The Language Barrier

I want to talk about what it's like to have a non-verbal toddler.  I've touched on this before, many times, but I want to talk specifically and solely about this.  And lately, I've gotten a lot more "likes" on my blog's FB page by those who are in the autism community (for which I am grateful, because this is when I feel the feedback will really start coming....for better or for worse!)  and so I'd like to share my experience with this to see if anyone else out there has some insight, hopeful stories, or just plain perspective.  

Unlike many other young autistic children, my son has not yet uttered a single word. Some parents have experiences where their children hit each of their milestones, including speaking, and then watch them drift away at around 18 months of age. This seems to be pretty "typical" when I hear parent's tell their autistic child's story. I have never been able to relate to this.   Jacqueline Laurita, of Real Housewives of New Jersey, fairly recently went public about her son's autism. When I first heard this news, I was watching the reunion show (of which I have admitted many times, I have an unhealthy addiction) and she was having a very emotional discussion about this fact.  Of course, I cry at just about everything these days, but when the audio recording of her young son's voice ended a beautiful  montage of him in which he uttered the words, "I love you" to her, I began to sob.  I felt so incredibly sad for her to have had that moment with him, and then to have watched  it slip away into the 'abyss of language' that is Autism. How could she have known that this may have been the last time she would hear these words from him for a very long time?  (I choose not to say ever again, because I always believe that these kids can find their voice again!)  I could not get over how heartbreaking that must have been for her. I still cry when I think about that. Not just for her, but for every single parent who has that faint memory of their child's sweet voice remaining in their head, and now just looks into their distant eyes each day and no words are exchanged.   I've heard this story over and over from parents whose kids have "lost language" at some point, but to actually hear that little voice so clearly, and to know that it just suddenly disappeared, really was a heart wrenching thought for me.

Oddly enough, some may think that scenario is less heart wrenching than the fact that I have NEVER heard my son utter even a single word.  At about a year old, we got a few "ba ba ba's" out of him, and  even have a "dada" on film at one point, but it never moved past that.  And for this reason, I guess I never really could pinpoint when even the syllables stopped.  Nicholas communicates basically through a series of high pitched whines.  It has been this way for so long, that I just know how to read them, and they don't even sound odd to me anymore. (I'm only aware of them when we are in public somewhere, and I begin getting the stares....) When he's excited, they are accompanied by smiles, and when he is unhappy, they are more distinctive and frustrated sounding.  He does not cry, and has never shed tears.  He only whines.  Well, and laughs, of course!  :-)

When he was younger (pre-diagnosis,) I kept thinking that the language piece would come eventually.  But when therapists started focusing on using alternate communication devices to help him communicate his basic needs (like PECS and the IPad) I started to lose a little hope.  I'm just being honest.  As a parent who is new to the Autism game, but also one who has heard numerous "professionals" say that  "if they don't speak by age 6, it likely won't ever happen," it just lets a little air out of my tires each day that we inch towards his alleged "cut-off" age with no progress in his verbal communication.  For us, this area has been 100% stagnant since beginning speech when he was a year old.  Now, don't mistake...this is not to say that he doesn't communicate at all.  He lets me know now (thanks to ABA) via sign language that he wants milk or his Ipad, but for now, we are limited to basically these two things.  He does not often initiate communication, even if he's hungry. I could ask him 300 times if he wants to eat, and he will not respond in any way.  One could then easily assume that he is not hungry, but when I proceed to bring his food to his table as I do every single day, he will undoubtedly eat the entire bowl and THEN some of whatever is on my menu for that meal.  I may ask him if he's thirsty, and he will not respond with any signals, but eventually I will give him his bottle (because yes, we are working on using a straw but making very slow progress at this) and he will drink the entire 8 ounces in a matter of minutes.

So what is it like to have a non-verbal toddler???  It is scary.  I don't know if he's had a good or bad day at school, if he enjoys the school bus that I send him on every day begrudgingly but out of necessity, if he actually likes the food I make for him or if he just eats it because he's starving, if' he's waking up in the middle of the night because there is a monster under his bed, or because he has a stomach ache.   I mean,  these just are the basics.  But there there are other things I think about.  Do I annoy him when I constantly repeat myself to him just to "make conversation?" What is his favorite color? What things interest him, outside of spelling? (Ironic that one who has not yet found verbal language  is so very gifted and interested in phonics, isnt' it?!) What does he REALLY want to do right now when we have 30 minutes to play? Would he ask to go to the play land at the mall if he could? Or is he really just content sitting here playing on his Ipad like he does every day?  He doesn't initiate much, and he always waits for me to direct him, so I don't know if he feels like he's not SUPPOSED to do anything until prompted, or if he's just truly fine how he is.  Is he ever sad? Does he feel upset when he has to change therapists, or schools?   Does he feel anger?  Does he feel left out when his brother and sister demand more of my time, while he sits contently watching Yo Gabba Gabba?  Does know what love means?  Does he feel love? Does he feel MY love?

