Our daughter has made incredible strides in the 2 years since her diagnosis of Autism Spectrum Disorder. She has gone from a girl who was throwing hour-long meltdowns daily (plus numerous smaller ones), to now the longest meltdowns are no more than thirty minutes long, and the bad meltdowns only happen maybe once a week. There are still plenty of smaller ones of course, but even those are getting less frequent.
She has gone from a child who more or less lived in her own world, never really noticing if we entered a room, who was content to be upstairs in the toy room by herself for hours, rarely engaging us, to a child who constantly seeks us out. Who shares excitement and asks us to join in. Who loves to have others play with her. Who loves to share things with us – if she sees something funny on tv, she will grab our face and turn it to the tv, to make sure that we are watching.
She has gone from a child who had no pretend play – when she played trains, cars, dolls, anything – they never made a sound, and she didn’t pretend with them, she just arranged and moved things around. To now, she is a child with a much better imagination. Oh she still scripts a lot (which others don’t realize she is doing, but we know), but she truly has her own imagination now, too, and let me just say sometimes it’s a doozy! It is a joy to listen to her play now.
She has gone from a child who would not accept our comfort, or affection, who never would let us cuddle her, to a girl who asks for bedtime snuggles every night. Who is seeking us out for comfort – oh granted, there are still many times when she’s upset that she needs to be alone, but she is coming to us more and more. She will come snuggle on the couch and actually pick our arm up and wrap it around her. It makes my heart burst with happiness. She has lots of problem areas that still need to be worked on, but she has made huge strides.
She has made strides in the area of social skills as well. Even just a year ago,she had zero interest in peers. She would play with adults and older children, but forget about peers and younger children. She had no interest in them at all – she would not look at them, talk to them, try to engage them, and certainly didn’t care if they tried to engage her.
Today, our daughter is just a few weeks shy of turning 5, and she is ever-emerging from her shell. Today, more and more, she is trying to engage peers, to interact with them, to talk to them, play with them. And on one hand, I am so happy, and so proud of her.
Just a couple weeks ago at gymnastics class, she and another little girl engaged in a teddy bear fight, laughing together as their bears “wrestled”. And my heart soared, and I looked around, feeling like everyone was missing the small miracle that was happening right in front of their eyes, thinking they should be clapping and cheering. But of course they couldn’t understand just how momentous that moment was for me – to see my daughter actually initiate and engage interaction with a non-familiar child like that.
And on the other hand, it is more painful than I ever could have imagined.
As our daughter emerges from her shell and attempts to interact with peers, her social deficits are becoming ever more evident. Our psychologist warned us this would happen – that as she (and her peers) got older, the social deficits would become more evident, as her peers would progress at a rate much faster than she would, especially once they reached school-age. He was right.
Over the last few months I’ve really noticed a shift, her friend and other peers have all started Kindergarten-readiness classes. There’s been a change as even now, at this young age, attitudes are changing, little girls are growing up, and they’re growing away from our daughter.
As her peers mature, get older, make friends, start that “cliquish” stage that comes with school, our daughter is slowly becoming “that” girl – the awkward girl, the girl that acts funny, different from them, the girl that fixates on something, who throws herself down on the floor in a sobbing meltdown, curled up in the fetal position in dance class. Even at this young age, her peers are getting old enough to know that something is different, but they are too young to understand – they don’t know why she acts that way, so they ignore her, or they whisper, they stare, they point, some might even make comments or tease her. Yes, even four and five year olds know how to tease another child these days. And while Ashley is thus far thankfully unaware of most of it, I am not. I hear. I see. And thus, I hurt for her.
Now don’t get me wrong, our daughter has some great, successful attempts at interacting with peers like the one I mentioned above. But for now, those are the rarer occasions, and overall, her attempts are awkward and sometimes downright painful to watch. Our rough and tumble daughter, who is loud, boisterous and unafraid of anything – is normally shy and unsure of herself around peers. She circles on the outside, unsure of what to do, what to say, how to join in. I try to gently encourage her, give her a nudge, “Just go up and say hello, introduce yourself.” And she gets a moment of insecure silliness, as she giggles, perhaps gives her arms the quick little jerky move that I have learned to recognize as her version of arm-flapping – something she does only when she is extremely happy, or in her silly-nervous mode, and she brings her arms close, her hands to her face, and says, “I don’t know how.”
So I walk her through the process, and then give her a nudge (sometimes physically!) and she shyly will walk up to them, body tense with nerves, making a sound that is kind of half-giggling, but I know is her, “I’m feeling unsure” noise, and will stand there, waiting. She might say, “Hi, I, Ashley,” but no more, as she doesn’t understand the give and take of social conversations among peers. Once she has said her introduction, she may stand there for a minute, and then will hide her face and come running back to me, still giggling nervously. And I praise her for making that effort. Sometimes she’s content with that, she’s content with having just gone up to them and saying hello, and coming back to me. And I don’t push her for more. End on a good note, I always say.
