Why autism is really really really hard.

People always want to know what has been the hardest part about Gray’s ASD diagnosis. This is a tough question to answer. Because so many things are hard. And so many things push us outside of our comfort zone. So many things still catch us off-guard, even 15 months after diagnosis. I understand that many people reading have not had a firsthand glimpse into day-to-day life with ASD. And I genuinely appreciate your desire and willingness to listen. And learn. And understand. Not because I need everyone to know that my life is hard. Not because I want sympathy. Or attention. Or praise. Not because I need anyone to swoop in and rescue me. Not because of any of those reasons. I only have one purpose here, to deliver our truth. And maybe, just maybe, our truth resonates with someone else. It gives someone else living “on the spectrum” or living through any number of other challenging obstacles the comfort of knowing that somewhere out there someone else gets it…life is hard. Harder than it should be. Harder than I thought it would be.

You see, when we began this journey I was filled with energy and fire to fight this battle alongside my son. And then along the way things happen that try to extinguish that flame. At so many moments on so many different days we see things and feel things and experience things that distract us from the fire and energy that we want so badly to hold on to. In some moments we are completely filled with hope. And in other moments we are hopeless. In some moments we have the energy and strength to fight through whatever it takes. And in other moments we cannot fight. In some moments we are SUPER parents. And in other moments we are just parents. And in all of these moments, and all of the moments in between, we do our best to push ahead.

Because you asked (well, maybe not you specifically, but a lot of the “proverbial you’s” out there)…here is my answer.

Autism is hard. Like really really really hard. And there are so many reasons. Here are a few.

  • Autism is incredibly unpredictable. We never know how quickly things will change. Sometimes it takes us 2-3 months to get into a good routine with therapy and family and balance. And sometimes after spending 2-3 months getting there, it only lasts a week or two. And then we are starting all over again.
  • Autism brings out a lot of second guessing. We worry every single day that we are making the wrong choices. That we are responding the wrong way. That we are making things worse instead of better. That we should be doing more. Better. Faster. We second guess ourselves and we second guess each other. We second guess our team. We second guess the decisions we make. The places we go. It is a vicious cycle. It is a cycle that in un-ending.
  • Autism can look pretty ugly sometimes. There is a rawness to the aggression that someone on the spectrum displays. I am not quite sure how to explain this. To be honest, I have seen it so many times that on some level to protect my brain and my heart I have actually gone a bit numb to it. Watching the emotions and the confusion inside of your child boil up, seeing him lose control of his body…is too much. Seeing the look on his face in the moment after he hits you, or his brother or his friend is gut-wrenching. Watching him feel immediately remorseful and knowing that all of the remorse and all of his “I’m sorry’s” will not change the fact that he will do it again. Maybe an hour from now. Maybe a week from now. Maybe a month from now.
  • Autism causes communication challenges. Not understanding Grayson’s needs has always been one of the hardest things for us. Because as a parent you believe that you should have an innate ability to understand and predict your child’s needs.
  • Autism does not exist in a vacuum. The symptoms of autism on their own in our house surrounded by only “our people” is hard. Putting it out there in there real world with real experiences is incredibly challenging.
  • Autism infiltrates a family. I have said this here before…Grayson has Autism, but our whole family is on this journey with him. My wonderfully strong 2 year old son deals with autism every single day. When he is asked to “trade” with his brother. When he is removed from a room so that his brother cannot hit him. When his brother cannot answer his questions because his communication skills are already more advanced.
  • Autism looks different everywhere you look. Since starting this blog I have heard from so many amazing strong parents who are on this journey. Mothers up at 2am ironing the sheets so that their child with sensory issues can go back to sleep. Mothers who have to go into a room before their son and ask everyone to put their phones on silence. Fathers who have had black eyes. Parents reacting and accommodating and adapting at the drop of a dime. Parents with so much love for their child that they just might actually walk through fire.

