The Condron Family | Connecticut | Rebecca Lynne Photography
This beautiful Spectrum Inspired Session was documented by Rebecca Lynne Photography.
Desmond, age 3,
"Since birth, I have jokingly called Desi "our little old man". Not only was he born super wrinkly, but he's the quiet soul - deep and thoughtful, with an extremely expressive face and very easily warms up to new people. He's a people pleaser - nonverbal, but able use body language and looks to convey so much. He doesn't like to be messy; he loves nothing more than a pile of books and a good snuggle against his favorite people. He's really starting to develop a sense of humor, and becoming a little trickster. The truth is everyone who meets Desi falls a bit in love with him."
Words by Desmond's mother, Lauren:
Let me preface what I’m about to write with this: my children are pieces of my heart, my soul, my purpose. I love them beyond measure – in the kind of way I didn’t understand until I became a mother myself. In the way you love the best surprise you’ve ever been given, when I became pregnant with my daughter unexpectedly. In the way you love the best reward you’ve ever been given, when we finally conceived my son after fertility treatment.
I love them to the moon and back – the things that intrinsically make them what they are. Their humor, their laughs, their creativity and curiosity, their hugs and kisses and snuggles at the end of long days.
My son – it’s hard to explain. There is so much research being done, so much to be learned – but at the beginning of our story, the story of Desi and me – his autism was not a character. He was the sweetest little old man of a baby – happy, gummy smiles, obsessed with his sister and playing catch and any food that crossed his little toothy and drool soaked path. He was my great sleeper, my garbage disposal eater. He loved to belly laugh, and was so proud to shout out “sissy”, “mama”, “dada”, and see our smiles. He loved everyone, was curious about everything, and wanted every inch of the world that was within his chubby little hands.
Around 18 months, maybe a little earlier – I watched, like a weird, bizarre car crash – as the little boy I knew, the boy I had memorized every inch of, slowly disintegrated. Gone was the little boy who loved to chatter – his voice fell silent, slowly over time, till all words were gone. My happy little foodie slowly treated most foods like plates of arsenic – and would only eat two items. His eye contact, his connection, his funny little ways slowly spun out into spinning in corners, hand flapping at shadows, and obsessions with inanimate objects. Changes in his day, to his routine, scared and upset him – instead of swinging his arms out from my hips, curious about everything, he now sunk deeper into my carry, afraid of the world.
As his world became smaller and scarier for him, my heart shattered.
As an occupational therapist who has worked with a huge array of children with special needs – I knew what I was looking at. I knew it, knew its face, knew what it does to children and their families in the various shades it lives, and I prayed I was wrong, prayed for answers, prayed to whatever higher power was listening. Through all this praying, I tried to hold on to him even tighter, and like sand in my hands, he just seemed to slip away further. The pediatrician said "lets give it time" with that knowing look; my husband said "its just a phase, terrible twos are coming, right?" But as a therapist and mom, I knew. I didn't want to say its name, but I knew.
When Birth to Three saw him, they acknowledged my fears and saw what I saw. When he was officially evaluated, they validated what I knew in my heart. My son has autism.
If you’re reading this and thinking “holy hell that must have been a nightmare” – you’d be right. It was my own private nightmare. To watch his peers – my niece, only a few months older than him, neck and neck in development – slowly surpass him, the gap widening. To watch all he had learned become lost, and rapidly. To lose who I knew as my son, and have this shadow fall over him, turn him into a stranger, change everything. I was panicked. I was afraid. I was heartbroken. I was grief stricken.
I was determined. My son was standing on the edge of some invisible cliff, and there was no way, no way in hell, I was going to let him fall.
We are beyond blessed for the resources we received. Birth to Three was, frankly, incredible. They came in and dug deep from day one – when I asked to immerse this kid in as much therapy as possible, they answered the call. Five women who stepped into our lives, our home, and married my previous knowledge of autism and my own deep understanding of my son with the best therapy any family could ask for. They gave us the tools we needed for home, and the confidence to transition to the next hurdle - school.
