Autism As A Whole

Now I know that when you have a baby you expect to have sleep deprived nights but I didn't think they would last almost 4 years. Give me a break!! My son was waking all night and he was not wanting to play either. In fact he didn't want to be touched, flailed his arms and legs and screamed at the top of his lungs. He banged his head, punched anyone within range and bit. He was a demon child!!!! Not really but man it was way more than I ever dealt with. 

Last night as I was doing a little grocery shopping with Chucky and Pumpkin at Hannaford a woman approached me asking about the device my son was playing with. I explained that it was an iPad that he got for Christmas . She asked what it did and inquired if they were for children. I told her that we use it to help him communicate and also to teach him. They are not just for children but many children use them. I did NOT mention that Chucky had Autism. It didn't even cross my mind to tell her this.

I question myself about why I didn't take the opportunity to educate her about my son's diagnosis. Why not educate an open ear? Was it for fear of rejection or maybe just an avoidance of the topic? Although it may have seemed like a perfect situation, at that moment, I didn't need to. He was calm and was watching Curious George. I don't feel there is a need to point out to everyone that he has some difficulties. I want them to know him for who he is and his name is Chucky Cheese not Autism. The woman continued to chat about her son and Curious George and the iPad when my son began flapping and screeching.

It was at that moment that my heart dropped and I felt like I wanted to run in the opposite direction. Instead I tried to calm him and maintain the conversation despite my fear of a rude ignorant comment. I misjudged the woman and I am sorry for that. Instead of making a nasty comment or judging my son she calmly asked me if my son had Autism. Yes, you heard me right. She asked me about my son without coming to her own conclusions and without making false judgement.

This is the first time I have encountered someone that was able to question the behavior without judging my parenting and being critical. My offering the information wasn't needed. While I was cringing and looking for a quick exit she was connecting and inquired. Maybe she saw the instant fear of rejection in my eyes or the look of complete tenderness in my interaction with him, but she got it and was compassionate. I appreciate this and encourage anyone who is unsure about a situation to ask. It feels better than to have someone gawking or making rude comments.

This lady made my day. Not only was she open to attempt to converse with my son but she was also open enough to ask questions. She wanted to know more which is how we spread awareness and how we open the doors to acceptance. The story doesn't end there because she also looked at me and expressed how wonderful she felt I was doing with my son. This made me feel as if I was invincible even if that invincibility only lasted 5 minutes. It was worth it. So, to the woman in Hannaford I must say thank you. You gave me more than you could ever know just by asking a question and exchanging kind words and a smile.

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!!

Image via WikipediaWell, I bit the bullet and bought the IPad. The lump in my throat still isn't gone. The thoughts about what might occur with this is endless. He could love it and learn a ton from it. Although the thoughts that he could break it are definitely on that list as well. Eventually I want to be able to buy him the OtterBox cover for safety but for now I have a case and a few apps that were free. Cool!!! I hope he will be excited to receive this.

I know I said I was going Android but I attempted to purchase today and everyone is back ordered. Therefore I have decided to just go Apple. At least I know what I am getting and it is coming from a reputable company. The guy on the phone was amazing and the transaction went rather smooth. Now that the big stuff is out of the way I just have a few small items and stuffers to go!!