Mind Retrofit

Posts Tagged ‘sensory issues’

I have been reading various blogs from different points of view about people with children who are on the autism spectrum. I have been trying not to but I seem to get sucked in. I go to a blog and read it and think it is very good then I see a comment that is not very nice, attacking would you, and end up going to that persons blog. Why? It is one of my things, I have never been able to stop doing this. I always want to know why a person is responding the way they are responding. If they do not give a detailed reason for their seemingly irrational response, I want to know what makes them tick.

It is so unproductive and causes me to waste huge amounts of time.

I have gotten a lot better but this past week I did fall into that trap and ended up reading a ton of things that had no resolution. Although out of it my memory was triggered. I started to recall things that frankly I have not had time to think about and there really has been no point for me to dwell on it. I was reminded of some of the things Daniel used to do. His self harming behaviors that seem to have vanished into the abyss.

I remembered at the time he was doing those things, I felt as if he would never stop.

It felt like an eternity. I felt helpless and sometimes hopeless. When Daniel was between 1 years old and up to about 3 maybe 3 and half, he would beat his head on the floor, the walls, the doors and any other hard surface he could find. He would run full force into the wall and hurt himself very badly. I was thankful that he had such a hard head but I was also frightened that he would cause serious damage to himself. He would also rub his head on the carpet, all around the house. He would have rug burns on his forehead and I was so worried that people would think we were beating him.

He would have bumps and carpet burns on his head and I felt horrible.

Sometimes he looked just awful. We would stay home from places or I wouldn’t take pictures of him until it healed a bit because I seriously was scared about what people would think. He would also do other things to harm himself and I would have no idea what he did. I would go to the other room to get Joshua, he was a baby at the time, and I would come in and Daniel would be beating his head, grabbing his arm, re-enacting some sort of fall or toy hurting him. I didn’t know he was re-enacting until I started really focusing on why he was doing things.

It was horrible, I never knew exactly what had happened to him because he didn’t speak and he would just be screaming and banging his head.

It is a very lonely place. Lonely in the sense that you feel like you cannot share this information with anyone. Would people believe me? How can a child hurt himself so much and hurt himself just because? Daniel then took to coming after me and then his brother and sister, so I knew something had to change. I did, as I have said before, I changed my thinking and in that I realized that Daniel was doing these things for a reason. Reasons I had not noticed before. Reasons that I was completely unaware of.

A lot of his issue was from his sensory processing dysfunction.

He was also incredibly frustrated that we did not understand him. Once I found out the processing issues, I also realized how I was being affected so much and was not able to be very compassionate to Daniel’s situation. It is very hard to have a child whose sensory needs are the very things that send you into sensory overload. We are all still working on all of this but it has gotten so much better that I seemed to have forgotten about this past chapter in our lives. I think that is a good thing but I also do not want to forget how far we have come.

Daniel has not done any self harm in over a year and half to the best of my knowledge.

We have all gotten a better understanding of how he communicates and how to integrate that into how we communicate. He is understanding our communication as well. Those things have brought about a huge state of peace for the most part in our lives. He still gets upset and I am the focus of his aggression, since I am the main source of his communication for everyone else, I can understand that. He also seems to think that his sensory issues are my fault too but he has gotten better with that and so have I; I am no longer allowing him to be violent with me. I did in the past because I didn’t know what else to do and I am his mother, I just wanted him to be ok and if that meant taking it out on me, so be it. To be honest though, my sensory overload would cause me to just shut down. I would get to the point of not even feeling anything and that was not good for anyone.

David did not think that was the best way so we have changed things to help Daniel with his frustrations.

We have gotten several books on melt downs and read some other resources so we are working on it. Although, it is no where near what it used to be and Daniel is trying to communicate his frustration before he gets upset. We feel that is a major breakthrough that has helped all of us. He used to get really angry with toys also and would throw them across the room. They would fly in the path of anyone or anything. That was not fun, we have had to patch quite a few walls and duck for cover. That has stopped as well.

