Simple, Yet Never Simple

  

     Years ago a simple, yet never simple, trip to the grocery store was literally the only time we left the house. Nearly every single day we went to our local Safeway and it was typically a very difficult event.  Almost every trip, Phillip would meltdown.  Sometimes this happened on the way, as soon as we walked in, in the produce department, or in the car as we left.  No matter what, it always happened and I always knew it would happen as we left the house. Regardless we made those trips and some days we didn't even buy anything.  I just followed him around the store trying to figure out how to help him and hoping I would figure out how.

 

 

  These trips were essential no matter how painful at times.  Essential for him to learn how to cope and essential for me to learn all the things he was trying to cope with. From those daily trips we discovered parking in the same area was important because he needed to know this was going to happen.  It eased him as so many repeat things did and still do.  We discovered he needed a guide to get through the parking lot calmly. A landmark so to speak and that was the big orange speed bump he still uses 4 years later as a bridge across the parking lot.  Once we entered the store we discovered the order we walked mattered to him.  If we hit the left side of the store first yesterday, well, it needed to be the same today.  Then of course the Safeway employees gave me a huge gift without knowing it and the free cookie at the bakery began.  Four years and even when he didn't have the words to ask, those awesome employees would open cookies for him so he almost has never gone without.  They really have no idea how much that helped us in the long run!

 

 

   Never once leaving that store in total distress did anyone treat us badly and yes, that happens a lot to autism parents. Any parent in a moment of crisis can be judged quickly.  No matter what was happening we have always been met with smiles, kind chit chat, and of course a free cookie.  So many times an autism parent will experience an event that is out of their hands and maybe never go back.  So many times we are tormented with worry that everyone around our child in that moment thinks we are a non effective parent or much worse, they might think poorly of our child.  At least with a fresh diagnosis it can feel that way. It takes time to stop giving a damn what anyone thinks and there is a ton of freedom for all in that.

 

   When we feel like we can go back and keep trying, it's a huge win for our kids. It's an opportunity to overcome whatever took us down the last time.  It's a chance to win this autism ride.  Four years later a trip to the store is now almost always a positive event.  We leave laughing instead of crying 99% of the time but he is an 8 year old and sometimes being told no to a chocolate bar after a free cookie really is the end of the world.

 

 



Punk Rock Heroes

   If had to give one piece of advice to a parent and only one, it would be to have all the right people in your life. I wouldn't preach diets, apps, therapies, or any other method to help your child above having the right people around. What do I mean by the right people?  I mean people who don't give a damn about autism.  People who treat your child and you like nothing is different in your life.  People who know it's different but never make you feel that way and just flat out accept it all without question. People who get that autism makes life different but rarely make an issue of it. Those are the people you need, we all need.

   Today my son decided he finally wanted to go see his favorite local punk rock band, The Fibs, play.  A big deal for him because even though he is a huge fan he struggles with being overwhelmed and has always refused in the past.  He listens to the music, watches Youtube videos, knows all the band members but seeing them play has just not been an option in his mind.  Today he decided he could do it and it ended up being the best day of his life.

   There was no trick or tactic I used to get him there or make it an epic day.  The entire reason it worked and was the greatest day ever for him was all the right people.  At one point he nearly lost it and refused to go back into the building but the lead singer of his favorite band said just a few words to him and he pulled it together to not miss the reason he was there.  When they began to play he was right up front and jumping around.  Then he found himself with the microphone and being lifted on stage to stand with the four guys he admires.  Although slightly terrified he did not lose his cool at all.  After the show he was given a job to help carry band equipment and that simple act of kindness was icing on the cake for him.

   You can do all the therapies possible, try every diet on earth, utilize every autism tactic or advice there is but in the end what really makes the biggest impact is who is in your child's life and how they treat you.  My child is lucky enough to look up to four of the coolest guys in world. They just see a kid who looks up to them and that's all that matters. If someone asked me 3 years ago if I could see my son at a punk rock show on stage with a microphone in his hand I would have laughed hysterically but today that's what happened because of all the best people and only because of that.

   Huge thank you to The Fibs for being the kind of people I want my son to admire and strive to be like. Along with creating some crazy good music so many people love!

Check out The Fibs here!

One Of Hundreds Of Dandelions

   Autism and repetitive behaviors go hand in hand.  Repetition is a major part of our lives and used to almost hold us prisoner but over the years Phillip has been able to cope with changes more and more.  I couldn’t imagine three years ago a repetitive behavior would ever be something I loved and hoped would stay with us for a long time but that is the case now.

   When the dandelions began to bloom a few months ago a new behavior did too.  Each day, when we get home from Easter Seals, he asks if he can knock on the door and I go inside without him.  A few moments later he will ring the doorbell and I wait just a minute so he has time to run.  Once I open the door he is in his hiding spot barely peeking out to watch me.  I of course pretend to be confused because no one is there and each time find a tiny dandelion placed on the center of the door step.  I pick up the dandelion and make sure he sees I am surprised someone left a flower and shut the door.  He runs to the door and I open it to find him with a huge smile on his face because every day he feels he has tricked me once again.  I thank him for the flower and he walks in extremely happy with himself and happy he made me smile. 

   This sounds like just a little boy having fun and YES he is! It’s also mixed together with his repetitive nature because on days the dandelions aren’t blooming we still do this only he will improvise.  I might open the door to an orange soda, a toy, or one day last week it was one of his shoes.  It is something he absolutely has to do before he comes inside 98% of the time. The only thing that stops him is a heavy rain.

   Most of the time I try to help him get past a repeat behavior or eventually he changes things on his own and moves on to a new repeat. When the dandelions go away in the fall he won't be able to do this the way he is able to now.  With that on my mind, today I made sure to take a picture of that dandelion, one of hundreds of them.  I know one day he will just stop doing this and I also know one day he won’t be a little boy anymore and I will miss both of these things very much.

