fun. I almost felt smug. Moments later, the bucket dropped which is normally my cue to go and join A2 and shriek in excitement with him.

Only he wasn’t there.

HE WASN’T THERE.

At first, I shielded my eyes in the late day sun.  Stinker.  He changed his pattern.  I looked to the 3 other places.

HE WASN’T THERE.

Why had I never noticed the deeper pool near the equipment before?  I have an overactive amygdala (that place in your brain responsible for fight or flight). My movements can appear more dramatic than I actually feel but my monkey and human brains caught up to one another pretty quickly.

HE WAS NOWHERE.

I breathlessly approached one of the lifeguards minding the 4th level of purgatory of Monkey Junction.  “My child….he’s missing.” I spat. “He’s wearing a white swim shirt and black and neon green shorts.”

“Ok, I’ll let you know if I see him.” he said without making eye contact, though admittedly he was wearing sunglasses and was standing over a slightly less blue pool of water of toddlers. “How tall is he?”

I made the imaginary yard stick hit my shoulder on my five-foot frame. “Here.” It then occurred to me my level of concern was not commensurate with the number of feet off the ground my hand was. I looked like a histrionic helicopter parent.  And then the overwhelm of panic smacked me in the face.  “…He’s 12 but he is autistic and can’t communicate with people he doesn’t know…he’s non-verbal!”,  neither of which are completely accurate.

How do you describe a 12-year-old’s safety concerns and the immediate nature of those concerns?

“Ok” he said again and went back to twirling his whistle.

I went to all the other lifeguards. One told me to calm down, they would take care of it.

“HOW?  TELL ME THE PROTOCOL FOR STOPPING PEOPLE FROM LEAVING THE PARK WITH A CHILD WHO IS NOT THEIRS?!  WHO DID YOU CALL?  THIS ISN’T GOOD ENOUGH! YOU CAN’T TELL BY LOOKING AT HIM! ”

Should I have not said he was 12?  Should I have directed what they needed to do? Was a full 30 seconds much too long to look away from an ankle-deep pool of water guarded by four teenagers?

I was now a lost child. Pacing in my worst nightmare, rendered with ineffectual words. Is this how A2 feels all the time? Desperately trying to communicate the weight of the world to stone faced dolts who completely miss the nuance of the message?

I ran from mother to mother begging for extra eyes in the way only a mother sees.  I was too afraid to run onto the structure for fear he would walk out past me unnoticed. One mother ran around the structure all the way to the top out of view, where she found A2 hooting and clapping to the older children releasing themselves down that same curly slide he refused to even approach the gangplank with the safety of an adult.

He clearly was not distressed as he left the play structure with her as she brought him to me….yet more evidence of my rightful concern. He would have left the play area with Jack the Ripper if he was asked nicely.  He rates highly on instructional control measures at school.  We have trained him to be compliant. No matter what.  I have never felt so nauseated and so relieved all at the same time.

Initially, when I sat down to tell this story it was with the intent on providing information on what to do if your child goes missing.  But 1200 words later it really felt more like I wanted to just tell this story of my fallibility.  I have not lost my child in 12 years…..but I did so for 5 horrifying minutes because I chose to look down for 30 seconds. Turns out the “sweet spot” is not something parents of certain kids get to have in the way other parents do…not even a modified version.  Because those moments taken for granted might also be moments of growth. Moments of increased independence and bravery in a sneak attack of pride and relief and fear.  I missed witnessing his milestone.

There is no playbook for this autism thing.

**Disclaimer: Security showed up just in time for me to tell them that the crack team of lifeguards did not find him, but a patron.  While they obviously did the right thing and got security involved, the utter lack of urgency and communication was the issue.  I am formally alerting the park to this concern. Alls well. Nothing to actually see here folks…

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

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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

(originally posted 9/2016)

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.

To the Regular Ed Teachers: Top 5 Ways to Keep Special Needs Parents Off Your Back

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My home phone rang the other day right before my kids got home from school. For those of you who do not know what I mean by “home phone”, its that thing that plugs into a wall and has the # symbol that cannot hashtag anything. When the home phone rings, I typically keep doing whatever I am doing unless I am feeling a bit of whimsy to torment the telemarketer likely on the other end. The only other time it rings is when someone at the school does not know to call my cell…which often then strikes fear in my heart. So I picked up.