And sure, she looks shy, silly and awkward, but I’m okay with those attempts. They aren’t the ones that upset me, for I look at each of those as learning experiences. We can build on those.
But then, there are the other times.
The times when she goes up to someone, and she is so desperately awkward that they ignore her and walk away, and she comes back to me crushed, asking, “Why won’t she talk to me?” The times that she goes up to a group that is playing, and she doesn’t know how to join in, so she comes back to me wondering why they won’t play with her. And the sad thing is – they probably would have, if she knew how to approach them.
The times like last night. We went to a movie night at the local school, and our friends were there. Our son of course immediately ran off with the boys, a group of them sitting together, laughing, joking and playing. Despite having never met some of them before, he interacted with them with an ease that I envied on behalf of his sister.
Our daughter sat sitting with her friend, and all was well for awhile. Until another little girl came over to join them. Now granted, we all know that with children three is a crowd at the best of times – but when you throw autism into the mix? It’s a disaster. The two girls chittered and chattered and giggled. They shared sleeping bags and had fun. And our daughter, so unsure of herself, so uncomfortable with peers that she doesn’t know, retreated. She wanted to join in, she would try at my encouragement, she would go sit with them, but then just sit there awkwardly, not saying anything. And they would tolerate it for a few minutes, but then move on to something else. Over and over again. Each time she would retreat to her chair, and curl herself up in the fetal position, hiding her face, hurt and not understanding. And each time, another piece of my heart broke, watching the whole scenario.
My daughter is strong – emotionally and physically. I think she is one of the strongest children I have ever met – she has been through so much in her short life. She is brave, afraid of nothing. She is stoic and rarely cries. But that night – she cried.
The third time she retreated to the chair, she lifted her head for just a moment and looked at me, and there I saw it – eyes filled with tears, spilling down her cheeks. Not sobbing, not making a sound, just crying silently – the worst kind of crying. Silent tears are reserved for the deepest pain. Not even five, and crying silently because of the pain of not being able to join in. Or wanting to, and not knowing how.
And for that moment – I couldn’t breathe, for the pain I felt for my daughter was so physical. I picked up my girl, still curled in the fetal position and held her as she cried. We rocked. And I cried silently right along with her. I was so glad that we have progressed to the place that she is able to draw comfort from me, because it used to kill me to be unable to comfort her when she was hurting, to be constantly pushed away. I can’t fix this Autism, this Asperger’s – this, whatever they want to call it. But at least I can hold her while she cries, whisper to her over and over that I love her, that she is perfect in my eyes, and that she is a wonderful girl.
These are the moments of heart break that these children, all children with special needs, go through. These are the moments that we, the parents, have to live through. It will get better – I know this, but sometimes, at times like last night, it’s hard to see that. This part of our journey, this difficulty, this struggle, is new to me. The cut is new, fresh and it’s still stinging. And when I think I’m getting used to it, and it’s starting to heal over – another situation comes along and rips it right open again.
But it will get better. Because my daughter is strong, and so am I. We are not quitters. We are fighters. I will spend every day with my daughter, teaching her, working with her on her social skills. We’ll read books, we’ll talk about situations, we’ll act them out, we’ll use programs, we’ll use flashcards and games, we’ll enroll her in gymnastics and soccer or dance, and no matter how hard they may be for both of us – I’ll make play dates.
It is through our failures that we learn, that we grow. Each time we falter, we will pick ourselves up, dust ourselves off and get back up again. And each time we get a little bit further. My father in law is a cowboy at heart, a huge rodeo fan. And he loves the expression, “Cowboy up!” The expression has a technical meaning of, “Making a determined effort to overcome a formidable obstacle.” In a looser term, it means to keep trying no matter how hard it may be. We have all long remarked that our daughter is a cowgirl at heart – strong, determined, and nothing keeps her down. I like to think I have a bit of that myself.
And so last night, we cried together. And then, the tears passed, we brushed ourselves off, and we tried again. I whispered instructions, words of encouragement – and she approached them again. And later, when the three of them sat huddled together, the two girls laughing with Ashley as she showed them a popcorn trick and they all made silly faces together, she looked at me. My beautiful, strong daughter looked at me with a smile on her face, all traces of tears gone, and she whispered, so happy, so proud of herself, “Look, Mommy. They’re laughing! We’re having fun!” Cowgirl up, baby. Cowgirl up.