 

                                                                           

Forget Everything You Have Heard Or Read About Autism

   It's autism awareness month and some people wonder what they can do to help the cause.  When my son was first diagnosed three years ago people either vanished from life or wanted to help in any way they felt they could.  That meant articles being sent to me about autism, books about autism, tons of advice (mostly unhelpful) and people gave me a lot of information on resources.  All of these things where great and even if they didn't offer us anything, the show of support was extremely comforting.

   Three years later if someone asked me what can a person do to help someone with autism my answer would be, don't treat them like they have autism.  Forget everything you have read or heard about autism and treat them just like everyone else.  Don't wonder if they are able to read your emotions or if they understand you.  Don't worry about causing a meltdown or doing something wrong that might make things challenging.  Don't assume a child who is not talking isn't listening to every word you say and don't assume typical play won't make an impact or bring laughter and smiles. Don't let the word autism get in the way.

   One of most amazing things I have watched happen with my son over the past three years is the impact people can have when the word autism doesn't get in the way.  People who invite us places and treat him just like a typical boy, knowing if any adjustments need to be made I will handle it, have made a tremendous difference in his life.  People that play with him just like they would any one else even if he pulls away at first.  All of these people become his favorite people and that gives him the freedom to just be a little boy.  No therapy, special adjustments, or tricks to be around him.  Just people treating him like he isn't autistic and I know that sounds odd because he is autistic but he is also so much more.  There is no therapy, diet, special app, or autism related article that can make someone feel important and accepted.

   If you want to help the cause, treat people with autism like they are so much more than autism.  Include them, play, talk to them, know them on level we all like to be known.  People who matter and feel the same way we all do.  People who aren't disengaged or unable to absorb emotions  because they are fully engaged and very much in touch with emotions and it takes knowing someone beyond a diagnosis to really understand that. 

"Put It On Mommy"

    

I took my son for a short hike in the woods last week.  It was chilly out and sprinkling rain but it's one of his favorite things to do and now that we have reached a point in his progress we can leave the house all the time, we do it when we can.  I am a forgetful mom so halfway through the hike I realized he was only wearing a sweatshirt and I had left the coat he wears over it in the car so I took my own coat off and put it on him.

            He was distracted by everything as he always is and when it came time to walk to the car the last thing he wanted to do was leave.  He was refusing to walk in the direction of the car no matter what I said.  After giving him multiple reasons we needed to leave and he flat out refused to comply, I began walking towards the car without him.  I tried the old leaving without you tactic that works about 50% of the time and he decided that old trick wasn't going to change his mind.  He stood in one spot with moms coat on making it very clear he was staying in those woods with or without me and I was growing frustrated trying to think of something that would get him to just take one step in the direction of the car.

            We stood there, 30ft apart, and I sighed because here we go again.  The strong willed 6 year old and the tired out of effective tactics mom were in yet another face off for control.  I made typical mom threats to take away privileges the rest of the day unless he listened to me.  I even offered bribes like a Little Caesars Pizza because that always works when I use it but not that day!  Then I said to him “I really need you to listen because I am cold and want to leave.”  That statement changed everything and suddenly he quickly began walking in my direction.  While he was closing that 30ft gap between us he began to unzip my coat he was wearing and by the time he reached me he had taken it off.  Then he handed the coat to me and said “put it on mommy” and continued walking ahead of me towards the car refusing to take the coat back. He asked if I was okay by the time we reached the car and climbed in without any kind of argument.

            My son is six years old, he’s autistic, and didn’t care about losing or gaining privileges to motivate him.  The only thing that motivated him in that moment was his care for someone he loves.

Dear Other Mom...

   Dear Other Mom,

   I noticed you when you walked in to the waiting room.  You and your beautiful three kids, who look just like you, are put together perfectly and I can see in just a few short minutes how much pride you have in being a mom.  Your kids followed you in line and sat down right next to you without moving around to much, stayed so quiet, and listened to every word you said.  I can see you have worked hard at raising them and I am happy for you in so many ways because I get it.  It's the hardest job on earth to be a mom and success feels awesome.

   I can also see you staring at my son.  He's running around the room because an animated movie is on the TV which usually sends him into full blown meltdown and he's working terribly hard to manage that feeling.  Every time he runs across the room you look at him as though he lacks the ability to control himself and then you glance at me.  As though you are wondering if or when I will force him to sit still.  I see you watch him while he grows louder because the room is growing louder and that's how he reacts to noise levels, he's coping very well.  You glance at me again maybe wondering if I will force him to be quiet but you don't know that his noise level is a sign of stress. 

   A team of amazing people and myself have worked hard just to prepare him to have the ability to be in that room.  I can see you staring at him and I can see you don't notice I am staring at you.  This is typically the case and most of the time I like to think people just find him interesting. He's always using his imagination and could care less about who's watching.   I also know some are truly judging because they don't understand what they see happening.

   I watched him walk over to your child and try to start a conversation and my heart burst because three years ago he didn't have the ability to do that at all.  I love seeing this happen like I can't even explain. Then I watched your child look at you not knowing what to do and you discouraged interaction with him.  Now I am glancing at you wondering if you knew how hard he worked for that moment, would you have encouraged your child to be just a bit more social with him?  I can see how much pride you have in being a mom and it shows through your children.  I have that pride too and it shows through my child as well.  In different ways, on different levels, and with a different life.

Sincerely,
An Autism Mom

   

A Very Different Christmas This Year

   The Christmas events are in full swing and chaos of holidays will soon be over.  For some families Christmas means family a child doesn't appear to acknowledge, food that will be completely refused, public stares from people who don't understand meltdowns from crowded stores, and potentially presents that aren't played with or need to be opened by someone else.  In our house Christmas used to be a reminder of how much of a hold autism had on my son and so many families will experience that feeling this year.