“Mrs. ATeam?” Gulp.  It was A1’s new science teacher calling to say “First of all….let me tell you I think he is hilarious. He made this cartoon strip ….” He then went on to disclose all the other things drenched in awesomeness while I was waiting for the “Second of all….” part. That part never came. He called me to tell me I had a cool kid. And that was it.

I am already too experienced with the school system to be naive. That same morning I had to send an email to kindly remind another teacher to carefully review A1’s IEP and Health Plan as there were some important things not being followed. Coincidence to hear from the science teacher the same day? Probably not. I am guessing he may have just been reminded that he had a kid in his 4th period class who has an IEP and a Health Plan. Maybe not…but as I said, doe eyed ingenue does not work as well with crows feet.

Unfortunately, what struck me most about this amazing phone call is that in the 3 years that my younger A2 has been in public school…my very speech impaired child…I have never ONCE received a phone call from a regular ed teacher just to tell me about his day in their class. And let me be clear about 2 things. Real clear since this won’t apply to everyone.

1.   A2 tries to tell me about his day. Every day. And we CANNOT understand him.

2.   I have ASKED  for communication. Over and over. Every year. In front of other people. To almost no avail.

So teachers…this advice is completely free of charge. The key to keeping us special ed parents at bay.
1. CONTACT US FIRST: Before school even starts, call to introduce yourself and ask about our kid. Give us your contact information. Assure us you are the extra eyes and ears for a kid who has no voice.
2. DON’T ASSUME THE INTERVENTION SPECIALIST IS JUST TELLING US EVERYTHING. My kid has a whole 30-60 minutes a day of direct IS time required in his IEP in our high-end-award-winning-district. My severely learning disabled child. The paraprofessionals who are with him most of the day are not permitted to communicate with me directly due to their classified employee status. We often get second hand info from our IS that sounds something like “had a great time in music class learning new songs”. The small tidbits we do get…well…that’s all…that’s ALL we get to know. The nuances are never there for us…if they are making a new friend, if someone hurt their feelings if they thoughts something was cool or interesting. And those things are definitely happening in my child’s world and no matter how hard he may try to share those things with me, if I have no context, I will not know at all what he is telling me let alone what questions to ask. The paras also are not allowed to attend IEP meetings even at my request. Were you aware of any of that? A2’s Intervention Specialist has 10 kids who can’t tell their parents anything about their day. She is ALL of their voices….and she is trying very hard to be all knowing by being the 3rd party communicator. But why? This is a team approach. While you do have 25 kids in your room, if they are lucky and have parents who actually ask them about their day, their kids can tell them. You have so much you can tell us and I guarantee all of us want to know.
3. INVITE US IN: To volunteer, to be a fly on the wall, to talk about our kids to your class. Did you know that neither you nor any of his other caregivers during the day are allowed to divulge any information regarding our child’s diagnoses to the other children due to HIPAA**?  And there are SO many questions from children aren’t there? If you have an inclusive classroom, the information a parent can provide the children can be invaluable to the inclusive environment. Offer to include the IS to help that parent if they express interest but are uncomfortable. **IMPORTANT DISTINCTION:  FERPA (Family Educational Rights and Privacy Act) any information that is directory information is ok to give out.  So If a parent is asking for another child’s last name or to get in touch with another family, that is not confidential information if the family did not opt out of directory information.  You just can’t tell us the child is on an IEP or anything regarding diagnosis.
4. RECOGNIZE WE UNDERSTAND YOU ARE BUSY: We are not out to get you or have a “gotcha” moment. I cannot imagine being a teacher right now. Huge classloads, jobs dependent upon test scores that are dependent on more than just your ability, differentiated instruction, outliers flying under the radar, helicopter parents, uninvolved parents. A 10 minute phone call once a month to tell us something we wouldn’t know without your call. If you do that once a month without fail you will likely never hear from us. But your principal will almost definitely hear from us. To hear how awesome you are.
5. INCLUSION AND INTEGRATION ARE DIFFERENT: This doesn’t mean let them also have a desk and have peers help them hang up their backpacks (though we recognize the value in that too). I mean if you take a picture of our kids to put on a bulletin board make sure it is a good one like everyone else. If you are in reading to the class and you ask a question the other kids can answer, figure out a way to ask a question that could include our kids’ ability to answer. While you have kids who can fall through the cracks, ours have absolutely no way to mountain climb out of those crevices without you. I am sure like us you don’t want them just to be a warm body at another desk. Ask their IS for strategies…that is why they are there.

