Tag: stimming

Ripple Effect

I woke up today and Nico was staring at me. I’m not sure how long he had been laying there waiting for me to open my eyes, but as soon as our eyes were locked in on each other he said, “Good morning, Mom! Time to get up and face the day!” I swear to you I almost burst into tears, but held it together and just squeezed him tightly and praised him for using his words and starting my morning off on such a high note. The fact that those words came so naturally meant two things: 1. he’s getting better with his verbal communication and 2. he likes when I wake him up with that same exact greeting which is where he got it from…me.

I have really been pinching myself lately because every time I turn around Nico is saying something new and it’s being communicated so naturally. He told me the other day, “I want you to read me this book and then I want goldfish, please.” I swear, I thought I hallucinated. I could not believe my son, the one who I have prayed for daily and feared might never use full sentences, spoke to me like a typical child and without any prompting or coaching from me. He literally just came up to me on the couch with his book and spoke to me like he had been doing this sort of thing all along.

That time I did cry and I grabbed him and hugged him for what felt like, for him at least, an awkwardly long time, but I just could not let that moment pass without letting him know how proud I was of him. However, because Nico is such a literal person he did not like that I cried. It made him anxious, thinking something was wrong with me or that maybe he did something wrong and my Nico is a pleaser so I had to quickly get a grip and lighten the mood otherwise this milestone could’ve turned into a meltdown.

Nico is very in tune with others’ emotions and feelings and wants to make sure that everything is copacetic at all times. It’s one of the many areas of growth I have seen in him, especially since Max has come into our lives and since the pandemic turned his/my world upside down. He sees me on a daily basis manage his little brother, Max’s little tantrums which are totally typical of a thriving toddler, but for Nico it does not seem typical. He doesn’t like to see or hear Max get worked up so he will normally either start competing in raising his volume when Max gets loud (which is so not pleasant and helpful in any way) or he will try to calm Max down by repeating the same phrase over and over, “it’s ok, it’s ok.” Neither have had a high success rate at all so I’m sure he is thrilled when I put on a little episode of Cocomelon—yep, there is no shame in my game—on my phone and distract him with it so I can finish changing his diaper.

So, it came as no surprise, but I was, again, utterly amazed when I learned that while out for date night with my husband Nico came to his grandpa’s rescue. Max was starting to give his grandpa a bit of a hard time and wouldn’t stop fussing and crying. Nico could obviously see that his grandpa was struggling to get Max content so he grabbed his iPad, found a Cocomelon episode and put it on the couch. As soon as Max heard the theme song he immediately stopped crying and it drew his attention to the iPad. Nico didn’t say a word. He just went back to reading his books and doing his own thing.

Nico, being the amazing problem-solver that he is and always observing what is happening around him, knew exactly how to get Max to settle down because he had seen his parents do the same thing before. When my father told me this, I looked over at Nico and praised him for his valiant efforts. He didn’t say a word, but the smile and the quick flapping of his hands let me know he understood that I was proud of him.

This school year has been hard for Nico. I know he is behind academically and will need a lot of work to get caught up come next year. It keeps me up at night just thinking about all the intervention he will continue to need on top of therapy, but then I think to moments like these where he is showing such growth, understanding, and maturity and I feel a bit less anxious.

He’s using more complete sentences daily like, “I want to go to sleep” or “I would like you to sit on the couch, please” and no one is prompting him to say any of it. He’s interacting with Max more and more everyday and he watches how we handle him which I know is helping him better understand how to manage Max too.

It is absolutely true that children learn from what they see and hear. That intrigues me, but also concerns me because with Nico I know he observes and internalizes everything around him. And because he is such a literal child, he doesn’t pick up on sarcasm or the nuances of a situation and that, in turn, can have a ripple effect. Learned behaviors are like ripple effects.

I’ve become more and more aware that Nico has been learning from what he sees and hears for awhile now even if it’s only now just starting to materialize into something WE can see and hear. He has felt my stress and anxiety from all that we experienced in these last 9 months with our house flood just like he feels my joy and elation when I wake him up in the morning and give him a big morning kiss.

I want to know that at the end of the day if this year was a crapshoot academically for him that at least he has learned some other amazing life and social skills from being home with his family. I want to know that each day is filled with teachable moments for him that will create a positive ripple effect in his life just like the ones I’ve seen as of late.