Desi started preschool in the Fall of 2017, and I was petrified. Scared the gains he had made would be lost because of anxiety, scared they wouldn't take the time to learn his personality, scared he'd continue his indifference to other children and be a loner - heck, I was scared of the bus we planned to send him on, because I knew saying goodbye at the school doors would be too hard for him.
And here we are - months later - on the other side. I can't even believe it. My son has made amazing gains since his diagnosis, since autism tried to pull him into an abyss, and we refused to let him fall.
He no longer deeply fears strangers, and enjoys going to new places – that bus I was so scared of? He climbed on, backpack in hand, and waved goodbye fearlessly. I cried more than he did. That bus, that school I was so scared of? Its the same one he eagerly clamors to every morning at the end of our driveway, and misses on snowdays.
Desi recognizes and enjoys seeing his friends at school, but even more importantly, his family - even aunts and uncles and cousins. He even enjoys the occasional sand and dirt between his toes. He just learned to clap hands, he is attempting to sing small pieces of his favorite songs - he remains essentially nonverbal, however has started utilizing a speech board to make his needs known – he loves books, and puzzles, no longer mouths toys like an infant, loves a good car ride, and lets me wash his hair happily at bath time. We end each day rocking in each others arms, usually to “The Rainbow Connection”, or the video clip from Moana, “I Know Who You Are”.
Rainbow Connection is one that came on randomly in the shuffle of kid’s songs one night, and when I listened to portions of the lyrics, it felt like it was being sung just to us.
“Have you been half asleep and have you heard voices?
I've heard them calling my name.
Is this the sweet sound that calls the young sailors.
The voice might be one and the same.
I've heard it too many times to ignore it.
It's something that I'm supposed to be.
Someday we'll find it, the rainbow connection, the lovers, the dreamers and me…”
It makes me cry, depending on my mood. Other times, it connects me to this “rainbow” – this autism, this spectrum disorder that has rooted into my son, and we live with forevermore.
His autism, in general, has never, for me, been something I smile and say “you know what, it’s just the thing that makes him who he is, and it’s really okay”. Its never been okay for me.
It is not okay that my son has to struggle to enjoy the simple things that others his age love, and engage with, and can happily explore. It is not okay that he is afraid of things that should bring him joy, that he cannot change his routines because of this fear and discomfort, and that sometimes, it means he completely checks out because of it. It is not okay that we live in fear of the day the world lets him know something is “wrong” with him, because the world, and “typical” kids, and society in general can be a harsh and cruel place. He has no idea he is different yet – and I know someday the world may change that, and I can only absorb it for him so much. His classroom is a mix of peers with a variety of issues, a beautiful cornucopia of different - but someday that may not be the case, and I worry when he finds himself in less supportive environments.
It is not okay that this thing, this autism, may rob my son of so many life experiences – speaking with comfort, using his voice, working with confidence, marriage, children. Of course this is an extreme, but that extreme could very well be our reality - we just simply don’t know yet. It is not okay that his future could be more narrow then his sisters, by the sheer nature of his needs. It is not okay that on the hard days, the really tough ones, I watch a movie with a scene of graduation, or a young man riding the train alone, or I see a little one so proud to be potty trained, and I wonder – will that be him? When? How?
It is not okay that my daughter has to be reassured that she should treat him as her brother, and not try to be his caregiver – that she struggles to play with him and connect, and that he went from adoring her and being her shadow to working on acknowledging her at all.
It is not okay that autism dents a marriage in a way no one talks about, or confesses when you ask what it’s like – that you will be on the same page sometimes, other times different ones, that good cop bad cop happens, that trying to work full time and pay bills and manage debt and get ahead and balance a home living with autism is almost beyond handling for any human being, even with a partner. That sometimes you will be so busy and wrapped up and deep in the needs of your special needs child that you forget what your other child needs as well – or your spouse – or even yourself. That you will need to work to keep your sense of self, because it’s beyond easy to make your child’s life your only mission without any thought of anything else when you quite literally have to be their voice.