BONUS #6 also at no charge: THE MOST DIFFICULT PARENTS ARE LIKELY YOUR BIGGEST ALLIES: Yep. We are the wave makers, the getter-doners. We figure out what you want and need and we try to get it for you especially if it will benefit our kids. Sometimes you don’t even need to tell us what that is. We figure it out. Assume nothing regarding our motivations.

For those of you who went into regular education vs. special education–those days are long gone. Inclusion is not just the responsibility of your Intervention Specialists. Much like us parents of kids with special needs…we started out in the exact same place as all the other parents in your room. Maybe even as you did too as a parent. Our journey veered off years ago but the desire to get to know the same thing we would have if everything turned out as expected has not.

Dreams are Poetry for My Son Without Words

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What do you dream about sweet silent boy? 

The nights you rise up out of your bed and wander our dusty floors?  Are you looking for something you cherished for a moment in that mysterious place between the consciousness of dream and the awareness of waking?

Are you on an enchanted night walk floating through a maze of fireflies and bubbles unaware of the world that holds you back?

Could you be lost navigating the spooky hallway forest, familiar and friendly when the path is lit by the morning sun?

What do you dream about sweet boy?

Those nights your shriek summons me like the siren’s song to find you swimming in your twisted sheets?  My soft words are not your anchor.  You push me away from the helm with your kicks and punches as if resisting being dragged to the bottom of the sea by the mighty whale you have have come to exact revenge.

How do I teach you to breathe when you emerge from the black water instead of screaming?

You wake gasping for air.

What do you dream about sweet boy?

When you sit bolt upright rubbing the glitter of sleep deeper into your eyes with the fists that once fit in the palm of my hand?  You rise with a dreamy smile that does not release either of us until you snuggle in as close as you can. It is how you summon the halcyon to create the calm winds that smooth the waves.

You drift safely on your back.

Do you know you dream sweet boy?

Can you separate day from night? Do your lost words in the light morph into the demons in the dark who suck the words from your cherub lips?

Do nocturnal fantastic birds of flight carry you away and release you from your forced secrets of the day?  Are those birds the thing with feathers?  Do they chirp the same songs they sing to me?

Do you not dream at all sweet boy?  

Perhaps instead you play with angels who speak your native tongue.  You drift off to the place where I am not allowed to go with you. You run freely through the fields of joyous detail or you ramble in teary despair in the wings of the worldless knowing you are understood and safe.

Because no matter the circumstance of night, in the morning  you wake wide eyed and blinking and peaceful.

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Day 4 2016: D is for Diagnosis

I See You. Happy Mother’s Day

 

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Who gets to be a mother?  There is no one way to become a mother.  There is no one way to be a mother.

For the ones who get to hear “Happy Mother’s Day!” and the ones who no longer do.

The Mothers who wake this morning to a day like any other, cleaning messes, refereeing scuffles, and bedding down cherub faced urchins who cannot read a calendar yet.

The Mothers who rise up in their beds this morning to be greeted by tiny sticky fingers holding a tray of homemade cards, burned toast and cereal with too much milk.

The Mothers who must work today away from their babies to make sure there is food on the table.

The Mothers who sit in their homes holding folded flags and photographs, cardless and without bouquets and understanding the kind of sacrifice most cannot comprehend.

The Mothers who wake this morning to their nests being full for the day and swell with pride and calm inhabiting space next to them in their church pews for this one Sunday.