   At 4 years old my son expressed no interest in Christmas.  Santa was nothing that grabbed his attention and even still overwhelms him to look at.  Christmas morning we would get up excited like all typical families but our Christmas was far from typical.  There was no interest in what was in a stocking and I spent a long time going through it all with him just hoping one thing would get his attention.  We would all wait patiently and try to guide him on how to open a present which always ended with either myself or one of his amazing opening gifts for him.  Again, hoping once he could see what was under that wrapping paper, he would grow excited to rip into the next one but it didn't happen.  What would happen is he would focus only on one item and have absolutely no interest in anything else.  Sometimes I would feel as though that was a blessing because he never begged for a toy, expected anything, he was never disappointed in a gift, and I knew to keep gifts minimal.  Not only because he would have no interest in them all but because minimal prevented him from a meltdown over trying to process to much.  Other times I longed to see him be able to express excitement and rip into presents like it was the greatest day of the year.  I would catch myself feeling guilty for wanting something people told me may never be capable of doing.

  I know other moms or dads out there are preparing for a Christmas similar to one I just described and I want those parents to know things change.  My son is 6 now and last week I wrapped some presents after he went to bed and put them under the tree.  At 5:00 am the next day a very excited boy blasted into my bedroom with a remote control dinosaur he just could not contain himself over and had to show me.  I was shocked to see he had managed to silently sneak downstairs and open that present and even more shocked when I went downstairs to see he had not just opened one present but all of them.  I gathered the gifts and explained to him he is not to touch the presents again until Christmas morning and he didn't protest at all when I put the gifts away, I suspect because he knew very well what he had done.  I was upset he now knows many of his presents and overjoyed he just could not contain himself at the same time!

   This is the first year Christmas is approaching with great anticipation each day.  Grandma pitched in by providing an advent calendar to help pass the days.  He is checking the tree every day for the number of presents to grow and he can't wait to see if Santa will bring him the book he wants so badly from Barnes and Noble.  He was a nonverbal little boy who barely acknowledged the holiday 2 years ago and now we are approaching a very different Christmas.  To all the parents out there wondering if it will ever change, believe it can and believe it will because it does.  Don't feel guilty for craving that crazy Christmas morning but feel guilty for letting anyone convince you it might never happen....it can.

   We are often told of the struggles that are unpredictable with autism but we need to remember that triumphs are just as unpredictable and no one can tell you what the next day or year will bring. 

 

Routine and Rituals Required

   Something I find extremely difficult to explain to people is autism in our house isn't just about routine but a daily mix of routine and rituals that most people just flat out do not understand.  This combination is really what limits our social decisions, aside from the sensory challenges, and when or how I get away on my own.  Most people know by now someone with autism needs routine but the rituals are specific to each person and customized to each life.  Meaning more often than not, a parent is the one who fully understands both, the difference, and how they go hand in hand through the day to ease anxiety.  It takes time to learn these things and why they matter so much.

   According to Merriam Webster Dictionary routine is described as "a regular way of doing things in a particular order."  For us this means knowing what we are doing with a nice amount of time to prepare each day.  It means he knows if it's a therapy day the night before and it means we talk about what we will do after therapy on the way there.  It means if we are doing something out of the ordinary he needs to be told as far off from when we do it as possible.  It means he needs to know if we are going to someone's house or on a day trip, where we will stop and what kinds of things might happen on the way, such as riding the ferry boat on the way to a friends house.  It even means if I need to stop for gas I need to tell him before we do it.  He needs to know the routine we will follow for the day with enough warning to ease him.  Some events require a significant amount of warning and some not a lot, just enough to know what's next.  He can do it if I don't always tell him but the end result is never good so we just live this way and it helps.  I am actually very grateful to live this way because at one time he was unable to change or break routine no matter what without 2 hours of screaming.  Being able to tell him and still do different things is huge progress from 3 years ago.

   Rituals is described as "always done in a particular situation and in the same way each time."  This is a big part of our lives most people don't understand.  If it is a therapy day that means not only does he know the night before but on the way we drive the same route and we park in one of the same two parking spots along with using the same entrance every time.  It means he might take his shoes and socks off at therapy and nowhere else and it means we take the elevator up in the morning and the stairs down in the afternoon.  It means if we go to grandma's house, he rearranges grandma's things in the same way each time we visit and it means he won't eat there because he rarely ever does even if he's hungry.  It means when we get home I need to go in the house first and shut the door so he can ring the door bell and he will stand outside until I shut the door.  The rituals go on all day and they are specific things that him and I are in tune with that ease him.

   In our house routine doesn't explain it enough and if it was just about routine, autism would probably be much easier to explain and understand.  He has to know the routine and be given room for those rituals or he will get very anxious.  As he gets older and with therapists help he has more of an ability to cope so yes he can break routine and break rituals.  In fact he loves to for a short time because he grows bored easily but I will put emphasis on that short time because routines and rituals relax him and breaking them eventually has the opposite effect.

   We all have rituals in some way that ease us or relax us and we all have some kind of routines in our lives.  The easiest way to understand is if someone took those things away from you because they didn't understand why it's important to you, maybe you might experience a little meltdown of your own.  Take away your ability to explain why those things matter to you and you might experience a very big meltdown.

A Privilege You May Not Be Aware Of

   As a parent you might be experiencing a privilege that you are not even aware is a privilege.  That moment your child falls down and your instincts kick in to rush over, scoop them up, check for injuries, and be the magic parent who makes it all feel better. You comfort your child until the tears stop and encourage them to keep moving.  It's really one of the truly awesome privileges of being a parent, getting to save the day! Just to clarify this only pertains to non serious simple fall downs associated with childhood in general and serious injuries are never an awesome thing.

   As an autism parent I have been denied that privilege repeatedly.  Many times my son has fallen down and skinned his knee and the looks other parents give me are never good.  I know if I try to save the day with comfort or touching him in any way I will make things much worse.  So I stand there not speaking, not touching him, and just waiting to see if he can continue on.  When he is able to calm himself and play again I see the looks of confusion and sometimes a hint of disgust.  After all I just stand there and to other parents I probably appear to be a very cold mother.  Honestly this stand back and wait tactic has been an extremely hard and sometimes painful approach that has made me feel like a cold mother but the typical nurturing response was always more painful for him. I tried for a long time to swoop in and be the magic mommy and each time I sent him into full blown meltdown because as soon as he hits the ground he doesn't just get a skinned knee he gets sent into sensory overload immediately. It's an unexpected event with an unexpected physical feeling and up to this point standing back and waiting was the most nurturing thing I could do, until yesterday.

