Autism and the Dentist: Top 5 Tips for Successful Visits

**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 Did We Get Here?

“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 it came to medical stuff.  A2’s anxiety is through the roof if he even THINKS its possible he has a medical appointment.  For awhile I had to drive a different route to the highway because we PASSED THE STREET to his pediatrician on the regular route and we could count on screaming, thrashing and tears until we were well on the road.  He even developed  pre-cognitive psychic abilities regarding medical appointments and would wake up with a big pouty lip with his first garbled words of the day being “no doc-er”.  On a side note, my cat used to do the same thing for vet appointments.  He would already be completely missing by the time I would have the carrier waiting by the door. Maybe my poker face isn’t as good as I think.

I blew my nose without regard to the fact I was on the phone, ” Did you have extra clothes and a towel with you? Is he ok?”.

“Yeah, he’s fine.  But I think we should change dentists…what the hell?”  I knew he was referring more to his own bruised ego but also to having no idea just how difficult dental appointments were.  He had experienced the pre-appointment anxiety and even parts of the wind up to the meltdown but the full on explosion with physical aggression and vomiting was newish for him since this was my area to tackle as a free agent and not a team since I had more work flexibility.  He knew appointments were difficult but I don’t think until that day he fully realized my anxiety and careful planning around the twice a year dental check ups, the annual physical exam, the quarterly endocrinologist appointments, annual neuro, GI and orthotist visits.  In other words….at least once a month I had to carefully plan an entire day around a doctor appointment because I was never sure how it was going to go down.  It takes its toll as a mom.

And the most heartbreaking part for me wasn’t even absorbing A2’s anxiety or physically holding him down or by my own bruised ribs or aching muscles or watching him turn purple and sweaty in hysterics with a handful of my ripped out hair.  No…it was always that moment he knew the appointment was almost over and he would turn his head to the nurse or doctor or dentist and through his hyperventilation and tears he would give them a thumbs up.  Cru-shing.  He knew no one was really going to hurt him.  He likely heard all the gentle words about his safety and social stories about visiting the dentist.  He likely knew this was something we all have to do for self-care. And yet he also knows he has no control over that autistic brain of his to prevent the escalation.  Always a reminder that I just have to try harder for him.

Fast forward to yesterday.  11 years, 2 months, 26 days into A2’s short little place on the planet he had his very first REAL dental cleaning and x-rays.  Mild drama and tears….and he is still proclaiming “no doc-er” this morning. But no contusions, no sweating, no projectile vomiting.  He even left the office smiling covered in Avengers stickers and with an armful of autism-unfriendly prizes from the prize box (see exhibit A ).

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Exhibit A.  Prize box find.  A tiny diaphragm for your kid’s windpipe.

I left the office knowing that my kid had no cavities, no gum disease and apparently he only has one more baby tooth left in his beautiful little mug. So how did this happen?   A2 still hates having his teeth brushed at home….this will likely never be something he ENJOYS. Certainly no miracles and no single place to take credit, but here are some things that have helped.

