03.01.15 - Sign It - Speak It - Push a Button... I just want to know you love me.

My Dearest Conor,

Hi again. Been 2 months since my last letter. You are keeping me pretty busy these days Conor! About to get busier this week too when you start Buddy Baseball again, but we will get through it together, like we do everything else. :) 

I just wanted to write to you and tell you about a class I took this past Friday. It was a class on communication devices and the different apps that could be used to help people like you communicate. I spent 7 hours in an itty bitty little room with a bunch of other kick ass autism parents, and I gotta tell you Conor, it was a great class! Usually when I am sitting in an itty bitty room like that for 7 hours, it's for traffic school. This class was sooo much better than traffic school! :) 

First of all.... The woman who instructed the class is the mother of a 17 year old boy named Kreed (whom you met for the first time last night). I learned a lot and was very motivated when I got home, so much so that I have spent the last few days off an on reprograming your iPad and adding some new buttons. Erin had a lot of great examples and videos to back up her examples of her son as he used his device. Kreed is 17 and only started using his device in last 5 or 6 years I believe. Today is like a pro at it! 

Kreed and Conor - 02/28/2015

Second........ Besides the fact that learning the device and getting used to it is difficult at times, I also learned the hardest part about implementing a communication device program is getting EVERYONE on board. I have learned this over the past year with various people in your life, but even with all the data taken and all the studies, some people still think that communication devices HINDER those still learning to speak. There are some people who no matter what you say to them, or what proof you show them, will never fully "buy-in" to the benefits of a communication device. I myself am 1000% on board. I have seen what it has done for you over the past year, I have seen what it has done for your communication skills. Hell..... just yesterday while we were driving in the car back from Tucson, you were was able to tell me that you saw McDonald's sign on the side of the road and that you wanted french fries and nuggets. You did this all with your communication device. Conor that is HUGE!!! I wanted to pull over and do a happy dance, but I refrained. I was afraid someone would have called and reported a crazy woman dancing on the side of the road. :) But seriously Conor, HOW would I have known you wanted to eat french fries and nuggets without being able to tell me? Since you can't verbalize that to me (YET), with the use of your device you knew how to communicate with me. You knew how to do that because of the training we were provided by Nick and Lindsay. 

So here's the deal..... This is what I have learned and continue to learn. There are two kinds of people. People who buy in to the use of communication devices and people who don't. I am in the "people who do buy in" group. Erin gave many examples in the class on Friday, but one has stuck in my head and just won't leave. Kreed is 17 years old and only started using a device to communicate a few years ago. IMAGINE all the things he has ever wanted to say over the past several years that he was unable to say because he did not have the tools to do so. I personally could not imagine going through life just staring at everyone and everything, and not have the means to communicate my thoughts, feelings, wants, and needs. Not have any way to tell someone I was in pain, or didn't like the slop that they kept feeding me over and over again. 

Conor, let me just say this. YOU ARE MY HERO. You deal with sooo much on a daily basis, and sure you have a melt down and a tantrum there, but you still chug on. There is sooo much that we are trying to shove into that little brain of yours in such as short amount of time, I understand why you get frustrated. I just hope you realize, years from now when you are reading this letter, that I pushed because I love you and I pushed because this is just such a crucial time in your development. If I didn't push, I feel I would not be doing my job as your mother. 

Myself, along with all your therapists, are trying teaching you how to communicate in every possible way we can think of. Of course, every single day, every waking hour of every single day, we are trying to teach  you how to speak using your spoken word. But... we also work on teaching you sign language skills as well as teaching you how to communicate using your TouchChat app and iPad. Eventually, when you get better with your writing skills and reading and writing, we will teach you how to communicate using the alphabet and writing utensils as well. You have a ways to go before we get there, but show more and more progress every day. 

Conor, I am not going to lie to you.... of course I want you to speak. Of course I want to hear your voice. I want to hear you annoy me by repeating everything over and over again. I want you to ask me "why" a million times. I want to have an argument with you. I honestly 100% feel in my heart that YOU WILL SPEAK, ONE DAY. My head is telling me that I need to be a realist and that there is still the possibility that it may never happen. I need to prepare you for that, I need to prepare me for that. THAT is why I push. THAT is why I am doing everything possible to make sure that you have all the tools you need to learn to communicate. 

I refuse to wait till you are 10 or 12 or 15 before I say "okay, he is never going to talk maybe we should look into getting him a communication device". Just because at the age of 4 when you started using your device, and now at 5 when we push you to use it more, I am by no means going to allow you to use your device as a crutch to NOT use your verbal communication skills. But...... this is me and this is my choice as your mother, to make sure you have these tools. Conor, I NEED you to be able to tell me your head hurts even if it's by using sign language. I NEED to know that you need a drink of water, even if it's by using your device. Those things I need to know. But there is one thing I would give practically anything to hear you SAY, and that is "I LOVE YOU". But, for now, I will accept sign language. I will accept hearing it on your device.

Conor signing "I Love You"

One more thing before I sign off on this letter. There are some people that may not like me because I do push so much. There are some people who may not agree with my way of thinking in regards to this device -vs- speech -vs- sign language or any of my other choices regarding your therapy for that matter. There are also some people who I had expected more from in regards to "being on board", but I have learned recently that I can't expect to change the thought process of everyone on the planet. I have been told on numerous occasions that my expectations are rather high. Well..... when it comes to my kids, you bet your ass my expectations are high, as are my expectations for those around my kids. I understand that no one is going to fight as hard for you, your services, your therapy, your education, your everything more than I will. Conor, I will fight for you till my last breath. 

Look, like I said, I know you are going through a lot right now, but in time, this will all be worth it. I am soooo incredibly proud of you and of all that you have accomplished. I wish you would be a little less ninja like, but that is who you are and I love you for it no matter what. ;) You keep up the good work you are doing Monkey. I will keep pushing to give you the tools you need to do it. It will pay off.... 

I love you baby. 

All My Love, Forever.
Mom