Autism is hard. That is just the reality of it. And sometimes I get lost in that reality. In that feeling that it may never truly get better. Or easier. Or maybe even just a little less hard. Somewhere along the way I accepted that the lows needed to feel low and terrible and awful, because that way the high feel SO MUCH BETTER. So when things are low I do a few things. (1) I let myself live in that low for just a little bit. Why? Because I need to feel it. All of it. I need to remember what it felt like to miss step and go off course. I need to remember what it felt like to lose my cool. I need to remember what it felt like to get it wrong. Because next time…I will get it right. I will do better. I will stay course. (2) I make a plan. Because I am me. And that is what I do. (3) I move forward.

Yes, autism is hard. And sometimes I let my mind drift to how different our life might be without autism in it. And then I snap the heck out of that really quickly and remind myself to be thankful for the things I can control. I am not ready to put a pretty bow on autism and call it a “gift”. But with every day that passes I can see more and more how people who have been on this journey much longer than me may call it that. And maybe one day I will be there. And maybe not. But I guess only time will tell.


Let’s Talk About Extinction…

Extinction is without a doubt the most annoyingly effective tool for parents of toddlers. Maybe even more so for parents of toddlers with Autism Spectrum Disorder. The entire idea behind extinction is to do nothing. Do not acknowledge the behavior. Do not respond to the behavior. Pretend as if the behavior is not happening at all. And then, if you are lucky, over time the behavior becomes extincted. I call this method annoyingly effective because that is exactly what it is. Have you ever tried to completely ignore something that is driving you completely mad? A flickering light bulb. A buzzy sound coming from an appliance. These thing are all annoying. These things all aggravating. And when these things happen near us we cannot help but get involved. We replace the lightbulb or bang on the appliance. We take action to fix the problem. But mostly we take action so that we can alleviate the annoyance.

In our house extinction has been the answer to a number of Grayson’s behaviors. Before we started working with our Mercy Options team we had no clue about extinction. So we would beat ourselves blue in the face trying to redirect Grayson and politely discuss changing his behaviors. We would try, and fail, to introduce rewards and punishments in hopes of diminishing the behaviors. Nothing worked. When we started our MOAP treatment we were going on month 18 of high pitched screaming. Yes, that’s right I said 18 months. Every day for 18 months Grayson communicated to us in high pitched screams. Happy screams. Sad screams. Scared screams. Anxious scream. Curious screams. We lived in a constant state of neck ache from the way our shoulders thrust upward each times his scream caught us off guard. Looking back at it today feels a bit like looking back to childbirth…it is hard to remember it really being “that bad”. But if I am being completely honest; it was absolutely terrible. It was such a stressful way to live. We knew that everyone around us was sympathetic. But we also knew that the screaming was getting to them. How could it not? We started distancing ourselves from public places because we just could not handle the “can you please control your child” glare that we got. And for the better part of the screaming timeframe we did not have a diagnosis. So we did not understand why it was happening. In our dark moments we felt the same way as those judgmental strangers; how in the world were we completing incapable of taking control of this situation. And then we started with Mercy and we started learning about the way Grayson’s brain works. We realized that most of what we had been trying would just perpetuate the screaming. We took a crash course in extinction and set out on a mission.

Now, anyone who has ever done this can tell you that it is really really really really hard. Walking around your home and carrying out your daily duties while completely ignoring the screaming 3 year old at your heels should be an Olympic sport. And all it takes is one weak moment, one simple slip, and all of our efforts come undone. One simple “Grayson stop screaming” is all it takes to derail our extinction plan. And then we are back at the beginning. Starting the extinction over again. But when we can stay focused and see it through, it makes us feel incredibly strong. Grayson responds to the extinction method the way that many kids on the spectrum respond. He has what is known as an “extinction burst”. In simple terms that means that he has one final grand finale of the behavior just before extinction. It is almost like his final effort to see if he can break us. And believe me, sometimes he does.

Screaming was not the only behavior we extincted. After screaming came hitting. Some people on our team believed that he just replaced the screaming with hitting. Something that is important to understand is that autism therapy is about behavior change. Autism is a lifetime diagnosis and today there is no known cure. So behavior change therapy helps to adapt symptoms into more manageable and socially appropriate behaviors. And to do this you have to understand the antecedent (the thing just before) the behavior. In fact our team spends a lot of time tracking this kind of data. What happens in the moment just before the behavior? It is a look? A gesture? Because understanding the antecedent may help us to understand the reason for the behavior. We know for sure that Grayson’s behaviors are emotional and physical. We know that they are a part of the way that his brain processes things. In those moments he “needs” the behavior.

