Sunday, January 21, 2018

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.

Sunday, January 29, 2017

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!

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 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.

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.