Sharing Experiences…

I didn’t realize the amount of patience i would need to no only get the help i need for zane and for being a parent in general, but for parenting a child on the spectrum.

Wow. Seriously. Wow.

Tantrums, the relentless tantrums, that last and last and last until you just don’t know if you can take it anymore.

Tantrums over the fact that the left shoe was put on before the right shoe. Or when a drop of water falls on a shirt that is not supposed to be there and therefore a whole outfit which has to be the same shirt and pants with no labels or wrinkles in it has to be changed for the tiny drop of water that is now a spot.

Tantrums over the same kind of shoes i had to buy everytime his feet grew.

Tantrums over getting his hair trimmed and the cut pieces of hair that could potentially fall on his face.

Tantrums over anything getting on his hands or feet.

The hours spent in the bath calming him down with warm running water… massaging his feet or scratching his back. (Which, by the way, I am doing right now as I type this) I am sitting here, with his foot in my hands now, thinking to myself. Would I change him? No. I only wish things were easier for him.

As a mom…. I fear I am not doing enough.

So I’m not gonna lie. Doing a blog on my journey with my son and family scared me a lot. First of all, when the blog posted…. I had an amazing out pouring of love and support and with that many used the compliment “warrior.” And though I was so grateful and felt so protected and loved, I had these strange feelings of insecurities flood over me. You see, as much as I felt compelled to start the blog, I felt the need to crawl back into my shell. My hard protective shell.

It scares me for being so candid and open. Scares me for sharing too much. Scares me for opening up my life for scrutiny and judgment. But the thing that scares me most is, revisiting and remembering and rehashing some of the painful moments. I think in order to survive, we tend to tuck these painful moments and memories into a nice little box. We lock the box with a key or in my case wrap with duct tape a million times around so that nobody can peek inside. Then carefully and quietly place it up on the highest shelf possible. Compartmentalize each experience in order to survive and move forward. And move forward in the healthiest way possible.

So in doing this blog, I am asking myself to one by one take the tiny boxes down, get out the scissors and cut open the tape. Peek inside and see what was happening. In order to survive, I had to let go of all the mistakes I made, all of the unknown or bad choices, all of the bad days or hard days. I had to focus on the moment.

Focus and become task master of what is next…

On this morning, I was stuck on the word “warrior” and just couldn’t get past these emotions of feeling like a fake. Then out of the bathtub comes this tiny voice…. (you see, as a ASD mom, bathing, teeth brushing/ flossing, feeding etc and caring for your child might be a long or even lifetime journey). So my son, Zane, as I was shampooing his hair, must have sensed something. We have a strange telepathic connection. Call me crazy (you wouldn’t be the first), but he knew what I was thinking. He asks me in this tiny voice about when he was 4 years old. Now he doesn’t remember much about these beginning journey years either. Possibly from just being young, possibly from being on the Spectrum, and possibly from the seizure medication that causes short term memory loss. Every now and then we talk about things he may or may not remember. And sometimes he brings up things that I don’t think that he remembered at all and suddenly comes up out of the blue.

But he took me by surprise and brought up his first mainstream school. Just basic questions on why he wasn’t there anymore, etc. What did he do wrong that he had to leave. How come they didn’t like him there. All of which broke me. But I pulled up my big girl pants, took out tiny box, cut off the duct tape, and opened the lid…

Inside were the memories, the stories, the battles, the secrets, the lies, the truths, and a million thoughts on what DID happen?

As I was telling him the “good” version, the calm version, the G rated version of our time spent there and that basically he needed more and I brought him to a school that could provide etc. A lightbulb went off in my head. I want each and every one of you as a mom, a dad, a parent, a caregiver, no matter special needs or not to remember this. We all start somewhere. And it isn’t until we are challenged and pushed down can we rise a little stronger, a little wiser.

I didn’t start as the “WARRIOR” I am today. I was a completely different person then. I wasn’t as strong or passionate as I am now.

I started as a scared mother.

I started as a broken woman.

I was frightened and intimidated and reluctant and embarrassed. I think as parents we all find our voice eventually. But in the beginning it is hard. In the beginning, others can see our insecurities and prey on them. And we let them do it to us maybe willingly and maybe unknowingly. It really doesn’t matter. Because for some reason shame and embarrassment are part of the diagnosis. It shouldn’t be.

It Just Is…

Maybe it is from the early stages. Mommy and me at the library- all of the babies are sitting in their mommy’s lap listening to story time, while my child is screaming or only focused on the red ball for the end of story time.

Maybe from the fact you can’t go to any restaurant for any occasion. And if you try are reminded by tantrums and not being able to eat or have any conversation, why in the hell did you attempted to do this again in the first place.

Maybe from the looks of disgust or judgement you get shopping in Target or the grocery store as your child runs through the aisles screaming and possibly knocking down everything off of the shelves or trying to run out of the front door without you as you try to pay for your cart of goods that you have no idea what is in there because the whole shopping experience is a complete blur. I can’t tell you how many times I have left a full cart unpaid in an aisle or checkout behind.

Maybe it is from the time when you attempted a children’s Christmas festival and had to jump on top of and secure your child before they pulled down a 2 story snowman blow up. Then a complete stranger calls the police over so they can question you on child abuse while your child is having a tantrum and your second child is crying from the stroller (yes, yes it happened and I am sure I will get that box of memories down another time). Maybe if they would have just offered help things would have a different outcome? Just a suggestion for bystanders…

Maybe it is from all of the IEP (Individualized Education Program) meetings where you are 1 against a room of 14 school board members?

Maybe it is from the friends you once had that no longer call you for playdates or meals out because their children don’t want to play with your child.

Maybe it is from the milestones that your friends’ children are reaching or doing being posted on FB or Instagram.

The list goes on and on and on and on… How does all of this NOT affect us?

Listen, today a WARRIOR, tomorrow broken, then back to WARRIOR. WE ALL have our moments. But I have learned. I have grown. I have become strong. I have to. End of story. This journey is worth it. It has made me the person, the woman, the mother I am today. I have become accepting of others and their opinions and actions good or bad. All I can do is work on myself and my reaction to others.

So, here I go. One box at a time because that might be all I can handle today. I know you get it. I know you understand. And that, that my friends is why I am sharing with you.