Some days Autism is the pits!

I try really hard not to complain so I hope none of this sounds like I am, that is not my intent. The last few weeks have been wonderful in so many ways but really tough in others. Yesterday everything came to a head and as I was laying awake last night I just couldn't help thinking that no matter how many books I read, or classes I take, no matter how much I advocate and educate others, at the end of the day my boys are autistic and because of that life is just harder and I can't protect them from it. As a mother that is a really painful thing to accept. We want to be able to protect them from everything and we can't. Next weekend we have the autism walk. I am so excited about it. It is so wonderful to see all these families and friends come together and show these people who spend their lives with autism, how much we love, respect and honor what they do. I wanted to make this post honor what my boys do, and who they are. I hope that comes across, when I describe some of their challenges.

They say that knowing one child with autism is knowing "ONE" child with autism. Not every autistic person has the same challenges and personality traits. I have always known and seen that, but now having two diagnosed kids I see it even more. How could two brothers with autism have completely different problems? Often what one needs sets the other off into a melt down. For the most part they get along wonderfully. It can be a perfect relationship, neither one is pushing the other to emotionally connect, or to stop doing an odd behavior because they aren't even aware of it. They enjoy each other and have fun together. They worry about each other and love each other. But things can be intense for them when one of them needs something to help meet a need they are having at the time and it is at the price of the other, there is absolutely no understanding of someone else's needs for either of them. They are not selfish kids, and how they react to this is not in the intent to be selfish or unkind it is just a natural result of the autism. They do not read social situations and they are not aware of give and taking in relationships. For example yesterday Bennett woke up and I knew it was going to be a rough day for him. Sensory wise he was off the charts, everything was heightened, even putting on his clothes was overwhelming. The other kids talking and getting ready for school was too much for him, it was too loud. His anxiety was through the roof which means that everything became a issue. I felt guilty for even sending him to school, but I am grateful to know that on days like that everyone at Pingree is equipped to cope and help him. Porter is a little different in his difficult days. Bennett has a very short fuse and reacts immediately, but usually can be calmed and comforted again quickly and he can move on and go to the next task. Because of this he usually has multiple lash outs in a day. Porter has a longer fuse, but when he does finally react to all that is pent up he is so overwhelmed and he will completely shut down and it can take days, weeks and sometimes months to get him back on track. It depends on the day, but usually I am more afraid of Porter melting down than Bennett. At least with Bennett I know it will end. Transition honestly for Porter could not be going better, but we know that this is hard and that means consequences. We have prepared for them, the school is prepared for them, we are consistently communicating and watching for them. He has been escalating for awhile, and yesterday I could tell I needed to work my hardest to help him. Unfortunately it was also a tough day for Bennett. Both had their own needs. Bennett screams, cries, hits, bites, punches, and pulls your hair when he has "had It". He can't handle any sound or pretty much anyone. He needs to be held and given a lot of deep pressure to calm down, and he runs and runs and runs. Lights, sound, clothes, and people become very overwhelming and we just have to decrease them. Porter needs to Stem, which for him can be making sounds with his mouth, he spins, and hits his head on the couch, he will watch tv because it is calming, and he can also get pretty emotional. So Porter is spinning and making noises to calm down, Bennett is screaming and hitting because he can't handle Porter's noises, then Porter is screaming because he can't handle Bennett's screaming because it is overwhelming him. Then Bennett is running because he can't handle Porter's screaming and then Porter is crying because he can't handle the running. I send them both to completely different parts of the house and I try to go back and forth to help them while doing my best to keep the girls away so they won't get hurt, and also so that they won't make it worse. I then feel bad for the girls because they have been missing their brothers all day and they just want to play and talk to them and they can't understand that their brothers really can't. And so it goes.

