Autism As A Whole

The holidays have come and gone and it was the first day back to school for my children. Boy, was I relieved!!! I hate to say that, but really I had had my fill. The last three days there was nothing but screaming. Does this screaming drive anybody else insane? I am not sure if it was an aftermath of over stimulation or just rough days but I do know that although my sister dyed my hair on New Years eve I think I have already acquired gray hair. I know for a fact there was at least one gray.


I decided I needed to get a program on Charlie's I Pad so he could communicate better. That was not an easy job. To start I had many plans for my day today. I wanted to thoroughly mop the kitchen floor, scrub the bathroom down, because I have boys and they are disgusting, and laundry. Of these things I only swept the kitchen and living room and did laundry. The rest of my day was spent on the phone with doctors about Jacob, who by the way, came back with a normal EEG. I am not sure I understand how but I am waiting to hear from the doctor to find out where we go with this now.


Then I did the unspeakable, I sat in front of my computer to find that program I was talking about. I heard that the Grace program was great and decided to give it a try but it just isn't what he needs. Unfortunately, that was a forty dollar program that he won't use. I am not putting down the app in any way. I feel that it would have been a wonderful application for my son about a year ago when he was almost nonverbal. Now, my son speaks so I wanted a program that would speak as he touched the picture, thus giving him the visual and auditory process. I tried Tap to Talk which presents itself as a free app. This program, when I reviewed it on itunes, said it was fully customizable if you went to their site. What they didn't mention was the $99.00 cost to do this. I know I cant expect much for a free app but, I really stretched my pocket buying the ipad and I can't afford to drop a ton of money into apps.


I feel I need to address the Grace App for iPhone, iTouch and iPad- Picture Exchange for Non-Verbal People. It is as it says for non-verbal people. It is a wonderful app. I would recommend it for any parent of a non-verbal child. A couple years ago, it would have worked wonderfully for me. I imagine it would have been better when I was carrying around a bulky folder with pec cards. I know many parents can agree..that was a pain in the ass. My son now however seemed to look at the program and assume that he could just point and get what he wanted without words. I tried redirecting him but it didn't work. He just got angry. It threw him into a melt.


Chucky Cheese seems to parrot a lot. He has the language but he can't seem to put his thoughts into words when he needs something or is injured. I felt a program that verbally said what he wanted might be better. I tried MyTalkMobile and found it to be successful for us. I think each family has to find what works for them.


This program works for me and it was a free app. This app does also have a subscription price but it allows you to customize for free for 30 days. This allows you ample time to see if it is something you would consider investing in. Another positive is that anything you customize before your trial ends stays with you so, even if you cannot subscribe you remain with a functional communication device. Te subscription is to have access to the workspace so you can farther customize your app. However you can customize some of it in the app itself. I am hoping I can figure out a way to afford the subscription to this program. Charlie is constantly telling me, "You know" or "Me show" so this allows that and he does, as I projected, repeat what he wants after he hears it.


It took a little while to prepare the app on his iPad but once I understood how, it was easy peasy. I plan on having him record himself saying his name, address, phone number, age, and birthday. I think he will think that is awesome. Oh, awesome is his new word. Trust me, it is better than his last new word. I do have to warn you about how damn annoying it can be when they decide to constantly tap the same button continuously even after you told them they cannot have what they wanted. For instance my son, after cooking dinner, was insistent that he wanted a hamburger with a smoothie. Hmmm.... I didn't have that and that was using tap to talk and it was not customizable. This was one of the reasons I was so diligent on finding an app that would work for him.


I am hoping that this will help my days be a little quieter although not much, but it is the small things that count the most. At least that is how I see it, that one hot cup of coffee you get once a month, if that, or the smile as they ask for a hug. Another moment I must add is the fact that my son was sleigh riding with his sister today and amazingly it was uneventful. The other day it ended in a 20 min meltdown. Thank god for the small things cause they keep me going!!

