Friday, June 24, 2016

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 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.

Monday, April 18, 2016

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. 

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.

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 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.