Hitting was difficult to extinct for a lot of reasons. The most important reason being Rowan. We had to draw the line between extinction and just letting our one year old get wailed on. Another reason was that Grayson was in a classroom environment 2 days a weeks and we had a responsibly to the other children in the classroom. So hitting took a combination of things. We extincted at home when he hit James or I. And in fact we still do that today when the behavior randomly reappears. It is incredibly difficult not to react when you get slammed in the face 5 times in a row. But, the best way to make sure it does not happen again is to extinct it. Do not give it any energy. At school and with Rowan we used redirection and punishments. We always tried first to verbally redirect Grayson towards anything other than hitting. If that did not work he would go into a time out.

Other behaviors we have instincted include door slamming, biting, running away from therapy, and picking things up to slam them down. Each time we encounter a behavior we go into our methodical extinction mode. We have learned to tune the things out that drive us crazy. We have learned to say nothing when we want to scream out loud. We have learned to look left when he is completely losing it to our right. We have learned to pick Rowan up and remove him from the room when the behaviors start. We have learned to extinct. Because we had to. And there are still a lot of days that we are really bad at it. There are days when we are not as strong as we need to be. There are days when the behaviors get the best of us. When we take a step back instead of forward. And we have learned that slipping like this is what makes us human.

Just remember that things are not always what they might seem. Remember to be nice and give people in public the benefit of the doubt. It may look like I am being a “bad mom”. Like I am ignoring my child or letting him get away with bad behaviors. But in my world that strategy is a part of my son’s autism treatment plan. I am not a bad mom. In fact, I am an incredibly headstrong and patient mom. Because any less of a mom could not follow through on extinction. It is hard and unpleasant and sometimes it beats us down and makes us feel like complete failures. But it is also working! And in our house we have learned that sometimes short term pain is worth the long-term gain. One day at a time.



365 Days a Year

It is sometimes difficult for people to understand just how much of a constant our son’s Autism Spectrum Disorder is in our life. ASD affects us every single day. Most days multiple times a day. It is ever-present. Ever-changing. It is a hurdle we must fight again in order to keep moving forward. Managing all of the extra pieces of our life that come with an ASD diagnosis feels like a full-time job. It is a commitment every single day to carve out time to focus on the Grayson’s goals. Grayson’s team. The care plan, the disciplinary measures, the rewards, the therapy space, the therapy tools. We spend time trying to understand his needs. And then mapping out a treatment that meets his needs and the needs of our family of four. We balance therapy time and family time. Often times comprising family time so that Grayson can achieve the mandated 25 hours per week. Somewhere along the way I learned to turn the “mom” role off when it comes to Grayson’s therapy schedule. It will never feel natural to schedule my son in nearly 30 hours of therapy a week. It is something that I second guess every single day. But my head knows that intensive ABA therapy is Grayson’s best shot at living a full and happy life by learning to control and process his symptoms of autism. So when it comes to Grayson’s treatments I take on many roles: scheduler, decision maker, line in the sand drawer and sometimes bad ass momma on a mission…do not mess with my kid! I take on all of those roles so many times a day that I forget sometimes that my true, and most important, job will always be as Grayson’s mom. And some day, hopefully not too far in the future, I will look back at this time with pride. Because we are doing this. One day at a time. One schedule at a time. One small fortune spent on new tools and techniques at a time. We are kicking autisms ass. And believe me, there are a lot of days when it beat us down. There are a lot matches that autism wins. But we know that we will be victorious in the end. Because that is the commitment we have made. We will not stop until Grayson’s life is full and wonderful and amazing.

