Autism and Middle School- OH MY!

Starting the new school year can be tough on any kiddo. Transitioning to middle school is probably one of the biggest anxiety inducing transitions! Now- let's throw autism into the mix, and the challenges become more intense. Kids with autism usually have struggles with things changing, and a new school year is chock full of changes. New schedules and routines to get used to. New teachers, finding classrooms, finding lockers, having gym EVERY SINGLE DAY (is that just me?) , new educational and behavioral expectations, new rules for 7 DIFFERENT CLASSES!! Anxiety and stress are at maximum levels, meltdown probability  at 99-100%. PLEASEDONTLETITHAPPENATSCHOOL! ( I am already freaking out.)

On top of everything else- the change of seasons affects our kiddos, especially those who are very sensitive to certain types of clothing. School shopping has to be an exact science- but we all know it never is.  Middle school also means much less outdoor energy release, and much more indoor, have to sit, listen, and cope.  Gym (as much as I dread it) will be The Boy's only physical release opportunity- which sounds great- but gym is his least favorite class.  I am not counting on it to be a good way for him to get the much needed movement and exercise he needs to regroup. (Freaking out more now)

Although I try to keep bedtimes consistent throughout summer- it is a losing battle.  Not only will I have to get him adjusted to regular bedtimes again- he will have to get up earlier, eat, take his meds, get dressed and get ready- probably with ZERO TV time.... (I am seriously starting to hyperventilate).

Once they are at school, the sounds, sights, smells are all new stimuli that is very likely to put sensitive sensory systems into hyperdrive. (I need a drink).

What about the teachers that don't know how to work with an autistic kid?  We have had meetings, made sure a "Meet The Boy" letter was circulated, not to mention the numerous calls, and emails over the summer with concerns. But how is that all going to work out the first day, week, month?  (Somebody get me a glass of wine)

Yes, there are some positives, The Boy doesn't care about a new backpack, isn't too concerned with clothes, and will more than likely do well once he learns his schedule and that daily routine is established.  (Feeling a little calmer-maybe)

I wish I could say that the elementary school has well prepared him for the changes that are coming.  Working with him over the summer- I hope to have got him somewhat caught up- since he was never challenged in elementary school. Educational anxiety is the last thing he needs.... (PITA mom gearing up)

So here are are some things I have thought of- this is by no means everything, so  please comment with your tips and hints!  We have to stick together! 

Good Luck to us all!!!

Prepare yourself!!! A calm mom and dad are better able to help a child create a smooth back to school transition. 

Find or create social stories to help your child with any concerns about getting ready for and going to school. (Yes- even for Tweens and Teens!)

Re-set their internal clock! Early to bed, early to rise. (This will probably not earn you any points if you have a late sleeper- but we all know how erratic our ASD kiddos sleep patterns can be!)

Get a list of school supplies and put together a backpack WITH your child! They may have old favorites from the previous year- incorporate those if possible.  

Let your child pick out their outfit (with guidance if necessary), and lay it out the night before. By both of you working together to pick an outfit the night before, anxieties about “what will I wear” are reduced. Additionally, having the outfit picked out the night before speeds up getting out the door the next day.  (Tweens and Teens on the spectrum want to be cool and fit in, let them help with the clothes shopping!)

Put yourself out there! Make it clear to teachers and administration that you are available to answer questions and provide support for your kiddo. Make sure they have your phone number and email address and encourage them to use it!!  Be polite, but be firm, this is your kiddos education and you take it seriously, and you expect no less from the school.

Have confidence in your child’s abilities. They are smart,capable, and ready to learn, if given the right environment and right tools. Help make sure they have these tools and they will be the best they can be! 

WINE. LOTS OF WINE.

HERE ARE SOME TIPS FROM READERS AT Red Vines and Red Wine on Facebook

Jennifer R:  Make appointments with teachers/principal and get them into the school as many times as possible for an easy transition.

