Autism As A Whole

How are family gatherings for you with your special needs child? Do you cringe like I do with the thought of going to someone else's house and around a bunch of people? These things are actually kinda scary for me. Then I have to wonder how he will react to things. Will he say thank you and smile when given a present? Will he have a major melt on their kitchen floor? Are these normal concerns? How do you prepare for holiday gatherings?

Yesterday we went to a family dinner, I know scary right? Actually the dinner part went really well and my sister was sure to have a drink that Charlie could have and would like. This shows some awareness and I am so grateful for that. She even made sure that he had a quiet place to go when he felt overwhelmed. She is really good with him. They used their best China (paper plates) which worked wonderful. Not only did it save her on dishes but it made it easier for Charlie cause he didn't have to deal with the noises from the silverware on glass plates. Whew, one more accommodation that, although there were other reasons for it, made it easier for him to cope with the gathering. My sister even turned the music off so that Charlie could eat at the table without his head phones.

Charlie did extremely well last night. I was impressed. He sat at the table and attempted to eat. He ate a lot of sweet potatoes and even attempted to try the Manicotti. Dinner was great very tasty, and it even included a little conversation. Some of this provided by Charlie telling his Auntie that he could eat sweet Potatoes all day long. Mind you he said this quite loud but nobody seemed to mind. Hey, it is better than him screeching or crying right? He then retreated to a room by himself to play in a quiet zone. He was playing with my nephews stuffed animals and talking to himself. It was really cute.

Present time, which happened before dinner was interesting. My kids sat down together to open presents and Charlie was opening but not really excitedly and not paying much attention to what he was opening. It appeared that he wasn't happy with it and that made my sister question her choice for him. Just so you know, he loved it. He just can't express it. He didn't smile, just took his box and walked away. No thank you or anything. I know, that was my big concern. Was he going to appear to be rude or ungrateful?

My sister, a little thrown off my Charlie's reaction, or lack of, decided to take him to a quiet place and open the box. They went into another room and opened it. It was a huge Sponge Bob floor puzzle. The floor puzzles have been an all around wonderful gift for Charlie that he enjoys a lot. His Auntie has been getting him them cause he enjoys them so much. It has kind of become a traditional gift for the two of them. I haven't told her, but I thought about purchasing one for Charlie for Christmas and opted not to in hopes that she would get him another one. She did and when they sat down together to put it together he was so happy. The evening went spectacular at her house.

The over stimulation really kicked in when we left. He had a melt down in the car because we unbuckled him and he couldn't find one of his stuffies. It is ok... we found it. *sigh* When we got home he flipped because he was asleep and we unbuckled him. Oh My he was kicking his feet and screaming like crazy. I wonder what the neighbors thought. Wait, they are accustomed to it now. LOL.. I remember when we first moved here and after a month the lady across the street asked me if everything was OK over here.

I tried really hard to calm him and pick him up but his arms and legs were thrashing inside the car and it was not possible. Meanwhile his sister was sitting on the other side of the seat dodging the feet that were flying towards her face. I, overwhelmed by this, yelled at her to get out. Looking back on the situation, I know that she was probably just as overwhelmed as I was and couldn't process getting out of the car. My boyfriend lifted him out of the car and I looked for the stuffie. I found it and brought it inside.

There in the foyer, was my son screaming at the top of his lungs. I picked him up and rocked him back and forth. He was still so upset so I proceeded to carry this screaming and kicking child up the stairs. I put him in bed and eventually he calmed down and went to sleep. I can't say that was the end because he woke up screaming in a complete night terror mode at 3:30 am. This lasted for an hour and a half. We fell asleep together but I was on the bottom of the bed because he did not want to be touched.

The gathering went very well and I guess even though I felt the aftermath, my son was able to keep it all together for the party. It shows that he is comfortable to let loose while at home and maybe he is learning how to control his behavior in public. All, I know is I was overwhelmed and tired but, I am proud of my son and his strength to get through  such a stimulating event.