I often talk to him and ask him about his day, and try to guess what he would say back to me.  I always try to engage him in "conversation" because I know that he understands every single word that I say, and I'm sure he likes to have my direct attention (even though he doesn't seek it out.)  I know this because of people like Carly Fleischmann, who is a brilliant young woman living with Autism, who has found her voice through typing.  Because of her ability to communicate her insight as an autistic person, I have become aware, almost to a fault, that Nicholas has feelings and emotions that he can't express, and that at some point down the road (whether verbally or by other means) he may tell me that I irritated the hell out of him!  I think about this more often than you'd think. Because of the many Autistic adults who have been able to express that they have thoughts and emotions just like the rest of us, I have educated myself on this and make sure that I acknowledge this to Nicholas.   However, sometimes I feel that because Nicholas is only four, I have no frame of reference as to what he understands, thinks and feels....not only because he's autistic, but because he's FOUR, and I have no idea what other four year olds think about, talk about, and understand.  It's like a double whammy of ignorance for me.

 And the fact of the matter is that it is very difficult to talk to someone who doesn't talk back.  Now, I'm not suggesting that this is at all the same thing (and I also hope this does not offend anyone in any way) but is the best example that I can think of when trying to explain this to someone who has not ever dealt with a non-verbal child.

Think about visiting a loved-one in the hospital who has just fallen into a coma.  You come in, sit down, tell them how you feel about them, and talk as much as you can to them during your visit until you run out of things to say. You tell them positive things, funny things, or just whatever is on your mind in that moment.  You do this because you know that they can hear you, you know they want you there, and you know it is important.  But imagine that this person remains this way for months and months....years even.   And you continue to visit this person each and every day. It becomes harder and harder to find things to talk about, because they are not able to show their interest in your subject matter, and you don't have anything new and exciting to share with them. You can ask them questions, but they can't respond.  So, you continue to tell them how you feel about them, that you love them, and try your best to keep up the one sided conversation each time you visit,  but it becomes more and more difficult as time passes.

Sometimes this is how I feel with Nicholas.  It is different from the scenario above, because of course he can respond to me in SOME ways.    I am thankful every day that I can have hugs and kisses from him (though I don't know if he understands why I ask him for a kiss...)  and he can smile if he thinks something I say is funny.  But from a conversational standpoint, it is just hard to know what to say, how much to say, and when I'm not saying enough.  I don't know if that makes any sense, but I often struggle with this.  I feel that I neglect him "verbally" sometimes because his younger siblings are always asking (or crying) for something, and with Nicholas, it's the opposite....I need to always remember to ask HIM if he needs something.  He is quiet, and sometimes I think his needs are not met as quickly as they should be as a result.

Aside from all of this, I just wonder if he's truly a happy little boy inside.  I wonder if he has interests other than what he outwardly shows through his Ipad and blocks.  I wonder if he wishes that I talked to him more, or if he wishes I'd leave him alone sometimes.  I wonder......I wonder a LOT of things.
We do share our "moments" together, and we have unspoken communication.  Sometimes, instead of talking, I just choose to "be" with him....sitting next to him while he does what he loves (plays word games on his beloved tablet.)  But sometimes, I wonder if that's okay, and if that is enough. These are the times I keep wondering where that rule book is....anyone? Anyone????

So to you autism parents reading this who have experienced this with your kids, I'd love to hear from you.  How do you talk to your kids? What do you say? How do you feel about it?  Also, I should qualify my earlier statement about the verbal 'cut-off" age of 6....I know this not to be true, and I'd love to hear your stories that disprove this horrible theory that is doled out by every professional that I've asked.  Every time I hear about a child who began speaking at age 8, 9, 10, or even 17, it gives me hope that one day I will know my little man's inner thoughts, and who he really is.

After all, that is all I really want.....

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