Lauren W: Don't wait till the first day to introduce new school shoes!!!! It takes mine about 2 weeks to like new shoes!!! Lol

Jess M: start talking about the coming changes and getting the routine started it will make it sooo much smoother to transition

Going to the pool with Autism

I am that mom at the pool,  the one who rarely takes her eyes off her kid, even though he is 11 and can swim. The one who seems extra nervous and calls her son over frequently, trying not to draw too much attention.  What you don't hear is me reminding him to respect personal space, not to be too rough, not to grab or splash if he's been asked not to do so, or to just chill out.  

I am the mom who worries about what the other kids are saying to him, and his reaction- moving around pool side depending on where he is at,  making me look like the "helicopter mom" that can't leave her kid alone. What you may not understand is that my son's "quirks" and misunderstanding of social cues can make  him a target for ridicule. Even good- natured teasing will confuse him, causing him to get upset and could cause a meltdown.

I am the mom that is on high alert, because my son gravitates towards kids much younger than he is. An older child attempting to play with these younger kids draws the attention, and possible incorrect assumptions about his motives. So I am always having to keep an eye out, reminding him frequently to not be too rough, and isn't there some kids closer to his age he would like to play with?   I understand why he prefers the younger kids sometimes, and will gladly tell you to ease any concerns you might have.

I am the mom keeping an eye on not only my son, but the other kids, whose teenage babysitters are listening to their iPods, texting, or just enjoying the sun, with a cursory glance at their young charges from time to time. What you don't know is what sometimes seems like playing or harmless rough-housing is actually an issue that needs to be addressed, and a good majority of the time, it is not my son instigating it, but not moving away from it either.

I am the mom who feels bad telling her 11 year old son that I would love to play with him in the pool, but doesn't he want to hang out with the other kids? He already deals with so much, I don't want to add to any teasing because he is hanging out with me. The kids are old enough now, that I can't play with all of them like I used to. What you don't know is while my son is  11 years old, he has a developmental delay that makes him more like 9 years old, and playing with me is fun and safe.  I still do play with him, of course and hope he won't be made fun of later.

I am the mom who won't hesitate to chastise an adult, whose child my son knows makes mean remarks to him, and to their mom, who not only laughs, but perpetuates the teasing. I do not tolerate adults who know better acting like this. Your child's behavior and the way they treat my son, and others who have differences is a direct result of your immaturity and lack of compassion. It's people like you that make my job of raising and spreading awareness that much harder.

I am the mom who is beyond thrilled  when other kids are including my son in their games, making him a part of the group and just being 11 year old boys playing "Sharks and Minnows" at the pool.  What you don't know is I am probably holding back tears, and quietly celebrating what you take for granted.

Best.Birthday Ever!!

A few weeks ago, I had made mention on my Facebook page Red Vines & Red Wine that The Boy was upset about not having more friends to invite to his birthday party. He asked me "I'm a nice guy, aren't I?" Shattered my heart into a billion pieces. How do you tell an almost 11 year old with autism, that of course he's a nice guy, and it's the quality of the friends, not the quantity?  Of course, I did tell him these things, and he seemed content with the answers, but I was still upset about it.

In the comments of this post, someone suggested that I do a "Card Party" for him. What a FANTASTIC idea! So, with some nervousness, I opened up our lives to the folks who like my blog,  page, and have followed our lives.

So many awesome cards!

We were not disappointed! The birthday cards started coming in about a week or so after I posted the request. The Boy didn't seem to really understand why he was getting mail from strangers, and I had to patiently explain to him (several times!) that all of these people read my blog, and know about you through that and my page. And that some of them have kids with autism like you, and some just want to wish you a happy birthday.  Once he understood he got quite excited!  He loves to get mail anyway, so the daily trip to the mailbox became an adventure!

He got musical cards, homemade cards, cards with stickers, cards with cash, cards with dinosaurs, cards with superheroes, post cards, cards made from duct tape - so many cool cards! He got a cool swag bag from Canada, filled with all kinds of Canadian fun, including a lot of little notes with Canada fun facts, he got a box of sweet treats from England, and a post card from Germany!

All told, he received 35 cards, gifts and well wishes from all over the U.S. and beyond. We kept track of the states he got things from on a map I printed out for him. It was not only fun, it was a great learning experience as well.