It has been a really tough week. It has been filled with meltdowns and screaming. These are the times that I realize how different my planet is since we fell off of Earth. The intense tantruming and lack of self control that he is exhibiting is driving me insane. Everyone in my house feels like they have to walk on egg shells.  I know I usually have positive posts and an enlightening way to look at it but I just feel very overwhelmed today.

Yesterday when Charlie woke up he was upset because he had an accident. I instantly tried to calm him and stripped the bedding off the bed so that it could be washed. He started screaming and yelling that I messed his bed and for me to put it back. I carried him downstairs to give him a shower and he was kicking and screaming. This lasted a while. He ran into the kitchen and was banging his head on the cabinets screaming that I messed the bed. He wanted me to fix it. But, he didn't want the wet spot on his bed either. It was a no win situation.

He quivered when I touched him as he swatted my hand away. I felt helpless. I didn't know how to reach him and he was so upset. As a mom, I wanted to hold him and tell him it was ok but he was not receptive to it. I hate it when he gets like this. After about 15 minutes he came into the bathroom but was still screaming and yelling. He was putting his hands on the toilet banging his head into his hands. I lifted him up and put him in the warm shower. He screamed some more but calmed quickly into the water. He didn't want his hair wet or washed. I didn't attempt to piss him off any more. LOL.. The back of his hair got a little wet and as I put his shirt on he started flapping his hands because he felt the wetness on his hair which then gave a damp feel to the collar of his shirt. Mind you all of this is occurring at 7 am in the morning, and I haven't even finished my cup of coffee, which by the way is cold.

He was really upset that the collar was wet but we moved past that really quickly. His eggs, which I prepared while he was in the shower, were waiting at the table and he started eating them right away. He wanted his show on which was fine. Then it was time for the bus. I was silently hoping this would be a calm event. Well, my thoughts were completely opposite to what would occur next. As I went to put him on the bus he discovered that his comfy, you know the one the teacher doesn't want him to have, was in the house. He started crying and fell to the ground. I got him up and coaxed him on the bus. The driver said that he could get his comfy when he got back home. That did not work!! He threw a fit on the bus and she pulled over and called for me to bring his comfy out. LOL... Guess he does need it.

Well, now that I am done ranting about how horrible I felt. I wanted to say thanks for the get well wishes, I am still pretty sick but a little better than yesterday. Charlie's morning today was much better than yesterday's. Hopefully the whole day will go this smooth.

Today was a pretty rough day. Charlie woke up and didn't want to got to school. I am not sure that I blame him. He said that his teacher will not allow him to have his comfy at school. While I can try to relate and understand what the teacher is trying to accomplish this is putting an emotional stress on my son. He uses his comfy as a calming technique and although I may not understand it completely, I don't see it harming anything. Earlier this year Charlie started coming home with wounds on his legs, neck or arms. After some thought and investigating we realized he was picking his skin during nap time. Now, he does this at home and we were working on it, but it wasn't occurring at school. I approached the teacher and spoke to her gave a few suggestions while I was at it.

Soon after the teacher stopped nap time, which was when my son was picking, and told him he didn't need to bring his pillowcase into school. I visited the school and observed my son in class. He was sitting in circle time and not participating. They sing certain songs every day so he should know them, and when his classmate went to shake his hand he didn't even reach it out to the kid. The other child actually picked my son's limp hand off his lap and shook it as they said hello to him. Charlie didn't even grin. I then listened as the teacher yelled at my son for chewing on his shirt. I approached the teacher about this at a later time and told her I didn't see a problem with it and unless she was going to redirect him to an acceptable "stim" then leave him alone. The teacher was not happy but I feel as if my son needs this stimulation in order to process what is going on around him. Anyone else have these issues with teachers? What do you feel is acceptable for our children's comfort? I mean this is an integrated special needs school. This teacher is in a setting where she must adapt to the children. I thought. Am I wrong?

Tonight, he came home from school and was not in a good mood at all. He wanted pumpkin pie and well, I didn't have any. Watch for yourself.... I stopped recording after a while because he wasn't calming and I needed to intervene differently, but, in the end he was happy eating an ice cream sandwich and orange sherbert. The funniest thing is I had asked him if he would like that instead like 5 times. Grrrrrr...........

