Yes I Am Sitting Here Again

Yes tears are in my eyes and slowly and silently overflowing down my cheeks.

Yes I am holding my eight year old son who has Cerebral Palsy and is nonverbal.

Yes I’m wondering how many times he will wake up tonight.

Yes my mind is racing with what could be wrong. Does his tummy hurt since he has barely eaten anything? Is his ear bothering him? Does he need to poop? Did he have a bad dream? Is he scared? All these thoughts and more are racing through my mind just trying to figure out how to help him.

Yes he got frustrated with me once again and yes I got frustrated with him.

Yes…once again…it’s just me and him to work it out on our own.

Nights are rough. Most of you know that from my previous posts. Some nights are easier than others but most nights are sleep deprived and frustration filled.

Night after night I do it on my own.

Being a special needs parent is hard. But being a special needs parent who carries the weight on my shoulders is that much harder. I very rarely get a break period…but at night it never happens.

I get him ready for bed, I fix his nighttime drink, I rock him, I lay him down in his bed. When he wakes up, I get him and do the cycle all over again.

Sometimes it takes everything I have to keep my eyes open. Sometimes we raise our voices at each other. And yes…sometimes there are tears.

Sometimes I would give anything for someone to say “Hey I got this!” when I hear him wake up and to just let me lay there.

But it’s in those moments of pure frustration and sleep deprivation that it allows me to take a deep breath, look into his big hazel eyes and talk just to him and no one else. It’s in these moments I get to truly remind him how much I love him and how if he will let me and help me then I can help him. It’s in these moments that I can feel him listening and hanging on to every word I say. And when I’m finished and ask if he’s ready to cuddle and go to sleep and he gives me his reassuring smile and nod, it’s in that moment that I can feel the weight shift.

As I feel him drift off to sleep and his little trapped body relax, it’s in that moment that I’m reminded why I am his Mom!

Moral of the story: even in the moments of feeling frustrated and alone there is still a reason to take a deep breath, find the good and shift the weight!

Have a blessed day!

Nonverbal Doesn’t Mean We Don’t Talk

Think about how many conversations you have with your child. Think about the hundreds of questions you get asked daily by your toddler.

Think about the questions you ask your 7 year old when they get in the car from school.

Think about the conversations you have with your nine year old, sixteen year old, twenty year old.

Now imagine all those conversations being made with a nonverbal child. Does it sound crazy? Maybe! But I have more conversations with Grant some days then I have with Matthew! I would say the same for Grace but she’s two…all she does is talk!!

I have conversations with Grant about literally everything going on in life. He wakes up in the morning and it’s “Good morning Grant. Did you sleep good? Did you have sweet dreams?” I get the usual smile and head nod yes. I read him the lunch menu for school and ask if he wants hot or cold lunch. It’s usually cold so I ask him what he wants, what kind of chips, which cookies. I talk to him about all the things I have to do. I talk to him about anything fun or exciting or things that I know will happen in his day that might be a little stressful for him.

We talk about the weather. We talk about the crazy videos he watches on YouTube Kids. I talk to him while I change his clothes and brush his teeth and fix his hair.

I walk him through everything I do at home. “Grant I need to clean.” “Grant I have to go to the bathroom.” “I guess I will sweep the floor, Grant.” EVERYTHING I do he usually knows about. Even to the point that sometimes I say it even when he’s not here…that might make me a little crazy!!

He gets in the car from school and it’s “How was your day?” “What therapies did you have today?” “What was your special?” “Did you eat all your lunch?”

We talk about anything and everything. I’m in big trouble if Grant ever starts talking because he knows some of my biggest secrets! We can also have a conversation without either of us saying a word.

One of my favorite things is when he laughs out loud about something that was said (usually that is completely inappropriate and he shouldn’t understand but he does) or something we are watching. A couple of weeks ago there was a video on Facebook of chickens chasing kids. Sometimes he would start laughing at even before I did which made me laugh even harder.

I won’t lie…it’s not always easy with him being nonverbal. But guess what…in those not so easy times we still talk. He will get mad and throw his hands down at me which means stop. Or he will screech at me or snap at me. Even in those moments we are talking.

He even has conversations on the phone. He talks to his Ma and Pa all the time on the phone. They know the sounds he make and what they mean. He answers every question they ask.

I can’t imagine a life without those quiet conversations we have. Where a look between us can mean so much. Where he can be watching a movie for the first time and hear the line “Nobody puts baby in a corner” and immediately look at me with this smile and I know that he is saying “Hey that’s what Pa says!”

Grant being nonverbal has taught me to be more aware of a person. Not just what they are saying but their body language, their tone. It’s tuned me in to being more aware of something going on with Matthew that his voice might not be saying.

In this day people take so much for granted. I remember being heart broken the moment I realized he may never “talk” but he does talk and boy does he have so much to say!

Moral of the story: just because the words don’t come out verbally doesn’t mean they are not being said! Learn to adapt and listen with more than your ears!

Have a blessed day!