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.

The Great Regression

I knew this wasn’t going to be easy. The goal was to take it day by day. It was not supposed to be this long. This was not supposed to be the new normal.

March was just supposed to bring with it an extended Spring Break and then back to school he would go. The year would continue. Progress would continue. The pit in my stomach would continue to dissipate a little more each day because Nico would thrive a bit more each day.

It is now May and my sweet boy is missing out on so much. He has been isolated from the real world for far too long. For him, being home reading his books (over and over again) is completely normal for him, but that was something that school had really changed up for him and I had welcomed such a healthy change of pace. So much of the Kindergartner that I was seeing in him on the daily is disappearing and what is presenting itself now is eerily too familiar.

Nico is regressing.

I can see it every time I try to play with one of his things. His ability to share has started to wane because he has no one to share with anymore. No peers to interact with daily. No one to hold him accountable and show him how to share other than his parents and it’s just different when it comes from us. School was doing wonders for him in this department. He’s not as focused on what I’m saying or asking him anymore. He responds with a “yes” to basically every question I ask whether it be about reading, math, or writing and before I even finish asking it. He is getting easily frustrated when he makes a mistake or answers something wrong and that is leading to more self-injurious behaviors. Banging his hand on the table in protest is something I am having to combat again. Virtual learning is the furthest from Nico’s comfort zone and it is taking a toll on him…and me.

The meltdowns have become more frequent too. This is extremely jarring for me because it takes me back to our early diagnosis days where we couldn’t go a day without a meltdown. Because he has been without speech therapy, academic instruction, and socialization, his communication is regressing. He is becoming more frustrated again when he can’t find the words to voice why he is upset. This is leading to aggression.

Mother’s Day 2020 left me a bit shaken and scarred…literally. Nico’s meltdown caused him to scratch me pretty badly and that rocked my world. He had not had a meltdown like that in a long time and not only did it last for several minutes, he was aggressive towards me in a way that was completely unrecognizable. My sweet boy is loving and affectionate so I could never truly imagine a world where he would be anything but that. I think that’s why this meltdown affected me so deeply. I went to bed panicked that this quarantine may have sparked a new chapter in Nico’s journey that would cause him to start becoming more aggressive. It’s dramatic to think like that, but there are several children and adults on the severe end of the spectrum and they are physically aggressive to themselves and others daily. My heart breaks for them and their families every time I read one of their stories. That’s the side of Autism which isn’t talked much about in mainstream media, but it’s a serious concern for Autism parents.

Ever since that meltdown I have felt my anxiety levels increase and a sense of hopelessness start to creep in. It has also made me sit and reflect on how I’ve been feeling overall with everything that is going on and I am realizing more and more that I, too, may be regressing. I, honest to God, feel myself losing track of hours and days. I can’t formulate words or thoughts as easily anymore. Baking and cooking have been keeping me sane and working out has been keeping my endorphins somewhat elevated, but any time your child is struggling it affects you 10x harder so, needless to say, the anxiety has felt Herculean. I’m feeling myself losing hope. I know it’s probably because I’m antsy and tired of being cooped up. I’m stressed out because of the current situation, but nevertheless I’m feeling like optimism is slipping away.

I’m seeing so clearly now that Nico continues to have major deficits and it’s scaring the hell out of me. He can’t write anything other than his name. He can read so well—truly can read anything—but when I ask him simple comprehension questions he cannot communicate those answers to me. He can’t sit still for more than two minutes. He’s scripting and stimming nonstop while I try to get him to focus on his schoolwork so I know he is not fully aware of what I am trying to teach him. And, at the end of the day, Nico is not talking to me. We can’t even talk about how he’s feeling being out of school and away from his friends because he simply cannot verbalize his feelings and it breaks my heart. I know my sweet boy misses school but we can’t talk about it because Nico doesn’t communicate functionally and I have no idea if he ever will.

What I’ve learned is that Nico and I aren’t living in a cooperative world. We’re living in parallel worlds, looking through glass at each other. Nico opens a window into his world every now and then and lets me in, but it’s not everyday and it’s not for too long.

I have worked so hard these last five years to fill every inch of myself up with hope and push myself to believe that Nico will be just fine. My husband and I have sacrificed so much and will continue to give (up) everything we can to ensure Nico has the best quality of life, but what if that’s still not enough?

I cringe whenever I allow myself to even utter that question aloud.

Darn you, COVID! We have come too far to fall backwards. I’m too tired. Nico should not have to work twice as hard just to get back to square one. I can’t have the same conversations with his therapists and teachers again about behaviors and goals that he had mastered, but now has to remaster because he has regressed. And I can’t even think about what this “new normal” is going to do to our school system, but, if the CDC has anything to do with it, it will be a nightmare. I understand the rationale for all of these precautionary measures; however, after I read their guidelines for reopening schools in the next school year I almost stroked out. No child should be subjected to an environment like that, but kids like Nico will struggle in all new ways and I cant fathom my son suffering through that regardless of how resilient he is.

I’ve been talking to my other Autism moms and I know I’m not alone. We’re all feeling so defeated right now. And I know that these feelings aren’t just reserved for special needs parents. This pandemic is taking a major toll on all of us parents and our kiddos.

This is hard. There’s no handbook for something like this. I just have to reserve the right to feel sad and grieve. So, today I am going to grieve the childhood my son deserved and is missing out on…and that has everything to do with the pandemic, not Autism.

Ironically, Autism has done a tremendous job of preparing us for social distancing. At the beginning of our journey with Autism, we spent plenty of time at home not wanting to be social for fear of what it might trigger in Nico. So, in this respect, Autism has managed to come through for me and produce a social distancing silver lining amongst all of this regression. It truly does bring about so many unexpected surprises.

