I miss the excitement and the joy of giving someone something special. This is my nephew and well. Sorry it is blurry I had to catch them quickly. LOL

Hello again from Wacky Wonderful Wednesday. I think it is a perfect example of how literal and how confusing their worlds are. I am glad to be able to have a little piece of his understanding. He also told me yesterday that his doggie talks to him all the time. I can say, he does talk back and I guess it goes hand in hand with the book I got for Christmas. If you want to hear more about that just read A Gift or a Curse. Enjoy your Wacky Wonderful Wednesday and Hop along to tell me your Midweek smiles.

Today is the 4th of January. My Dad’s birthday is next month. My niece's birthday is tomorrow. Why do I just want to cry? My Dad died on January 4th 2005. That means that he has been gone for six years today. It still seems like yesterday.

I am not sure how or even if I should try to explain the day to my ASD child. He didn’t know his PeePa but I want him to know of him. Is that too complicated for him? He has his PeePa’s name. He was born the following year and I felt he should bear my Dad’s name. It was easy to agree with his father on that one because his father’s name is the same as well.

Actually my son has the temper of my father so the name fits. LOL… He was the ultimate Grumpy Old Man and always throwing a debate at you which he argued whole heartedly. Surprisingly I miss that. I miss the Love ya instead of I love you. I think the first time I heard him say I love you was about a month before he died.

He used to call me at 10:30 pm and ask me to go to the store and get him a Primatene Mist, a dozen Dunkin Donuts Coffee and raisin cinnamon rolls.  I would get so annoyed and then when I got there I would tell him I couldn’t stay long.  He would keep me there for an hour or two talking about  whatever hot debate was on the news. It bothered the hell out of me and when I look back I anger myself. That was precious time that I was so rushy to end. I would do anything to have a little more time.

I had so much going on when my father was really sick. I couldn’t be there as often as I wish I had.  I think in life we all have regrets and we all consider the what ifs. Today is a really tough day for me. I am sorry I am ranting but it just suddenly hit me.

I woke up this morning and nearly chewed my daughter’s head off. Yes, she was in the wrong but, it didn’t require me to be the way I was. I chewed my boyfriend a new asshole over something minor. Then I felt as if my feelings were mocked and I felt so hurt. 

I think this is one of those moments that you just don’t want to be in Mom mode. I don’t want to worry about everyone else’ feelings. I want someone to worry and care about my feelings. You know a hug and a little sympathy. Is that so much to ask for? I know my children just don’t get it. I wish they did but since I can just write it down and ease it a little I thank you all for listening to me blubber. OK… wiping the tears, putting the smile back on and onwards and upwards.

We tried doing this activity with him the other day and it ended in a huge melt down. It went wonderful yesterday and he was interacting with his sister.

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!!

Now that the holidays are over, How did yours go? Did you have endless meltdowns or did it go better than expected? I think this is a great blog hop hosted by Adventures in Extreme Parenthood. I think I might add a little thought about how the aftermath f the holidays have been.

Let me explain why... Chucky.... (minus the cheese for this one...) tolerated Christmas very well. We even went to a family dinner and we didn't have any melts. Amazing right? Don't get over excited yet ok... He did wonderful while we were there but lost it after we got home and Christmas day went OK too... There were a couple melts but nothing atypical. Couple days later a maniac entered my home, with inconsolable tantrums and problems sleeping. Today, well lets just say after I picked him up from his dad's house he had a 20 min meltdown. We made his bed with a new comfy and sat in his calm room. He was fine then. I think with some preparation our holidays went well but the aftermath of all the activity will still hit you so good luck with that.

How does your family celebrate the holidays?
The holidays for us are pretty simple. We get a tree decorate it, listen to music (which is almost impossible with my son), and enjoy each other. We make visits to loved ones the day before and stay home on Christmas day.

What changes have you had to make due to raising children with special needs?
The noise level is quieter and my son can open gifts when he is ready. A lot of times he gets overwhelmed. This year I bought less items but they were more expensive. It worked out better for both of us. He plays with what he got and i am not tripping on useless toys that he lines up in the middle of the floor. LOL

If you'd like to join the "Different but not less" holiday blog hop you can do so by writing your own blog post about how your family celebrates the holiday season while balancing the needs of your child with autism or another special medical condition.

Simply add your name (or your blog name) and the URL to your blog post in the Mr. Linky located on her page  and we can visit each other's blogs and share ideas, tips, and inspiration.

Lets get hopping!

I haven't done my recap for the year and have hardly met a year as a blogger but I think I can recap my year for you and it would also serve as a nice insight to my life.
January 2010- 
Much needed daughter time


My son was diagnosed.....



Pumpkin and Chucky Cheese got their hair dyed




       March 2010-
Chucky Cheese turned 4!!!
















My daughter sang in All County!!






April 2010

Buddy

Chucky Cheese

Chipmunk