TOP 5 TIPS

  1.  Find a dentist who recognizes sensory processing issues/oral aversions/autism/mental health issues as real conditions and not as being difficult to be difficult.  Make sure the dentist and their staff are not fearful and can approach your child in a calm but authoritative way.  If you are uncomfortable with any part of the procedure or philosophy or office set up, discuss it with the staff or move on.  And it does not hurt if the dentist is eye candy.  But that is just for you moms/dads….your kid probably won’t care about that part.
  2. Consistency and exposure.  Don’t NOT take your child to the dentist because you think he will wig out.  This doesn’t mean you have to get him in the dental chair right out of the gate if it is too much like visiting with Willy Wonka’s dentist dad.  Take baby steps.  Bring him to sibling appointments. Bring him in between visits just to say hi to the staff, look at the fish in the tanks, or check out the new toys or stickers in the prize boxes. Read books about going to the dentist. We took pictures of step by step A1’s appointments and made a social story for A2.  Reward approximations toward compliance.  Document it for yourself so you can increase your expectations of him as you move forward.
  3. Bear in mind what triggers your kid and plan for it.  While you don’t want to sneak attack your kid when it comes to appointments, if you know that too much advance warning will cause perseveration without extinguishing his anxiety or will cause escalation in the days ahead…then don’t tell him yet.  Figure out the “sweet spot” for that.  For A2, we nebulously talk about dental things between visits and tell him about the appointment in the car the day of.  Other kids all is well and good until they see the dental equipment.  Find out if there is alternate equipment available and have them use it while exposing him to the stuff that scares him.  For years, we used cups of water instead of the squirt gun and suction thingy from hell.  We used a regular tooth brush and the toothpaste from home.  The dentist wore my sunglasses instead of the big, nerdy lab glasses.  And for the love of all things holy….if your kid is a puker…DON’T feed him before the appointment!
  4. Talk to others. Discuss the issue with a speech therapist to see if there are oral motor exercises that will help desensitize him before visits.  Your BCBA or psychologist should also have a trove of ideas or may even work on this as a behavioral goal with him.  Talk to the intervention specialist–especially if she is very experienced because it is likely she has helped other families in the past come up with ideas tailored to help specific problems.  She is likely the only other person who knows your kid’s quirks or difficulties with compliance and is constantly planning for it. Consult your autism village…another parent might have a helpful hint for you.
  5. Know Thyself.  I no longer martyr myself when it comes to appointments.  My husband did not know I was heavily grieving and fearful of these appointments and I think he started recognizing my anticipatory anxiety as such instead of just assuming I was being histrionic.  If you need to trade off…do so.  It doesn’t have to be a spouse.  Your kid picks up on your anxiety even if you think you are cool as a cucumber….but you already know this from other experiences. You see cukes…he sees pickles. Ask for help if you can.  Leave the room if he is more compliant without you being present.  Do not see it as a failure if you cannot overcome this hurdle. Many families cannot.  Contact your local chapter of The Autism Society, Autism Speaks or Board of Developmental Disabilities to help you locate a clinic that is trained and licensed to sedate or restrain as a last resort.

I would rather___________ than go to curriculum night.

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Many years ago when A2 entered the public school system, we moved him from a private school with a peer program and an ABA focus.  He is so influenced by his peers we thought maybe it would be a good time to bring him back to our school district while he was so young.  It was no small decision and perhaps ultimately made under the haze of Xanax. 

I waltzed into school on curriculum night, notebook in hand, mascara and lipstick reapplied. I waved and smiled at other parents I recognized from the neighborhood. We chatted about the end of summer homeowners association picnic and how nice the tennis court was looking now that they repainted it and we absolutely should get together for tapas sometime (how has that not even happened yet?!)

The desks were so small and facing each other.  Tidy containers of crayons divided by color, posters on every square inch of wall space, shelves that housed bin after bin of books. Mobiles hung from the ceiling.  Not at all what his ABA classroom looked like…way too much to distract..but it was all good.  He will learn to adapt to this no problem. The neighborhood kids are all here!  Someone took the time to take all the crayons out of the boxes!  

I found A2’s desk and it had a paper name plate with cartoon pictures of pencils and school buses just like everyone else. 

There was an envelope on his desk with all the “getting to know your child” papers like everyone else

There was a tidy blue folder with the agenda for the evening waiting for us just like everyone else

Sure, my mother hips were hanging over both sides of the tiny chair. And sure, the middle aged teacher greeted us and held her gaze with my husband much longer than she did with me, but that’s what we do here in public school!

Normal, regular people stuff. 

Then the teacher started talking.  And talking.  And asking us to turn pages in our packets.  And telling us what our kids can already do walking in the door on the first day and where we could expect them to be when they walk out on the last. 

The road map to get there sure as hell was not the road map to get to Italy or even Holland for A2.  Nope. Flyby right over Europe to the heart of Syria (which I hear is really, really nice this time of year….really nice. Hot.  But it’s a dry heat.).

I did not see the person who punched me in the stomach. I didn’t even know that a sucker punch was possible in a mainstream classroom. Before I could find out if a bitchslap was next, I gathered my things and walked out.  That teacher never did follow up with me to find out why I left, or if I was ok or if my husband liked her new back-to-school-sleeveless-blouse. 

A2’s intervention specialist saw me in the hall and gently said “..come with me to the resource room where he is a rock star. I’ll show you around.”  She meant well, but he could be a rock star at his other school. 