Let’s hope better days and good things are coming…

The Power of Friendship

When Nico was diagnosed with Autism, one of my first fears was whether or not he would have friends. I had seen my fair share of children and young adults with Autism as an educator and it broke my heart each time when I would walk into the lunch room and see them eating alone or observe them walking the halls by themselves. I’m sure that some of those students were perfectly content sitting alone. They may have even preferred it and I would tell myself that so as to not needlessly bombard them with unnecessary (and probably embarrassing) attention. But, I couldn’t help but wonder what life had in store for these kids. Would they always traverse through life isolated and separate when they had so much to offer in friendship and love?

Friendship is such a vital part of our lives. None of us can survive this life without at least one friend. Like me, Nico has been beyond blessed with so much family and his first and best friends have been his cousins. My first friends were also my cousins and they truly helped define the best parts of my childhood. To this day, they are on speed text and the first ones with whom I share any milestone or challenge. As I journeyed down my educational path, I learned that best friends weren’t just reserved for blood relatives and the friendships I built during those stages of my life helped me through all of life’s ups and downs. Now, many of those friendships I held dear have migrated to social media as life has changed and shifted, but they remain close to my heart because of the impact they had on me in those moments.

Nico is just beginning his journey into friendship building and for the first few years after his diagnosis I truly believed this journey was going to be fleeting because of his special needs and lack of language. The only comfort I found was that his family was where he found friendship and it would always be unconditional. They would always accept him for who he was. Then when we moved from Chicago to Texas I was stricken with fear all over again because we were leaving the only friends Nico knew. I was scared for myself as well because I, too, was going to have to venture out and find a whole new support system and in a whole new state, mind you. Our family had always been our lifeline and our major friend base.

Aside from our familial friendships, my husband and I found ourselves struggling to keep up our other friendships after Nico was diagnosed because we felt like we could not leave our home, with or without Nico. We always looked forward to the prospect of raising our children alongside our friends’ children, but our everyday normal ended up looking very different than that of our friends and we were limited to what we could do. We reached a place in our friendships where apologizing became the norm because we may have RSVP’d yes to a party, but if Nico was struggling that morning or on the verge of a meltdown we knew he would not survive a party. If we had finally mustered up enough energy to go out to dinner or meet up with friends it never failed that Nico would have a treacherous day and it would send us into a tailspin of stress and exhaustion. This would then cause us to have to cancel plans because all we wanted to do was sleep (and secretly cry in the bathroom) instead.

You learn the true meaning of unconditional friendship when you become a parent, especially a special needs parent. The life you lived pre-kids ceases to exist and any friendships that can survive the “early-parenting sabbatical” are the true and lasting ones; they pick up right where they left off (and with lots of libations)! These friendships are golden because you know you can always count on them to be there no matter what. These friendships are empathetic, forgiving, and fiercely overprotective.

Fast forward two and a half years later to our life in Texas and not only have my husband and I found an amazing community of other Autism families, but these families have become our closest friends. We have built unconditional friendships with these parents. We all “get it” when one of our kids is having a meltdown and a party cancellation must follow. We’re there for each other to celebrate the milestones and there to hold each other for the regressions and plateaus. There is never a worry about anyone showing up to a birthday party because we always show up for each other. I have been forever grateful for the friendships I have forged with these families; it makes me feel so much less alone. Being a special needs parent can be very lonely and isolating if you don’t find others that can relate to what you are going through on the daily.

If you are in need of support, turn to social media. There are so many support groups for Autism. You would be surprised at how powerful a friendship can be even if it’s a virtual one. These sites will provide wonderful supports and resources, as well as reassure you that you are not alone:

1. National Autism Association

2. Autism Speaks

4. MyAutism Team

Having these new friendships has really helped because we have now transitioned into a new world of friendship building with Nico as he has entered elementary school. I was beyond petrified at the beginning of the year that he would stick out like a sore thumb and possibly make zero friends. My vision of having a cool school mom crew to hang out with on the weekends had long dissipated and all I was concerned about was whether or not Nico would find a friend who thought he was as awesome, funny, and sweet as his mom and dad did.

Well, Nico hasn’t just forged one friendship in his Kindergarten class…he has forged several! The students in Nico’s class have demonstrated the absolutely indelible power of friendship. Nico may not be able to tell me their names or share with me all that they did together in school that day, but I know Nico loves being at school because he wakes up happy everyday, excited to go. I have to believe it’s because he can’t wait to see his friends. And, these children are showing Nico what unconditional friendship looks like daily because Nico is not always funny and sweet. Since Nico is still minimally verbal, there are days where he struggles and wants to hit or throw things out of frustration. Sometimes it is directed at his friends, not because he is being malicious, but because he doesn’t have the words to express his disappointment or disapproval. Most children might get upset if another child became physical with them in any sort of way, but not Nico’s friends. They find ways to empathize with him and know that if Nico is displaying these behaviors he is upset about something. They work to find out what is wrong and how they can help.

Did I mention they are six years old??

This first elementary school year for Nico has brought its fair share of triumphs and challenges. I do worry about Nico falling behind academically because of his special needs, but the one saving grace has truly been the friends he has made. I don’t know if Nico will keep all of these friendships throughout his elementary school years. I pray and hope he will retain many and even make some new ones along the way. But what I do know is this…these friendships Nico has built have restored my faith in the power of unconditional friendship and that it isn’t just reserved for adults. It’s alive and thriving in Kindergarten!