Nico is brilliant in so many facets of his life and I need to believe that all of these moments and experiences he is having, both positive and challenging, are going to help inform his life on several levels—socially, emotionally, and academically. As Nico has grown I have become less fearful of autism and more fascinated by its ambiguity. And although it still seems to carry this polarizing perception, I am feeling more and more compelled to focus on all the wondrous aspects of my Nico’s autistic brain.

At the height of the pandemic last year, I was having such a difficult time seeing Nico regress so I started clambering for anything I could find online that was providing support for autism parents living through the pandemic. I came across an article that truly turned my abysmal outlook on Nico’s autism on its head. I keep this article with its list of positive traits in my phone, my purse, on my computer, and I think I may even print it out and place it on my fridge to continue to remind myself that Nico is a terrific, awe-inspiring kiddo and as his mother, I have an immense responsibility in shaping who he will become. I want his ripple effect to be one that positively impacts the lives of everyone he touches. Thankfully, Nico has a little brother who will allow him to shine as the child who follows the rules and fulfills expectations since Max is busy creating his own ripple effect in our home which is filled with destruction and exhaustion.

When Family Shows Up

This last month has been filled with some really amazing highs and some incredible lows. Such is life, I suppose, but when you’re trying to wade through the tumultuousness of a nationwide pandemic–while raising a child with Autism in the midst of it–the highs just don’t ring as high and the lows leave a more somber, stifling effect. That’s when it’s so absolutely invaluable when family shows up.

I knew celebrating Max’s 1st birthday was not going to be as grand as I always envisioned it to be thanks to COVID, but I was still going to find a way to create memories with him to help document this milestone birthday. I was also struggling a bit with the fact that we were going to have to celebrate it in our temporary house since our beautiful home was in the midst of a lengthy journey of restoration from a summer water damage disaster which upended our lives in more ways than one, especially Nico’s.

And if that wasn’t enough, we were also still reeling from the recent loss of my husband’s grandma/the boys’ sweet Abuelita so we were now prepared for Max’s birthday to be filled with bittersweet emotions. Needless to say, the lows were definitely outpacing the highs. Max’s 1st Birthday had to be the high of all highs so October could avoid being another month to succumb to a case of the “2020s.”

As a result of us being out of our own home for over four months now, Nico has had to adjust to so many new environments and that is such a huge feat for him. Plus, he has really struggled in this new virtual first grade school year as he has traversed through remote learning. There is no sugar coating that. It has been less than ideal and there have been days where I have just cried at the lack of progress I feel he is making because he is not having a typical school year like he did last year. After having such a tremendously successful Kinder year in an inclusion classroom (up until March) we were so hopeful for what elementary school would be like for him. But, COVID has robbed so much from Nico and I have no idea what to expect anymore.

I miss the social interactions Nico had with his classmates. He is already limited to who he actually interacts with typically due to his social-emotional challenges and lack of communication so going to basically zero social interactions with kids his own age (outside of the few children he interacts with at his therapy center) really makes me nervous. His classmates this year truly can’t get to know who Nico is and how engaging he can be. They only get glimpses of him through a sterile Zoom meeting environment. And, since most of those interactions show him stimming, scripting, or having a parent assist him with answering, his classmates are only seeing ONE side of Nico. This has now lead to the curious looks and the lack of “Hi, Nico” from his classmates while other kids in his class exchange pleasantries each morning with each other.

I know Nico may not notice or be aware of it (thankfully), but it resonates loudly and clearly with me and breaks my heart a little more each day. I can’t help but feel like the lows have been taking the lead in our home. However, I try to keep things upbeat in our house with lots of song and dance and hugs and kisses. There is never a lack of affection and although many people believe that children and adults with Autism do not like to be touched and do not display affection or empathy, this is a huge myth! My Nico is extremely loving and affectionate.

So, when our family showed up for Max’s birthday week it lifted our spirits and transformed our house into one of celebration and positivity on almost an existential level!

Our family drove countless hours, despite going through their own journey of grief, to make sure we could ring in Max’s 1st Birthday with a bit more pomp and circumstance like we’re used to when it comes to milestone birthdays. They know how important family is to us, especially Nico, and they showed up! It was probably the best decision for all of us because laughter and joy through tears makes everything so much better.