The Mothers who have been up since 3 am bouncing colicky infants on their hip and have lost track of days to remember it is even their special day.

The Mothers who may never hear the words “I love you”, but instead know that scripted lines from Barney mean the same thing.

To the Mothers who are surrounded by children and grandchildren…nieces and nephews, whose faces are those of strangers and quietly asking where their own mothers are.

To the Mothers who wear their hearts and heavenly babies in lockets around their necks.

To the Mothers whose gardens held no water.

To the Mothers who were called by their first names, “aunt” or met their children well into adulthood.

To the Mothers who lock themselves in the bathroom from time to time in tears wondering if they can keep mothering.

To the Mothers who prayed, and saved and traveled the globe to find their children and brought them home.

To the Mothers wondering if this will be their last Mothers Day with their children.  To the Mothers wondering if this will be the last mother’s Day with their own mothers.

To the Mothers who promised they would upset the lineage of abuse or addiction for their own children, and they did.

To all the Mothers who asked for their children’s forgiveness.  To the Mothers whose children did.

For all the Mothers. I see you all.  Happy Mother’s Day from one imperfect mother to the whole village.

 

 

Autism Awareness Month. X is for X-Ray.

Day 24

Sensory differences are a common symptom of autism. Often kids on the spectrum can become overwhelmed by these differences. A1 tells me that a public toilet flushing sounds like a bomb going off and for several years he avoided public restrooms. A2 flaps his arms and locks out his knees whenever he is filled with anxiety. Kind of his virtual rocking chair….or else he is just hoping to fly away from the dentist/barking dog/hand dryer. As autism-folk we try to build awareness by creating overwhelming scenarios to get NTs (neurotypicals–yes, we have a name for you) to sympathize the plight of the kid flicking his fingers in front of his face as a way to stop having his eyes taking a million pictures at once or the kid who is pacing because he can’t tell where his body is in space. But sometimes, I am fairly certain that some of those sensory integration differences are not experienced in a negative way and sometimes there are common things that just look, sound or feel like something not of this world. If I could only take an x-ray of A2s little mind and see what he could for 10 seconds. (Feel free to smile at this picture….)

Autism Awareness Month. V is for Village

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Because we are so immersed in this world of autism I have erroneously concluded that everyone who lives outside of this Village is already aware of autism. However, there is a secret sorority that exists…one equipped with a secret handshake and password. I am in that sorority yet have no recollection of agreeing to join. Autism is funny like that. The Village of Autism parents is a unique one. We are a motley crew of individuals whose path may have never crossed otherwise. We meet each other in waiting rooms and lobbies of doctors offices instead of in the PTO. We have closed blogs and Facebook pages instead of casual phone calls. We learn more about the newest treatments and resources from each other than we do from professionals. We talk about how well our child is pooping quicker than we will discuss how well they are doing in school. Though we are typically the least able to, we are often the first responders to others in the Village because we are more likely to reach out to one another than we would outside of the Village where no one speaks our language. And we find each other….everywhere and all the time. Today while sitting on the floor in the middle of the children’s shoe department feverishly tearing inserts out of shoes and hopelessly attemping to shove A2’s newest orthotics into them with no success I broke down and cried. Just sat there in the middle of the floor, surrounded by ridiculous shoes with flashing lights on the soles and sobbed like a toddler might who couldn’t find the shoes she liked. At that same time, I peered up to see a woman pushing a cart with one hand while calmly using her other to push her much-too-large child who was humming loudly down back into his seat. We made eye contact for a single moment and silently nodded–her nod seemingly said “Yes….I know those orthotics were made wrong twice before in 7 months and represents 6 visits to the clinic over that same time. Yes…..I realize this is the 3rd store you have been in today that absolutely does not carry shoes your 9 year old can wear with the braces he must wear on his feet. Yes….I realize that your tears are really about your kid and the pain and blisters he will probably have again that he can’t communicate or the weird, white 1960s Frankenbaby shoes the orthotics company will recommend that look nothing like what his school friends will be wearing. Yes….I see you….and I know you see me….” V is for my Village. The quiet, connected Village where my family lives.