Truth Talk

The Label

If you are reading this, Thank you. I am going to get real “real” here for a moment. I’m going to talk about something that has been weighing me and my family down for nearly two years, something that is so personal, so raw. So, please, let us not judge. Let us lift each other. Tell me, it will be okay. Tell me, I am not alone and that my feelings are valid and okay. Tell me your experiences, share with me how you cope, and most of all, let us be in this together.

I made the call. The call I have been dreading to make. The call that will change some things. The call that will smack a “label” on the situation. I made the call to have my son tested for the “spectrum” after being advised by his therapists.  It weighed on me for a few months, I have been naive and putting it off. I have been telling myself he is getting better.  I have been telling myself, sure, he sometimes acts like other kids, he’s totally fine. I didn’t want to make the call for so long. Why? Because of the label, because of the judgement, because “your kid” is not like my kid. Because “he’s different”, because “you’re not a good parent”, because of all the hatred, the negativity surrounding the label and the fact that he will be different and I just don’t know how to accept it.

It is almost as if my husband (who is taking this much harder than I, but does not know how to express it), that we will be entering the 4 Stages of Grief. Is this normal? I do not know what normal is. I do not know how to feel, act, breathe, explain myself, to others, to anyone or someday, to him. Oh gosh, the explaining. That is another subject. The outlook is leaning towards the positive diagnosis. His symptoms, actions, and lack of actions, are all there. They fit the “criteria”. They fit the mold of the child on the “spectrum”. So, I’m dealing with the “why us”? Why did we get chosen with this obstacle? What did I do wrong while he was in womb? What did I do wrong as a stay at home mom? What could I have done differently? Is it my fault? I want to blame someone so bad. I want to blame whoever did this to my child and to our family for making this so difficult, for him, and for us.

I find myself in situations, where I have to explain to random strangers, at the park, in a toddler class, at the grocery store, or more recently at the hair cut joint. I feel guilty, I feel ashamed, I feel embarrassed. This is the hardest on me. I take my son everywhere he needs to go, doctors, play dates, parks, hair cuts, grocery stores, everywhere, you name it. So I feel it all falls on me to handle. It is a lot to bear on one person. It is a lot of judgement to be taken, looks to be given, explanations to be made and so on.

I was at the park last week, he was running from place to place, there were two other little boys there, his same age (I know this because eventually, I had to break the awkwardness and start talking to the parents). My little guy was running and at one point chasing the other boy saying his usual only word “uck” (for truck). I totally felt normal for a split second. But, the other two boys were running and having conversations back and forth (obviously, toddler conversations, one to three words). Which I was totally jealous of. I could just see the wonder in the parents eyes as they looked at Cruz. So, I took a deep breath, walked over to them and felt I had to explain, “he’s a little behind”…. the normal shenanigans that comes along with all of this, the social awkwardness, the sensory, the speech, all that. Just a few days ago, we were at the hair cut joint for my oldest. He was getting his cut, and me and little man were trying to keep our cool while we waited.  He dropped his sucker on the floor and it was the end of the world. Mind you, he doesn’t lick or even eat a sucker like we would, he just holds it – then drops it. It’s the end of the world and he immediately starts head bunting the glass door in front of everyone in the waiting room. Again, awkward! I have to explain to the waiting room, he does not talk yet, and does not know how to express himself and he feels this is the way to do it. As I am explaining to them, I am trying to calm him down and offer to him to go outside, where he instantly is chilled. Outdoors is his jam.

You see where I am getting at. You see it is a constant, “gosh I have to take him out in public and be put in that position of explaining the situation to random strangers”, all. the. time. It is hard, it is hard mentally, and not just the having to explain, but having to deal with the behaviors all day, everyday, all alone. It’s hard physically too.

Okay now to the part where, I’m getting brutally honest. I ask you, *please refrain from judgement*

I feel guilty, because I want a “normal” child. A child who doesn’t take so much of my energy. A child who doesn’t steal from my looking on the positive side. A child who doesn’t make me feel like I’ve really fucked up as a mother, as a caretaker, and especially as a caretaker of a child on the spectrum. A child whom, no matter what I do, it is never enough to fix, no matter how many sensory bins, or toys I buy, or bubbles I blow, or impersonations I try to get him to make, or classes I take him to, or how many kids he’s around, will still come home being “that kid”. Why did I get chosen from God to be given this situation? Is it awful that I am jealous of “normal” kids and their parents? They have no idea how hard having a child like this is. So then, the jealousy turns to anger. I see all of these perfect children, doing the normal activities and acting their ages, and eating normal foods, and playing normal games, saying normal words, singing normal songs, it makes me jealous, then sad, and then angry. I feel this way, immediately when I see moms with their normal children. They have no fucking clue how hard dealing with a child like this is, the toll it takes on me personally, the toll on our marriage, the toll on his sibling. I watch them, enjoy their kids, complain about their kids, and I want to scream because they have no clue. The little things they can do with their child, the little things that their child can do, that mine does not, they take for granted. It is draining, the feelings, the emotions, the physical aspect of our day to day. It. Is. Draining.

