By 

The First Day of the Rest of Our Lives


Dear readers, brace yourselves.  This is a long post but there was no way around it.  When life’s plans change drastically you can either spend the rest of your days mourning your original path or you can remap the journey but there are no shortcuts for that and no pretty summaries either. At least not for me. I’m not good at bulletpointing my way through life. I need words. Words are my anchor, my breadcrumb trail into a new destination, my friend, my guiding light when it looks like I may get lost, my way out and my way back in. So brace yourselves. This is a long post but there was no way around it. Just into it.

 

That sunny day in June ended up being the end of everything. Of the everything I knew, at least. Of the everything I thought I was yet to know and had all mapped out in my motherhood journey. That day in June was the beginning of everything else.

We had waited for this day for so long. Almost a year on a waiting list, countless forms and reports, a lot of questions and very few answers for our 3 year-old boy’s developmental delays. There was relief, yes, when the words finally spilled out of the pediatrician and speech therapist’s mouths: “Autism.” We weren’t crazy after all. It hadn’t all been in our heads. The children he didn’t play with, the toys left untouched, the mountains of soft cuddly toys that never graduated to friends, the tantrums too frequent, too sharp around the edges to be classed as simply tantrums, the sparse words and even sparser sentences living side by side with complete lines from movies recited perfectly, all the time, anywhere, everywhere. There were also the side glances, the movements, the endless singing and humming, Vivaldi’s Four Seasons and Bach’s Brandenburg concerts known by heart at the age of 2, choices given and never taken, and the sleep…  the sleep that had eluded him and us for 3 years and counting. It wasn’t all in our heads. It wasn’t all in our exhausted bodies. Now we knew. Now we know.

Nothing changes, we said to each other. We already felt it was coming. This was positive. The added benefit was that we could now ask for support and that could only be a good thing. We came home, I had a little cry and carried on. We were leaving for our holiday the next day. Nothing had changed.

Our sunny break started like so many others before, navigating airport lines like conflict resolution experts, mobile phones at the ready at the first hint of distress, grabbing kicking legs at security and taming meltdowns in an airplane. At the beach there was dry sand running in 33c heat, often over people’s towels and managing performative acrobatics for the parents of other children. This is a general occurrence so nothing new here. We are experts in defusing social awkwardness with lighthearted chitchat so we had this, but this time I felt especially irritated. Here, on my favourite place on earth, the sun was now hurting my eyes and my resourcefulness was running dry. Then there was the pool, a literal water container of social traps and norms we could just about tread with apologetic smiles and operating on a tightly coordinated front. Most of it was successfully managed as we could still pass a lot of it off as toddler behaviour, but some of the stares and more inquisitive, embarrassed looks made it through my wall of self preservation. I had been doing this for ages so why all of a sudden did it feel like being hit by sharp metal objects at every step of the way? Why did my stomach feel like it was being punched and why did I so badly want to punch every stomach in sight? Why did I despise every child around me and why was I scolding my own child a bit too harshly? Why were the tears insisting on pushing their way out while everybody else laughed under the summer sun?

Nothing changed, right? No, not really. Except that everything did. Because the slimmest hope I had harboured that he may “just grow of of it” had now been taken away, replaced with a diagnosis, a reason for our doubts and a new future. And somehow, all of a sudden that gets you, first in those devilish details before the big picture starts to take shape. You can’t put a name to it immediately but then you realise there is a word for these collected fragments of insurmountable loss. It is grief. It is grief with all its stages; the sadness, the anger, the hopelessness, the acceptance, the sadness again. On the beach, in the pool, I was dipping my toe in each and every one of them.

It’s been nearly five months which is absolutely nothing in the grand scheme of things. I haven’t been able to write on the blog as everything outside of this has felt so utterly superficial. All the struggles of the parents of typical children, their days ending in wine because there were too many toys to pick up and too many questions from the toddlers, everything sounded completely overcome-able and rather enviable. It made me angry, sad and ultimately despondent so I stayed silent, licking my wounds and finding my ground.

