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.

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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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.

Autism Awareness Month. Day 6 2016. F is for Food.

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F is for Food

This breakfast is 8 years in the making…A2 eats a total of 9 different foods..all presented in a certain way…all brand specific. Starting from 0. He has worked so hard to get to this point and I feel a weird balance of pride, frustration and futility when I see this plate. Feeding issues in autism are common and are outside of “oh, all kids can be picky eaters” or “just tell him if he doesn’t eat dinner, he won’t get anything later–it’s not like he’ll let himself starve”. Because actually….he will. Many children with autism have serious food aversions and feeding issues. The reasons are varied but tend to be due to sensory, texture, medical or obsessive-compulsive issues. Behavioral issues become deeply ingrained in these kiddos when eating is paired with physical pain due to gut issues so common in kids with autistic disorders and can…

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Autism Awareness Month. Day 2 2017: B is for Blogs

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About 9 years ago when A2 was 3 years old, he attended a social skills group with a speech therapist and 3 other minimally verbal children.  A2 was by far and away the most pleasant and social of the 4 kids in the group and at that point did not have an Autism diagnosis.  I didn’t know WHAT was happening with him for sure. I sat in that lobby week after week wondering what A2 could possibly be getting out of the group given none of the children had any functional verbal language and a great majority of the time the adults were wrangling to keep the kids all in one spot.  After the final session, I sighed at the speech therapist and asked her what she thought was going on with my beautiful boy.  She asked me if I had ever heard of the book Schuyler’s Monster by Robert Rummel Hudson.  I had not.  It is a memoir written by a father about his wordless daughter.  A2 and I left the speech session and immediately went to the library to find it.  I suppose I would have been reading more about parent perspectives of young children with disabilities had a known my child had a disability.  But he was 3.  He had delays.  A gross motor delay, a fine motor delay, a speech delay.  He flapped.  But he also looked at me and smiled, knew his name and cuddled.  Other than the cache of bewildered parents who sat in lobbies at therapies, I had no connections to others going through similar circumstances. As an action oriented person, I didn’t know I needed to have those connections.

That is until I read Schuyler’s Monster. 

In some ways, I feel like that is where my story begins.  It started as an easy read because Rob is poignant, funny and his words wash over the pages and get right into your brain.  And. Then.  To put it simply…I was knocked on my ass. He was telling my story.  He was me.  And Schulyer was almost exactly A2.  Right down to the personality.  I had to set time aside to read when I knew I didn’t have to be “on” because I wasn’t sure how what I would read would affect me for the rest of the day.  Schuyler has a rare genetic disorder called Bilateral Perisylvian Polymicrogyria.  I called A2’s neurogeneticist at the Cleveland Clinic and insisted he himself go back and read A2’s baseline MRI and not rely on the radiologists report. He humored me and alas, A2 and Schuyler did not hold this in common.  I finished the book and felt like I was underwater. What was I going to do without Rob, Julie and Schuyler?  I felt connected to something and yet I had never felt so alone in my whole life all because a piece of cardboard filled with paper and a beautiful little girl on the front told me life might not be what I think it is.  I was not an avid reader of blogs and at that point was not on social media.  I found his blog Fighting Monsters with Rubber Swords and reconnected with his words.  Soon, I found another blog that spoke to me much in the same way written by a teacher who had an autistic child called Flappiness Is.  At this point, we had an autism diagnosis and I was in the throes of learning to advocate for my child in ways that rocked my world. Leigh was there to say the things I couldn’t say. Then there was another (which is no longer around) that made me laugh about our situation when I needed to laugh about it.

I now had a community and resources I could access whenever I needed it.

I am an accidental blogger.  I wrote 3 posts back in 2010 and when I realized I really had nothing to say, I was done.  It wasn’t my time to talk.  I don’t know if it is really my time to talk now, yet here I am.  Instead of following 3 blogs, I follow dozens and all for different reasons.  I have met the most amazing folks along the way because of it including the now very grown up, very kind and very inspiring Schuyler.  And she seems to be exactly the person I hoped she would grow up to be when I met her as a little girl as typeset words sitting on my couch 9 years ago.