I decided right then that the only way I would ever cope in another curriculum night was if I could sit at one of those tiny desks with a Big Mac and a bottle of Stoli while listening to other parents ask questions like, “What if my child is above the standard for reading?”  or complaining at the lack of computers in a room he won’t actually get to be in. I might be able to get away with the Big Mac, but the vodka would probably be  frowned upon at the administrative level.

Don’t misunderstand…my boy is perfect in most ways to me (sometimes he is a bit of an asshole…no one is 100%) I don’t fit a mold and when I realized I was going to be a mom 13 years ago, I had no expectations my kids would either.  I embrace the weird and inappropriate and many days it takes all of my will to push my monkey brain back into it’s cage before it starts flinging poo. 

I’m ok with all that

What is hard is that the rest of the world generally is not. 

While he gets the desk and cubby just like everyone else, he doesn’t get to have sleep overs, or bathroom privacy or even a way to ask  other kids if they will Facetime or text him later. 

Due to “confidentiality” the helpers assigned to him are not allowed to tell me the names of the kids he would probably want to ask anyway. 

He doesn’t get detention for talking out of turn or showing up to class late. 

He doesn’t trade carrots for cookies with the kids at lunch.

The bins of books must still be read to him and doesn’t get excited when he hears about the release of the newest Harry Potter book. 

And curriculum night?  Well…all those things are written in the blank spaces between the lines on the syllabus.  The syllabus that is only visible to certain parents.  Not just like everyone else.

The tiny desk is like a mirage.  Those things don’t happen because those are not the things that are important to the people who spend 7 hours a day with him.  Goals are set to reflect the things A2 CAN’T do rather than what he CAN, whereas the curriculum for the rest of his peers are focused on what they WILL do.  And not just at 80% accuracy in 4 out of 5 observed opportunities.  I spend my life cherishing the tiny accomplishments inching along unseen by the naked eye or letting hurtful comments roll of my back like water off goosefeather by people who meant no harm. I can sit through all of that, but it reminds me my child is lonely. 

And I won’t sit through that. 

So tonite, the very last curriculum night of elementary school for me ever….like a pro,  I went in, signed my name on the volunteer list, eyeballed the room of parents , took 2 tums to settle my stomach in anticipation of the Big Mac in my mom-bag and walked out.

The bottom line is I would rather have heartburn and a hangover than go to curriculum night.  What would you rather do?

The Mending Wall

IMG_6047These wildflowers grow on a narrow strip of grass between someone’s property up against a century old stone wall and a city sidewalk near my home. There is a handwritten sign on a stake stating simply PLEASE DO NOT MOW OR SPRAY WILDFLOWERS. THANK YOU. While seeing them in full bloom one might wonder why someone would do that even when instructed to.

Today we were shaken again to our core. Today we were reminded again that nothing should be taken for granted. I am angry that again I feel afraid for my children when they leave the comforts of home.  I am conflicted because A2 is sick and at a time I should be saddened for 50 families and frightened at the fact that laws continue to exist that allow for permits for individuals to decide the fate of 50 people in one rain shower of shots. People who were given the right to exist with equal love are gone and we are all reminded there is still an opposing view.  But A2 is the kind of sick that makes his father talk in circles and makes me stone faced and logical. The kind of sick that sinks our instinctual fears as parents until the wind kicks up again and fills our sails to let us know it’s smooth waters soon. I can’t fear all things at the same time.

So I can stop to show you these flowers I saw today. And you can stop to see them. And we can all appreciate that someone stepped up to make sure that they bloomed to their full beauty for all of us. Please see them. Just for this moment. ‪#‎onepulse‬  

On the Eve of Your 11th year…..

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Your brother saw the ocean for the first time about a month before we knew you.  The expanse stopped him in his tracks leaving him silent and still.  The moment you were born 11 years ago today you cried and screamed and when they held you up for me to see I instinctively whispered your name.  You stopped crying, found my eyes  and you were silent and still and you took my breath away.  Your presence in our lives has been like seeing the ocean for the first time–beautiful and tumultuous and every day is like seeing the world in a way no one else gets to.  I feel lucky I get to be your mom.  Happy Birthday sweet A2…….

The Gorilla in the Room…..

