Autism And Tragedy

       

I am writing this as we are currently dealing with a tragic situation, hard as this is I feel it is important to give my readers an inside look at how my son is dealing with the situation as it plays out. My mother-in-law is currently in the hospital for unknown reasons as to the severity of her illness, she is non-verbal and unable to care for herself she is currently going through extensive tests to get to the bottom of this. As of now, her mental prognosis is bleak but we are hopeful that her medical status will improve. Isaiah my now 23-year-old is really trying to understand what is going on, since the discovery of her illness he has utilized various coping mechanisms. At first, he was asking a lot of questions and wanted descriptive details, although I knew that would trigger him I also knew not telling him would trigger him as well. He then went to stemming regularly humming, walking around the kitchen over and over again, then it turned to fear and anxiety where he was voicing his concern about his grandma's well-being. He started to reminisce about how she has been so loving and caring to him and how he hopes she will be able to hug him again. After a day of this, he then began showing signs of agitation and frustration he was giving short answers and snapping back when asked a question. He didn't want to engage in activities he had been doing prior and was spending more time in his room. As of today, he is asking how she is doing and if anything has changed, he keeps asking if his ABA worker has called because he needs to talk to him. Stemming is still happening however he seems to be a bit calmer.

Every day we are learning something new, whether new coping strategies, better communication skills, how to navigate through life and all its changes, and how we can improve as parents. One thing is certain and that is no matter how long it takes we are forever committed to his success. Below I put together a list of insights on why some of his behaviors occur and how we handle them. We hope this brings comfort and guidance to anyone who is currently or may in the future go through this. 

Why Mom?

Asking questions is something we all do when we are dealing with tragedy it is no different with autism. Isaiah needs to know in detail the changes that are happening around him because change no matter how big or small is very difficult for him to handle. His questions help him to sort out how these changes may or may not affect him, it's like when you see someone with autism line up objects he is doing the same thing but only in his mind. He takes the information and lines up what will affect him least to greatest then tries to figure out how to cope as each situation appears. As difficult as it may be to answer questions all day, it is vital to not get frustrated and ignore those questions because as I learned the hard way it will set off a big explosion that will take even more time to calm and it isn't fair to the other person. Learning communication is key to de-escalating triggers and it will bring resolution much quicker.

Stemming

Any time Isaiah is trying to process information or he is scared, confused, anxious, or angry he goes to stemming. This may look different for everyone but for him, he sways, hums, walks around our kitchen over and over again, and sometimes he will do a couple of these at the same time all while listening to music on his headphones. Stemming is a way of releasing bottled-up emotions that he doesn't know how to express verbally, it is also a coping skill he uses to help calm himself down. He sometimes stems when he is somewhere new or around new people but it isn't as constant. Although it can look a bit different to other people in the world don't ever make them stop, this is where our advocacy kicks in and we need to educate the public. 

Fear and Anxiety

When life brings challenges in a world that is already difficult for those with autism tragedy can bring even more anxiety. The unknown is a big trigger for Isaiah and sometimes he can't get the answers he is asking for because there are none to give. Things happen that we just can't explain and all we can do is bring him back to hope in Jesus. Reminding him that our hope comes from him and when we don't have answers we can have rest knowing he does, and we must have faith in the outcome. Sometimes he gets comfort in that and other times he just gets angry and acts out. This is where we have to redirect him and prompt him to go into his space and relax, breathe, and let the stemming process do its duty. This is where as a parent it can break your heart knowing that your child is struggling and you can't make it go away, stay encouraged friends there is always something new to learn, and people to learn from.

Agitation/Frustration

This part of the post is a sensitive subject just for the fact that this is what we had the hardest time understanding and dealing with. After about two years of ABA we finally got a hang of how not to personalize his outburst and how to redirect them accordingly. It was a long painful road a lot of tears on both our parts along with many failures. A couple things we learned was not to yell back when he is yelling at us through his frustration. How to de-escalate and redirect him when he begins crying and hitting things and not feel challenged. When he starts saying things like "I don't want to be here anymore" or "I hate my life" having long drawn-out conversations on why life is worth living and giving logical reasoning is not a way to reach him. Instead, we have him use his coping skills by man to remove and put his headphones on or go for a walk. Once he is calm then we come back and begin asking questions like "what are you thinking about right now" or "What triggered you". We find it very important to allow him to express what he is feeling and allow him to be part of the de-escalation process. Giving him the ability to tell us exactly what was going on at that moment helps us not to put words in his mouth which can set off a bigger explosion. It also gives him that sense of self and lets him know his voice matters. As parents, it allows us not to go down a rabbit hole of wasted words and frustrated rants just remember we are not perfect and this journey is difficult but once you find what works it can be a harmonious home.

Depression and Anxiety

Let me first start off by saying if your child is severely depressed don't wait it out get some professional help immediately. In saying that my son has a family therapist and a psychologist he gets to talk with. The family therapist did an 8-week session with him where he focused on the things that Isaiah could change around him, some examples are cutting down on social media time, being aware of the content he watches as this can feed anxiety, getting out more into the community to building relationships as loneliness is a very big struggle for my son. He also encouraged him to get involved in the singles group at church which he surprisingly agreed to. His psychologist is really only there to help with the depression by prescribing meds, although we tried medication, we found that it was way more harmful to Isaiah than it was worth, he started hallucinating and he was even more anxious than he had been previously. Do what is best for you and your family, not every case is the same and you know your child best. When Isaiah displays anxiety we always prime him to go for a walk it almost always helps, getting out of his room and taking deep breaths of fresh air help to reboot his brain. Sometimes the anxiety is really bad and by performing breathing exercises and drinking ice-cold water, we have found that the ice water shocks his body out of the funk, I know it sounds painful but I promise he is never hurt during this process. Again if your child stays in that depression too long reach out for help it is way better to be safe than sorry. Let's continue to support and learn from each other educating ourselves is the best tool to a successful outcome, be kind to yourself we all make mistakes it doesn't make you less than anyone it makes you like anyone one of us and that's The Heart of The Matter.