The Boy got cards from:

Idaho

Pittsburgh

South Carolina

North Carolina

California

Texas

Michigan 

Ohio

Iowa

Kentucky

Nevada

Virginia

West Virginia

Montana

Arkansas

Louisiana

Maryland

Indiana

Kansas

Washington

Canada

England 

Germany

WOW!!!!!

The cards overflowed into two rooms!

How awesome is that?? He also got two pen pal requests, and we can't wait to respond!  I was so completely overwhelmed with the kindness and generosity of so many people who, until now have only known my son as "The Boy."  With so much ugly in the world, this truly gave my hope in humanity a much needed boost.  I cannot thank everyone enough for participating and making The Boy's 11th birthday truly something special.    You are all amazing and wonderful, and I am thankful to have such positive people in our lives!

Family Adventures and how Autism ruins them

You know, most of the time I try and be positive, even upbeat about living the autism life. But sometimes even my incessant cheeriness is dulled by how our lives are dictated by crap that autism throws at us.  And those days are the days I say AUTISM SUCKS and I don't care who doesn't like it.

I did not say "The Boy sucks" and I never ever would. But this weekend the fact that autism and the anxiety it creates abruptly cut an  impromptu family adventure very short frustrates me.

The Mister surprised us on Saturday and said- get to the car- we are going on an adventure! This is unusual for him to begin with, so we all did as he said. Everyone piled in the car laughing, excited to get out of the house.

Look how happy we all are!

An hour car ride filled with singing, laughter and playing the alphabet game, everything was fine and dandy. We decided to stop at Cabela's- just for the hell of it. Things continued on, light, fun, and silly with The Boy amazed at all the displays- and then all of a sudden I saw the signs-  the anxious look in The Boy's eyes, the jerky body movements, the heavy breathing- here comes the meltdown.  Time to go, and go get something to eat I tell The Mister.  Teenzilla rolled her eyes and mumbled something under her breath which I chose to ignore.

Blown away at Cabela's

We got back to the car and talked about what else we were going to do. The Boy asked if we were going to go home now. I said- well- we were kind of planning on some more adventuring after getting some lunch. The panic really set in at that point and he cried- "I JUST WANT TO GO HOME!"  Ok, ok- let's get some food.

Over lunch we talked about taking a trip to Ikea, or just aimlessly driving somewhere and stopping when we saw something cool. As I watched The Boy barely touch his chicken nuggets, I knew our adventure was done for the day.

Teenzilla was pissed. Pissed at her brother, pissed at me, and refusing to be consoled. That finally made me snap at her, and tell her I have to miss out on things all the time, she just needs to get over it. Of course, I immediately regretted this- as tears welled up in her eyes, and she yelled back "I AM ALWAYS DISAPPOINTED! HE always ruins everything!"  *sigh* Yet another family outing derailed by Autism. Teenzilla taking a back seat again to her brothers sensory needs and anxiety issues. I know it sucks. I hate it too.

As soon as we got home, I told her we were getting pizza and she should ask her BFF to come over to hang out.   She shrugged and went to her room. The Boy visibly relaxed as soon as we pulled in the driveway. The panicked look in his eyes, the tension in his whole body, it all went away. I knew we made the right decision- even if it was at the expense of the rest of the family having fun. I was frustrated and a little irritated too. Well- a lot irritated. I have to keep telling myself  "It's NOT his fault, it's NOT his fault." This wasn't a case of a child being a brat- this was sensory issues and autistic behaviors in overdrive. And despite his (and our) efforts, today just wasn't a day he could overcome them

Siblings get screwed sometimes when dealing with an autistic brother or sister.  Either they feel an overwhelming sense of responsibility, or they feel resentful, jealous and anger. I follow all the advice. I make time just for her. We do lunch and shopping dates, I let her friends all hang out here, we do movie nights- anything to make it all about HER, since so much of our world does revolve around The Boy. From what we watch on TV, what we eat for dinner, and where we get to go-  it can be difficult to balance.  And The Boy is high functioning, I can't imagine how much more tricky it becomes when you have a child that has moderate to severe autism that requires 150% of your time and attention, PLUS any other children that need that attention too. I feel bad even complaining.   But sometimes you just have to let it out, right? Tomorrow is another day.  Just keep swimming.