This was yesterday, so anyways we went to my sweet nieces Birthday party. Now most days are like this, and sometimes they can be calm and handle things and others they can't but there is not always a way of knowing. In hindsight I should have just told myself that they just shouldn't try and be in a social environment, but that is hindsight. So we are there and the boys are a MESS! Bennett will sometimes get so upset his nose will bleed, he had 3 bloody noses in 40 min, again that should have been my cue that he just can't do it today, but I pushed on. Porter probably told me 6 times, I need to get away and have a break. I kept trying to tell him to sit in a chair and calm down, but I should have really found him somewhere quite where he was more alone. He kept telling me until he came up to me and said Mom, I really need to get out if here everything is just making me crazy. I told him he could go get in the car and as soon as we were done watching presents being opened I would get the kids and we would go. He was so relieved and said he was going to go potty and then meet me there. The next thing I know Nickelle runs in saying Porter did something naughty and I start telling her about how it is ok I told him to go out to the car, and she says no he threw up. I go into the bathroom and sure enough he had thrown up. When I asked him about it he said he was pulling down his pants to go potty and all the sudden it got really loud and he said his body felt too crazy and the throw up just came out. He does this quite often where he becomes so overwhelmed his body will literally react like this and try to get it out. If you have ever experienced intense anxiety I think you can relate. Your body will get to a point where it needs to do something to get rid of all of that. So I was mortified, I felt terrible that he got sick at their house. I felt awful for their family and I felt awful that I just wasn't paying enough attention to what both my boys were really needing right then. Luckily Dallin had gotten there a few minutes before and he was able to clean it up while I got all the kids out in the car. It took awhile to calm Porter down after because it is really upsetting to him when this happens but he was able to sleep just fine and he was nice and calm this morning.

So last night after all that I couldn't help but lay awake and just feel bad for my boys. I can't imagine how hard it is too feel like that all the time. To hear every sound magnified, to have everything that touches you magnified, to have people all day long demanding you to look at them in their eyes when your whole body and brain is telling you, you can't because it is too much. All day long my boys work at fighting every instinct they have and repressing it. They work at doing the opposite of what instinct and need is telling them to do. Now don't get me wrong, it is this work that is going to make the most difference in their lives. But it is hard to watch sometimes. I can't imagine having to do that, ALL THE TIME. I also felt sad for the girls. They were the reason I went. I kept thinking I can't go, I can't pull this off. Dallin was at the temple with the young men, and it was just me and I knew they were on overload, but since school has begun, we have not been able to do anything, because everyday is like this. Often Dallin and I have to choose do we meet the boys needs, and keep them away, or do we meet the girls needs and make sure they have these experiences. I choose the girls. Either way I am never making the wrong choice, but someone else is affected by that decision. I figure as a family we are all united and we all have to give and take for the benefit of each other. So often the girls are asked and told that we can't do something to help meet the needs of their brothers. My girls do so much sacrificing and are really so understanding. More than other kids their age. But it is great to be able to show them that we make sure the boys are also doing the same for them.

Ok I am going to admit it before I do it, but this is a little bit of a complaint. As the caregiver it is exhausting having to be someone else's brain, let alone two little people's brains. I have to analyze and see every situation. It is like constantly watching for a time bomb to explode. You have to learn to read every cue beforehand so that you can prevent the explosion. Once the bomb has gone off there is nothing more you can do, except damage control. You learn and train yourself to become very good at watching and reading cue's. My boys can't usually tell me what is affecting them, I have to learn to piece it together. I am becoming and excellent detective. Every action I make I know there can be long term consequences for. I am constantly thinking everything out. When I tell people my brain is on overload, I am being sincere. You also have to learn to think out ways to productively push them, you have to have the best control of the situation as possible and then you have to slowly light the fuse and then push them as hard as you can to make them put their own fuse back out. You do this over and over and over again until finally they succeed, and then you celebrate big time! The rewarding thing of it all is seeing them grow and knowing that they have just done the impossible and made it possible.

