So how am I? That’s a question I haven’t been asked in a very long time, specially by a total stranger. I’m surrounded by people who I grew up calling “family”, the same people that completely disappeared when autism entered our lives. The people that should be the ones by my side and interestingly were the first to walk away. They don’t call, don’t ask, don’t visit, they’ve become complete strangers to me. They don’t know my son, don’t care to ask about my son, let alone see my son. If only those people knew everything I’ve been through, if only they could walk a day in my shoes. Only then would they feel the pain, the struggles, the tears, the blood, the screaming, the kicking, the dirty looks I got from people when Alex had tantrums in public, the disappointment when something stopped working, the sadness of not hearing your child’s voice for over 5 years, the pain I felt watching him struggle to do things other kids do without even thinking about it. If they could see all the work I’ve done, the hours of research, the amount of work that went into his meals, all the supplements, the testing, the therapies, the doctor visits. If only they knew the thousands of dollars we’ve spent on things we didn’t even know could/would work. I they could have been up for over 2 years with us at night because Alex couldn’t sleep. If only they felt the pain I felt when I laid in bed listening to Alex scream because, well I don’t why, I don’t know because Alex wasn’t talking, he couldn’t tell me why he couldn’t sleep. Was he in pain? Was he uncomfortable? I didn’t know because my son couldn’t speak, he knew what was happening to him but couldn’t tell me. If these people who I grew up calling “family” only cared enough to get to know my son, they would realize what an amazing child he is. Sadly they don’t care, not one bit.
They’ve never seen me crying in a hallway after failed IEP meetings, to hold Alex down so he could have blood work done, outside speech therapy rooms, outside Alex’s room during ABA therapy, they’ve never seen me cry because they’ve never been here. They won’t see me because they’ll never come.
If only they knew how hectic a shopping trip can me for me if its too loud for Alex, if there’s too many people there, too many things going on around him. If they could see the death stares I get because Alex wants to sit inside the cart while I shop. I think I know what those people are thinking: Why is that big kid sitting in that cart? He should be walking, that woman is crazy for pushing him around like that?
Last Friday while we watched Despicable Me 2 a woman in the row in front of us gave us the dirtiest looks I’ve ever gotten since Alex was diagnosed. He was mad because my son was talking, ain’t that a BITCH. The very thing I’ve been praying for, for so long was making this woman loose her mind. She kept looking back at us, covering her ears, looking back, if only those people I used to call family could have felt what I felt that night. That bitter old woman was trying to take away a great moment from me and my son, a moment I wish I could have lived forever. My Alex was talking so much during that movie, he was happy and so excited, that woman just like “them” have no idea how much every word that comes out of his mouth means to me. But again how would they know when they’ve never been here.
Today on our way to our first swimming lesson (which I was very hopeful for I might add) I prayed that Alex would cooperate. Alex isn’t a fan of water which is good and bad. Bad because showers aren’t his favorite and stressful and good because I believe it’s a child with autism’s worst enemy. Why do I say that, well just this summer we’ve lost about 10 kids who have wondered away which led to a drowning death. So what would they think if they knew swimming lessons aren’t a luxury or just a recreational activity for us? What would they say if they knew this could save my child’s life if he ever wonders away AGAIN. Would they care? Or would they continue with their life just as they did when they heard my son had autism?
Back to today’s swimmingly lesson: So we get to the community center and its me and the three kids against autism. I knew autism would be the only reason why this would be a horrible experience. I debated going but I’ll be damned if i let autism run our lives. We get there and as we walked towards the pools I can feel my feet shaking, could it be that I’m carrying Santi, carrying a bag with all their clothes and holding both kids hands, or the fear of watching Alex’s reaction when he saw the pool? Or both? As soon as Alex saw the pool the meltdown was inevitable, my heart broke when I saw the fear in him, the panic in his eyes, if only “they” could have seen it. But would that even matter to them? I tried my best to hold it together, I stayed firm with Alex and was able to get him into the pool, the fear in his face will stay with me forever, that look of desperation, the screaming pleading to be out of the water. Julie tried convincing Alex that everything was ok too but Alex wasn’t listening. Alex wanted nothing to do with swimming. Alex doesn’t know how many hopes I had for today, neither did “they” because they have no idea where we were today, that we’ve moved, or where we live.
Julie had her swimming lesson and somehow I was able to make it out of the pool tears free. I shook as I walked towards the entrance, I stopped at the counter to explain to them why the lessons wouldn’t work for us. Julie was soaking wet only covered in her towel as I couldn’t help get them dressed because Alex was in such a bad state. All this time I’ve had Santi strapped to me, there’s only so much I can do while carrying him. I struggled to bend over to help Julie put dry clothes on, put Alex’s shoes on at the same time. Santi hanging off of me almost falling out of his moby wrap when suddenly something beautiful happened. An elderly woman walking with the assistance of her walker offered me her help. This elderly woman who warned me her balance wasn’t too good got on her knees and helped Julie put her clothes on. A woman who didn’t know me or seen me before cared enough to help me. She saw me and stopped to help me, if she only knew how her actions made me feel. When I felt so defeated and alone she picked me up. The two women behind the counter were so compassionate too, they expressed how sorry they were and refunded the portion that was for Alex’s swimming lessons. I had them keep Julie’s portion in case I was able to find someone to help me so Julie can continue to take lessons. I left that place as fast as I could, heart broken, defeated but also knowing there’s still good people in the world, bittersweet you could say.
Once home I realized I was alone, the only 2 people who do help have their own lives too. My mother works and my sister does too, sadly I won’t be able to take Julie back to swimming lessons until Alex is back in school. I picked up the phone to call the community center back and tell them I wasn’t able to find help, that I needed to cancel Julie’s lessons. The woman on the other side was so sweet, I could feel the compassion in her voice, she asked me something I had not been asked in so long, something “they” have never cared to ask, she said with one of the sweetest voices I’ve ever heard “how are you mom, are you ok?”. And that’s the moment I lost it, I started crying to this woman, a woman who told me she was sending her heart to me, that she was very sorry for everything I had to live through everyday, a woman who has never seen me yet cared enough to ask me how I was. A woman with compassion for others, a woman I will never forget.
And to answer her question: I’m not ok, I’m mad, I have lost to autism today and I can’t stop crying. I cry because there’s more than 30 people within minutes away who I grew up with who don’t care to know how we are. Who when once asked to donate $10 a month to help pay for Alex’s expenses back in 2009 when I was pregnant with Julie and Luis was laid off found every excuse possible of why that was impossible for them. Yet if there’s a party they don’t think twice about spending hundreds of dollars on alcohol but wouldn’t have the heart to help their nephew, an innocent child with autism, a child who is part of their family. That is sad, very, very sad.
Well today is the last time I shed tears for these people, today I’ll cry as much as I need to and never again. They will never get to cherish the moments and miracles I witness daily. They will never get to know the joy of hearing Alex’s voice, the joy of getting eye contact from him, the joy of being in his life. They will also not be at his recovery party, what for, they wouldn’t understand the meaning of it anyways. To answer that sweet woman’s question one more time, I am not ok but I know one day I will be.