My loves ♥

Full Moon Madness and Autism- what IS the connection?

Every month I start seeing the signs. Dramatically (and I do mean DRAMATICALLY) increased energy level. Dramatically increased irritability. Easy to anger. Easy to cry. Disjointed thoughts and  speech patterns. Increased OCD behavior. Increased verbal stimming. Sleeping issues. No need to look at my moon phase app, I know it's that damn full moon again- messing The Boy (and me) all up. To top it off- it's the so called "Super Moon" so there's that.  I really wonder if the tug of the Earth is felt on a deeper level for him, causing everything to be out of whack.

Deluxe Moon 

And this is not unique to my son. All over Facebook and Twitter, spectrum parents are saying virtually the same thing. Our  kiddos are "off". And this isn't just from  parents, teachers say the same thing. So what is it? Are we all suffering from some group hallucination?  I mean, the word "lunatic"  comes from the Latin ‘luna’ meaning  moon and can mean someone who goes mad with the changes of the moon. so is it our kids, or is it us? Maybe our kids actually suffer from lycanthropy and this is the explanation for the Autism dial being turned up to about a bajillion.  (Imagine that- an autistic werewolf...)

Howl at the moon!

According to an article in Scientific American there is a  theory that that the full moon’s ­supposed effects on behavior arise from its influence on water. The human body, after all, is about 80 percent water, so perhaps the moon works its mischievous magic by somehow disrupting the alignment of water molecules in the nervous system. But the article also goes on to say that "the gravitational effects of the moon are far too minuscule to generate any meaningful effects on brain activity, let alone behavior."  So what gives?  This seems to be in direct opposition to the many, MANY folks who say their ASD kiddos act "loony"  during a full moon.  I have read so many theories, some plausible, some ridiculous, but even though "Full Moon Madness" has been supposedly debunked- it is apparent that those doing the "de-bunking" weren't raising or caring for someone on the spectrum.  Or heard the mountain of  anecdotal evidence from law enforcement, labor and delivery nurses, or doctors working in  psychiatric facilities.

So pretty- so maddening!

I am so very tired, the moon is even screwing my sleep patterns up- about 6 hours of sleep over the last 2 nights makes for a VERY crabby mom. The Mister thinks I am crazy - and when I  ask if he remembers the major meltdowns that just happened to coincide with the last  full moon, he just gives me this blank look. I am around The Boy more often, so it's no wonder I see these behaviors I guess. I am either  more in tune with his ups and downs, or I myself am also feeling the effects of the full moon.  

Right now, I am thinking it's after noon on a Sunday-  that's not too early for a glass of wine, right? I am also sending Teenzilla and The Mister to the movies. I would love to take The Boy, but between his behaviors and my exhaustion, we really shouldn't be unleashed on an unsuspecting public. I will just curse that damn moon.

Quella luna pazza- that crazy moon.... 

Photo courtesy of  autismliveshere.com

Deluxe Moon App:  https://itunes.apple.com/us/app/deluxe-moon-pro-moon-phases/id482361332?mt=8

Tragedy demands answers- start asking the RIGHT questions

Two more tragedies for the autism community occurred over the last week as well. This is almost too much for my heart to bear. I have included links to Drew and Owen at the end of this blog. Please send healing thoughts to their families as well.


Unspeakable tragedies occur more often than anyone wants to think about.  When terrible things happen, whether on a national or global scale, such as 9/11, Newtown, Boston Marathon Bombing, or on a smaller scale, such as the case of Mikaela Lynch, an autistic child who wandered off and drowned, people want, no, they DEMAND an answer. WHY did this happen? HOW could this have happened? And most of all, WHO  is to blame?

