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.

JS

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