Thursday, January 28, 2016

"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.

Wednesday, January 20, 2016

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

   

Tuesday, December 8, 2015

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. 
 

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.