Mikaela Lynch disappeared  from her family’s vacation home in Clearlake, California on Mother's Day of this year. Mikaela had non-verbal autism, and  like so many  children with autism, she was attracted to water.   From the minute I saw the first story released, (you can read it here,) my heart went out to the family. I know what it's like to have a wanderer,  The Boy wandered off  twice when he was young- once even being brought home by the local police, prompting us to put alarms on the windows and special locks on the doors. The Boy was somewhat verbal at this time, he could tell people what his name was, and, at 4 years old had a developmental delay of about 2 years.   It was when this happened that I went out and researched autism and elopement, because it was all new to us. I was shocked to find out that nearly half of all children with autism wander. I was equally shocked  to find out that he number one cause of death of individuals with autism involve wandering incidents leading to drowning.  Both occur frequently and a quick glance at the latest autism news headlines will reinforce these unfortunate statistics. What is also very sad and scary- only about 50% of parents and caregivers are aware that elopement is a common issue with autism. If you don't know, how can you be preventative? Educating PARENTS about the very real issue of wandering and autism is imperative.  

Headlines focused on the fact that she "wandered away, naked", I don't think I saw one major headline that didn't focus on this part of the story.  MISSING AND NAKED screamed at people seeing the story. Most people's first question was "Why was she naked?" This headline also lead to immediate assumptions that there was something wrong with the parents.  It's human nature.  When something terrible happens, especially to a child, we as parents may question our own parenting, or mentally pat ourselves on the back for doing a "better job". One article in The Examiner said "The parents have been under scrutiny for their failure to supervise the child, leading directly to her disappearance, which has caused animosity between some people. The fact of the matter is that no matter what the circumstances, parents should never leave their young children unattended when they are at risk of being harmed."  This made me beyond angry, and even more so, when the article went on to say "This should be a warning to all parents". Typical of an publication like The Examiner, but infuriating nonetheless.

But blaming, shaming, and shoulda-woulda-coulda does nothing to help. We NEED to continue, and do more about EDUCATING the masses about autistic behaviors.    One very common occurrence (ask just about any family raising a child on the spectrum) is stripping off all clothing. Sensory and tactile issues are a very large, and common issue among those with autism. Tags, scratchy fabric, things that are something neurotypical people just deal with, can literally be painful for someone on the spectrum.  So the fact that 9 year old Mikaela had taken off her clothes is not something that was shocking to me. What bothered me was people's reactions on my Facebook page- "Why was she naked? Where were her parents? If they knew she might wander, how come they weren't paying attention?" These comments made my blood boil!!  These are NOT the questions to be asking! This is not the time to start blaming parents! But that is exactly what was happening. Fingers were pointed at Mikaela's mom, who was in the back of their home,  putting screens on vent holes because the wasps were building hives in them, to keep her family from being stung. s A  bee scared Mikaela’s brother and  he ran. That is when Mikaela disappeared.  Her mom's response time was immediate- literally 2 minutes- and police were called within 13 minutes. These are NOT the actions of a neglectful parent.  

Our kids can disappear in the blink of an eye- in the time it takes to go to the bathroom, check something in the oven, or answer a phone call, it is possible for a child on the spectrum to disappear. It literally is that fast.  I keep a VERY close eye on The Boy. My hands are on him at all times in public- even now that he is almost 11. We don't have to use alarms or special locks anymore, but I am still hyper vigilant.  He is high functioning, but still has a diminished capacity for self preservation and danger. And all it takes is one second.  I learned the scary way about autism and wandering, but was very lucky The Boy wasn't hurt. I educated the neighbors with pools about his attraction to water. And, living on an island as we do, and not far from water, he was never outside without me or The Mister.  Even after repeated concerns to his first preschool about his propensity to wander away, and assurances from the teachers that they would be watchful- he still LEFT preschool, without anyone knowing. That was a phone call I will never, ever forget, that and the feeling of abject terror that came along with it. Again- the situation had a happy ending, but so many don't.

The National Autism Association has a campaign called  Big Red Safety Box which includes the following 

1) A Get REDy booklet containing the following educational materials and tools:

A caregiver checklist
A Family Wandering Emergency Plan
A first-responder profile form
A wandering-prevention brochure
A sample IEP Letter

2) Two (2) Door/Window Alarms with batteries

3) One (1) RoadID Personalized, Engraved Shoe ID Tag*

4) Five (5) Laminated Adhesive Stop Sign Visual Prompts for doors and windows

5) Two (2) Safety Alert Window Clings for car or home windows

6) One (1) Red Safety Alert Wristband

This is a wonderful resource, and through the help of donations, many families can be provided this invaluable resource.   There are also GPS tracking bracelets that can be purchased, but are VERY expensive (starting at around $299) and for already cash strapped families this may not be possible. Swim lessons are also a must- unfortunately, your average YMCA swim instructor may not know how to teach an autistic child to swim.  There was a program near us that actually did a "clothes on" lesson so children could feel how different it is- heavy and constricting-nothing like when wearing a bathing suit.