There is no need to be alone if you cannot find “your people” in your community.  I never dreamed that some of my closest confidants are people I have never met or only briefly met in person. This list is not exhaustive…..and most categories will overlap, but my resource list of favorite blogs/social media folks you might want to check out (note also most blog links will be the same name on Facebook):

Day 2 2015. B is for Boredom

Day 2 2016: B is for Behavior

DAD PERSPECTIVE

Bacon and Juiceboxes

Jason Hague, Writer

Just a Lil Blog

Dad Enough

Autism From a Dad’s Eye View

Autism Blues

Stories About Autism

The Spectral Zone

The Autism Daddy

PERSPECTIVES FROM THE SPECTRUM

Autistic Not Weird

Autcraft

Seriously Not Boring

Deciphering Morgan

Autistic Speaks

Kerry Magro

Anonymously Autistic

Autism Uncensored

MEMES/HUMOR/KEEPING IT REAL

Autism Odysseys

Just a Minute My Cape is in the Dryer

Ink 4 Autism

Rantings of an ADHD Mom

ALL THE REST

David Snape and Friends

Carrie Cariello

Love That Max

Finding Cooper’s Voice

Take Another Step

Autism With a Side of Fries

Herding Cats

From Motherhood

Our Adventures with Riley

Special Ev

Walking With Drake

A Day in Our Shoes

Special Books by Special Kids

 

 

 

 

 

Autism and the Dentist: Top 5 Tips for Successful Visits

How in the world has it been 6 months since I have taken the kids to the dentist? After a rousing success this fall, I thought I’d share this again in hopes we can recreate using my own advice! Any tips or tricks for your kiddo at the dentist?

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**DISCLAIMER**.  The first half of this is the How Did We Get Here part.  The second is How Can You Maybe Get Here part.  Feel free to scroll to the second part…I promise you won’t hurt my feelings.

“How’d it go?”  I hacked out with the phone resting between my ear and the bed.

“Well,” my husband hesitated, “After he bit through the little mirror thingy and puked all over the dentist she told me that you should bring him from now on since you have more control”.

I usually took A2 to all medical appointments but had succumbed to a virus that resembled the plague and the only thing worse than me having the plague is A2 having the plague.  Normally, Mr ATeam and I are a pretty good team when it comes to him but one area I quietly held resentment was having to be the heavy when…

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Happy Holidays! I’m the Room Parent. I Know You Have Never Heard of My Kid, But……

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Pinterest success for a classroom party.  Though, watch out for that reindeer in the second row on the right…he clearly is up to no good.

How we got to December already is beyond me.  I feel like I just put up my Halloween decorations on the house and made my contributions to the Harvest party at school, yet the red and green bins from the basement are now out and I am filling out Evite forms and combing Pinterest to figure out what I will ruin three times before bringing it to the holiday party at school.

I am a working mom with  a 5th grader and a 7th grader.  In the last 7 years, I have:

  • been a room parent 7 times (including the year I was room parent in BOTH my kids classrooms)
  •  planned 9 Halloween classroom parties and 10 winter holiday class parties.
  •  baked an estimated 1000 gluten free friendly treats for classroom and school wide events.
  • been a chaperone at EVERY  Walk-a-thon, school celebration and field trip (one year at the Valentine’s fair in school I lost a kindergartner….and in all fairness and disclosure, no one told me he didn’t speak English….and I found him…)
  •  volunteered weekly in 4 different classrooms, shelved books in the library for 3 years and worked the cafeteria snack table
  • sold crappy novelty items no kid NEEDS at the school store weekly for 4 years
  • stapled, folded, stuffed flyers, envelopes, book fair propaganda, changed out bulletin boards, helped clean the building before summer break, cut out thousands of shapes for projects, hole punched writing projects, graded math papers, labeled book shelves, organized folders, passed out ice pops, redirected children, gave out hugs to kids I didn’t know, tied shoes, located ice packs, made meals for teacher appreciation days

I think you get the picture.  An estimated 2000-2200 hours of my time since 2009.  Basically….a 40 hour a week job for one full year. I rarely see my child during any of these hours spent at school. And before anyone thinks I am judging the non-volunteer moms, I am NOT a sanctimommy. And no,  I do not want a cookie, a prize or personal recognition from anyone.  Other than to say this….

I have had to land my helicopter on the roof of the school for two simple reasons. I have a child who doesn’t have the capacity to tell me about his friends and a school that only recently took steps to discussing making that meaningfully different.