   Yesterday my son tripped and fell on concrete. He slid on his elbows, there was blood involved and I waited for a moment to see how he was going to react, assuming I would not be able to touch him for the next hour at the very least.  This time the unexpected happened and for the first time ever I was able to kneel in front of him, check his elbows, and feel a little bit like a magic  mommy.  He let me touch him and talk to him through fighting his tears and while I cleaned the blood from his elbow he reached out for a hug.  Instead he put his hands on the side of my face and I did the same to him telling him he would be just fine and it happens.  He agreed, pulled back his tears, I pulled back mine, and we continued on with the day quickly. 

   Most parents don't realize being a magic parent that swoops in for the rescue is in fact a privilege and a privilege some don't get because it will potentially cause more stress.  Yesterday I was able to be a bit of a magic mommy for the first time in years and although I don't want my son to stop himself with his elbows on concrete on a regular basis, this one time I will never forget because I was allowed the privilege of picking him up and making it all better.  Doing the opposite of what my instincts tell me to do may have always been better for him, but extremely challenging for me and being an autism mom has taught me to truly appreciate those privileges that don't come easy.

His Moment Came With Total Understanding

    When a child with autism conquers the challenges only a few understand, it's a feeling that is hard to even put into words but while my son was doing just this last night, a stranger understood.  A stranger in the right place at the right time and she helped in a way that was perfect.  I had to fight the urge to hug her for being so understanding and fight the tears of joy from flying out of my face.

    Carnivals have never been an option for us other than to walk around and try to tolerate the noise for a bit but last night Phillip was excited to walk into the carnival environment. Once we walked around a bit, for the first time he showed an interest in riding some rides. That alone is major progress for him and I wasn't sure he would ever willingly do this but he was in a rush to try. One particular ride of course went in circles which did not concern me but another also bounced up and down. I knew the motion could easily end his excitement and potentially end the entire night in terror but he wanted to try so I encouraged him to do just that.

    He climbed into the car anxious to begin and tried to buckle himself in but he only recently began to manage some buckles on his own and this one was unfamiliar and a little complicated so he was unable to do it alone. The woman operating the right walked over and took some time to explain to him how it works along with giving him a chance to do it on his own. I immediately was grateful already because most people would have buckled it up and continued on. As soon as the ride began to move he was doing great but the up and down had not started yet, so I was waiting anxiously and nervously to see if he could tolerate the motion.  Also hoping the woman operating the ride would stop it right away if everything went all wrong.  Then his car began to rise up and I could see his face turn into panic but I wasn't the only one who could see it, the woman working was watching as well and asked as he passed by if he was okay.  He didn't answer the first spin around and his face appeared to be headed for extreme stress but by the second passing she asked again and told him he would be okay and he repeated "okay!"  Third passing his terror eased back, he smiled and that was a moment I will never forget because it was a moment he was beating autism.

   The woman working was smiling and rooting for him just as I was while keeping an eye on his reaction.  I don't typically tell strangers my son is autistic but If I do, I prefer to do it when he conquering the challenges not when the challenges are conquering him so I walked over and thanked her for being so patient and explained to her it was his first time and that he in autistic.  The woman smiled and said she understood, then she said her son is autistic too.  The ride was over and the woman still all smiles carefully helped Phillip from the ride and told him what an a great job he did and that was the moment he conquered a real fear with the right person in the right place at the right time who appeared to be just as happy for him as I was.

    Most people don't understand the feeling of watching your child be able to do what doesn't come easy.  After all it's just a carnival ride and kids are doing it all the time because that's what kids do but for some kids the feeling is so intense they fight like hell to do it or they just aren't able to.  Our milestones aren't like other families milestones and I don't even think about reaching typical milestones.  It's the moments he is able and the moments he can take control of his environment or his own fear that matter.  He may not be able to get himself dressed or push pedals on a bike but climbing into a carnival ride and tolerating the motion with the rest of the kids is far bigger to me than reaching any milestone on a chart according to age.  It's being able to live and the joy he feels from that is what really matters.  Moments like that are beyond words and a stranger completely understood.  A person who may or may not know just how much of an impact she had on that moment but she will forever be someone who helped it happen with kindness, patience, and a big smile that understood.

Yes, Kids With Autism Are Full Of Imagination!

   It's almost time!  Almost time for the moment my son has been waiting for, for months.  Jurassic World is about to come out and I cannot wait to see how my son reacts.  You see, it's not just a 5 year old who loves dinosaurs, it's a 5 year old who loves Jurassic Park.  He has mastered the art of the velociraptor call and when he needs to feel brave, like his first day of baseball, he will turn into a T-Rex. Not just any T-Rex but the Jurassic Park T-Rex and has also mastered the sound it makes in the movie. While kicking the dirt and roaring like a dinosaur he isn't showing an autism behavior but a little boy tuning into what makes him feel brave. Autism just limits how he communicates that feeling.  He finds action figures that resemble Dr. Grant and not only watches all 3 movies, but is very fond of the extra two bonus material discs.