There have been so many news stories, articles and commentary on social media about the tragic situation over the weekend that at this point I am fairly sure you would have to live in a cave to not have at least heard about it.  In case you do live in a cave, here is what I know about the situation with the little boy who fell in the Gorilla exhibit in Cincinnati:

  • He fell 10 feet into the moat
  • He fell 12 feet into the moat
  • He fell 15 feet into the moat
  • He was seriously injured but with non-life threatening injuries
  • He came out without a scratch
  • The gorilla rushed him but did not hit him
  • The gorilla approached him cautiously only after hearing him splash in the water
  • The gorilla did not intend harm, he almost seemed to be protecting the boy
  • The gorilla violently was dragging and throwing the boy in the water
  • It took 10 minutes before anything was done by rescue team
  • It took 15 minutes before anything was done by the rescue team
  • The boy had his hand in his mother’s back pocket to stay close and in a flash he was gone
  • The boy’s father crawled out onto the ledge to jump down into the moat
  • The person who filmed the footage crawled out onto the ledge to jump down into the moat
  • Eyewitnesses say she was on her phone and not paying attention until they saw him in the water
  • Eyewitnesses say the boy was gone in an instant and he was seen crawling out onto the ledge and was pursued immediately by family and spectators alike

From reading up….here is what else I know:

  • Jungle Jack Hanna supported the zoo’s choice to kill the gorilla because there was no other realistic option
  • A large part of the community did not support the choice to kill the gorilla and sees the tragedy of killing an innocent endangered animal because there were other options
  • A large part of the community ponders how in the world the zoo could have such an unsecured area that a child could breach it that quickly
  • PETA did not support the choice to kill the gorilla OR have him in captivity in the first place for our entertainment
  • A child slipping away from a parent can happen to anyone in an instant
  • The mother is completely responsible for the death of that gorilla, is a neglectful parent and clearly was not watching her child and should have him removed from her care to be raised in foster care.
  • The mother has received several death threats
  • A gorilla is dead and a boy  is alive

And lastly….here is what else I know:

  • A 4 year old boy is alive
  • NOTHING.  ULTIMATELY, I KNOW NOTHING.  AND NEITHER DO YOU.

Yes, its a tragedy no matter what.

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Not gorillas…..I know….but I own the image.

 

 

 

 

 

Day 10 2016:J is for Just Ask

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J is for Just Ask

When I sat down every day last year to do this A-Z project, my biggest take away was the candid responses from friends and acquaintances.  Many of whom told me they wanted to reach out, but didn’t know what questions were ok to ask.

I understand that on a few levels:

