What a day! Actually, what a few days, that would be more accurate.
Most days we go along in our little world and give little thought to the fact that Jacob is autistic. We have always told him that it is something he has and not who he is. He knew when he was diagnosed and we never hid that from him. Our intention was to allow him to know it, own it, deal with it and move on. That’s just how we roll around here. Feeling sorry for ourselves doesn’t get us anywhere and wastes time so we just don’t do that. We do all we are suppose to with therapy and different things. He goes for OT, PT, speech and sees a psychologist. On occasion he has done some social group therapy which have been great for him. He’s even made lasting friendships with a couple kids in the group and one in particular. He is the “cool” kid to Jacob and I have to say that he’s pretty awesome and I am happy Jacob looks up to him. I love that the boy’s little sister likes Jacob too. She gave him the sweetest card ever for his birthday and said, “I love you” in it three times. Sweet girl!!
Usually, I get the common response from people of how they couldn’t tell or that you would never know. That’s great, right? The therapy is working and he is getting older so he is learning what is appropriate and what isn’t. He doesn’t necessarily feel a certain way, but knows what would be the “right” thing to say or do and does it when in reality he had rather just say, “leave me alone right now.” He is still working on being rude, but in his mind it is simply being honest. We have always told him that he never has to be afraid to be honest. I stand by that, but there are ways to go about being honest that won’t result in hurt feelings for someone else. For example, he is learning to say things like, “excuse me, I need to take a break,” rather than just saying, “stop talking to me, I’m overwhelmed.”
As he has gotten older (he’s 10 now) we have learned triggers and certain situations are just not for him and that it is better to avoid them if possible. It’s not to shelter him, but really, if he doesn’t have to be in it, why make him? It’s sort of the same thing with his dad. His dad has PTSD and we avoid loud restaurants, crowded places that will not be very comfortable for him. We do the same with Jacob. We keep him away from a crazy loud place with tons of people and kids because it stresses him out. When that happens it is hard to reach him and get him to calm back down.
One reason, among many, that we homeschool is because he could never function in a public school. He is in a constant “defense” mode and unless and until you get him out of that, he isn’t learning anything. It is just a huge ball of stress that he can’t even contain all his senses and it is counterproductive. I saw a video once that sort of explained how his sensory works different than ours. If you have ever known someone with any kind of sensory disorder or on the spectrum, please give this video a watch. It will help you understand a little better what it is like for him to try and function.
The outside family doesn’t really get it because they haven’t actually seen an episode for him. When they are here or we are there, it is in his element and we have been able to minimize the distress for him. We’ve just learned to deal with their judgement and to be honest, we don’t really care. What matters to us is our three person unit. They are not here for our daily lives so we don’t really put too much stock into what they tell us anyway.
Traveling is very hard for him in an airport because it’s loud and busy all the time. Jacob has probably flown more than his share in his short life, but the good news is that we have learned how to successfully navigate a long trip. You have to get there extremely early (if you know his dad then you know that is NOT a problem at all) and make sure to find the gate and allow him to process things a little at a time. Once on the plane he loves it and then if you have a layover it can’t be rushed. That is too much stress. We have to make sure we have at least an hour layover so he can calmly get to the next gate and make the connection without stress. Otherwise, it is hard because if I am stressed or moving too fast for him to process what is happening it just makes it harder on him. We know this by experience and when done very calmly and not rushed, it’s actually pretty pleasant and he has learned a lot. Once the pilot even let him see the cockpit of the plane. Somehow, he always manages to get the flight attendants attention too, especially when we flew out of Cali all the time. They love hearing him talk with his southern accent.
Maybe you deal with these kinds of things with your own kids and maybe you don’t. I’m just trying to offer some insight to what happens when his brain flips and he is in defense mode. Our latest episode happened at church almost two weeks ago.