   He routinely mimics the film score and I can't count how many times he has asked me to drive faster because a T-Rex is chasing the car.  He attends Easter Seals Autism Center, which by the way has changed his life completely, and there is an atrium on the way in that is indeed Jurassic Park in his world.  No, this is not an autism "obsession" it is a little boy who is just flat out loves Jurassic Park that started last summer on a trip to the ocean where he watched it for the first time.  I recently bought him a Jurassic Park shirt and I have bought him dinosaur shirts many times, but this one he will not wear.  However he will carefully spread it out on display to look at because he loves it so much. I could even say overwhelmed by just how much he loves it!  I have high hopes one day he will actually put it on.  Also purchased him a set of hot wheels from the new movie but he will not open the box. It stays in tact and again, he loves it so much he doesn't want it altered in any way.  He carries it around kindly rejecting any offers to open it for him.  He has recently discovered a poster in the Dairy Queen window that advertises a Jurassic World Blizzard and although he won't eat ice cream, we stopped to get the cup and while we waited he practiced his velociraptor call, admiring the cup when he finally got his little hands on it saying "this is so cool!" then trying to mimic the brontosaurus sounds that the people around us could never understand but I know exactly what he is doing and why.

   The autism challenge with this love for Jurassic Park is going to see it.  He has never been to a movie theater and I know he may not be able to handle it at all.  I personally can't tolerate the noise level in a movie theater and he has very sensitive hearing.  Expecting him to sit and stay calm is not really a fair expectation to place on him just yet, mostly because he has been excited for months about Jurassic World and the concept of being still and quiet is still being taught.  A big question for an autism parent is always to try or not to try?  Often we know it won't work but we also have that thought of, but what if it does work?  Most likely we will skip the theater and attempt a drive-in movie where volume is under our control and getting a little excited in the car is perfectly fine but that bedtime routine of 7pm may just take us home early, long before the movie begins.  If nothing gets this little Jurassic Park fan watching it on the big screen we wait until it's released on DVD.  They say in order to understand autism you have to get into their world and that's true, but sometimes you just have to remember what it was like to be a kid and what kind of adventures imagination takes you on. Lately his 5 year old imagination has had him on adventures that I would think look a lot like this.....
                                          

This picture is not my property, I snatched it off the internet because it sums it all up, and it's cool.=)  

Say Yes, Even If It's Easier To Say No.

    Getting an autism diagnosis is a an emotional event to the fullest. You learn a lot about people in general and typically a time line of things happen. Your emerged in paperwork, advice, judgment, decisions, and yes you really do discover who your friends are. Going out in public is hard and people are either kind or extremely rude but most people stare no matter what. They might stare out of curiosity or can relate but say nothing or they might stare because they think your child is out of control. Either way all autism parents experience these things and we all know how it feels. Parents who aren't raising a child with autism experience a cranky child in public too but one way to relate is to imagine that event happening all the time and with no way to stop it with cranky turning to terror over something kids can typically ignore like a door shutting loudly.

    My advice to a new autism parent wouldn't be how to cope with these events but to say, do not let these things stop you. Don't allow what happens to keep you from leaving the house and trying again. Don't let rude looks dictate your right to never give up and don't let the word autism keep you confined to your home afraid to challenge the idea it holds you back.  Don't let lack of awareness and judgmental strangers keep you from helping your child to experiencing life as a child should be allowed to do. Yes, you will have times you will never want to return to a place because the last time was a nightmare but go back on a good day. Yes, you will have times someone will be cruel and ignorant but next time you might encounter kindness and awareness, go back. Yes, you might have to leave shortly after arriving but next time maybe you will get to stay a bit longer. Yes, you might end up in the middle of the zoo with a child screaming for an hour because his or sock is wet but go back again, with extra socks and the belief it might work this time.

   Routine is a powerful element and when living with autism routine is mandatory but that may not always mean limiting routine. Sometimes expanding routine can become routine. Last summer I made the decision isolation and avoiding was bad for us. I had given up on changes but the main reason was fear of those changes and what went wrong so many times. The fear of how autism would clash with changes left us with a life on lock down and it wasn't doing either of us any favors. Easier, yes but good for us...no.

   So new autism parents need to remember you didn't give your child autism and your child didn't ask for it. You have a right to experience life just as anyone else does. It's just not going to come easy and your going to have to fight for it, but it's worth the fight and it's worth creating a routine that involves stretching routine even if it's just a little at a time. The end result will bring moments it works and breaching the walls of your home on occasion to enjoy life. Your child requires a different way of parenting and a different understanding. You will learn the limits and you will learn how and when it's okay to stretch the limits. Most important, it's not your job to appease judgment or create comfort to strangers who know nothing about what they see, it's your job to fight for those moments it works. That doesn't mean you need to say yes to everything but it does mean saying yes when it might just be easier to say no.

My Hopes Are No Different Than Other Parents.

    Here is a scenario I have found myself in many times, I tell someone my son is autistic and very quickly they jump to saying something like this "my friend has a child with autism and he does great. He graduated high school and even has a job" or "some kids with autism grow up to be just fine! They even get jobs."

   This is a fairly common response meant in a reaffirming positive way but honestly, it gets under my skin a little bit. From day one of his diagnosis I have heard "he might" and that has been stated numerous times since. Friends, family, advocates, therapists, even strangers in quick conversation and the list goes on how many people associate the word autism with "he might." "He might even speak one day." was the very first one I heard and he speaks now. The first time I heard my child say the right words at the right time the "he might" left me and the "he wills" began. This might shock people but autism doesn't make me think he won't succeed. It will be a challenge for him to get there but I have never seen my son quit or have any kind of concept he can't do something. People tend to have high hopes my son will grow up to be a functioning member of society but guess what...my hopes for my child are bigger than that, just as the day he was born and a diagnosis never changed that. I don't have expectations but hope is a necessity and I hope for much more than people think.

   I hope he encounters supportive, kind, and patient educators who grasp his potential while he is working to graduate high school. I hope he never thinks because he has autism he can't go to college or strive for far more than what people expect of him. I hope he learns to drive a car and I cry the first time he pulls out of the driveway without me. I hope he makes friends he has strong bonds with to ride in that car with him and they make good choices. I hope he wants to be active in sports and I hope he encounters programs that allow him to. I hope he discovers what he loves to do and finds a way to do it the rest of his life. I hope he falls in love with someone who cherishes him and doesn't break his heart. I hope he sees himself as far more than autism and he encounters people who see that too.