Listen, I’m not here to complain. I am not here to even vent or tell you that I literally may just suck as a mom. I am here for guidance. Not for judgement, but for help. From others who have experienced a child like this, or from other Moms who are experiencing these feelings. I have no one. I have no one to talk to about this, that actually has a child in Cruz’s shoes, or a parent in my shoes, share with me your advice, how you deal with the negativity, the emotions, the day to day. The in’s, the out’s, the care and resources you receive that you find helpful to you and your child, all of that. I want to know, I want to hear from you!

I love my baby so much it hurts. I love him so much, that I would do anything to not have him feel like an outcast or to be made to feel different his whole life. That alone, breaks my heart, knowing that someday, my struggles will be his struggles. I never want him to feel the way I do. If I could rip this diagnosis, disorder and all of the behaviors, away so he would never have to see or deal with them, I would.

My goal someday, is for me to understand and most importantly, accept the behavior disorder for my son. Also, to be able to encourage others; moms, dads, grandparents, children, that this IS something we can work through, that it is not the end of the world, and to spread awareness. I hope that my next post will not be about my feelings, but focus on what we have accomplished and learned, the activities we do, the lessons during therapies that have helped us conquer goals. I hope to be a help to someone else, rather than me sitting here asking for help. I hope to be the shoulder someone else needs to lean on. I hope to be the encouragement a struggling mom needs. I hope someday, that I will not let this define us.

As for today, I will continue to take it one day at a time, to hopefully see progress in him as the days go on. To hopefully not feel and receive so much blame, hatred, anger, jealousy, criticisms and judgments from myself and others.

One thing I ask of each of you, before you judge, criticize, discuss, or look differently at a mom or child, consider their struggles. Consider the fact they may be going through something that they do not wear on their sleeve.

Let us spread love & encouragement.

xo- stef

 

To learn more about the Autism Spectrum Disorder, please click here.

 

 

 

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4 Comments

  • Mandi

    I do not ordinarily comment much on social media, not anything too deep anyway, but you need this. My little guy was diagnosed just before he turned three. Before an official diagnosis we were already receiving services from Birth to Three 3 times a week, we graduated to walk in services at school, worked with the most wonderful woman after school with an ABA approach, went to Wheeling Hospital Pediatric center for therapy twice a week, and now we are in a two year pre k. It is the PERFECT fit!!! I will say I know exactly how you feel. I have been there. I live there. I have been mad, I have cried, hell I still cry. Not because there is something wrong with him, but because other people will treat him like there is. I don’t have to tell you he is soooooo smart, his artistic skills are better than any first grade student I’ve ever had, he loves music and dance parties. He loves passionately. He feels everything passionately, as I’m sure your little man does too. When Blake is sad, the look on his face could break your heart but when he smiles it’s the sweetest thing I’ve ever seen. Haircuts are like torture for him, sometimes brushing his teeth is a fight, the dentist is a workout for me to even hold him for an exam. Potty training has been work like I’ve never imagined but he has made soooooo many gains. Is he “behind”? Probably so. Does he care? Nope. We do the grocery store, the restaurants, we’ve attempted church, he goes to school, run errands, play dates, and the playground. I am sure we get some looks, and to say it doesn’t bother me isn’t exactly the truth. What bothers me is the fact that those people would rather cast glances at him or me instead of finding a positive or heaven forbid seek understanding. It breaks my heart when someone looks at him like he’s broken or treats him as if he is. Sure, he squeals. No, he won’t approach you to strike up a conversation. He struggles with entering a play group or knowing how to respond in them, but we won’t stop exposing him to these situations and I’m sure you won’t either. Occasionally let yourself have a glass of wine and a cry but then remind yourself it’s not a curse and there are wayyyyy worse things that he could be “labeled” with. Continue to educate your friends and your family because when people know better, they do better. God chose you to be this special little boys mama bc he knew you were perfect for the job. 💙 You’ll figure out when he needs a sensory break, some alone time, and when to push him harder out of his comfort zone. Share all of the knowledge you gain. Others will come around, and if they don’t, you don’t want them around anyway. You can call or text me anytime. I don’t have all the answers but I’ve walked the path you’re on so I can at least listen and totally understand. 🧩

  • Tasha

    I wish I could give you a big hug! Please know that every emotion and thought you are feeling is absolutely OK! Early intervention & therapy are on your side! You will have bad days, don’t get me wrong. You’ll have lots of them. But you will also have AMAZING days full of achievements & successes. So look at the days, weeks, months & appointments ahead. Look at today! Recognize & celebrate each small step of accomplishment! Take one day at a time. And on those days where it seems you can’t even do that…. take it hour by hour or even moment by moment! Speaking from experience, It will get better. ❤️

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