5 Things You Should Know About IDEA

School is in full swing. Maybe you have a child on an IEP or 504 plan or perhaps you suspect your child would benefit from additional help or services. The Individuals With Disabilities Act is in place to make certain your child gets what he needs but like most laws it is not perfect. Here are some things you should probably know…..

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

I is for IEP, IDEA and Inclusion.

These three “I” words have forever changed me as a person.  If you have a child in special education, you probably just had a shiver run down your spine just by reading those acronyms in print and may be thinking the same thing.  All of these things serve as a blessing and a curse to our kids…and also to the educators and administration serving them.  Back in the day, the Individuals with Disability Act (IDEA) was enacted to refine and replace what few laws there were to protect children with disabilities within the education system.  It was meant to also focus more on the individual rather than on the disability itself.  IDEA has…

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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.

The Tail Wagging the Dog

On the eve of your 3rd birthday Wally-woo….king of all dogs, master of me….
“I relinquished the idea of a service dog for A2 years ago when I learned that an application was only the first step in a lengthy and costly fundraising and training endeavor…a cruel (but necessary)paradox for a middle class family supporting a child with a disability. So when I saw a post in a local Facebook mom’s group about this agency’s need for foster families for their breeding program it was a no brainer.

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Our dog is a bit of a sonofabitch. He is playful and fun and sweet and well behaved. Until he is not. And it always catches us off guard. 30 rounds of chasing the ball and joyfully bringing it back is often followed by a random and somewhat humiliating drive-by where he passes me up, runs 3 yards over and pees on the neighbor’s dog. The ability to look nonchalant and nonplussed at the same time after your dog just defiled someone elses’ beloved pet is something that only the parent of a child with Autism can pull off with Merylstreepworthy street cred. As I breathlessly call his name while chasing him in circles with what I believe to be an audible background soundtrack of the Benny Hill theme song, I will often submit myself to the idea of giving him back to the service dog agency. Wally came to…

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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.

 

 

 

 

 

It’s Not Your Mother’s Mother’s Day

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To my children on Mother’s Day:

You did not ask to be born.  You did not ask to walk this earth and you certainly did not create your own realities and struggles….at least not yet.  You did not get to choose me as a mother.  I can guide you in ways that I think will ease your journey but ultimately your external successes and failures will be YOUR successes and failures.  You get to have those on your own and I will rejoice and celebrate and swell with pride as if I created those monumental moments but I do not get to take credit for those.  I will feel guilt or shame or sadness in your failings or perhaps I will distance myself from them for those same reasons, but ultimately I don’t get to take credit for those either.   Whatever respect or love you have for me through each stage of your lives is created, taught and fueled by me and  while those things feel like an expectation when it comes to a mother, in every other situation those things are earned….I will assure you it is the same in our case. It is not my expectation that you celebrate me today.  If anything, the onus is on me to celebrate you.  You made me a mother and by proxy after 35  years I was given the gift of the ability to feel love unconditionally.  I don’t choose to love you…..I have no choice.  What I do with that part is up to me. You do not owe me for being attentive to your needs, by making you a priority.  That is my contract with you regardless of circumstance.

So on this Mother’s Day, I celebrate you both.   The loves of my life.  May you:

–Never feel as if your existence was a burden to me.

–Always feel like a joyful priority, even when I have forgotten to appreciate that myself

–Recognize that you are separate from me….that my sadness is not your sadness…my expectations should not be your expectations, my disappointments are not your disappointments.  If I am doing this right, I will not feel like your obligation.

–Know that in my humanity the above might not feel that way because nothing makes me feel more joy than your joy….nothing makes me feel more worry than your worry…and unfortunately there is not much I can to about that.

–Never feel less because I acknowledge your differences.

–Always feel safe in telling me your thoughts and ideas no matter what.

–Know that when I don’t understand your needs that you may not be able to change that but you can ask me for more patience

–Always feel the love and respect I have for you and I hope that I have done my job in teaching you how to have the wisdom to distinguish and create healthy distance as you grow when others are not treating you with love and respect who should be.  Including me.

–Know that if I am feeling selfish or if I cannot manage something when it comes to you I will protect you from that by being honest so you never misunderstand my intentions.

If I am raising you right, for me every day should feel like the holiday we are told is Mother’s Day.  But for today, I celebrate and thank you for being given the privilege of being your Mom. Now let’s get to the Zoo.

xoxox

 

 

 

Day 25 2016: Y is for Youth

Day 25 2016: Y is for Youth
(Originally posted 4/2015)

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day 25

The sticky wicket of Autism. There are some moments I feel particularly lucky for autism. Those moments I watch slip away from my friends who’s babes with bountiful curls framing cherub faces ask for the straightening iron ……who have their gossamer wings clipped to keep their feet firmly planted on the ground….who no longer rub the wonder of dreams deeper into their eyes when they are sleepy….I would imagine it’s the bittersweet joy of having children…watching the transformation from innocent Angels to inhabitors of earth. I get to cavort with an angel for longer. I still get to hear a gasp followed by “look mommy…moon!”. I still get warm snuggly visits at 3AM. Bubbles are still magical. Raffi is still the only fully grown man who can sing wheels on the bus and get a rousing sing a long at our breakfast table. A2 can still do interpretive dance in…

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Day 24 2016. X is for X-Ray.

Day 24 2016. X is for X-Ray.
Originally posted 4/2015

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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…

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Day 23 2016. W is for What It’s Like

Day 23 2016. W is for What It’s Like.
Originally posted 4/2015

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Day 23

W is for What It’s Like

“There is grandeur in this view of life…..from so simple a beginning endless forms most beautiful and most wonderful have been and are being evolved”On the Origin of Species, Charles Darwin.
A few years ago I attended the funeral of a friend who suffered and died much too young. He was a scientist-a biologist, an activist, a researcher who was respected in his field and likely the smartest person I knew. He was also pedantic and opinionated with a biting but funny sense of humor. This combination engaged even the most simple of us but most of his friends were equally as interesting and I got to numbly stand in a room in Vermont in the dead of winter surrounded by them. “What’s it like?” a friend of his asked me…”having a child with Autism?” For a moment I just thought I…

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