And so sometimes we get by on very little sleep. Sometimes we sacrifice our personal relationships. Sometimes the piles build up around the house. Sometimes at 9pm when the kids are in bed and we have not yet eaten dinner we are downstairs building a new tool for therapy. Sometimes on the weekend we are making schedules and arranging the house for a new week of therapy. And sometimes we feel guilty about all of the things in our life that we neglect. I cannot tell you how many times I start a conversation with a friend by saying “I’m sorry I’ve been so busy…you know.” And they do understand. That is the amazing thing about great friends. So they give me allowances for letting too much time pass. They continue to invite us places even though they are 99% sure the answer will be no. They understand the time commitment we are making. They understand the financial commitment we are making. They understand that our commitment to Grayson and his treatment will always come first. And they show us grace and understanding when we put it first.

I am incredibly fortunate to work for a company that allows a lot of flexibility with my schedule. I can use my lunch to attend a 9am treatment review at the hospital. And I can work remotely on the days that we have team meetings in our house. I can answer my phone when the care provider I’ve been waiting to hear from all day calls me back.  I can text with my nanny and offer solutions if there is a particularly difficult exchange at home. I am also incredibly fortunate that James and I have the financial support and means to navigate Grayson’s diagnosis. I do not talk dollars and cents here a lot, but holy heck! Autism treatment is freaking expensive! Our care through Mercy options is covered through our insurance. So we are only responsible of paying a portion; which is still an incredibly high number. In the beginning of treatment I calculated that 3 months of treatment without any insurance coverage at all would be $30,000 out of pocket. And that number has increased since adding a Speech Therapist to our team. After the cost of the treatment we have the additional costs of resources for Grayson’s therapy space. Games, tools, electronics, snacks, office supplies, etc. And at Grayson’s age his needs and skill levels are increasing almost daily. So we are continuously adding things to our home. Staying in tuned with Grayson’s need and balancing the needs of treatment with the needs of the family.

Yes, we are ever present. Ever changing. Ever pushing forward. Because going all-in was the only option we gave ourselves. Because we refuse to accept anything other than the absolute best for Grayson. Because I will have a lot of jobs in my life, but none will ever be as important as being a mom. That is a job that I do every day. 365 days per year. And that job came with a few twists and turns that I did not expect. But I am still committed to it every day, probably even more so than I would have been otherwise. I hear people say that autism is a “buzz word” these days. In my life autism is not a buzz word, it is a reality. A harsh, sometimes cruel and expensive reality. Someone one said that the “distance between your dreams and reality is called action.” My dream is for both of my children to live truly wonderful lives full of love and support and adventure. I see my reality, our everyday life. The Austism Diagnosis. The way we navigate ASD and all of the other little hiccups life throws our way. And I respond by taking action. I gather the pieces and put them back together. I rise up. I do better. Every single day. 365 days a year.


Not-So-Great Expectations

I learned a long time ago that autism and expectations do not mix. They cannot mix. Because every single day on the spectrum is different. We learn to accept that the things that go perfectly one day can be a complete disaster the next day. Things can change without notice. Without reason. At least, without a reason that I can see or understand. We have learned that expectations set us up for failure. Sometimes we expect something to be great and we are overcome with disappointment when it goes poorly. Other times things that we expect to be terrible turn out great and we feel disappointed in ourselves for being negative and not having more faith. You see expectations require the ability to predict; and that is just not something parents of ASD can do.

This part is hard for people outside of our everyday reality to understand. I cannot tell you how many times I have been asked “how do you think Grayson will do at (blank)?” Or “what time do you think Grayson will want to (blank)?” Or “where do you think is the best place for Grayson to (blank)?  The answer is simple, I have no clue! I have no idea how he will act. I cannot predict all of the stimulants or environmental factors that may derail him. I cannot guess if he will like something or not. Yes, even when he has done the specific activity or gone to the specific place before. Every single moment of every single day depends on a million big and little factors. We can usually tell within 5 seconds of Grayson waking up what kind of mood he is in. If he comes straight to our bed and climbs in; it is going to be a good day. If he goes into the toy room and hides out; it is going to be a sad day. If he goes into the living room and sits on the couch; it is going to be a wiggly day. If he sleeps in and we have to wake him up; TAKE COVER! When we venture out of the house I do not know if he will be rigid or easy breezy. I do not know if my gentle cues will make the situation better or worse. I cannot control the environment, the people in it, or his reaction to it. I am powerless that way. And feeling powerless, in any way, as a parent is a terrible feeling. So, all I can do is be honest. I do not know. And if you need me to know, then it is probably a better idea that you do not include us. It sounds harsh, but that is our truth.  We live our life one moment at a time. Preparing for anything, expecting nothing.

