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Don’t Mind Me…

Yesterday was Mother’s Day. I personally hate that holiday, for my own personal reasons. I have an amazing mother and love to celebrate her on that day. But after years and years of living through that painful empty feeling on this day as I struggled with infertility, that feeling stayed with me even after the blessings of my two kids. I feel like every day I am reminded of the miracle God did in my body to bless me with Sam and Summer…just like every day before them, I was reminded internally and by my surroundings that I was not a mother. So yeah, in my family, my husband knows I don’t want to make a big deal about it. I prefer we go about that day like any other day.

So like any other weekend, we decided to take the kids to an outside area to run around and enjoy the sunshine. Also, to wear them out, because Lord Jesus, this quarantine with no daycare or help has been killer!

When Sam was younger, people didn’t really seem to notice that he was different. We got looks of course, because he is cute and sometimes they would watch when he flapped his hands rapidly with excitement. But the looks didn’t really become more frequent until he was a 1 1/2 year old that looked like he was 3, and was still being pushed around in a stroller. I understood the looks. Before you are a parent, and even after, you tend to judge and think things like “that kid is way too big for a stroller” or “he should be walking by now” and even “American obesity starts at such a young age.”

What these people failed to realized, is that my son couldn’t walk yet. Not because he was lazy, or because we carried him all the time (ok we did do that, but he’s our baby and you can only carry them for the first few years), but because one health concern related to Fragile X, is low muscle tone. Sam had very low muscle tone from the very beginning. He couldn’t hold on with his arms, or pull himself up with his arms. He had little to no abdominal muscle to sit himself up. In fact, Sam was not able to sit unassisted until he was about 18 months old. He looked like a little prince at daycare, propped up by all these pillows with tons of little baby girls crawling around him and fawning all over him.

So due to his low muscle tone, Sam sat up late, crawled late, and didn’t start walking until he was about 2 years old. But did these strangers know that? No.

It would be easy to get offended and mean-mug someone as they judge my parenting or my child while being ignorant of the whole story. But what does that accomplish? Nothing. I realized that the best way to handle the situation was to simply smile at the stranger as if what I was doing was the most natural thing in the world. And you know? They smiled back about 98% of the time. They still didn’t understand, but something as simple as a smile can make someone open to realizing that maybe they misjudged.

My husband struggles with this a bit more than I do. Now that Sam is older and walks, he has more control of his body, which includes having learned how to throw tantrums out in public. Already, when Sam walks, people look at him because he walks and runs like Woody on Toy Story. Legs kinda flying all over the place and hands in his mouth and in the air while he squeals with glee. I personally think it’s adorable. I mean Phoebe in Friends had it right when she said running like that is freeing, because when Sam does it, he looks free and happy. But just like with Phoebe, people stare and notice that there is something different. Not wrong, but different. Again, I walk along like it is the most normal thing with a ginormous smile on my face, watching my son be so carefree and full of joy.

Derek on the other hand…his protectiveness over Sam can get to him at times. Just yesterday, for Mother’s Day, we were walking around a downtown area in Northern Virginia. Derek and Summer were eating ice cream on a bench, while I walked around with Sam nearby. Other people eating ice-cream of course were watching him, but nothing out of the ordinary. Suddenly, Sam started running toward the large train trailer that was in the middle of the park where other kids were playing. I thought he wanted to get up the stairs on the train and play as well, so I didn’t keep as tight a leash on him. But as Sam got closer to the train, he veered to the right and headed for a black stroller, that was not ours. As I ran to catch him, he started climbing in the stroller and the man who it belonged to started yelling at Sam “No..that’s not yours” as he saw me walk up. His daughter started freaking out like Sam was going to break the stroller and I just smiled and apologized as I attempted to pull Sam away. That’s when the tantrum started.