I have needed to vent about this for a few days, but every time I sit down at my computer to write I find myself having second thoughts about sharing. I think my fear is that if I come across as a normal mother who loses their patience sometimes, my super hero label will disappear. I guess I just always feel the need to seem in control even when I am not, but  I really feel guilty about my parenting style I used this week and I feel all my readers deserve to know what happened. Maybe, if I am lucky,  someone, somewhere will tell me it is normal. But it isn't for me.

I seem to have an endless amount of patience with my ASD child. I mean, he can be screaming for over an hour and I can handle that. This week was the week from hell. Whatever could go wrong went wrong and to be perfectly honest I was beyond overwhelmed. Charlie seemed to scream for two days straight which put everyone else in the household on edge as well. I guess you can relate it to walking through a mine field knowingly. You know that at any moment your whole environment could just blow up and be in crisis. To make all of this worse, I got my period and my hormones were off the rictor scale. With all the issues revolving around his school, his severe behavioral problems and my PMS... well, I think you can relate, at least I hope.

The day was just craziness filled with tantrums and screaming over what seemed to me as stupid, ridiculous issues. "Jacob moved my cars, Jocelyn looked at me and Krystal touched my pillowcase." I wish he had spoken and told me what was going on but that did not happen. Instead I got erected from my chair or the stove, where ever I may have been at the moment by a shrieking shrill coming from the living room. It sounded as if someone was killing him. I rushed to see what was going on as even though this shrill is normal for him, I can't seem to adjust. I get there to my little man flapping his arms shrieking. Then jolting to hit or push whom ever was causing his disruption. I can't even describe the amount of stress that was wondering in my home for two days.

At one point he had gotten really upset and ran into our roommates room, which he uses as a calm down sensory room sort of. He isn't allowed in there unless the roommate is there and allows him but that rule got broken quickly. I swept in and tried to scoop him up and remove him when he slapped me in my face. It was at that point that my patience and everything else that I seem to be able to maintain flew out the window. I am not proud to reveal what I said to my son and I cringe while typing this. I looked at my son and told him,"Stop acting like a jerk. You are normal at least that is what everyone else thinks. You are just being a defiant brat!!" I proceeded to pick up my screaming, kicking child and carried him out of the room handing him to my boyfriend saying,"Do something with him please. I can't handle him, someone needs to take him."

After an hour of crying and searching through every phone number I had ever acquired with no luck of reaching anyone. I proceeded to call my ex-service coordinator and rant with her about how horrible of a parent I am and maybe I am just unable to deal with normal toddler behavior because now I was convinced that I was just a bad mom. That was the reason he was acting like this and all this time I have been acting like something was wrong with him. Amidst me crying and yes, whining on the phone (talk about self pity) for about 30 minutes, she interrupted me saying,"Take a breathe, cause you aren't crazy!!" I thought,"Are you freaking nuts? I just made my son feel like a stupid child and was totally wrong."

She proceeded,"I remember feeling like this myself. I know what you are going through but I "can say that you are not wrong about him. I saw it, Your son was showing signs of this for a long time, the providers saw it, but by law we cannot diagnose, we can only encourage you to see a specialist." All the time they were in my home working with my son they did acknowledge and have thoughts on what was going on. She reminded me of a specific incident that involved a therapist who had cancelled due to an illness and she came to my house. She said that day she was certain and Autism was very evident. I think that sometimes we get so caught up in trying to advocate and defend our children and it gets frustrating. You begin to doubt and think about whether you are right and how you are parenting. All parents, special needs or not go through the thoughts about how you parent.

This week was an eye opener and made me step back and really slow down. I needed to look at some of the things that have improved with my son because I have been so focused on the fact that he is just maintaining most skills not learning new ones. I wanted to take a moment to reflect on what he has accomplished in the last year. His speech is so much better now. I can understand what my son wants most of the time and his teachers actually have a clue what he is saying. He seems to be able to express when he is sad and has started to gain some pretend play. I think for myself I need to reflect more often and maybe I will be able to take some of the stress off of myself. My son may have Autism but I refuse to let Autism have my son.