I have not even begun to scratch the surface, to learn all there is to learn so I can support my boy. In my eagerness to become his most informed champion and greatest ally I started reading like a woman possessed and joined every online support group I could find. But because of that I also started to feel like a football, kicked between stories of sheer despair and horrendous strife, and uplifting tales of achievement beyond my wildest dreams, furthering confusion and anxiety.

Needless to say, there are some seriously shitty days. There are days when all I can see is the word, the diagnosis, swimming mockingly in front of my eyes. There are days when all I can feel is loss; the missed milestones, the erosion of expectations, the hilarious toddler conversations we would never have. As school approaches I lay awake at night thinking about the statistics, not sure where I have read them or if they are really right but the numbers keep shouting menacingly in my face. 75% of autistic children get bullied, only 15 percent can hold down a job, a large number struggle with depression, anxiety, OCD… the list goes on. There are days when I think I have stuck myself together enough to function only to be summarily punctured by milestone emails from Babycentre reading something like “The charming speech and cute mistakes of the typical three year old are a wonder to behold…  Your child’s growing proficiency with the English language should be music to your ears!” Funnily enough, though, what is music to our ears is music itself. The music that plays continuously in our house. Entire classical scores bouncing off the walls from 6 am to a little violinist playing dexterously with a spaghetti stick. Bach is king, Vivaldi a prince and more recently Coldplay is slowly climbing the charts to dethrone them all (*shudders*). Whoever is playing, though, you must have a stick at the ready or risk what we now know is not a tantrum but a meltdown. And these can come anytime, anywhere.

We are prepared. We are prepared for World War III just to go to soft play but then other battles ensue that don’t directly involve our child and we didn’t bring a stick for that…  You see there is never a way to change the fact that a 3 year-old girl has just come over as you sit next to her mother to tell you, gloating with pride that she is going to get juice at her brother’s sixth birthday party in an hour’s time. And you say ‘that’s nice’ but then World War III just started inside your chest just as the mother starts making small talk. And a stupid ball of wool grabs hold of your throat when she talks about the funny things kids say and you, in an effort to not stop breathing, go for it and say ‘my son has autism. His speech is delayed.’ And then you get the well intended reply that there was a girl like him at her daughter’s nursery and how great that was because it taught her child about diversity and difference. You’ve been at soft play for less than 20 minutes and your child has already become a learning prop in someone else’s life. And inside your head a voice says “welcome to your new life navigating judgement, preconception and alienation, even when it’s well intended. Mapping out your new journey is also going to have to include some seriously sturdy buckles and a skin as thick as leather.”

The thing is, I was that mum even before I became one. My birth story is not one I go into with much detail because it wasn’t very nice but as they pulled my baby out of my stomach during an emergency c-section he cried hard and scored the maximum on his Apgar. We were ok. He smiled bang on at 2 months, rolled when he was supposed to, crawled like a pro and was walking at 10 months. So he wasn’t interested in toys and his sleep was all over the place but to some extent all children experience a degree of this so I shrugged it off and carried on. I was the mum of a neurotypical child to the best of my knowledge, until the day that I wasn’t. And then this wakes you up to a whole world of otherness, the very world your child now inhabits and it also makes you think about how you contributed to it before you became his mother.

Before my son I looked at difference and disability with what I thought were open eyes and an informed attitude but nothing could have been further from the truth. I saw it at bay, at a safe distance, thinking about it during a 5 second pause for reflection at the supermarket till as I dropped a coin into any given charity’s basket and then moved on to join the abled majority. I never really saw the achievements and the joys of the disabled as anything other than major hurdles conquered that should teach the rest of us to be content in our lives. They were so “brave”, so “inspirational” as they fought adversity time and time again. I never before paused to think how dehumanising and belittling this view can really be. It reduces the existence of a disabled person to their disability and sees every day, ordinary life matters as “achievements” that ultimately serve the purpose of inspiring the abled majority. The disabled is either the object of pity or the object of admiration for their disability. Either way he or she is ultimately objectified because of their disability and the real person is seldom seen. Is my son autistic? Does he have autism? If I chose one over the other I  am making bold and complex statements on disability and identity at a stage when I am only just grasping the basics and piecing my heart back together. And that can be scary too.

