It isn’t always a walk in the park…

The stress of raising Everett. I don’t normally talk about the long term effects of raising a child with autism. Back in our early diagnosis days, I read articles that compared the brain activity and hormone levels of autism parents and that they are similar to combat soldiers with PTSD. I’ve always heard that but felt like that wasn’t something I completely related to until recently. When Everett was 3-4 years old it was a hard time; trying to navigate diagnosis and just figuring out what needed to be done. It was just me and the internet. That phase in our lives and the last year has been the hardest to date. As he has gotten older his language, skills, and social abilities have continued to improve, which is such a blessing but he doesn’t always navigate those in the most productive ways. He is resourceful as a 12 year old, but also mischievous like a 4 year old. His wanting to have more opinions and be more independent leaves him frustrated. His ability to focus on and demand what he wants will drain even the most patient person. Staying strong during his obsessive spells of demanding is not for the faint of heart. I am told by all of the professionals that this is all normal and to be expected, and then adding his Dad’s death on top of it has made for a very rocky six months.

An example of this is when I walked into retrieve Everett last Tuesday from his ABA therapy. He usually is running out and happy, but I hear him screaming bloody murder when I walk in the door. One of the therapists was out in the waiting room and said Everett was triggered by something and it would be a few minutes. But the agony of hearing him scream out is gut wrenching. This is literally the one place in the universe that I wouldn’t intervene to take care of what was wrong. It took about 15 minutes but he emerged fine and excited to see me with no residual trauma on his face. They explained that he had a great session up until a specific toy that makes noise was brought out by another kid (one that was out earlier in the session and is not new). The noise set him off. They didn’t tell me exactly what happened, and while I have no doubt that I can come close to telling you exactly what happened me knowing the details isn’t important. I know they handled it in a way that held Everett accountable to his choices, but were in no way harming him. I know that there are people who say that pushing people with autism too much is detrimental, and I can understand why they feel that way. But I can tell you right now with complete certainty that if I haven’t taken the path of pushing and stretching him outside of his comfort zone in controlled and safe ways; and taken the advice of the professionals I chose to surround us with, he would NOT have near the abilities that he does. The hardest part of his meltdowns is that I need to act perfectly to help him come back while simultaneously have to watch him suffer tremendously. There is so little that I can do but stay calm and just know that it will pass.

In my head, I’ve never really allowed myself to spend time wondering about how each stage of his growing up and life will look like. It either elicits anxiety or an over-hopeful picture of what might be and neither of those are helpful. Everett is such a kind, loving, charming, and hilarious boy. But he is very demanding, self-serving, and self-protective. It is his defense mechanism and he knows what he needs better than anyone else. He usually does exactly as we tell him to do, but there is always verbal kickback when he doesn’t want to do it. Some of that is his personality and not autism. You have to be so careful with the language you use to communicate with him. If I say “We are not going to the movies”, he hears, “we are going to the movies”. He doesn’t process the not in sentences and so there is a negation when you use those types of phrases.

The new Blast Program he is attending at the Autism Center has already brought his social skills so much farther in just 2 months.  He is spreading his wings and wanting to interact more and more.  He wants to try new things all of the time, learn, and explore the world around him.  Last week we were celebrating Clay’s birthday with his family at a campground nearby.  Everett rides his hover board around the campground.  He had been taking the same route over and over, but I looked up and I couldn’t see him.  I immediately get up to go find him, but he is nowhere to be seen.  I hurriedly recruit everyone to help me, and at that moment he comes over the hill about 100 yards down the road.  He had gone to where we parked and had gotten a bag of chips from his backpack.  He was eating them as he scooted back down the road.  I have this binary thinking that goes from beating myself up for letting him get out of my sight and scared for what could’ve happened and then I go to being proud of his resourcefulness and willingness to stretch his boundaries. 

I am proud of all of his new skills and can’t wait to see what else he will add.  We will continue on and know that any bad phase is just a season and that it will get better.  I am grateful for Wheeler and all of our family.  I also am so grateful for Clay’s love and ability to connect with Everett.  There isn’t a day that goes by that my breath isn’t taken away or someone stops me to comment on how amazing Clay is with Everett.  They love each other so much and I know that on a day in, day out basis, I am not alone. 

I love being Everett’s mom and I would not change him if I had the chance. The experience of parenting him has made me so strong and resilient. I hope above all else that I can help bring more understanding about autism and relatability for those who may be walking through something similar.

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