   I am an autism mom and my hopes are no different than other moms and dads. Some people along this journey might think my hopes for him are less or limited to graduating high school and getting a job but like other parents my hopes for him are far more than that. Hopefully he will feel the same way and know he is capable of much more than what people will assume he is limited to. One question no one has ever asked me is "what does he want to be when he grows up?" I would say judging by his interests, a firefighter or an astronaut but I certainly know he doesn't want to be someone with autism who somehow graduated high school and somehow got a job. I also know kids with autism want people to believe in them, like all kids do.

10 Things You Can Do For Autism Awareness Month

   Autism awareness month is around the corner and although the world lit up in blue is nice, there are many ways to support autism that are far more helpful than purchasing a light bulb.

1. Talk to your kids about autism and ask what they know about it. Many schools don't include kids with autism as much as they should, making it difficult for kids to even get to know someone with autism or even creating the idea they shouldn't. Encourage them to learn more because peers have an enormous impact.

2. Find out if your school supports inclusion because it's good for everyone. If they don't, teach your children that no one likes to be the odd man out, ever, and let the school know you support it.

3. Look up autism friendly activities in your community and get involved. You don't have to give money and you will learn much more giving your time. You might also find there aren't enough of them and can help change that.

4. See a parent with a child in a meltdown, be KIND.
I once had to carry my son out of a store, he's half my size, and a while he was screaming and kicking I held a door for a woman who watched me in disgust and never said thank you. Same woman followed us to the parking lot and watched to see how I would handle the situation. Never be that woman! Hold a door for a struggling parent and smile because it matters in that moment more than most people understand.

5. Call your local therapy programs and ask if there is anything you can do.
These programs are always in need of supplies in some way. Bubbles, craft supplies, or even a non noisy toy donation can help. ABA therapy is proven to make an impact and those programs need support.

6. Donate sensory friendly toys to places with waiting rooms.
I can't tell you how many waiting rooms we have sat in that have nothing my son is interested in to occupy him while we wait. I can tell you how many have had sensory friendly items and it's two waiting rooms in five years. People stare because he won't sit still but don't realize his motor skills don't allow him to sit and color with a box of broken crayons.

7. Don't get all weird when someone tells you their child is autistic.
I have watched people get weird when I say autism. They look again at my son and I can see the inner pity stewing like they just discovered he has a disease. They try not to say the wrong thing or they have no idea what to say and it's gets weird. Just relax, autism is not uncommon these days.

8. Ignore the description of autism the media gives us.
Autism is different and each person is an individual. Routine and detail is a given but don't assume someone with autism is withdrawn or can't socially connect. That is the most damaging and dehumanizing description of autism we all hear all the time and be aware it's false.

9. Like an autism awareness page.
You can learn a lot from just reading information on a lot of the pages and there is a ton of them. Some have fans asking questions and others try to help or give advice which is a really good way to see some of the challenges, triumphs, differences, and similarities. I personally have been given great advice on my own awareness page by parents who do and do not have children with autism.

10. Think now and think local.
Autism Speaks is huge and they do a lot but the majority of Autism Speaks budget goes towards research. Research is good but the reason my son will play baseball this year is because a group of people created a program locally for kids to have that chance now and I can bet when we are all out there watching our kids have fun no one will be thinking about research. Don't get me wrong, a blue light on will still let someone know you are aware and that's certainly a good thing but any of the options above make an impact now while science sorts out the rest.

Autism made me "that mom."

    "That mom" is something all moms or dads don't want to be. That mom who's kid is screaming and won't stop. That mom who can't seem to get her child to calm down or sit still. He child is laid out on the floor like a giant X marks the spot and refusing to get up or under the table at the restaurant waiting for someone to drop their guard and move a leg creating an opening to escape. That mom who's child is noisy, fidgety, running, and just generally drawing attention in a way that makes mom look like "that mom." Refusing to hold a hand in the parking lot, kicking and screaming on the way out of a department store, and when "that mom" calls thier name or speaks to them, they just appear to ignore her. "That mom" that appears to have zero control or is failing as a parent and needs to lay down the law. No one wants to be that parent but some of us don't have a choice.

   I am and many others are "that mom" or that dad. Every time we make a public attempt to do something fun I am that parent. I have to say, autism has really taught me time and time again being that mom is not so bad. In fact it's a bit freeing to know no matter how the situation appears there is always so much more going on and just being there to begin with makes me feel complete joy. I know most of the time I have very little control because the world around him is what causes some of those that mom moments. I do refuse some things but it's never for the sake of others and always based on what he might face and have to manage himself through. I have gotten so many that mom looks over the years I am completely desensitized to it and it's a pretty awesome way to be. Don't get me wrong I don't like it when he gets a "that kid" look but as a mother I am extremely comfortable with my efforts and guidance. Yes, when he is spread out on the floor like a giant X marks the spot in Panera, like he was the other day, I am not concerned because he just ate a giant cookie and has managed to process for a full 20 minutes his environment. I am also that mom who lets him eat a giant cookie for lunch because in our case, eating something is far more important than eating only healthy food. I am sure people thought it was the giant cookie that made him restless but it was mostly the environment. A little bit cookie too but I am that mom so who cares!

   We put ourselves as parents under way to much pressure to appease the world around us and are judged all the time by our kids behavior. Everyone has an idea of what we should or should not be doing but if our kids are happy, kind, loved, safe,  and making attempts to maintain we are doing it right no matter how we are doing it. I am grateful autism has taught me to be that mom and be totally comfortable with it because I get to enjoy my son to the fullest and I know I am his hero because I am that mom too. We all are.

It's Not Always Autism Related

   The moment an autism diagnosis is in your hands it is very easy to get sucked into the idea habits or behaviors a child has are autism related. After all in time you notice every single thing your child does is documented and picked apart. Every paper you fill out puts your child under the microscope of a social standard and age expectation, it's overwhelming for any parent. A recent preschool screening made me want to crawl in a hole with hundreds of questions and a result that was 15 pages long picking apart my child in every possible way. 15 pages of people deciding what my child is all about in a very short time spent and it's easy to think they know because they are professionals but the reality is, he is a kid. A kid with funny habits and behaviors that are almost always credited to his diagnosis, especially when we all forget he is really just a kid.