This is what I know so far. I am the mother of a little boy who may not be able to do a lot of things kids his age do, who may have communication difficulties and behaviours that affect him and others around him as an inevitable consequence. But he also hosts countless qualities and abilities that contribute to his unique personality and the world will be better off for having him in it.  This is my son. He is not sick. He is not an example. He is not for show. He is different, not less. My role as his mum is not to reduce him to his battles but to see him for who he is with acceptance and help to allow him to flourish and be comfortable in his difference and not be bound by it, even if society is really not that ready for him. Especially because society is really not that ready for him. The journey is undoubtedly hard but you risk throwing the baby out with the bathwater by focusing so much on barriers that you lose sight of the big picture.

One of my son’s favourite movies is The Lady and The Tramp and in one scene the Tramp asks the Lady, what she can see as they both stand on top of a hill overlooking the city. She answers that she can see houses, yards, white picket fences. As the camera pans to reveal the gorgeous mountains stretching beyond the city, bathed in a pink sunset, he tells her in no uncertain terms to ‘open your eyes. There is a whole world out there, beyond the fences.’ And that’s it. Fencing our minds to a reality that is no longer there, no longer ours, is not going to help anyone and self pity only goes so far. Looking at the the hurdles and the statistics is an altogether futile exercise in fortune telling and a detraction from the here and now and the enjoyment that is to be had with a wondrous, beautiful boy _ a  boy who listens to an intricate piece of music twice and sings it back to you, using his nose to make beatbox sounds that serve as a separate rhythm section. A boy who runs so fast that no one ever catches him. A boy who sees geometry, colours and numbers and uses them language when words don’t come. A boy who saves Nemo in his bath daily. A boy who reenacts countless movies, each character played to perfection, not forgetting the music. A boy who defies and challenges the boundaries of our human hearts, expanding them with every smile, every request for a cuddle. A boy who pushes his parents together in a hug and then places his arms around them as he whispers ‘daddy and mummy’… This particular one may be a general occurrence in other people’s homes but for us it is happiness laced with gold, covered in diamonds.

There is an internet meme that goes something like ‘When a child talks back he gets a talking to. When a child with autism talks back we throw a party.’ My son asking me for milk after having used no words for what feels like forever? I could dance naked in the garden to celebrate the joy in my heart. A wee in the potty before his bath? Where do I throw the fireworks? And this too will be our new normal. There is so much joy to be had when we move past the labels and we allow ourselves to live our lives. And what is life if not possibility and an endless throw of the dice?

As I write this I know I am not done grieving and I know I will cry again soon. I am not done being sad and I doubt I ever will. Some moments, some days, some weeks stretch you to your limit and no degree of positivity is going to change the fact that you could not leave the house because he couldn’t bear the feeling of fabric on his skin, or that a small change in routine meant his world, and yours, imploded with the nuclear force of a meltdown. But the next times I cry will hopefully be spaced further apart, and the moments when my heart sings may just start to be frequent enough to cobble together a tune that he will learn in a heartbeat and sing back to me. And hopefully that will carry us all through the dark storms and light up the new road ahead.

 

 

PS: Thanks for sticking with me. This was a long post… but there was no way around it.  Just into it.

Bridie By The Sea

Brilliant blog posts on HonestMum.com

Mum Muddling Through

Lucy At Home

MtM
About me

Full-time working mother to one Speedy Gonzales of a little boy trying to keep her sanity, pay check and clean hair. On most days.