In those two weeks they were here with us, there was more normalcy in our lives. Nico had friends to exchange morning greetings with because his cousins are his best friends and include him in all they do. They never look at him strangely or exclude him from anything because they don’t understand him. Nor do they assume that because he doesn’t know how to initiate playful interactions with them that he doesn’t want to play with them. His cousins have always found ways to make my son feel included because they learn what Nico values and enjoys and engage him around those things. They go beyond just saying “Hi, Nico” which is what I was settling for just so that he had some sense of social interaction with others.

Inclusion like this is what I miss so much about Nico’s experiences last year in school. And, I know it is what fuels growth in all those with Autism. Nico experienced such progress and had so many positive moments because of the inclusivity that was cultivated in his classroom last year. It was nice to have some of that same inclusivity for Nico in our own home for awhile.

Having family with us made virtual learning feel a bit less tedious, our temporary home feel a bit more like our own home, and gave Nico the boost he needed to get him through a month that had us all craving some good ol’ TLC.

And, as October came to a close and Día de Los Muertos was upon us–that special day of the year where we welcome back the spirits of our lost loved ones into our home–I decided to finally take the time to display an altar. This altar would honor our family and friends who we had lost over the years. I would commit to doing it every year and then something always kept me from bringing it to fruition.

But, this year I needed to do it for my own spiritual healing. I needed to do it for my own emotional well-being too. I also felt my Nico needed a bit more family enveloping him with as much love as possible this year; this year has been a doozy for us.

It was the best way to keep family around us right now when we need them the most. With the holidays approaching, its hard to think about having to socially distance from those we need, especially when COVID is spiking again, flu season is upon us, and Election Day is just around the corner (and all that that day could incite).

Family, for me, has always been my top priority and I have a husband who mirrors those same values. And, when raising a child with special needs, you really do need family to lean on because it is HARD. To manage the pitfalls of life while staying controlled for a child who could meltdown at any moment when all you want to do is meltdown yourself…that’s HARD. This is when family shows up and takes on the meltdown, your child’s or yours, and it is life-(saving)changing.

You can be vulnerable with family and know that just like they are there on the best days, they are also there on your worst. We, special needs parents, must take care of ourselves because there are not many others who can care for our children. These are tough times and it is easy to become worn out and we don’t have the luxury of getting sick because no one can take care of our children better than we can….except maybe our family.

Make time for family right now. Especially now.

All I know is that you make time for the people that matter in your life. Despite everything, you show up. Family does this. And, I have to trust and believe that they keep showing up even if it is only in the stillness of our hearts or with a passing flutter of a butterfly’s wing. With every memory they evoke in us, family is forever.

Music Can Move Mountains

2020 has truly thrown me some curve balls and the year isn’t even over yet. I feel like once the summer came the days blurred together and I haven’t been able to catch my breath or tell one day from the next. I’m sure I’m not alone. This year seems like it will go down in infamy as the most treacherous year for all people, places, things, and animals…yep, basically every noun you can think of.

And speaking of nouns, I can’t believe we are into our fourth week of Nico’s school year and we’re all still in one piece. Nico is now a first grader and is also a 100% remote learner due to this God-awful pandemic we are living through. This is not the ideal setting for him and all summer long I was a ball of nerves thinking about how hard this was going to be for him and me. He hates talking to anyone on FaceTime so I couldn’t even imagine how he would manage working with his teachers on the daily through a computer screen. The only thing he looks forward to and understands clearly is the “Leave Meeting” button so you can see what a joy it is to work through five live Zoom lessons with him a day when he is just not into interacting with others virtually.

And if that wasn’t enough to keep me up at night, our first floor flooded, due to a water pipe bursting in our home, when we were hundreds of miles away visiting family so we ushered in Nico’s first day of the virtual school year from a hotel room and have since moved into a temporary home while ours begins the looooooong process of being rebuilt. Needless to say, Nico has been less than pleased with all of these changes and who can blame him? I’m barely hanging on myself.

I don’t think either of us has been in the best of moods for weeks. I can always tell with Nico because he gets over-emotional and weepy at the drop of a hat and will cry off and on all day. Or, he can get really frustrated and just want to throw things or become a bit aggressive with me. I feel like even I have been a roller coaster of emotions as I come to terms with being displaced from my home for several months in the middle of a pandemic during an unprecedented school year with a special needs child and 10 month old who would literally crawl back inside me if I let him.

