This year, for his birthday, my oldest son, turning 9, asked for a day at the beach. Well, precisely, he wanted a whole weekend away at a hotel with beach front property. We were blessed to do that last year as a gift from my beautiful aunt. And, it never hurts to ask right? But this year, being on my own for his birthday weekend, we opted for a day on the beach. A day on the beach without autism to be exact.
Lucas is my son with autism. To have a day without him present was necessary, but a hard decision to make. It tears my heart in two to be divided amongst my boys. But the truth is, if I am giving to one, the other is lacking. Of course, these are opportunities for them to learn patience and selflessness. But that’s not what I mean. I mean, autism is all consuming. All the time.
There is no break from autism. Not really. Not in my head, in my thoughts, not in my heart. No time feels safe and at ease. No break. If I give my attention to Lucas and address all of his needs, then for the most part, I keep him regulated, content, and coping well with challenges. But, then I am leaving my other son lacking my help, support and attention. If I give my older son attention, then Lucas can wind up in either full meltdown mode, or full destruction mode, because I wasn’t there to read his warning signs leading up to it. And so it goes on. I give to one, the other lacks. And I rarely feel that I can enjoy my time with both of them together. And I grieve that. And so is life as a special needs parent. I am constantly analyzing, and preventing, and it is tiring.
So, I made the decision to call the agency, to have a paid sitter stay home with Lucas. I let go of anything telling me otherwise. The financial cost. The fear that the sitter might not be able to take on the challenges that come with spending an entire day with a child with autism, one who they haven’t worked with before.
This agency is a special one, designed for families like ours. They staff only behavioral therapists with experience. That means, the person coming knows autism. They know behavior strategies and techniques. They care genuinely about making the experience go with as little stress to the family as possible. You see, it’s not easy or simple to just “leave Lucas with a sitter and get away for a little bit.”
But, nevertheless, for my older son’s birthday, I told myself, this is worth it. We needed this. We needed the time together. We needed to feel a full day without the worry and interruption that we normally deal with. We needed a day without autism. And we got it.
As I stood there on the beach. I acknowledged the peace I felt. I thought of all the freedoms I had without a child in tow with autism. And per usual, anxiety started to tell me how terrible I was, for loving this time without Lucas. And I wondered to myself, how could I let myself feel like he is the opposite of freedom.
And I realized. It’s not the autism that takes my peace. It’s the feeling that I don’t have enough help. I am one person and my kids need two. Two fully involved people. The peace and freedom I was feeling were consequences of me not being pulled in too many different directions at the same time. The feeling I enjoyed, was the not being needed, in ways I am too tired to give, by too many people at once. It was the freedom of having help. It was respite.
You see, my son at home was having a great day. I was getting regular updates. Messages about his potty times and what he did. His meals, his activities, his behaviors. And I was free, because I didn’t have to worry about what would happen to Lucas, while I wasn’t there. It wasn’t all on me, and he was safe and happy.
On the beach, I could really breathe, for the first time in so long. I didn’t have to rush back home. I wasn’t looking at my clock. I didn’t even have one on. I was soaking in the beach; the water, the sunshining sky, feeling the salty air blow comfortingly against my face. I was feeling the water trickle over my feet and through my toes. I was free to feel all this and enjoy it, because I had help. Real help. Help that didn’t require more of me to get it than to receive it. (except financially lol.) Today, I enjoyed watching my oldest son build sand balls, watching him figure out his way with a boogie board, watching him drift his fingertips through sand constructing artwork like only he can. I got to have conversations with him, where my mind wasn’t torn and stuck on other things. Because, I was fully present today. I enjoyed a delicious lunch with good company, without the simultaneous need to restrain the parts of autism that are hardest, in public.
Don’t get me wrong. Omar and I thought of Lucas often. We thought of which seashells he’d like, of how he would have loved to keep going out into the water, fearlessly, without stopping. We thought of how he would have absolutely loved the wild banana boat ride. The same one we were scared to death to fall off of. We acknowledged both the beauty and the restraints that would have coexisted if he were with us. And we planned to come back with him. But this day was for us.
Today was gloriously, phenomenally, awesome.
Respite gave me something with my older son I have often thought was never possible again. I’m going to say it again. Respite matters.
Caregiver burnout is real my friends. Respite is necessary. It will certainly be part of my budgeting from now on. It makes the difference between mental breakdown and exhaustion and relief.
Respite matters. Seek it. Find it. You need it. I need it. And it doesn’t make me selfish or unloving to say it. Respite matters. Today was necessary.
I will definitely be making sacrifices to save the money to do this again more regularly. And, I will ask those closest to me to hold me accountable. Because this is necessary. I will always value the memories, and the lessons I got from today.