This is not an unusual phenomenon.  I had a conversation with a special ed coordinator in another school district about this once.  She also “lives in the field” like I do having a couple of kids on IEPs.  I mentioned this struggle to her at which point she stated “I understand, but at some point, this isn’t the school’s responsibility (to help special needs parents get to know each other).  Since I was visiting her district professionally, I didn’t say much mostly because I had a feeling that her IEP-ers at home are verbal.

I didn’t start off this way.  I was your regular, run-of-the-mill, elementary school, product of divorced parents volunteer mom.  While the 1970s were not known for tales of excellence in parenting,  as a child, I was aware of the presence of the other moms who volunteered or were there for events during school. I promised myself I would one day figure out how to be one of the moms who ran the mimeograph machine on Thursdays.

Then Autism came along and and early on  I realized volunteerism wasn’t going to be a once-a-week-show-my-kids-I-care kind of activity.  My youngest was turning 8 and for the first time expressed excitement over his own birthday. “CHUCHEE CHEEE!”,  he exclaimed after I asked him where he would like to have his party.  Since he had not been invited to any  birthday parties since starting school, I wrote several school staff asking if they could help with names.

The only response I got was from the regular ed teacher with a polite reminder that due to confidentiality, she could not tell us the names of his friends.  She also reminded me that she would not be able to pass out any invitations if we weren’t inviting the whole class.  And that was it.

I was perplexed.  She did know my child had a severe communication disorder, right?  I politely acknowledged the ramifications of what she was saying and pondered in the follow up email if there were anything she could do to help us figure out a solution.

No response. So after a week,  I wrote again but with a much more explicit message.

My message was: “As far as I know, it’s not a confidentiality issue when one child approaches another for their name and phone number.  That’s how typical children do that.  We have programed the following into his talker (speech generating device):

“My phone number is ***-***-****.  Can you have your mom call my mom?”
OR
“Can I have your phone number?  My mom wants to talk to your mom”
Given its on his IEP –the need to prompt him to initiate social interactions as well as guiding him use  prompts on the talker, I am sure someone will find the right opportunity to help him with this interaction.  Its amazing to see how far he has come.  As any parent would be, we are so proud and excited for him.”

Fortunately, the principal at the time appreciated the value of enlightened self awareness and stepped in to make this happen. He had the most glorious time with his friends at his own party. While he was blowing out the candles on his cake, I took the instructions handed to me by the school on “intro to helicopters” and filed it away for later.

(For those of you who don’t know,there is nothing in FERPA (Family Education Privacy Act) that would actually prohibit a teacher from giving you the first and last name of any student your kid is hanging out with as long as it is directory information and there is no expressed exclusion in writing from the family, or if the child gave it on their own.  So no…its not “confidential”. This includes special education students…FERPA would prevent her from telling you that the child was receiving special education services, not from giving you their name…and I get it….I wouldn’t want my name and phone number handed out willy-nilly either…except my friend’s child with language hands hers out all the time simply because he can)

I am privileged to be self-employed and have a job that affords me the flexibility to work around my kids’ schedule and needs.  When you have a child with a disability, weekly mid-day therapy appointments, meetings and emergencies are part of the deal and already require us to be like Navy Seals.  We are flexible on a moments notice to switch gears and take care of whatever arises unexpectedly. But those 9-5 parents or single family households with special needs kids are truly super-parents….Space monkeys exploring uncharted territory  different than typical families with similar scheduling issues. They do not have a finite number of years in which they have to sweat it out every day, and they certainly don’t have an ounce more  flexibility to find time to sit glassy-eyed in an empty classroom pulling staples out of a cork board.   Volunteering for the purpose of  learning every nook and cranny and connecting with the people in my child’s world just to have a frame of reference would likely happen anyway for me but definitely not with the volume or tenacity.  I am lucky to have this as an option, but many…if not most working parents of special needs kids do not.  The onus is on the parent to try to figure out how to connect the dots to create a fulfilling world outside of school for their kid and many times they aren’t even given a pencil to do that.

So when you get that email or phone call that it is time to start collecting money for your teacher’s end-of-the-year-gift and its from the two moms of kids you never heard of (because each spend a total of 1 hour a day in the classroom), now you know why you don’t know who they are.  Reach out to them….because they don’t really have time to be collecting your money…but they will make all the time in the world to find out more about your child.