It is hard many days though to know that really unless you have to think like me, you don't think like me. Meaning that I feel like I can be hard to relate to, and even harder to relate too are the boys. Autism is a foreign language that very few people know how to speak. We have spent years preparing Porter to get to this point, and now we have him out there, in an environment where literally no one has to think like him. I have spent 7 years training myself and working in every way possible to think like him, to read him, and respond effectively. I have helped him learn to communicate so much of that on his own now, but it is still very hard for him to do this really independently. This hurtle is his most important hurtle yet, and I know he will succeed, but it is the first time for all of us, that we are doing this where no one around him has been trained to think like him. Prayers have been answered once again and it is undeniable how involved as usual the Lord is. He is in the absolute best class, best teacher, best special ed teacher in the district and we have all got along wonderfully. I am doing my best to sit back and let them do their thing in their own way, knowing that their way might even be better than mine. I have done my best to give them as much knowledge and understanding to help them on their end and that has been great as well. We are truly working as a team and it has been great. Since he was diagnosed my #1 fear has been and probably will always be, how will he be treated by his peers. Again this has been best case scenario. The kids are doing great, and they are including him. We went in and talked with them and they are accepting of him and enjoy him. They are learning to figure him out and they are doing great with that. Other kids in his grade are more confused about him, but the teacher has been working with the kids at being "bodyguards" for Porter. She has taught them how to make sure and tell the other kids that they need to be nice, and even explain why Porter might be doing something a little different. We are creating all these little advocates for him. They are doing a great job of that. There were some kids who were trying to kick soccer balls at Porter and the kids in his class have been looking out for him ever since. They aren't letting other kids hurt him. We talked to them and she has been talking to them about helping them tell Porter what they need from him. It has been going really well. He is happy to have friends. I know how much they mean to him because one day he had something happen at school and he made a really bad choice about how he reacted. As a consequence Dallin and I felt like he needed to throw away a game he had gotten for his birthday as a result. I know that is a pretty mean thing to do, but it was the right consequence. From that I learned how much he likes his friends though because he knew that by keeping the game it would lead to more difficult interactions with his friends and that wasn't worth it to him. I never thought he would ever choose people before an object. But even with all these wonderful things happening, it is hard to let go, and have to let the school and Porter struggle for awhile as they figure each other out. It is scary and like all things he is going through the growing pains of it all, but once again I feel like it couldn't be better.

Bennett is also going through a very dramatic change in his life. We are really for the first time having to push him against every instinct and reaction. He is working long hours and we are having to push him as far as we can. He enjoys school and it is a very hard worker. In some ways even more so than Porter, which if you have ever seen Porter you know that is amazing. He is so happy when he succeeds and he is so bright. A wise Doctor once told me we have to make everything so much worse before we can even begin to make even the littlest things better. We are there. Everything for him right now is just going to be worse, but the best part of all is now I have hindsight, I know all this painful pushing pays off BIG TIME! He is going to grown in ways I won't think possible, and in all the right ways for him. I know that prayers will also be answered for him. I can't choose for him what skill he will get and one he won't but I know that by leaving it in the Lord's hands they will get the right skills for them and their lives.

Once again I wrote a novel that no one in their right mind will want to read, but to me it is one thing I can do. When I see them struggle like this and I feel so helpless, and I take them places like at the store and people are giving me these looks like I am the worst parent they have ever seen to have a child reacting like that. I think to myself the best thing I can do is be open, by being open and honest about our daily life and our reality it is education. Education means a more understanding and accepting world for my boys. I also feel it is a way to honor them and what they do daily. Autistic children and children with special needs are the hardest working people I know. My boys are awesome in every way. They are "different, but not less". I hurt for them when things are so hard like right now, but they never cease to amaze me with their determination, to keep going, and keep working. I just had to post my thoughts out today, I needed to acknowledge how hard some days can be, and it helps me to remember how lucky we are and how much we have. My boys are awesome, what more needs to be said.