When people ask “Hey how are you guys doing?”, sometimes I imagine what it must be like for those dealing with grief and loss – it is its own grief, in a way. People want the simple “Aw we are all doing good, you know.” And when they drop their tone, and say “…and how about your little guy? He’s good?” they want “He’s doing really great! Just one day at a time, you know.”
When you have a loss, when you are grieving, when you are dealing with special needs – people don’t want the real truth – that every day is hard. Varying degrees of hard – sometimes only just a little bit, sometimes the absolutely hardest – but every day has a degree of hard beyond the norm for just kids and parenting. We are so blessed that he has more great days then tough right now, but that came after a lot of really, really hard ones.
When you first get the diagnosis, people tell you “he’ll be the one to beat this mama – we are all rooting for him!”. For me, my peace came when I realized this isn’t a thing to beat – it isn’t something we will ever cure. If I think of it in terms of a thing to conquer, then it becomes my white whale, the great stag – this thing to hunt and kill and vanquish. And it’s just not that simple.
For me, I had to compartmentalize my son’s autism in so many different ways, depending on how he’s doing, how I’m doing. Some days, it’s a storm that blows everything down, and soaks us all, but leaves such beauty in its wake when it clears, and we are past the worst of it, and come out with improvements on the other side. In the past, when we first were finding our footing, it honestly felt like waterboarding – a constant barrage that I couldn’t catch my breath from, that I couldn’t stop and could only ride out until we were on the other side for that given moment. Sometimes, it’s frankly hilarious – when he laughs at bizarre things, tilts his head with his funny quirks, and gives lazy kisses with the side of his forehead in a little bump to the lips. Sometimes it’s the snarky little side eye he gives when he knows his therapists are up to something, and his shameless use of hugs and kisses to try to get out of work. Sometimes, the dance of two steps forward, one step back leaves me dizzy, and frustrated. Sometimes, we are zipping along – and other times, it feels like a centimeter at a time.
I know, I know. Some would read this, and think I’m horrible. That to hate his autism is to hate a part of my son, to try to love him in pieces and throw away one that makes up so much of him, that it’s selfish. To those, I say – maybe. I don’t really know how to explain how I feel. But I will never smile and be excited to say my son has autism.
I pray, someday, my son is an individual who is what they refer to has “high functioning on the spectrum” – I hope he can speak eloquently on it, and reflect on all the hard work he does, and how far he’s come. I hope he can tell me what it’s really been like for him, and maybe tell parents how to do right by their child with autism, and not make the mistakes I’m sure I’ll make along the way. I hope he tells me that when I was doing the best I could for him, it was enough.
I hope he can read this in the future, and know how deep my love runs for him – so deep that I will let this thing keep cutting at us on bad days, keep trying to brick up him and lock him away, and I will tear it down, every time, with bloody knuckles and a sledge hammer. That I can hate this thing that wants to hide him away, and work to set him free. I think his behaviors, what autism looks like for him, is him fighting the same fight, in his own way, hand in hand with us. Every day. Over and over again. Oars against the tide, sails against the wind.
I think of my journey to have him, the time we crossed to bring him into our lives – I knew he was a boy, I dreamed of him, long before conception. But his autism, its the weather, the climate he live in - it changes what we do, how we react, how we accommodate - but it can't, and won't, be all there is.
My son is not his obsession with certain foods, his OCD tendencies like opening and closing drawers. He is not his picky eating, and his dislike of wet textures. He is not his hand flapping, gibberish sounds, and screeching. He is not his fear and discomfort with changes, and he is not his antisocial tendency with peers.
My son is not his silence. My son is not his autism. I am his mother, and no one loves him more.
“I have crossed the horizon to find you
I know your name….
They have stolen the heart from inside you
But this does not define you….
This is not who you are
You know who are you….”