22 Comments

Annette, 3 Little Buttons
November 3, 2017

I'm so sorry that you have all this on your shoulders. Of course you are going to feel so many things as you come to terms with everything. I'm sending you huge squashy hugs from us all at the #dreamteam. I would say take all the time you need, be kind to yourself, and remember that everyones journeys are different. We all have obstacles of different sorts to climb, but this is what makes life as it is. xxx

MtM
November 1, 2017

Thank you Steph! I am indeed taking up your advice :) Hugs to you and the family xx

MtM
November 1, 2017

Thank you! What a lovely thing to write and I am so flattered by your words. I do hope my post helps others as I believe we are stronger when we are united and aware. Big hugs to you xxx

MtM
November 1, 2017

Thank you so so much for your words Luciana, you have summed it up brilliantly. Your little boy is lucky to have you championing and supporting him through his life. I am sure he will become a scientist and when he does, please drop me a line :) Big love to you and the family xxx

MtM
November 1, 2017

Obrigada Sandra!! Um grande beijinho e obrigada pelo impulso de forca e amizade. :) O caminho e' para a frente!

Sandra Rebelo Marques
November 1, 2017

Força Joana. Também foi aos 3 anos que o meu G. recebeu o diagnóstico. E, realmente, nada e tudo mudou. Nós, no fundo e num diálogo que envolvia apenas os olhos, já o sabíamos, mas não queríamos reconhecer. O diagnóstico trouxe-nos a consciência e a vontade de fazer tudo o que fosse possível e impossível. Acordou-nos. Eu costumo dizer que fizemos um investimento a longo prazo no trabalho e nas terapias que o G. recebeu. Já passaram 13 anos desde o diagnóstico. O acreditar de que os desejos são concretizáveis é cada vez maior. Acredite sempre Joana! Um abraço

Luciana N
November 1, 2017

Beautiful words! I wish I could write such heartfelt words... I am also a mother of a boy diagnosed with Autism. Your blog took me back in time, when we didn't know anything and, then when we found out. The first time we heard the words.... Actually, I remember more what it came after that, than before... Because it really changed me. The choices that I had to make, the battles I had to pick, the words I chose to shared... Trying to protected myself, I hardened my heart put on an armor and prepared for battle. My son is now almost 10 years old... Indeed your life will change (it has already happened...) You will see yourself through different eyes, with new perspectives of the world, and you will emerge much stronger. But, if I could share anything with you, to perhaps warm your heart a little, I would remind you the “label” is much harder for us. We are the parents. We are here to protect our children no matter what, But, for your son, it doesn’t mean much... He might feel things more intensely than others. He might struggle with language and social interactions, and touch, but he will show you he is a bright little one! He will learn how to communicate, he will learn strategies to avoid tantrums, he will have friends... And he will bring you so much joy, because he is indeed special (in the best of its meaning). Every time my son hugs me, or has an act of kindness and relates to his siblings, it warms up my heart. He says he wants to be a scientist and create a machine that will help sick people... He has dreams, aspirations, he likes girls... I never really look up to numbers. My son has his sets of talents and the scienists haven’t come to meet him yet. Read and inform yourself, but don’t pay attention to the percentages... I have been softened up throughout these years and embraced this whole world, because it became my world... It has changed me in a great deal and I try hard not to build “expectations”, but to live “today” and give him my love. And loving him, has taught me how to become a better mother. So, good luck on your journey!

Cheshire SEN Tutor
October 31, 2017

You had me welling up reading this. A beautiful, beautiful post. You sound like such a wonderful mum. I love your honesty and I'm sure it will help so many other parents who's child has been diagnosed with ASD. #dreamteam

Steph Curtis
October 27, 2017

I hope that writing this post was in some way cathartic for you. It reminded me of the very first blog post I wrote, on the day our daughter was diagnosed with autism aged 2 and a half, except my post had a lot fewer words! I imagine that the feelings are similar for many who've had a diagnosis, and though I hate to use a cliche, it definitely is a rollercoaster ride. My best tip for you is to find other parents of autistic children locally to share with - they can be the source of the best information x