  1.  As an inhabitant of this earth, when we see something we don’t understand or is different, we feel compelled to want to know the “why” or the “what happened”. Perhaps its part of the survival instinct-  A primitive way to avoid something that is contagious or preventable.  So, often times when it’s not thought about and someone approaches me and says, “what’s wrong with him?”, my instinct is to say back, “rude people are what’s wrong with him”. When I shift my schema and recognize that even in those awkward moments there is the possibility to make it teachable, I can have a lot more empathy for the individual asking.  After all, I am not sure I am that much more comfortable with a stranger asking me a more direct question either. (ie: “why is he making that hooting noise over and over?”when really I might have absolutely no f-ing idea myself in the moment but I would very much like it to stop).  Parents–whether we like it or not, we are the conduit to bridging our children with this society Many of us are their voices. Even if one person out of 10 who ask are asking to be nosy or rude, if we do not respond as an advocate, we make the assumption that all people who ask in that way are being nosy or rude.  So, instead of “mind your own business” or “whats it to you”, maybe try, “I think what you meant to ask is that you notice that he can’t talk.  This is his speech generating device, would you like to see how it works?” or “My child can understand everything you say and the way you asked that in front of him makes me uncomfortable.  There is nothing wrong, but it seems like there is an aspect of his behavior that you would like to know more about.  He has Autism and maybe one of us can tell you more”.  Pollyanna much?  Sure, but the only way we will change the asker’s behavior is by gently alerting them to the problem, offering a solution and giving them a reality check.
  2. On occasion, people want to ask how they can help. More times than that, people don’t realize we need help.  For those of us who have kiddos who don’t have a obvious trouble in the community, we move along to normalize our experiences. I have been told that I give off the air of having everything under control and that I don’t need anything.  Part of this is for my kids benefit. No one wants a hot mess of a mom in public.  Another part of this is because as my job as a therapist in this close-knit community, I feel like I need to maintain a balance of vulnerability and strength. The hot mess part needs to ride in the back seat to ask “are we there yet?”.  There are other parents whose kids CANNOT safely be in public places.  So, you just don’t see those people.  Their life behind closed doors is like an invisibility cloak and they are not getting asked what they need for those reasons.  Frankly, many of us have NO IDEA what to tell you about how you can help. My family comes infrequently enough, that to dole out a honey-do list also requires having to walk them through where things are, etc. Ultimately, this means more work.  If there were an emergency, they are not enough of a trained listener to know what my child needs if he tells them.  When a friend asks if they can watch my kids so we can get out…well, I still haven’t figured out exactly how one explains that you can’t imagine asking them to change a 10 year old’s diaper ….or telling them they probably won’t get to sleep through the night and must keep one eye open when they are sleeping.  Sometimes people ask to help but they just don’t want to do what you do need. Their perception becomes that you are unreasonable. It is your own fault you are not taking their help.  All can serve as barriers to asking the right questions or giving the right answers for assistance.
  3. People make assumptions instead of asking at all.  Just the other night, a young woman I work with asked me for advice in a situation about a member of her not-for-profit youth group. This teenage girl has Autism and when the entire group is together she tends to get very dramatic and will end her tirade by running out of the room.  This young woman sighed and said, “She only does it in big groups. Obviously attention….we are thinking of ways to let her know that maybe this group isn’t a good fit for her. It’s not-for-profit, so we can’t tell her she can’t be part of it.” We discussed the fact that perhaps they were misreading the function of the girl’s behavior.  The consequence is what sustains the behavior– if no one is rushing out after her, what is the likelihood that this behavior is to get attention and not escape or something internal due to the stress of being in a large group?   She wondered aloud if they should contact the girl’s mother to try to figure it out.  I wondered aloud what would happen if they just asked the girl herself, since she is her own expert.  Use the time and energy to find out what she needs to be a part of the group in a way that works for her rather than using that energy to figure out a way to help her move on.  We cannot help but to look at others using our own lenses.  But sometimes our lenses are smudged, are rose colored or even broken.  By not asking in this kind of situation, others assume they know what is best.

Lets face it. It’s uncomfortable to ask about people who are different than we are. 

We may be curious, afraid of coming off as rude or misread other’s cues.  We may not want to know the answer, we may not want to change our own ways.  We may already have assumptions and think we are right, we may be uncomfortable due to our own scripts about social norms, or frankly, some of us…we may just not care. 

For those of us being asked, we may be offended, we may be hurt, we may not want to talk about it.  We may not know the answer, we may not want to admit to an issue or call attention to it or we may not want to be reminded.  We may not want to be rejected. 

So let’s all agree on something. Asking and telling can suck at the outset.  Let’s move past it.

Those of us who are Autism Families…we ARE the awareness. How you choose to let that manifest is up to you.  In my world, however, if you ask me, I promise to tell you.

Autism Awareness Month. G is for Genetics (and Guessing)

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G is for Genetics

I get asked often what I think caused my child’s Autism.  I believe it is completely counterproductive to even consider it until such a time that there is solid evidence.  They are here now. I love my kids fiercely. Our struggles would be the same whether or not we knew the ‘why’ part.

Infection in mother during pregnancy, vaccine accidents,  overweight in mother during pregnancy, gestational diabetes, inadequate iodine, diagnostic ultrasounds, prenatal stress, advanced paternal age at time of conception, pesticides both before and after gestation…I’ve read those all.  And they all have the same message:  “Dad….Mom (but more likely Mom)…you did something…IT’S YOUR FAULT.”   These theories are also part of what drives the Neurodiversity movement.  That is, that individual differences and biological diversity are a normal and natural part of evolution and Autism is no different, so it is not something to be treated. Behavioral disruption is misunderstood communication and all the comorbid conditions such as GI/bowel issues, intellectual impairments, mental health issues are just that. Something not related directly to Autism (a whole other can of worms within our community….).

Regardless of your belief system…there is only one thing we know for absolutely certain: NO ONE KNOWS WHAT CAUSES AUTISM.

To demonize parents who make decisions you would not necessarily make is also counterproductive. 

As parents we have an instinct to protect our children. When a parent watches the baby she knows slip away into a world of of silence or pain in front of her very eyes and no one can tell her why or really what to do..well….just take a moment to let that sink in regardless of your parenting/political/medical stance. I don’t have to agree, I just have to have empathy.

