Tuesday, October 20, 2015

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.

Saturday, October 3, 2015

He Left Thor Behind Because Grandpa Needed Him.

   The biggest misconception people have about kids with autism is that because of the level of distraction and focus, intense focus or not at all, is that they aren't paying attention. Maybe they don't understand what is happening around them or aren't grasping a concept that everyone else can freely talk about or express in a typical way.  This misconception is a frustrating one because not only does it dehumanize someone with autism but it's just simply not true.

    Grandpa has been fighting cancer for two years. We live close and have watched this fight unfold in both good and bad ways.  The last two weeks has been spent trying to process the end of grandpa's life and each day he grows weaker and closer to heaven.  Many hours have been spent at the hospital and my son has spent a lot of time to and from the hospital.  Most of the time he is distracted and sticking to a routine he developed when it all began.  A couple days ago grandpa had a very bad day and we didn't know if it was his last as every day has been and I noticed my son was struggling to look at him.  Grandpa's change in appearance has been quick and for a child I would imagine it's a scary change to see such a strong man wither away.  Regardless Phillip gave grandpa a hug before we left and remained a little unsure of the situation.

   Later that evening grandpa sent a text that he had discovered a 6 inch Thor action figure tucked into his bed and he would send it home with my daughter later that evening.  My son is pretty protective of his avengers action figures and had been carrying them around all day.  I asked him where Thor had gone to and he responded with "Thor is at the hospital with grandpa." I expected him to want Thor and a sudden realization he had left him behind but that's not what happened.  It was a very matter of fact calm answer and I knew at that moment Thor being left behind was intentional but I had to ask to be sure because sometimes, even I am not sure of how he feels.  So I asked "Why did you leave Thor with Grandpa?" and his answer was, "So grandpa can be strong."

   No one saw him tuck Thor into the bed.  He never made a fuss when we left about a missing avenger and leaving him behind was his way of expressing exactly how he feels.  Grandpa was completely moved to tears by his show of care because even though they are close and grandpa has worked harder than anyone to understand him, Phillip doesn't always express to others so clearly how he feels.  It was much more than a superhero left behind, it was love.  Not being told to say it, told to do it, or coached to act as so many things are.  Not because he doesn't feel or want to say things but because he needs help to get that expression out but the feelings are real and always there.

   People need to throw out the misconception that autism means disengaged, withdrawn or lacks emotion and embrace that it's all there just like everyone else.  It's just a much bigger task for some to show it.  People also need to discover a cure for cancer but that's entirely different topic and one that has changed our lives in a much bigger way than autism ever has.

Dedicated to Grandpa, who transitioned to heaven just 9 days later. One of the most understanding, supportive, and loving grandpa's a boy could have.

Saturday, August 1, 2015

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.

Sunday, July 5, 2015

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.

Saturday, June 20, 2015

A Father's Day Song I Did Not Correct

   It's Father's Day! Great dads are truly awesome and I know this for a fact because I have an absolutely great dad who in my opinion is what a dad should be in every way. In the last few days I have noticed some hostility on social media when it comes to single parents in regard to single moms potentially taking credit on Father's Day. Raising kids without fathers and for autism families this seems to be especially true. It's not an easy ride and many dads run for whatever reason but I also know there are some single dads out there raising kids with and without autism alone because a mother ran as well. Both are not uncommon to hear anymore.

   Yesterday my son sang me a Happy Father's Day song he learned at school and no I didn't tell him I am not his father.  I didn't sit down and explain his father is absent in his life and correct his song he  worked extremely hard to learn and spontaneously sing to me.  The reason beyond how hard he works to just do something like this is easy, I am both.  Just like single fathers who are busting their backs every day to do the work of two.  Moms who have to toughen up a bit and dads who have to soften up a bit are a common dynamic in our society these days.

   We get up in morning and take on the day acting as both when we need to, on little sleep and a lot of motivation.  Some of that motivation is to ensure our child doesn't feel the absence of the absent parent because we are kicking ass at being everything they need.  On Father's Day a single mom could wallow in the absence just as on Mother's Day a single father could but it doesn't create a presence to point out the absence and it certainly doesn't change what is required of us through the day.  When my son, who used to be nonverbal, busts out a Father's Day song that ends with an I love you and a smile there is no way I would take away that moment he has worked tirelessly for by pointing out an absence.  He knows a man is a father and he knows I am his mom.  He sees and understands socially that other kids have dads present because his awareness is impeccable. If he wants to sing the song he learned to mom, he gets a fist bump, a hug, and a great job!

   I say on Father's Day a single mom is allowed to celebrate her presence as both just as on Mother's Day a dad should be allowed to celebrate as both.  When you are doing both jobs to the best of your ability it's okay to recognize that and pat yourself on the back.  So, happy Father's Day to moms who didn't intend on being a father but are trying, a late happy Mother's Day to those dads who didn't intend on being a mother and never stop trying.  Also, a huge politically correct and socially acceptable happy Father's Day to dads who's entire motivation is to be the best dad a child could ever have because no matter how hard someone tries, no one can truly take the place of that.




Wednesday, June 10, 2015

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.=)  

Monday, June 1, 2015

Why I Love It When We Don't Talk About Autism.

  First rule of autism....talk about autism is a quote I once read on Facebook and when your raising awareness this is pretty important or just trying to help the people close to you understand.  Over the last few years, moments have stood out to me as some of the greatest moments for us as a family and it completely demolishes that first rule of autism.  Maybe it's selfish but sometimes the word autism in general makes me tired and I am mother of 3 so I am tired enough.

   There has been times I have been in company that the topic of autism seems to take over, and the interest/curiosity is appreciated and important but as an autism mom, some of my favorite moments have been around people who don't talk about autism at all.  I know, shame on me for that feeling but there is no greater feeling than being around people who know there is much more to my son and our family in general than autism.  They might know if my son retreats for some quiet time why he does it and they might know if I keep a close eye and leave early why I do it but they don't talk about it and it's a bit of a friendship gift they don't even know they are giving me.  Also a gift to my son because for a while there I was afraid he would think his first name was autism it came up so much in conversation around him.  Thanks to ABA and his ability to speak a little we have confirmed he knows his name is Phillip, thank goodness!
   An autism parent really never mentally gets a break from autism, which is something we have very much in common with our kids, we are in it together 24/7.  We think about it from the moment the day begins to the moment it ends and many parents throughout the night, if they are coping with sleep issues. We are constantly considering routine, behaviors, what works, what doesn't, autism friendly places to go, autism not friendly places to not go, how far from home we can go, how long we can or cannot stay, and all the things that happen in between because no matter how much we think about autism through the day we can't control everything.  Things happen no matter what, no matter how hard we work at it, and no matter how many things we try to prevent.

   The moment we are with friends, family, or whoever it may be and we can just talk about life or basically any topic that doesn't involve autism, it's a moment of freedom and personally I cherish it.   The moment our children are just playing, hopefully with other children, and not hearing the word autism is very much a moment of cherished freedom for them too.  I love those moments I can watch my son play and he is just allowed to be a kid like other kids.  I also love those moments I can just be a mom like other moms. Trust me, if something is about to happen or could happen the topic will come up but another good rule to remember about autism is...you don't always have to talk about autism.