I am finding that my life has become a juggling act lately and a new ball is constantly being tossed into the mix without much warning. I suppose this is what you sign up for when you become a (special needs) parent and work full time. I know I am not unique in my circumstances by any means.
But, what I’m finding the most challenging is knowing when to pack up shop and drop the juggling act. There never seems to be a right time to just hit the pause button, and this is where my life as a full-time working, special needs parent tends to go haywire.
It can get lonely being an autism parent, especially when you’re not only raising a child with autism but other little ones too. Play dates are limited, if available at all, outings are a federal project because they require so much prep and so many mental pep talks, date nights don’t exist because it’s too much responsibility to put on someone else, and having people over can seem ideal, but you can’t devote all your attention to your guests when your attention is being demanded by your children. It also doesn’t help when you have an introverted child who is minimally verbal because conversations and interactions are so one-sided. It’s hard to build a connection when you child is living parallel to you and there are few intersections.
Now, I have experienced all of the above at least a few times, but when they are so far and few between, you almost feel safer not attempting them at all. It becomes easier to just stay at home where it’s safe and predictable. Besides, when you’re exhausted all the time from going, going, going you don’t want to do much more than nothing. In turn, I think I have become complacent.
But I have been working so hard to stay motivated and open to venturing out as a family for my children and husband’s sake. That way I don’t feel like all I do is work and parent; I can close my computer, enjoy my beautiful family, and maybe even sneak in a few quiet moments with my husband so we can remember what it feels like to be friends and in love.
So we decided to go to an Autism Art Walk this past weekend near our home. My husband and I were eager to meet others living with autism, and…they have a great cantina where we could get a drink and walk around feeling like we were on a little date together.
What I didn’t expect was that I would have an epiphany of sorts while at this art walk. I looked around at all the artists with their work on display and every single one of them was an autistic adult—some younger than others— sitting side by side with their parents.
I spoke to a few parents and they shared their stories with me. They shared diagnoses, school challenges, proud parent moments, hopes for their child’s future, and the grief they feel for the life they hoped their kids, now adults, would have. I had a mother get emotional talking about her daughter and the sadness she feels when she thinks about her never getting married. That hit me hard because I already know the song I want Nico and I to dance to at his wedding. But then I looked at this young lady who had autism and I immediately saw Nico in her.
I bought a piece of her art, gave the mom a hug, and walked off with a sudden pit in my throat.
These artists had such unique, beautiful work and I could see clearly what they all were the most fascinated with. There was an artist who only built life-size passenger buses. Another who loved to paint butterflies in all different shapes and colors. One young man who loved marine life and made clay pottery with that as the focal point. It made me think of Nico and how he loves books and colorful pipe cleaners, and straws. They all had their favorite things on display. It was so endearing. Some of the artists were able to communicate without prompting and some were quiet unless prompted to engage with us, but all I could think about was how old they were.
I think it was because I have these visions for where Nico will be at these same ages, and what I was realizing was that as much as I want Nico to live an independent life, chances are…I may be seated right beside him for more years than I anticipated. Prompting him to speak and supporting him financially. And although I did feel a pang in my heart, I was also comforted by what I was witnessing all at the same time.
I saw the absolute pride in these parents’ faces when people walked up to admire their children’s art. I saw how they beamed when someone bought something or engaged with their child without apprehension or uncertainty. How elated they were when their children spoke about their artwork and shared their inspiration or something about themselves. We even had a mom ask if we would take a picture with her son after I purchased one of his handmade keychains. Thank goodness I had sunglasses on because I immediately became misty-eyed. I saw so much of myself in her because I am that mom on any given day with my Nico.
My husband and I finished the walk, sipped our drinks, and sat watching our boys enjoy the afternoon. I think we both felt some connection to these families, knowing that we are not alone on this journey, and we pondered what these next years were going to bring us as we raise Nico.
I sat admiring my sweet boy for how content he was while his younger brother, as precious as he is, was sucking every ounce of energy from both my husband and me, and I saw my life for what it was…a marathon, not a sprint.
I have no idea what awaits us at the next mile, but I know we have several to go. There is no guarantee that all we are doing to support Nico now will ensure he can live a life without my husband and me beside him. And although we have our younger son who we definitely have miles to run with still, I see a more typical life for him where he may not need us to take care of him indefinitely. No matter what though, none of this is meant to sprint through because work and other demands are competing for my time.
That means that I have to prep for the long game. Take time to enjoy my boys, big and little, and myself. Not allow for work, outside commitments, stress, and uncertainty to be what I’m constantly juggling. Nico and Max need me fit and healthy, happy and present to withstand this marathon of a life we’re living.
And although I get scared at the thought of Nico finishing his life marathon without his father and me, I want to know that I didn’t sprint any of it when I could be keeping pace right along side my sweet boy. After all, I will always want to be right beside my boys, even if it’s not necessary. That is, after all, our ultimate job as parents; to be there for our children no matter what.