Perhaps the  most important ethical question we can ask ourselves when such event happens is whether there was anything that could have done to prevent it, and what can be done in the future to prevent it. and on some levels, we do ask ourselves these questions  Unfortunately, the immediate thought is there must be someone to fault, something to blame.  This is human nature, a visceral reaction to something we cannot understand.  While there ARE many cases that there is a specific target to lay blame on- this is definitely not one of them. This is a tragedy, this is a family who has lost their child, and a mom who will most likely blame herself forever . Asking why Mikaela's mom took her eyes off her is not the right question.  Making statements like "If that were my child I would have done _______ or ________"  are not helpful either.  Let's remember, this is a mom. A mom who has lost a child. A mom who needs support, not accusations.  It is times like these that the autism community needs to rally around one of its own- and work even harder than ever to EDUCATE everyone.  

Drew Howell
Owen Black

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My baby went to camp today and I am a WRECK!

Ready to go!

Fifth grade camp. An amazing opportunity the kids in our district get to experience and look forward to from 1st grade on. When I sent Teenzilla, I was a little nervous, but she had already spent a week at Girl Scout camp, so she was ready to go, and I was pretty relaxed about sending her.

But The Boy is different. Not only does he have autism, he is MY BABY.  And in almost 11 years I have not been away from home for more than a weekend- and not even a full 48 hours so this is just as much about me as it is about him.  Today, The Boy is embarking on a journey that a lot of kiddos on the spectrum may not get a chance to do. Runners, non verbal, numerous medical issues may prevent a lot of kiddos with autism from being able to enjoy and be safe at a fully inclusive school week long camping trip.  I feel very blessed that The Boy is able to participate.

While I know in my heart he will thrive there I cannot help but have those crazy motherly instincts that drive all moms bonkers when they are away from their babies.

Am I excited for him to experience camp? Absolutely. Do I trust that  the teachers,staff and high school counselors will care for him, watch over him, and not let him near danger, and recognize when sensory overload is imminent ? Undoubtedly. Am I worried about  his very limited eating, sleeping in a bunk bed and group showering? Damn straight I am! Do I think he will come home singing fabulous songs, full of stories about his week away and be tired and smelly? I expect it.  

But I am a mom, and I worry. I worry that he may not like certain activities. I worry that he will get homesick, I worry that he will feel alone.  These are all irrational fears, I know. I have sent a kid away to camp- and she was well taken care of. The Boy will be well taken care of, too. He is bunking with some buddies from football, who found him right away this morning to get on the bus. He was smiling,and excited. There weren't any tearful second thoughts, hanging on to me or dad and refusing to let go, not one, single, concern.  That may change tonight- his first night away from home, a strange place, a different routine, but the teachers and counselors are all aware and assured me they will make the transitions as easy as possible. And even though they discourage calls home- if he really really needs to hear my voice- they will let him call home.  That eases my worry, if only a little bit.

This experience will put him in an environment where he was required to be more independent, work with his neurotypical peers in a setting completely different from school, or the football field.  It will hopefully help him to gain confidence in his own abilities, the fact that he can live without screens and be a bonding experience with other kids that will be a big help when they go to middle school next year. 

I am a nervous wreck. My mind is alternating between the worst and best case scenarios, trying hard to concentrate on the best. His smiling, excited face and declaration of "I am so excited to go to camp!" are definitely keeping my emotions in check- I didn't even cry too much when they left!  And I am reciting "No news is good news" over and over in my head- because that is a solid truth I can be confident in. 

This week away is a huge learning experience, for us both. It is sure to fly by, before I know it, it will be Friday and The Boy will be home. I can't wait!

Happy and excited!