I mentioned that Sam is also Autistic in earlier posts. Well part of that includes his singular focus on an object or activity that he can not be swayed away from. He isn’t hearing you when you say “that’s not ours” or “not right now.” All he sees is the object of his delight within grasp but he can’t get to it. When he gets distraught over this, his whole body goes limp like a wet piece of spaghetti and he slides right out of your arms to the floor, no matter where you are. It’s kind of impressive. So surrounded by at least 50 other people, Sam started doing this while flapping his hands and wailing.

I don’t always tell people that I meet that Sam is Autistic or has Fragile X, because honestly, it doesn’t define him. It just helps shape some of his personality traits and coping mechanisms. But in this case, the Father of the black stroller seemed extremely uncomfortable so I smiled and said “don’t mind us. My son is autistic and just really likes the stroller.” He smiled back at me, calmed his daughter down, and looked a little embarrassed for how he reacted originally. The man looked like he was debating with himself if he should try to help me calm Sam. When Derek came over to help me, all he saw was the man staring at Sam as Sam had his melt down. He picked up Sam and said “I’m gonna let him calm down in the van” and then walked away.

Later, Derek was venting to me about how annoyed he was at that Dad just staring at Sam, as well as the other people around us. What he didn’t realize is that the Dad was staring because I think he was trying to decide if he should intervene and help me since I obviously couldn’t fully grasp ahold of my very long boy that was not letting me console him. I don’t think he was staring in judgment.

As parents of children that are different, sometimes I feel like we have the tendency to assume that other people are immediately judging them or looking at them like something is wrong with them. But you know, I’ve come to realize that most people just don’t know how to help us or them. It’s natural to turn and look at a loud noise, or at a commotion happening near you. We all hate rubber-neckers on the highway, but find ourselves being one when we pass a crash site. Sometimes, just being open about what the situation is and letting them know that you are ok stops the staring. And usually, they will stand by just in case you need help with something. I can’t tell you how many people have helped me in the airport or at the hospital as I struggle with Sam at times. And every time, I let them know how much I appreciated the help, because hopefully, the next time they see a mom or dad trying to console an inconsolable child or see someone struggling to keep it all together in front of tons of people, hopefully they will offer the same help and support.

We are all in this together. People without children that have different needs may not understand all the struggles we face day in and day out, but that doesn’t mean they aren’t willing to help when they can or that they can’t help us. Everyone is different, and we all have needs. How do we expect others to learn how to help and understand our children’s if we aren’t willing to talk about it and let them help?

Food for thought 🙂

My Loves

Speaking Fluent Non-Verbal

One of the most common questions that Derek and I get when people ask us about Sam, is how we know what he is trying to tell us. Now I think that I am pretty amazing for being able to decode the 2-year-old gibber-english that my daughter speaks on a daily basis in tones ranging from mocking to anger, and sprinkles of happy in between. But with Sam… That is a whole new level of skill. Just kidding. It’s no skill. It’s the worlds longest guessing game.

The question is always so funny to my husband and I because honestly, we have never known what it was like to have Sam directly tell us what he wanted. Since the very beginning, it has been a guessing game with him. Food? Milk? Binky? Word Party? Up? After asking and picking up so many items, we eventually get it right. Or he ends up crying in our arms cause we can’t figure it out.

I think the best way to describe how we live each day with our 3 1/2 non-verbal Sam, is to say imagine your infant never reached certain milestones, and you just kept one foot in the infant phase through the years. Pointing? Nope, not there yet. Sam didn’t learn the pincher grasp until about 6 months ago. His fingers always did the sweep motion to pick something up. Oh, and I don’t count his aimless pointing with his middle finger as pointing. I like to think he secretly is laughing at making us look like a trashy set of parents that thought teaching him that would be funny. Turns out, that’s pretty normal (or so his teachers say to make us feel better).

So he doesn’t point, and he doesn’t nod his head up and down or right or left. He can’t say what he is trying to tell us he wants. When your child was an infant, how did you know what they needed? You went through the mental list in your head right? Eventually, you hit upon the issue and managed to give your child that basic need or want that they had. We live that every day with Sam. His needs and wants are still so simple and basic. He doesn’t need or want much to be happy. Not gonna lie, sometimes this makes me like him more than his sister….kidding….or am I???