**The inspiration from this piece came about a month ago after yet another disheartening situation. A few weeks ago we had a meeting where I had to be very firm and direct to make sure this message was heard. I believe it was heard by most in the spirit it was delivered. Most of the team who work with my child have worked with him since the beginning.  Those direct workers are caring people for certain and they are working on a plan to rectify some of this type of issue.  Stay tuned…if you are in this dilemma for your child!

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Why I May Have to Abandon the Best Coping Skill I Have Ever Had

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My heart is sitting in a basket on my desk next to my computer.  I stare at it wondering if I should leave it where it is or if I should shove it back in my throat where apparently it now belongs.  I  am faced with a dilemma I have fleetingly looked in the eye before but this time I pause much longer as if memorizing the outline of the face of a loved one I may not see again.

I love Facebook. I am like a Pavlovian dog when I hear that DING! and will switch over from work to see whats going on my feed.  Facebook is the most existentially layered version of the real world I can imagine. Everyone from my closest friends to those folks who have crossed paths with me for a brief yet meaningful time are there.  It’s the place where my elementary school besties and bullies post about their versions of how they turned out. People from a former life who hold keys to doors which ushered me to my current self are there too. There are writers and authors and even a real-life famous person here and there (sorry…I won’t out anyone) in the cache of my 560 nearest and dearest.  And I have access to all of them at the same time all of the time.

I take real 1-2 minute life diversions on Facebook multiple times a day.  It’s a weird and somewhat pathetic paradise.  Being a working mother is complicated enough, but I have a few extras thrown on top including a husband that travels and kids with varying special needs which means extra meetings for school, schlepping to therapies, staying current on research, hiring, supervising and managing a home team…and that’s all before actually dealing with the territory of settling in at the end of the day with  kids who just need extra.  Just when I might be taking myself a little too seriously or am feeling a little too isolated…boom….a cat video or Joe Biden meme reels me back.  Connecting in cyberspace is so much more my style and because of that connection I know I am not alone in this.  When I deal with work situations that matter to me, I am a rock star.  I have a purpose and can completely focus externally on the needs at hand.  But socially…yikes. Eye contact, staying focused, not accidentally making a connection out loud as to how the topic focuses back on something I can relate to better….none of those things are my forte.  When posting on Facebook–I can be funny and smart in sound bytes. I can get hoards of people invested in an ongoing saga about my fear of spiders.  I can walk away from a conversation mid-sentence without consequence.  I don’t have to think about where to look or how I am coming across because unlike in real life, by the time my human brain catches up to my monkey brain I have not yet hit “enter” and can edit what I REALLY wanted to say.  Sometimes those two things don’t catch up and that is what the “delete” button is all about.

Facebook levels the social playing field for quirky people like myself.  It gives me a social outlet when I don’t actually have time for a real one.  It keeps me invested in people, events and causes that are important to the real world all around. It provides an escape into brief, clever and timely humor.  It helps me find like-minded people.  It expands the repertoire of  discussions and ideas of which I might not otherwise be exposed.  And I can have all that in tiny spurts all day as needed. It really is miraculous if you think about it.  Communities of individuals who never stood a societal chance before are finding their communities right here on Facebook.

We know to take the good and the bad here. On good days, Facebook is my outlet. Internet trolls and maddeningly misinformed opinion presented as fact are the yin to the yang of my Facebook fascination.  I can roll past things or people who ultimately shouldn’t matter to me.  Something that I fail to do all that well in real life.  But this is changing too quickly for me to cope with in a way I find  acceptable by an election that divided the country before I had any idea we were THAT divided.  I am overwhelmed by Facebook friends and their words of hate or indifference being presented on a platter and served up as just another white meat with no other options for dinner.  I am breathless because I don’t feel like I can scroll past any article that has anything to do with leadership appointment, policy or ideology that may affect my family or anyone else I love.  Suddenly, realities of Facebook friends as minorities, the poor or disenfranchised are inundating my news feed faster than I can read, process and consider and as a seasoned social worker I feel like I am back to my overwhelming roots of weeding which causes need to get the majority of my energies and time.  I have a list of issues and phone calls to congressmen that will trump my everyday life tomorrow.   I am sad and fearful and agitated and distracted and rightfully so. While I have felt this way before on social media, I shut my computer down for the evening, be completely present and come back to a virtual life renewed. I can go back to meaningless status posts that make at least me chuckle at myself. However, in this political climate, I would be this way without Facebook and am having trouble finding meaning in those meaningless status updates. And with it?  Well, I feel much like I often do about real life.  Like I need to take a break from it.