Here is what we do know.  There is a genetic component to Autism and it is likely paired with an environmental trigger.  Just like Type 2 Diabetes. You can’t develop this unless you have the genes.  You make it far less likely to get it if you get your butt up off the couch, exercise regularly and do not eat like a regular American.

We just are not 100% certain what that common genetic component or the environmental one in Autism.  I am not going to even pretend to know anything about genetics. The best I can do is tell you:

  1. Picture a city with 20,000 streets.
  2. Now lets figure out which streets have public mailboxes, one way traffic, standard poodles and single mothers living on them.
  3. Only some people who travel down those streets buy mandarin oranges (not regular naval) and we need to find those people.
  4. (But what about the naval orange buying people!? Those are a lot like mandarins!)

That is what it is like trying to figure out the common genetic factor and environmental trigger together. When I had a discussion about this with a pediatrician 12 years ago she said to me: “Autism is caused by a genetics. Period.  To consider anything else is ridiculous.”

I sat for a moment and thought about that.  I then I wondered out loud, “Can you tell me another genetic epidemic in history that unfolded like Autism?” Crickets. I’m a pretty moderate parent…however it is no wonder that many parents are suspect of the medical system with that kind of definitive statement when the bottom line is WE DON’T KNOW.

Does it mean my husband and I have Autism? No, not necessarily…but who knows?  If we do carry that genetic material and we combined it….we no more caused the autism than we “caused” their big gorgeous brown eyes or fact that they may need to wear glasses one day. Their eyes could have almost just as easily been blue instead all things considered.   And if environment did play a role and all the Fruity Pebbles I ate during pregnancy kicked those  genes into overdrive as the environmental trigger, there is not a damn thing I can do about that now.

I have never felt the “shame of blame”…and I don’t think any parent should.

We are wired to procreate and continue population.  We can just hope that this kind of information will one day find the link that allows children who suffer in silence or physical or emotional pain to grow to be independent and happy…just like all parents want their kids to do.

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

Though Halloween parties have turned into “Harvest Parties” at school, the anticipation and sentiment of Halloween is still timeless. As a parent I find myself still caught up in Halloween and 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 Ninja Turtles who could just very likely just be the same child over and over again capitalizing on those homes who everyone knows passes out 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….and another parent was willing to not only exclude him, but risk his safety because she was so excited about her adorable witch hat 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: The Teal Pumpkin project is a new idea sweeping through social media. 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. Also, for class parties, 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 buddy up with a child who can model. Sometimes “just a hat” IS a costume with enough thinking on the fly.

Freddie Krueger
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 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….. (…and feel free to smile at this picture….)

Autism Awareness Month. F is for Food.

Day6

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 last a lifetime. So-the next time you are out to dinner and see a mom letting her kid eat Poptarts or a huge mound of fries for dinner–she may not be spoiling her kiddo….that dinner may also be 8 years in the making.

F is for Food…Part 2….Behind the kitchen door

There was this moment  when my then preschool aged child and infant and I were sitting at the dinner table.  I had my plate of one protein, one complex carb and leafy greens, napkin unfurled neatly in my lap, fork down after every bite. My prescribed Xanax appetizer was working as I sat there all June Cleaver-like smiling, asking about finger-paint and sandbox filled days, modeling healthy eating, modeling appropriate mealtime behavior…like I tried to every single day  with little to no success.  Dinner was cuisine and varied every night but there were 3 different dinner plates on the table.  A1 wasn’t growing well and complained every mealtime that his stomach hurt.  It would take him about 1/2 hour to eat even 50% of his meal but a big part of this was because he could not stay seated , would play with his shoes or get up to get a toy.

“Where are you going?”

 “Did you have fun with your friends at school?”

“4 more bites.”

” You love buttery noodles, remember?”

“Don’t lick your shoes.”

“The timer hasn’t gone off yet.”

“I love this picture you made, tell me more about it.”  