Sunday night at church he had a complete meltdown because of leading a song. As those of you have known him from a baby have seen him lead singing in front of a couple hundred people and never bat an eye. He will get up there as confident as any adult, lead singing and step down without a hitch. This was just a practice for him and he was so upset he couldn’t do anything. He was almost paralyzed in a way. He would try to go up there and then just couldn’t seem to move his body to where he needed to go. That resulted in him getting upset with himself and then getting angry. The others were more than trying to comfort him, but he can’t see that when he is in this state. He just spiraled out of control and it started on Saturday when his dad left town. So, he began crying and couldn’t stop and then was kicking one of his feet with the other one stiffening his legs under the pew in front of us, straightening out his back and was very rigid in his movements. I felt so sorry for him. I kept telling him he didn’t have to do it, but he said he wanted to and I tried to encourage that. To be honest, I didn’t really know what to do. It’s been a long time since he has been that way. When I tried to encourage him to do it anyway because I knew he said he wanted to, he just got more and more upset. Everyone was looking at us and it made it worse for him because he was embarrassed and I wasn’t sure what to do either. So, there we were sort of gridlocked into both trying to figure out what to do. I finally just said he should sit down and not do it that night and thought that by making the final decision he would start to settle. Apparently, that was not the right thing to do. I knew he was just angry with himself and he needed to settle down and gain some perspective. I could tell everyone else was uncomfortable too because they just just wanted to help and there is nothing they can do. It was like they saw it and didn’t want to make me feel bad or him feel worse so they didn’t know what to do and it made for an uncomfortable situation all the way around. What do you do? Do you just drag him out of the room kicking and screaming or just try and let him calm down? Do you make him sit down and just let him do whatever he is doing to his own body as long as he isn’t hurting anyone else? The man helping the kids was really fantastic and said okay time is up and everyone was to go back to their seats and it was a good practice. HOwever, this made it worse for Jacob because he didn’t get his turn. I told him that is how it works. We have a certain time to do something and if we don’t do it then we just have to wait until next time or move on. These are hard lessons that life will teach him if I don’t. However, he is in such a state now that I am not sure a lesson would sink in at this point. He began to cry even more. Finally, I got him over to where we were sitting and he was just crying and trying to settle himself.
Someone kindly walked over to encourage him and was very calm and just told him that he always does a great job and if he wanted to just practice at home that was fine. That seemed to help him a little. Then, another mother actually came over and I think she was trying to make me feel better more so than him. To be honest, I was embarrassed more because I wasn’t sure what to do and I felt like we were in the spotlight because of his behavior. I know it is church and hope they wouldn’t be judgmental about what I chose to do, but still, it was awkward to say the least. I know it sounds selfish, but I am just being honest. I didn’t know what to do and I was embarrassed that I couldn’t do the right thing for my son.
She was so kind and said a word of encouragement to me and more than that offered to help specifically. Her son is older than Jacob and struggles all the same. He is even diagnosed with the same type of autism. So, she said her son offered to talk with Jacob when he was a little more calm and just sort of be a friend to him. How wonderful!!!! Now, Jacob can have a mentor of sorts who gets it and can help him more as a friend than as a parent or therapist. Jacob has friends who are very kind to him, but they are kids themselves. We can’t expect them to be so understanding because it is a little scary for them when they see his body react in ways that don’t seem normal. That one mother who took the time to just say, “hey, it’s okay.” made me realize that maybe people are looking and judging my parenting skills on this one incident, but who really cares. Not only did she comfort me, but offered to help in a direct way and not the standard, “if you need anything.” What a blessing that was to me and maybe that is what was meant to come of this all along.
Once practice was over, we went to sit down for service to begin and he just wanted to go home. What do you do? I mean, do you stay and worship or do you leave because he is uncomfortable? My main goal in this life is to teach that little boy how to get to Heaven. If I fail in doing that, it will be a big mistake that I will have to answer for come the day of judgement. So, we stayed through service and he was just crying most the time and laying on my shoulder. The frustrating part is that it just simply looks like a tantrum or a discipline issue and I have been told as much from our own families which is very hurtful. They just refuse to open their minds and see that this is so much more than that.