Now even though he doesn’t need or want much to be happy, that doesn’t take away the trait he has that keeps him singularly focused on one particular object at certain moments. If he can’t REACH that object….well that’s where the fun begins. Just last week, I noticed Sam sweeping his hands across the tops of the counters, trying to get something. This wasn’t out of the ordinary, Sam does this kind of thing all the time out of boredom, and Derek and I have learned to just keep the counters mostly clear. However this particular day, I watched him get frustrated as his focus stayed on a object I couldn’t see. I knew he was getting frustrated because he had both hands in his mouth, and was scrunching his body together in the center while making a wailing sound. He didn’t try to get me for help, or turn in my direction to get my attention. He stayed in his little world, frustrated that he couldn’t get something he wanted.

I walked over to him and started picking up things to see if it was what he wanted. With my hand on his shoulder, I held up a picture “This?” I said, to which he wailed louder and hit out of my hand. Next, a bag of goldfish; slap. A straw; slap. We did this for a good 45 seconds. Finally, I picked up an light blue colored marker cap. “This?” I repeated. Oh. My. Goodness. Sam started jumping up and down, waving and flapping his hands joyfully, smiling the biggest smile as he reached up for the marker cap. The most unimportant and meaningless item to me, was the only thing that could make him happy in that moment. Because no matter what, Sam would not have lost focus on that cap. He wasn’t going anywhere until he got that cap.

The thing a lot of people don’t seem to understand, is that there is no secret language you have with your non-verbal child when they are still young. Sam is not at that point yet where he will use the Picture Exchange Cards or push buttons to let us know what he wants. I wish it was that easy. If it was that easy, we could ask friends to babysit, or feel comfortable leaving him in the church nursery or the daycare at the gym. But it’s not that easy. It’s still a guessing game. And it takes knowing your child to understand that they are frustrated for a reason. They want so badly to be able to reach or do something for themselves, in their own world, that they don’t really think to ask for help. And when they do ask for help, their cues for asking are unique to them and them alone. Speaking fluent non-verbal, is not a skill you can show someone in a quick “how-to” power point. Because the cues are not always the same. To interact with a non-verbal toddler… you have to start with patience and understanding. The sooner you realize that everything they do is for a reason, the closer you are to trying to speak to them on their level. And when you finally break through, and answer a request or provide for a need or want they have, the joy and overwhelming fulfillment you feel from having a shared experience with them; it’s amazing. And so so worth the frustration and feeling of helplessness.

Moments

Most days, I don’t think about the differences in our family life compared to others.  It’s just the way that it has been for the last 4 years, so I wouldn’t know any differently.  

But then, I have days like today, when I am looking on Amazon at medical bracelets to customize for Sam. A bracelet to let everyone know, that he is Autistic and has Fragile X. So he may not respond or act how you would expect when you ask him something. It’s a fear you know?  That if anything EVER happened to my son, and he was separated from us or his group because he doesn’t pay attention and doesn’t follow or understand commands, that he could wonder off and easily be lost.  And he wouldn’t be able to tell someone he needs help. Since Sam is nonverbal, how else is someone that finds him supposed to understand why my son is not answering their questions; What’s his name?  Is he lost? Where is mommy or daddy?  It’s terrifying.  And it’s a fear that I really never thought that I would have to concern myself with.  I even have to worry about the possibility that a stranger could grab his hand and guide him away, and he wouldn’t put up a fuss because we have had to work with him on following adults that he doesn’t know for therapy.  He doesn’t pay attention.  He lets a hand grab him, as he stays in his own Samuel World, taking in his surroundings, and trying to keep himself calm in overwhelming environments. Those are the moments that it gets to me.  And I want to break down and cry.            