While this was going on, A2 sat strapped in to his high chair at the table with mounds of “power packed” foods.  Macaroni and Cheese made with extra cheese, heavy cream and special calorie powder stirred in, crackers, whole milk with carnation instant breakfast.  I was taking him to the doctor every several days for weigh ins because he was not growing or gaining weight with any normalcy.  His Help Me Grow case worker taught me how to increase his calories…something that his dietician did not show me…or even suggest.  He was eating about 1000 calories a day which was about the same amount I was eating to maintain pudgy and yet he still he would only gain ounces over the course of a few weeks.  It made no sense.  Most evenings he would sit in front of his food and not initiate eating so between my own bites I would a cajole him into letting me stick a Mickey Mouse spoon between his lips. He chewed funny. It did not look like he enjoyed eating, but generally he never fought it.  But not this night.  He turned his head from me and giggled at A1 who was now slowly sliding out of his chair, disappearing under the table.  A2’s last weigh in he had dropped 4 ounces but we had no idea why.  (Maybe I needed to put more of that Nestle Additions stuff in his milk?  Should I switch to Boost?  I think that has more calories.  I wish he liked doughnuts!).  In that moment, I experienced PXF (Parental Xanax Failure) and June Cleaver went bye bye. The underlying and increasing anxiety I was having at mealtime that caused me to medicate so I remained calm and cheery sprang to the surface and yelled “Ta da!!!  Here I am everyone!!”  I snapped at A1 to sit in his chair immediately and accused him of distracting his brother to the point of not eating….and his stomach is fine….so finish that spaghetti and garlic bread!   I got out an assortment of spoons hoping A2 would pick one he liked better. He did not. As he sat thrashing his head from side to side and mooshing his lips together to avoid any possibility of the airplane making an emergency landing in his mouth I began bawling and begging him to eat like some bad drama actress from the 1940s. Meanwhile, A1 got up from the table to poop.  What the hell was I doing wrong?  Kids just eat, right?

About a year later, I dusted off that MOTHER OF THE YEAR trophy I earned that day and dropped it in the trash.  A1 started losing weight and his pediatrician started taking his constant loose stools seriously. He had an elevated EMA (antibody test that is specific to gluten…as in that stuff found in spaghetti and garlic bread).  After a week of no gluten he had his first normal looking poop of his life and soon after no more complaints at mealtime.  A2 phased out all solid food before he turned 2 but was increasing the amount of Pediasure he drank.  Within the month of being on a self-induced liquid only diet, he started sleeping much, much longer stretches, started walking and got consonant sounds.  Sure, he projectile vomited 3 times a day but he seemed much happier. His head never spun around even once so we were fairly sure we were not going to have to call for an exorcism.  To save money we switched to the a big box, El-Cheapo version of Pediasure.  What we saved in monthly bills, we spent in clean up costs and therapy bills for A1 because the vomiting seemed to increase–as did his target range. And like fine wine connoisseurs, my husband and I decided the bouquet of  El-Cheapo vomit was not as pleasant as Pediasure vomit.  A1 and his hypersensitive sensory system were traumatized. (see exhibit A)

 

IMG_3936
EXHIBIT A:  Things he likes to smell:  Perfume.  Things he doesn’t like to smell:  Vomit

Through deductive reasoning, I concluded that El-Cheapo brand was making it worse, we switched back and he improved.  A few years later he improved even more when an integrative medicine doctor suggested he couldn’t digest dairy and thought he should be on a “pre-digested” prescription version of the same thing.  “Oh…no.  We had him tested, he’s not allergic to dairy…and our GI said its probably just a mito thing”.  But sure enough within a few weeks of switching again, A2 stopped vomiting.  Completely.  And he was willing to play with and then even taste a few foods.

There is nothing more instinctual to a mother than nourishing her child.  Our species would not survive if this were not the case.  When your child has feeding issues it is normal to doubt your instincts, to question what you are doing wrong, how you are messing this up.   Have I had to drop a few $20s into the therapy jar for later due to my own reactions?  Sure. I am human and I find there has been almost nothing more unnerving than my child not eating or feeling sick when they eat but no one can tell me why. And when someone finally figures something out and they get better to start questioning EVERYTHING.  Make sure you are being honest with yourself.  Are you trying the best you can?  Are you revisiting eating with your child?  Are you trying to create a more relaxed environment at mealtimes?  Can you, especially as a woman in this society put your own food issues aside?  Pat yourself on the back if you can answer “yes” to those questions because your child will continue to thrive because of you.  Breathe….and most importantly, enjoy your meal.