I have been working tirelessly to stay optimistic and upbeat, but it has been extremely trying for me and I know Nico can sense my dismay and distress. Individuals with Autism are actually quite empathetic and feel emotions very deeply and Nico always knows when I am struggling or stressed or sad. And because he has picked up on my stress and discontent, I have noticed that he is struggling more.

Now, music has always been an incredible outlet for me to relieve my stress. I would often play my favorite songs on repeat growing up to help me regain my composure or release my stress and anxiety. Singing is also a favorite pastime of mine so, whenever I can, I will sing to help elevate my mood. Nico has always enjoyed music as well. From a very young age, he came alive with music. He loved when I would sing to him; it would actually help regulate him when he was getting over-stimulated so I would try and incorporate song into many of our daily activities.

As he has grown, he has become more selective with the music that keeps his attention and lightens his mood. He won’t let me sing the same songs I would sing to him when he was small anymore so I have to constantly find new ones to introduce him to. And, he has quite the eclectic musical palette too, which is kind of cool because he chooses music based on movies he loves or songs he hears that make him want to dance. He will then request these songs by telling me the name of the movie or by choosing a word or phrase from the song and repeating it over and over until I pick up on what he is saying.

He is quite my little problem-solver. He knows he has limited language so he always chooses his words strategically.

Well, today we started our fourth week of virtual learning and it was a marvelous Monday as we got in the car to head to the center, although I know neither of us was feeling quite marvelous. It’s just so hard to shake off a funk once you’re in it. But, as I drove Nico to his therapy center where he gets both his therapy and support with his virtual school day, I felt we needed something to boost our spirits so I put on the radio.

That’s when something really cool…and maybe even serendipitous happened! My car’s Bluetooth connected to my phone and the first song to play was a track from the movie, The Peanuts Movie which is a fave of Nico’s. And the song could not have had a better message for both Nico and me! It was a song by Meghan Trainor titled, “Good to Be Alive” and it always gets Nico moving and smiling. He must’ve really been needing to hear this song too because he was actually singing along with some of the lyrics. I could hardly contain my excitement when I heard him! My son, who uses very little language unless to request something or if prompted, was singing along to a song!

This was enough to catapult me out of my current funk for sure! But then, as musical fate would have it, my own anthem literally came on next without any prompting from me. Neither of these songs are in a playlist together nor did I intentionally connect my Bluetooth to play this specific song, but now we were listening to a song that I had to believe was sending me a message as well. It’s a song by Jess Glynne titled, “Hold My Hand” and it’s one I listened to nonstop the year it came out. The year was 2015 and it was the same year Nico was diagnosed with Autism. I remember playing this song over and over again and feeling so alone because I needed my Mother more than anything to just be there to “hold my hand.”

Well, here it was again, saving the day and lifting my spirits. I felt like there was almost a little bit of divine intervention happening in the car this morning as the song played, but what made it absolutely outstanding was to look in my rear view mirror and see Nico bopping his head and moving his hands to the beat so succinctly. I couldn’t help, but belt it out for him and then play it again before we got to the center so we could have just a bit more musical magic help bring us back to life.

This year has not been the best for us. It started in March with COVID and slowly inched it’s way to awful with my furlough in April and then became downright abysmal by July with our house flooding so I am just thankful we are standing upright in Week 4 of the school year. And because this year has sucked the life out of me, there were no First Day of School pics taken, no official posts to ring in this school year. I am behind on doctors’ appointments and first day of school haircuts. And, I have little over a month to put something resembling a 1st birthday party together for my precious Maximo while still keeping it COVID-friendly (talk about a contradiction in terms), but I’m giving myself a pass on having it all together this year. After all, my motto this year has been: “Welcome to the Sh$& Show! Compliments of 2020!” But, after having such an uplifting start to the day today, I feel like hopefully things will start looking up for us.

So, today was the START of our NEW school year! It may still be a bumpy one. Nico may struggle and resist, and regression may still occur to some degree, but my sweet boy will always have his music and our car rides to the center where we can “center” ourselves around the music that has become our mantra. Words are so important for both Nico and me. I love to write and Nico loves to read. And the lyrics we listened to today had a message that spoke to both of us, and that is…everything is going to be ok.

We got this!

We have each other and it’s good to be alive!

Truer words have never been spoken. I have Nico’s hand and he has mine and we are so lucky to be healthy and happy and able to wake up to another day together as a family! Here’s to this new school year for my sweet boy!