   My son has a habit of sometimes eating a frozen waffle right out of the freezer and because he has some sensory challenges this must be autism related. When I tell people this or they see him eat a frozen waffle frozen everyone assumes this must be an autism effect and up until the two days ago I assumed this too. After school my 16 year old came through the door with a couple of his friends. Typically they grab a snack and head out the door and this day a he brought a friend who has only come around a few times. All of them hungry and when someone mentioned frozen waffles he let his hunger be known. My daughter handed him a frozen waffle and that hungry 16 year old who is not autistic ate the waffle right out of the freezer, the way he likes it. I realized at that moment someone who could tell me why was standing in my kitchen and his answer was simple, "it tastes better that way!"

   I have personally never tried a waffle this way and it's against the way I am programed to eat them because I am socially adjusted to eat them the right way. So socially adjusted I just made a statement that declares the instructions on the box to be the "right way." Shame on me for that! The right way is the way a person likes it and I was elated to see a kid eat a waffle and hear the reason why. Which sounds a little off but when everything your child does is judged a moment like that is a moment your grateful for. It's a moment of clarity and a simple reminder that not everything happening is unexplainably different or a sensory related behavior.

   A child with autism is certainly against the grain but sometimes it's really just because "It tastes better that way!"

How The Grinch Nearly Stole Christmas

  
   There is a fine line between an interest and obsession and the Holiday season I forgot about this line. For the past few weeks my son has been watching The Grinch Who Stole Christmas and last night while he was watching again the reality hit me, the Grinch could very much steal Christmas if I allowed the movie to play one more time or I could be to late.

   You see typically a five year old can watch a movie on repeat and carry on as usual just enjoying a favorite but my son is not typical and yes, I forget this from time to time. Scripting is when a person acts out scenes from movie, games, etc and often exactly as they watched it. Word for word and can come out any time over and over. It's called scripting but I call it stuck because stuck is exactly what happens to my son. Stuck in a movie and unable to focus on other events of the day. Last night after putting my son to bed I put the Grinch away and good chance I will never play it again. As I have done with a couple of other movies in the past year because it literally steals my child. This morning I learned a hard lesson once again because I allowed him to watch it way to many times and that lesson came in the form of a meltdown. A meltdown like I have not seen in a very long time and during that meltdown he would have moments of catching his breath quoting the Grinch. No, he did not know I put the movie away and no he did not go into a meltdown over anything that had to do with it, he just lost ability to function. This has happened before with The Little Rascals and if I even mention that movie he begins to "script" again, even months later.

   He likes the Grinch but the line was crossed and repeat became obsession. A tricky element with autism or in our home because like is good but knowing when to back off is even better. A person might wonder what happens when I take something like this way. He is a little boy and typically if you take something away a little boy likes he would grow upset but he does not. What happens is he slowly returns and is able to get unstuck, and it takes only a few days for the scripting to stop. Very much like I have done him a favor and he breaks free.

   I can only write about how autism effects my son and they say no two are alike but I have learned through this journey many kids do really share similar traits, habits, and even health circumstances. Somewhere out there in the online world might be a parent who's child has crossed the fine line of like to obsession and the only talking they hear lately is Pixar scenario, over and over again. If one person can read this and it helps, it's completely worth sharing. Merry Christmas and may the meltdowns be few (hopefully not at all) and the blessings be plenty!

5 Things My Autistic Child Has Taught Me.

   This morning I woke up to an article about a woman who killed her autistic son by throwing him off a bridge. Heartbreaking story to say the least and instead of blasting this story like the media will I want to point out five things I have learned from having a child with autism that has improved my life and how my autistic son has made me a better person.

1. I am eternally grateful for the patience my son has taught me. He taught me to slow down and pay attention because he needs the slow down to process and stay cool. We all live in a hurry and most of us can process everything around us on sight. We also take advantage of that and miss a lot while rushing through life. I was already a patient person but now my patience is outstanding and necessary. I learned this by stepping back and letting him show me the way at a pace he needed. Life is pretty cool when you slow down and catch the details.

2. The art of saying no and not feeling bad about it. I was never really good at saying no before I had a child who needed me to. By that I mean when others tell you what you should be doing, often the only good answer is no. From the very start I had people familiar with autism telling me what I needed to do to help him. Therapists, advocates, doctors, family, and even friends filling my ears with what they felt to be the right thing to do because of what they knew about autism. It is a hard thing to ignore people and stand your ground because the only person who can guide you is a non verbal three year old, at the time. It is easier to just do what they say but sometimes the word no is more important and easier has nothing to do with it.

3. I am beyond grateful for the lesson of knowing who has your back no matter what. I was fairly comfortable with the people in my life and confident I had there support until an autism diagnosis came into play. It was a bit shocking to me how many people in my life at the time did a complete turnabout when I moved forward with his diagnosis. How some people close to me judged and even blamed me for not doing enough. How many people actually stated "I don't believe it" or "He will grow out of it in time." There is no room for people like this in an autism parents life and especially in my child's life. Clarity and moving on gave us both room for all the right people.

4. I discovered it is totally okay to feel like a crappy parent from time to time who can't fix everything.  In fact it's probably very healthy to feel this, have a cry, and get up and try again. There is no such thing a parent, autism or not, who believes they are an outstanding parent who has it all figured out. That is one thing all parents have in common but most are just a little uncomfortable admitting it because they are always looking for a way to be that. My son forced me to realize sometimes there truly is no answer and that's okay.

5.  Autism is not the worst thing that can happen to you, in fact it's not happening to you. It's affecting you but it's happening to your child. I have been taught by my son to never give up because he is the one who truly lives with autism and I have never seen him give up. Every single day a five year old shows me what it means to be a fighter and he has no idea he is doing it.