This is Orange Bear

This is a full size pic of the two comfies

Charlie went to school this morning with both of his comfies. Their names are Orange Bear and Doggie. I am on an all out hunt for these poor missing friends of my son's. When he came home from school he did not have them with him. I called the school and they said they were in his backpack, but they were not. I also called the bus company but no luck there either. We have no clue where they are and my son is NOT happy!!! He cried after school and then he was crying at bedtime. I did happen to purchase a spare "Doggie", and I gave it to him, but he wants his old Doggie back. Truth is, so do I!!! The questions remain, "Will he last through the night?, Is he gonna get on the bus in the morning?" These questions will undoubtedly be answered tomorrow. They also result in my desire to reunite Charlie with his comfies. These comfies keep me sane and keep him comfortable.


 As important as they are for him, I want you to understand why they mean so much to me as well. I know I have spoken about his comfies before briefly, but I want to be a little more descriptive. Doggie has been in our house the longest and he was bought when Charlie saw him at a shopping trip. I thought I could get away with buying him a one dollar matchbox but nope, he wanted Doggie. Doggie was a ten dollar dog toy, that is actually a fox (don't tell my son that though). He is very soft and comfy and his head and tail have squeekies in them. Charlie doesn't like that part too much.

You would usually find Doggie wrapped around Charlie's neck. It was Doggies favorite spot and Charlie loved how comfy Doggie was. Doggie kept my house a little calmer and helped Charlie go to sleep easier too. Doggie went everywhere with my son, school, therapy, the store, the park, ect. They share many memories. Just last night Charlie was insistent that Doggie, and Orange Bear needed vitamins as well and they even help him eat his eggs in the morning. They are active members of my household and we want them back.

I have told you the story behind Doggie and feel compelled to share Orange Bears story as well. Orange bear belonged to Charlie's Dad, then his brother and now him. He stumbled upon Orange Bear at the very bottom of his brother's toy box and has been stuck to him ever since. Orange Bear has even gone on the horse with him. He loves him. A good part of this is because he is orange and orange is Charlie's favorite color, but also how soft and comfy he is. Charlie has Sensory Processing Disorder and he really likes soft items. If you have something really comfy and want to keep it in your possession, don't let him see or feel it.

These comfies are like people to Charlie. He talks to them, talks through them and loves them. They sleep, eat, and play with him. They are his best friends. Children on the spectrum tend to find it difficult to gain and maintain friendships. Charlie counters this difficulty with his comfies. He will talk to another child through his comfy. I found this interesting. He is problem solving sort of, cause he is attempting to socialize.  What could have happened to his precious friends is a mystery. Many thoughts wonder in my head. One is that maybe this was the teachers way of finalizing the fact that she didn't want the comfies in school, but I don't want to accuse. It is also possible that the aide put them in the wrong backpack. I like the later explanation better but whatever may have happened I do hope that they will come back home.

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.

Hello, and welcome to my blog. My name is Charlene and I am 31 years old. I love photography and started this blog to write about my journey into another world. I am a single mom of four wonderful sarcastic monsters children.

 Krystal is a twelve year old girl who can sing like an angel. Jocelyn is a seven year old girl who is very smart but sassy. Jacob is six and loves Mario. Lastly Charles who is a four year old boy that has changed my entire world. You see, after having three children, I thought  was well prepared when I had my fourth. Hold them, rock them, play with them, teach them, love them, change their diapers. That covers the baby stuff right? Nope!!!!

What if your baby doesn't like to be held, doesn't coo, hates diapers, and the only thing you can do right is feed them? I was so lost. My son Charles has Autism Spectrum Disorder. He never cooed or wanted to be touched. There was no connection, and as he got older he just wasn't meeting his milestones. He didn't walk tll after he turned two and didn't speak until he was three(even then you couldn't understand him). So much for being prepared eh?
Image by Frozen in Time Photographers via Flickr
I felt as if the whole planet had tilted and I dropped off into orbit for a while until I finally landed on a planet we call Autism. This has been a rough road and not just for me but for everyone involved in my life. Family that can't seem to wrap their heads around the idea. It is hard to connect with a child that seems to have no motivation to connect with you. It just takes more effort though. He is an amazing young man but our days are long and don't forget there are three other children involved.

This has been a big adjustment for them too. We used to be able to have big family gathering and go all sorts of places but now these things are limited. They have to tolerate the screaming for hours that I myself have a hard time dealing with. I invite you to join me and my children on our exciting, odd, enlightening trip on the planet Autism. We welcome you into our world.

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...........