I can remember the first time I realized that being a parent to a child with ASD meant that I was going to have to let go of my need to control everything. It was just a few months after diagnosis and we were preparing to go to a 4th of July party last year. I excitedly dressed Grayson and Rowan in their adorable red, white and blue outfits. We headed out the door with expectations for a fun afternoon of bouncy rides and sno-cones and carnival games. We arrived at the party early. By this time we already realized that we needed a little bit of “settling in” time. As we walked up to the party Grayson’s eyes grew as he took in the site of all of the exciting things. He took off running and in an instant he was bounding up the stairs of the bouncy house to go down the slide.  I do not remember exactly how long we were at the party; it was less than an thirty minutes. I do not remember exactly all of the details that lead to our exit. But I do remember that I left that party with tears rolling down my face; holding my thrashing three-year old against my chest and bolting for the parking lot. I remember that I after we got home I went into my bedroom for longer than I care to admit to and cried. Sobbed. I remember coming out of the bedroom and walking over to Grayson and squeezing him so tight in my embrace. Sorry that I could not protect him from his world. Sorry that I could not be stronger for him. Sorry that I could not fix the world. Fix the people in it. You see, I expected a fabulous afternoon filled with fun and laughter. And sure, I should have foreseen the obstacles. I should have prepared for the stimulants. Maybe I should have expected that Grayson would not understand the rules of the slide. Maybe I should have expected that he would try to climb up the slide instead of the ladder.  Maybe I should have expected that he would collide with a little girl coming down the slide. But, it never would have dawned on me to expect the mother of the little girl to scowl at me and say “you need to control your child before someone gets hurt.” Maybe she was not wrong. Maybe Grayson’s behaviors and reactions to all the stimulants was causing a problem.   And as we walked through the parking lot my head filled with all of the expectations of the day that would not be realized. And in that moment I knew that I had to protect myself from the disappointment of unrealized expectations. And to do that, I had to let go. Let go of control. Let go of expectations.

This year we went to that same party. This time, with no expectations. After last year I protected myself from the expectation that it would go perfectly. And because of all of the work we have done over the past year I simply could not allow myself to expect it to go poorly. So we went in without expectations. The important difference between this year and last year was that I had found a voice for our life. For Grayson’s ASD. If I faced the same ignorant woman I would be ready to respond. I would ask her for compassion. Sure, because Grayson has autism, but mostly because he is 4 and like any mom I am doing the best I can. I may be learning to live without expectations for Gray’s behaviors and his ASD, but there are a few things that I will always expect.

I expect people to be nice and show compassion.

I expect people to embrace Grayson. Show him patience. Teach him.

I expect people to ask questions to my face rather than talk behind my back.

I expect to make mistakes.

I expect people to forgive me for my ungraceful moments.

I expect our life to be wonderful.

This weekend we defied all odds. We went to our first movie and Grayson watched the entire thing beginning to end. Everyone left smiling. We ever to bed 2 hours late 3 nights in a row and everyone stayed happy and upbeat. We saw fireworks twice, some of us from inside where the sounds did not bother our ears. We went to 2 4th of July parties and Grayson listened and waited in lines and left smiling. We pushed ourselves beyond our comfort zone. We are doing the work every single day. And we deserve the chance to test it out in the real world. And wow, what a difference a year makes!  Sure, it may not always be perfect. I may have to step to the side and let the man running the slide know that Gray has ASD and ask him to say “1 minute buddy” instead of “NO” when Grayson tries to climb the slide too soon. I may have to use timers and verbal cues to keep Grayson on track. I may have to pack and extra big bag of tricks “just in case”. This is our normal. This is our life. Our journey.  And even though I did not expect it, and even though I did not predict it, and even though I cannot control it….somehow, it is still filled with a million wonderful moments.