Don’t get me wrong, I would never, ever change anything about my son.  That is not why I am crying.  I’m crying, because those moments are the little reminders that Samuel is going to struggle.  That every thing we take for granted, like saying your name, takes a little more thought and effort for him to be able to do. They remind me he may feel different or isolated.  I don’t want my perfect little boy to feel like there is something wrong with him, like something separates him from the rest of humanity.  And it just makes you want to break down, worrying that the rest of the world won’t see him for the wonderful, joyful, perfect human being that God created him as.

When I have these moments, I have to turn off the computer or my tablet, stop looking at PECs or ideas for how to get my son to learn to communicate, and just take a breath. A few tears may come to my eyes as I take a deep breath and just let myself have a moment. Because honestly, we don’t give ourselves moments, do we? Moments to just sit in the worry and the sadness, because your special child has to work so much harder to communicate and live in an average world. We are so concerned with the routines, the tasks, the never-ending appointments we run through on a daily basis, that we never really LET ourselves have the moments where we sit, and cry for our child and the different world they live in than we do.

When this first started happening to me, Sam was about 2. Yeah, it took me that long. Sam had always been such a HAPPY, loving and affectionate child, that we never considered how he was not making progress in toddler milestones that doctors expected him to make. We knew he had Fragile X since I was pregnant with him, and honestly, the doctors were so adamant that our son would be born unable to function, fully mentally retarded (as they tactlessly said) that they pushed us about 4 times to have an abortion. All because he was going to have a different set of struggles than others. Because it was going to add additional stress to our daily life. As if that meant he was not worthy of life. So when our son was born perfect, strong, and healthy; and when he showed affectionate, laughter, and pure joy almost from the very beginning, we just knew we were blessed and he was perfect, no matter what struggles he would face or how much additional stress it would put on our daily lives. We accepted his weaknesses just as we accepted his strengths. Sam couldn’t crawl, or walk, or talk at the same pace as other children, but he hummed with songs he remembered, and he hit baby drums and toys against tables at the exact beat of songs playing. He was always so quick to laugh instead of cry, and always so affectionate, that we felt confident he would be who he was supposed to be.

It wasn’t until my daughter Summer was born that we started to see what others saw and commented on about Sam. Summer looked us in the eyes as soon as she could, instead of looking toward us. She followed us with her eyes, she mimicked our faces. She had the most adorable scowl for the first 6 months, because I guess I scowled in worry when I looked her over, as all parents do. As she made progress in her development, we started to see just how much Sam was behind. And then it just became overwhelming. Where do you even begin? Speech? Physical therapy? Feeding team? Should we look for special schools? How do I find a good school when I have to break down what Fragile X even is to most people? We had to reach out to so many people, so many doctors and specialist and explain about his genetic disorder, where he stood on development milestones, what kinds of worries we had, that is just became exhausting and depressing. I think we can all agree, that doing continuous screenings and tests and seeing in front of you on paper how much your child is not developing is just completely heartbreaking. Again, not for you as a parent, but because as a parent, you never want anyone, specialist or not, to be able to say that there is anything wrong with your perfect little creation.

Thankfully, I am married to an amazing man. During these moments, when I would feel overwhelmed, or like someone was trying to tell me my son was less than perfect, I had the absolute best support and best friend to turn to. Derek wouldn’t tell me things he didn’t know, he wouldn’t say “everything is going to be ok” when he didn’t know. He would just sit with me, agree with me how much it sucks that our son will struggle, and that he wanted to punch that doctor in the face too when she called Sam retarded. He would just hug me, and agree. And then we would look at pictures of Sam, or watch him playing on the floor, and smile. Simultaneously we would look at each other and agree, that even with the struggles, we wouldn’t change a single thing about him.

We need the moments. We need the down time. Because when we are in those down times, we look at our kids, and they raise us back up. The down times show us the truth of how hard it can be. But they also show us, that our children are warriors…they are fighters….they are special. And they are more than worth the daily fights we battle to give them the best life possible.

Take the moments.