He used to sit in his room for hours.

He would not come out, it would go on for days where he would stay in his room until he got upset and then the other behavior would happen. He is now with us all day long. Literally all day, we are no longer separate entities in the household. He is part of our every day life. He eats with us, plays with us, talks to us, interacts with us and many other things. I believe because of all of this it has helped his aggression. I believe he felt isolated but couldn’t handle the situations going on with sensory and social things in our family dynamic. I believe that was causing quite a bit of his self harm. I could be wrong but it all started to change when I understood the effects of the sensory issues and made changes in that area and started to look at how we could be a part of his world.

When we started doing things that he liked he started to do things we liked.

He started talking more and interacting. I have found that he has a huge vocabulary that he does not use. I have been trying to give him reasons to use words and let him see the purpose of words and how they do make things happen. He is talking a lot more and even starting to interact with other children besides Ariel and Joshua, more. Looking at him now, just this morning, him telling me that he likes a certain song, doing his school work, listening to me read stories and asking me questions about the characters or telling me who they are and what they are doing , is such a far place from where we were.

It makes it hard to remember the things he was doing before, but I need to remember.

He needs to know because these were no small feats and they are very important. He has accomplished much. He has made the effort to go forward with us. He has worked hard and is still working hard to achieve these things. He is a very strong guy who has shown me that he doesn’t give up so there is no reason for me to. All our kids are like that and it would me wrong not to include Ariel and Joshua in this hard work because they love their brother so much. They jumped on this before I did and they were unyielding,  they wanted their big brother to be a part of their life and have not stopped involving him. They have fully accepted and fully loved him.

I need to write about Ariel and Joshua because they are amazing kids too. I am going to work on that.

From the beginning I had this feeling that something was different with Daniel. I couldn’t place it but I felt it. He would just scream and scream and I did everything I could think of to help him. It wasn’t colic I knew what colic was and this was not it. He would only cry at certain times, he would throw his arms up and make this sound that was something I never heard before when he was cold. Now that I look back I can see he would get upset at many things that had to do with sensory issues.

No chunky or crunchy food!

He began to walk not crawl at 8 months old, he actually began to run not walk. He wouldn’t eat chunky food, he had no desire. He would not drink from a cup still does not fully but we have had major progress in this area. Ariel didn’t seem to have any of these eating  problems. He wouldn’t look at us. I would call his name over and over again. I knew he could hear us. He would look sometimes if there was a sound or if I said his name while he was playing he would once ever so often smile a little. (He did have a hearing test later, no problems) Hardly any eye contact. Since Ariel didn’t show any of these signs I thought maybe it was because he was a boy. I had never been around baby boys before.

Then there was the meltdowns.

I noticed that he would have melt downs in the store and then it would last for a long time at home. As he got older the only thing I could do was let him be in his room. I became pregnant again and it took all my energy. My little Joshua didn’t give me the great pregnancy that the twins did. This little guy made me sick. I blew up like a balloon and got vertigo. David had an office job at the time that was very stressful for us both so that added to the dynamics.

Please stop screaming!

Daniel would just scream sometimes he would scream all day non stop. I would try to give him everything I could, do whatever, find toys, put on shows anything but nothing would work. When David would come home I would be so frazzled that I would just break down. There was nothing I could do. Then there would be days where he was perfectly fine. It made no sense. No rhyme or reason. One day he would love something the next day he would hate it.

Anything that spins.

He only found happiness in anything that would spin. So I found everything I could, all things that spin. That made him happy. He was almost two and still not eating solid foods. We told his doctor and he didn’t think anything was wrong with Daniel because he seemed very social. He was kind of social; he would make eye contact sometimes, smile, and look at people sometimes. To on lookers or other people he just looked like a busy toddler who wouldn’t sit or behave. To us we just thought he was like us, he didn’t like being around a lot of people. We just thought we didn’t like people or something, well that wasn’t really the case we just had to come up with some reason why we never fit in with others. That seemed the easiest route.