Now I lay me down to sleep….

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4:17am

My beautiful boy wandered into my room tonight.  His curly hair tousled around his cherub cheeks, pajama bottoms twisted in a spiral around his hips from tossing and turning…he marches in quickly as if he had somewhere important to be and then suddenly stops at the foot of my bed with purpose.  He rubs his dazed eyes all the while smiling that big Cheshire Cat grin of his. “Hug”, he says as he makes that long trip to the other side of my California king.   I can’t say I hate it when that happens.  He is warm and cuddly and doesn’t thrash and kick like he used to when he was little.  To the best of my knowledge, A2 has never slept a full night in his life and no one can tell me why.   As he gets older, he seems no worse for the wear for it either.  The stretches between night time explorations have become longer and my husband and I have become a tag team settling into separate sleeping arrangements at night over the years to ensure at least one of us wakes to the new day refreshed.   He tells me “scootch magooch” as he encroaches on the sliver of bed where I sleep and drifts off as swiftly as he made his declaration of his sleep intentions.

The thing is, my husband and I never wake up fully refreshed.  There are Things That Keep Me Up at Night. Who will hug him when we are gone?  Who else will find his sweet smile so endearing even at 3:00am?  We try to be optimistic about his future.  A2 will likely never be able to live independently, but dammit, we bought him a house and we rent it out to people today so in 15 years he will have a place to live….maybe even with 24 hour support staff and 2 or 3 other guys who are sweet spirited sports and music fans like he is.  We live in an expensive school district despite struggling to afford it to make sure he has the best education and connections for his future.   Though we are socially isolated as a family because such is the nature of autism, I remain involved with my religious congregation so he is never alone. SOMEONE will always know and recognize him.  I advocate and I write and I stay present in the disability community so he will always have that community too when it comes time for some else to step in as a guardian when I can no longer do it. A touchpoint for that kind stranger to get guidance or direction. We save the best we can.   We plan for the best possible services and outcomes to give him a meaningful life worth living. We are uncertain what services  will help house him, feed him, care for him.  We can’t be sure that there will be vocational training or health insurance or social security disability payments. All of which is unnerving when you know there will be no one to love him or snuggle with him or wipe away tears.  So we plan as best we can knowing surely, there will be some kind of services for him.

But tonight there is no sleep because now I am not so sure.  I know in the morning light I will look at everyone with a suspicious eye and wonder who around me willingly voted for another reason to keep me up at night. Half the population wanted political change and they got it and whether the overt intentions were there or not, they were willing to make children like my child the sacrificial lamb.  My child will always be dependent on others to be his voice, to protect him….his rights, his body, his dignity . My child and others like him often have no option but to live in poverty and have no political influence as adults.  I am terrified for him because no matter how much we plan, no matter how much we go without today, if it is acceptable for the leader of our country to marginalize him, make fun of him, call him the R word what does that say for the people around us who brush that off and traded my baby in for not voting for the vague “yeah, but she’s worse”?   What happens when it is a decided that my “standard retard” is a drain on the system making everyone elses’ life more difficult?  There will be a supreme court in place likely for the rest of his life who will err on the side of believing that as a universal truth.

The only politics I ever talk about in my writing is my belief that most people are good but misinformed. Perhaps not in my lifetime, but certainly in his, I believed that it was possible to change the world around him enough that true inclusion and a dignified life were possible and through that, the need for the work of disability advocacy would dwindle.  Perhaps I truly believed all that because I see the innocence in his eyes.  He is a pure soul who has helped me see good first and maybe I can spread that message for him.

So, forgive me if you were one of the people who so desperately wanted political change if I seem a little distant from you.  While I am hopeful that my fears are akin to “they’re taking all our guns from us!” it’s a bit harder for me not to be devisive when we are talking about my baby.  But don’t worry….A2 won’t judge you.  He is forgiving and will love you anyway.