   Through all the bad media we see we need to remember and pay attention to the good beyond the struggles. We need to make sure people understand autism parents aren't broken and neither are our children. Affected by autism but not broken and it's important to focus on the right things.

It's okay to not explain.

  
   I was watching this segment of What Would You Do this morning and through the tears it always gives me, there was a moment in the beginning that grabbed me. I have seen it many times before but this moment didn't used to get to me like it does now. It's the moment the dad turns and tells the rude customer the boy has autism.

   An autism parent always finds themselves in a situation people stare or many times people are extremely rude. Thinking a parent isn't doing there job or they just have zero control and well, I can tell you sometimes zero control is exactly what life with autism brings but at the same time a family in a sit down restaurant is taking full advantage of whatever control they have that day and enjoying it. The reason the moment he turned and said "he has autism" grabbed me was because in no way should anyone have to explain this to anyone. I used to tell people who were confused by my son's repetitive behavior or lack of sit still that he was autistic but I don't anymore. Reason being if my son is struggling we owe no one an explanation of any kind and frankly I don't have time for that. No one does.

   Autism is not a rare disorder these days and if someone isn't aware of autism, they aren't from this planet or live more isolated than we have ever come close to. If someone is rude it is not me who needs to explain my child but maybe me who needs to explain a rude person to my child. I have spent way to much time explaining autism to people and way to much time thinking people need to understand and the bottom line is people will either be kind or they won't, depending on what they are made of and according to this segment, most people are kind. Being rude is a character flaw that can't be changed with the word autism and no explanation is going to deter that. I think of my son and consider as he goes through life all the people he will encounter with character flaws and I don't want him to explain himself to them so they will accept him. I want him to find the people who's character is good enough to flow with what he needs, without explanation and that starts with me showing him how.

   I talk about autism with people who I know want to learn or are just kind enough to now they don't understand the big picture, the rest are just aliens from another planet we don't have time for. Isolating themselves from a disorder everyone should be aware of by now. Autism parents, you don't need to tell people why or what is making a situation challenging. Every single time someone has been rude to us, they had no idea autism was factor and I am positive it wouldn't have mattered or made them instantly kind to discover it. Almost every time someone has been kind and understanding they also didn't know autism was a factor. The issue is not autism, it's the character of people and what they are made of. It's a much better way to approach people in public than letting our children hear us explain them to irrelevant strangers. Explain the strangers and how their behavior is not okay, and carry on being a rad parent.

A Not So Complicated Regression

  Repeat and routine used to be an all day long every day way of life. Breaking it was a full blown nightmare and as a parent I had to adjust to a detailed life that almost never changed. I guess you could say it was survival and the only way to give my son any kind of peace. Peace in the details and peace in knowing everything that was going to happen from sun up to sun down. Not an easy way to live but surprisingly not impossible either. I think in some ways we both found peace living so repetitive. People would say to me change is good and they weren't wrong but they didn't understand what change did to my son and as a mother I couldn't put him through it unless it was necessary.

   The interesting twist to this is, over the few months my son has craved change. He grows bored with repeat and routine. Even the thought of repeat, such as heading straight home after therapy irritates him. We pull up to a red light and he will point down a road that either he has not been down or leads away from our house and says "go that way." A total reversal from the way we used to live. Little details still cause some upsets like getting wet or a tiny speck of dirt in his shoe but new experiences are what he is all about and boredom sets in extremely fast. Why the reversal? The number one reason is the amazing ABA therapy he attends five days a week. Easter Seals Autism Center has impacted his life in an enormously drastic way and there is no way he would be this far without them. Number two reason is at some point we stopped staying home and I started a "let's see what happens" state of mind. Thankfully we have some real success with this new approach but we certainly have had some interesting things gone wrong as well that he recovered from without rushing home. Keep in mind the people you surround yourself with when taking this approach make a big difference as well. Tolerant and easy going is important or it won't be easy at all.

   In the past few days something has happened and I would call it a regression, not a drastic one, but his attention span went away, he began slipping much more into his own world and he has been scripting with more slurred speech than usual. Meaning he has been repeating the script of the Little Rascals movie over and over again and his speech had taken such a dive no one could understand him. Even I had a hard time picking up on what he was saying.  He starting watching this movie a couple of weeks ago after not really even watching TV in general and hadn't watched that particular movie in over a year. It's only in the last couple of days he has drifted totally into it and the repeat of the movie has started to take him down. I hadn't realized how bad it had gotten until we went somewhere he loves to go, the skate park. Typically he would attempt to skate and loves watching other kids skate but he spent most of his time reciting the He Man Woman Haters vow and playing in the dirt. He also did something I have not seen him do in over a year. He was given a sticker and over and over he let the sticker go and watched the wind blow it around. Sounds like fun but this was a past behavior not a present one and a huge red flag.

   We came home and I immediately took all of his old movies and put them away starting with The Little Rascals. Every parent likes a little break and putting a child in front of the TV with a cute movie is the easiest way to get one but I would much rather entertain him myself or get out of the house than see him get taken down by repeat. I would much rather see him attempt to skateboard at a park than watch him wander around scripting a movie. I am not sure if he will progress out of this quickly but I do know allowing him to continue watching it is only going to keep him locked in. Life is not what it used to be and maybe he stopped watching movies for a reason I couldn't understand at the time. We don't buy movies anymore and only rent them so if he actually sits down to watch one it is gone quickly with no time to get locked in. This past week he has taught me minimizing how often he watches is very important and new is better. He takes in information so quickly if he is bombarded with the same information over and over that's what he is going to express. Exactly why therapy every day has done so much for him. They push what he needs to learn and they move on when it's needed, that's how progress is made. Makes perfect sense why he became stuck and so grateful he shows me what I am doing wrong quickly because if I couldn't see it by his behavior change I might have kept enjoying that short break and thought it was a complicated autism regression. It's an autism regression but it's not complicated at all. I haven't turned the TV on for him since last night and I can already see a positive effect.