Plug it out!

bellsLanguage deficits are extremely frustrating, not only for the person trying to express themselves but for the listener. Over the years I have learned to speak Bryan and interpret many of his sayings for their real meaning. Some cute funny things are like this: Bryan always empties the dishwasher. In the middle of emptying it he will say, “there’s a lot of dishwasher.” This means the dishwasher was very full and had a lot of dishes. Or he comes up with silly stuff, like instead of unplug he says “plug it out”. Or he will get some things backwards. He will say to my dad “you’re my grandson” and then we correct him and he says, “I’m your grandson.” All in there, just not always the way you expect it to be. Mostly a good thing.

The hardest thing for many kids with autism, and Bryan in particular, is the exchange that takes place in conversation. One person asks a question and the other person answers. Very very basic, but this essential structure of conversation was what led me to the conclusion something was wrong in the first place. Go back to when Bryan was almost 3 and I took him to the zoo with a friend. He knew the sounds the animals made, but did not truly engage. My friend and her son, a few months younger than Bryan, were having conversation. He was asking questions and answering questions. Not Bryan. Driving home in the car I asked him if he liked the elephant or the tiger and he said nothing. No answer at all. Hmm. As time progressed and tons, I mean tons of speech and language therapy which he still gets today, he started to answer some questions. It was fairly easy to get a who question answered or a where answered. I think for Bryan those were just easier questions because he knew people’s names and heard us often talk about places we were going and these questions don’t require the same level of thinking to answer.  It also taught me that when you ask him something, or talk to him, you cannot assume he knows the meaning of the word. I had to remind myself that you need to give him the definition of the word  because the nuance or the gist of it is not picked up. Still need to do this today. It really makes you think about how much language is actually learned by inference and not definition. As a parent or sibling it’s something that always has to be in your mind if you want to effectively communicate with your ASD kid.

The key to learning for Bryan is allowing him the time to process. It all comes bubbling up if you give it time. However, a huge thing has now started to happen. Like most Bryan things, it is something that just started happening and I say to myself, wow, this is enormous. So here is the thing; getting an answer to the ‘why’ question has always eluded us. It is so frustrating and so challenging, particularly when trying to get to the root cause of some unexpected behavioral issue. For example, he will get upset at school and pinch someone or kick the desk. If you ask him, why did you get upset at school. He will say “because I pinched so and so.” I will say “No Bryan, that’s what you did after you got upset, but what caused you to get upset, why were you upset”. And he will say ” because I hurt so and so” or “because I had a bad moment”. UGH come on you’re killing me. You know the answer but you can’t tell me. He’s 16 and this has always been the one critical piece missing in having meaningful conversation.

Bryan answered a why question!!!!!!!!!!!!!!!!!!!

Now I know you may think I’m cookoo, but it really is beyond huge. It has only happened over the last 10 days and not consistently, but still!! Bryan loves videos, movies, and music. He particularly still loves Thomas the Tank Engine. It is juvenile, but the tank engines have very expressive faces and the videos often deal with the tank engine’s emotions and their interaction. Thomas videos have been regarding as instructional for face recognition and therefore a good tool for little kids with autism. I will not let him listen to Sesame Street or Barney (and thankfully this does not come up anymore) but Thomas is a different story. We do the voices together in the car and he tells me all about the engines and what’s going on. So a few times recently he has told me that one of the engines was upset. I asked him “why was the engine upset”. I was not testing him, I was really just driving and making conversation. He said “he was upset because he was sick and making black smoke”. I paused a second, realizing the enormity of this and decided to probe a bit more and said “why was the engine making black smoke?” and he said “because he ran over some dirty rocks and it got in his engine”. OMG he answered two why questions perfectly. I seriously choked back tears. I said “Bryan you answered why questions, yay” As I speak Bryan, Bryan speaks Mommy. He said, ” I love you so much” which is his standard answer for anything that he does not know the answer I’m looking for but knows I am very happy. Now I know we are not splitting the atom here, but by my standards, we might as well be. To give you a sense of the enormity I couldn’t wait to tell Bryan’s speech therapist. She teared up and said, “we’ve been working on this for years.” It truly takes a village, I’ll tell you that.

So, I am not going to say this is happening all of the time, but it has happened and the more he exercises this “muscle” the more it will happen. I’ve waited so long to get this type of answer but I knew someday it would come. 

 

 

 

 

The noise in my head

If you know us and/or read my blog you know that Bryan is not a quiet kid. He talks loud, he will yell randomly and basically when he’s awake you hear him. I don’t really hear him anymore. I kind of notice more when I don’t hear him than when I do.  A few nights ago he went to bed early and Jason came downstairs to talk to me. I said, “Is Bry sleeping?”. He said “sure, can’t you hear how quiet it is? It’s nice to have a little quiet.” It’s true, the quiet is almost so loud you can hear it. It’s just another one of those things you get used to, it becomes your normal and you only notice the absence of it. Really I am way more distracted by the noise in my head, the little sounds of have you been planning for the future for Bryan sounds. He’s 16 so how much longer can I pretend he’s a little kid? Financial planning is one thing for him, but the rest, yikes, the rest of it.  The rules change, as I understand them, at 18. He will need a guardian and other things that I have not faced up to  yet. I think if I’m really honest there is some sort of secret hope left that maybe in a few years he will be ready for college and a “normal” life. I am a bit ashamed to admit that while I try to be realistic all of the time, dealing with Bryan’s adulthood disturbs me more than anything. There is no hiding the fact that my son has autism and very likely will not have a typical life. I truly feel like a piece of crap even typing this, let alone processing it, let alone living it. Beyond, even after all of this time. It is shocking to me that I still have some little place in my soul that thinks he may end up some typical adult. I guess as a parent, there is no end to mourning the differences that a special needs child brings to you. There is still no peace and there never will be. No amount of love and acceptance can ever truly heal the feeling that sometimes things aren’t fair. And I know everyone has challenges and ups and downs with their kids. It’s different, I promise you. I know because I also have a typical kid. There is a difference between worrying about how your typical kid will navigate life and how you navigate on behalf of the special needs one.

I will get over myself and deal with the reality and figure out what needs to be done.

If you are one of my close friends or autism parents reading this you may be saying, “wow I didn’t know you felt this way”. Yeah, I haven’t faced up to it. When people ask if Bryan will live on his own or go to college or drive I cringe, both literally and figuratively. The loud battle between the mind and the heart, the needing to face up to the reality of what is coming and the emotional denial is deafening. When someone says group home I get anxious, like can’t you people just shut up?  I know this sounds extremely melodramatic but it’s just sort of the next thing in my autism journey. I look at memes people post on Facebook and all over the internet about kids that are often undressed or running away or hurting themselves. Those “issues” are not our autism issues any longer. I see those posts and I can measure our growth since those times. While Bryan may get up very early on a weekend and be very loud and disturbing, I no longer have to get out of bed and deal with it. He can make his own breakfast and I smile in my bed when I hear him up early and clanking plates because he’s emptying the dishwasher. The worst he will do is eat too much! The new challenges are deep. I can’t hide behind time anymore. Seems like we are growing up at the same time in many ways.