Anyway, we stayed for church because we have to learn to do the hard things. It would have been easier to have just left because he kept asking to leave, but it’s church. What happens later in life when the conversation is hard and he has to make some decisions that will hinge on how firm his foundation was growing up? If I haven’t instilled how important his time with God is then how can I equip him to be a Christian man that will be the leader in his home. That’s how we grow and get stronger, right?
James 1:2-4 2 Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything.
To him this was a trial and I have to say that maybe it was for both of us. For him to learn to push through a hard situation and for me to try and understand what to do and allow him to be uncomfortable. It’s hard as the parent because we just want to fix everything and make it easy, but that doesn’t help them in the long run. Make no mistake that the outcome of how he handles trials in the future will be directly related to how firm his foundation has been built. Our job as his parents is to begin teaching him now so that he grows in his faith and in his convictions. That is what we are called to do as Christian parents.
Later that night when we got home and Jacob had sort of calmed down he came to me and we talked about what happened. I have always told him that home was his safe place. We can talk about anything and are allowed to feel whatever we feel without judgement. It isn’t right or wrong, but it simply is what it is and it’s absolutely okay. As he tried to talk to me he just cried and cried because he was so upset with himself. I did nothing more than just let him sit with me and listen to him tell me how he was angry with himself because he wanted to do something and it was like his body wouldn’t let him do it. My heart was breaking for him because I could see how much this affected him. He reasoned out why he should have been able to do it, but couldn’t explain why he couldn’t. That is the thing about being in a safe place though, you don’t have to reason why you can’t do something!! You don’t have to reason at all; you just feel how you feel and it doesn’t even matter about the why.
Finally, later that night we went to bed and he got some sleep and was better by morning. Unless he brings it up again I was perfectly content not talking about it anymore. There is no reason to make him relive something unless he wants to talk more about it. It was like nothing had ever happened except he decided that he didn’t want to lead singing anymore. That’s absolutely okay with us. This is suppose to be an activity to help him learn to be a future leader in the church and not a source of punishment or stress. Jacob’s concern was now how would he serve. Well, I have to admit I missed the mark on that one. If, in all this time, I have not made him aware of how many different ways there are to serve in the church without having to lead singing be one of them, I have failed him. I didn’t want another second to go by without having told him that there are always other ways to serve. Giving to the homeless, helping those less fortunate, feeding those who need it, encouraging someone along the way, sharing the Gospel, sweeping the parking lot, cleaning up someone’s yard, etc. Those are all different ways that we serve our Lord. When we serve each other, we are serving Him. It doesn’t have to be up on stage and in front of anyone. How could I have allowed him to not realize that?
I told him it was absolutely okay not to have to lead singing and when I told the leader of the group about Jacob’s decision, I was met with nothing but kindness and understanding. He simply said it was okay and that if he ever changed his mind he would always be welcome to try again.
Jacob has some fantastic teachers at church and I will be sad when this quarter is over because they have really had an impact on him more than they know. They get it and don’t make a big deal if he covers his ears, puts his hood up on his coat or has to leave the room. Not only do they get it, but they allow it and never call attention to it. It’s a simple thing like not calling him out that lets him feel as if he is part of the class and not all eyes are on him. It’s okay to just be doing whatever he is doing. If he were disruptive I would expect nothing less than for them to have him leave class, but he isn’t so they just let him do what he needs to do to cope.
While faith is a HUGE part of our family, I share this story with you not for the perspective on religion, but to help you gain perspective on what a child with autism struggles through. Maybe by doing this it will help you be a little more understanding the next time you see what looks like a tantrum and a mama in tears not knowing what to do. An encouraging word sure goes a long way and helps so much more than a judgmental stare or the rude comment of “I know what I would do.” The truth is that you don’t know what you would do unless you were in those shoes. I can’t imagine a parent not wanting the best for their children and sometimes what is best for them is to help them cope whether it looks like a tantrum or not.
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