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!!

I received a book for Christmas and it really hit home for me. It is called The Soul of Autism by, William Stillman. This book incorporates many of my views and opinions regarding Autism. The first chapter however caught me off guard. I guess I was in a pessimistic mood cause when I read, "The World Needs Autism", I thought,"Yeah like I need a hemorrhoid on my ass!!" Hey we all have good and bad days right. I just wasn't in a yeah Autism sort of mood, although after reading this chapter I pulled myself back together.

The author discussed how our society has been working and all the problems it has with being different. Look at the minority groups, why is there such an issue with them? It is because it is not the majority. Most people are not like them. Do we really want our children to conform to this society. Yes, we want them to learn and be productive, but do we want to lose who they are to achieve that? I do not and have stressed before that I don't want to cure my son's Autism. I want to help him cope with it, which means bringing awareness to this issue.

Many people assume that people with Autism on all levels are intellectually inferior. So many parents were told their child would never speak or communicate and were better off institutionalized, but that was not the answer. These children are very intelligent, unfortunately they just cannot express or sometimes verbalize any of it in a way that is socially acknowledged or accepted. For example my son used to scream and point when he wanted something and many other Mom's would tell me I should insist that he ask properly but he really couldn't. The other Mom's felt I was allowing him to act this way.

It goes much deeper than that on all levels. Do you ever look at your child when they are "in their own world" and wonder what they are thinking about? When they suddenly start screaming for what seems like no apparent reason, Do you wonder why? In this book he talked about a spiritual renaissance. He feels that many people with autism have a deeper connection to the spiritual world that is very pure. It is so pure because it comes to them naturally. They don't ask for it or even know what to do with it but it is there.

He talked about a child who would scream and cry out of nowhere until one day he told his mom via a communicator that someone died and he heard it on the radios in the police car. I know that my son can hear things that I cannot but how much does he hear. I wonder if the children that are non verbal have to be that way because it is too much to process all of the spiritual traffic in their minds or do they have to be silent to continue this transmission of information. Maybe it is their purpose to lead us to an evolution. After all if the rates continue to climb like they are there will be more people with Autism on this planet than without.

I have looked at all the negative aspects Autism seems to have had on my life and I look at the flip side as well. Sometimes we as parents get fixated on how many skills our child is lacking. I do it, all the time, but it is important to also focus on their abilities. They do have them, it is just a little harder to unveil. My son is a gift and he holds a gift. His gift is wrapped underneath many different colors and textures of wrapping paper and someday, I will be able to unveil it and know for sure what it is, but I guess I must be patient, loving and accepting.

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.

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.

Every Wednesday over at Jillsy Girl She does a One Word Wednesday, Here she posts a word and you can link up adding a song, post, picture to describe what this word means to you. For me it is a great start for a post and leaves me thinking about it for a day or two. Most people will think of all the fabulous gifts that they could give or receive during this season, but in my home gifts are not of that importance. I mean, my kids love them but I try not to allow them to fall into the commercialized trap of Christmas. There is so much more than that. We used to make cookies and bring them to the Veterans hospital but since my dad passed away, that has been extremely hard for me to do.

I have the gift of children (although sometimes I wonder if this is a gift or a curse). For the moment, as they are sleeping in their beds, and I am drinking a nice hot cup of coughing coffee while hacking my brains out, it is peaceful and quiet and I may think about all the wonderful times I have with my children. I can consider whom I would be without them and like who I am with them. Perfect?? Nope, not even close. But I do what I can do and it isn't easy. It is heart warming though when they give you snuggles and on weekends when they awake and crawl into bed with you. These are the gifts that I receive with open arms.

The gift of children and family

While some may disagree, I feel that Autism was a gift for my family as well. Yes, it causes struggles and can be painful (in many ways), but it has made my family stronger. It has opened our eyes to whole different view. That I am thankful for. Now, I appreciate the smaller, finer details in life. The moments that I feel I had taken advantage of with my older children. The hugs, kisses, long chats.... I love you Mommy's when things are really tough. I look back and notice that at those times I would just say yeah, I love you too but now I find myself engulfed in the moment. Autism has changed my life and it isn't all for the better but it has changed my perspective. My kids are amazing and I have gained so much strength from the struggles and the triumphs.

The gift of acceptance

The gift of friends

The greatest gift I have found this year, and no I am not kissing any butts, is my friends and some family, I have found here and on Facebook. Whether you know it or not, you guys do a lot for me. Commenting on my craziness, acknowledging the difficulties, and filling my mind with funny and enlightening ways to cope. This helps me get through my, sometimes seemingly endless days (and sometimes nights).  I have compiled many friends, some who are more like family than my own, that openly have opened their arms to accept my quirky family and I. I thank you all for that. The gifts that I have are right under my nose and really don't take a lot to think about. I just had to redefine society's interpretation of gift as it means so much more to me.

You may have noticed that in my previous blog posts I often refer to a place called  Spectrumville. It's really more of a state of mind than an actual location, and refers to both the autism community in general, and my own group of autism moms specifically. I both love and hate living in Spectrumville, and to that end, I decided to channel my inner country singer and write a drinking song about it.  Click the link to sing along to the tune of

Jimmy Buffett’s Margaritaville (then scroll down for the new lyrics).