MtM
October 26, 2017

Thank you for your comment Lucy. I read what you wrote and only wanted to say that it really wasn't a lash out as such, more of an immediate knee jerk reaction when I engaged in the dangerous game of life comparison. That's why I said I took my time and stayed mum "licking my wounds" when I started having these feelings. They, the mums, have done nothing to me. No one has. Things have changed and it's no one's fault but it can take time to come to terms with a new reality and it is ok to feel angry for a while. About the mum who spoke to me, like I said to Emma Thatcher in another comment on here, I didn't take it as an offence. She was trying to reach out and her intentions were good. But I also cannot accept everything that is said just because it's said in good faith, if it makes any sense? People can say all sorts of things and mean well. That doesn't mean they are right. I would love to see that mum again and explain to her how that made me feel because I know she would understand. She was kind and not standoffish and I kinda love her for that. But I would also love to be able to explain how certain things we say without a shred of offensive intent can pass on a message that ultimately calcifies concepts and ideas about disability that will not serve our different kids. Talking is good and dialogue is key to help us all live our different lives the same way :) Big hugs to you xxx

Lucy At Home
October 26, 2017

As a fellow mum to a child with complications, my heart goes out to you. You feel like your future has been taken away - the way you imagined it would pan out has been snatched and left with so many questions and fears and heartaches. It will take time to come to terms with this. There is definitely a grieving process to go through. But try not to lash out (even if it's just internally) at the "normal" mums. Mumming is hard at the best of times and they don't know that they are being hurtful. It is easier to believe that they are trying their best to be kind and understanding because if you interpret their words as hurtful, you will become bitter. Take your time - you need to process it all - but also remember that people are, for the most part, good, and are trying their best to understand. #blogcrush

MtM
October 25, 2017

Thank you for your comment, Emma. You make some valid and important points. With regards to your first point about people's comments during a conversation where you disclose the diagnosis, I fully agree with you that it is much better to keep the channels of communication open and to hear things that you may need to process rather than nothing at all. I accept that and that is why I wrote that I would have to frame comments that were ultimately detrimental as it were even when they were well meant. I don't berate the mum who made the comments. She was trying to be friendly. But it is also not my place to be mindlessly accepting of everything people say just because they chose to say something. It's hard and I have been in her shoes many times and probably said the wrong thing too. That however doesn't absolve me as it were. I could just say 'well at least I said something' but then that leaves the person I said it to to contend with whatever came out of my mouth and excuse it because I was well intended. Look, I am grateful, so so grateful that a lot of people have engaged and commented. I am even grateful to those who suggested I put my son on a gluten-free diet because someone they know had their autism transformed by that. They meant well even if they are dead wrong. On those occasions I chose not to take offence but I also don't start a conversation with the person on why they are wrong unless they are preaching. It would be exhausting. I just take it as it is BUT I cannot condone it in my heart as this would just be perpetuating views that ultimately will not serve my son as he grows up in society. This leads me to the point you made about the disabled and their achievements. Again I agree with everything you say but crucially I think the decision to view the overcoming of obstacles as achievements or something inspirational needs to come from the disabled person himself/herself. How does it define them? Is it who they are or part of them?

How do others know what to say? They don't. They can say, look I think what you are doing is remarkable. Please don't take offence if you think this is something you do everyday without a problem and you would rather I don't highlight it. I don't wish to diminish your battles or overhype them. Ultimately what I don't wish to do is look at you as just your disability because that may take away from who you are even if it adds a lot, and I mean A LOT of hurdles to your day which may change who you ultimately are. But that is a conversation to have, not a decision to make on our own. When it comes to autism, by calling someone autistic or say they have autism you are effectively either denying their identity or reducing them to something they have but that doesn't define them. I don't know the answer to that yet and am on the fence over arguments on both camps so for now I am using both. I would never take offence at people drawing strength from my strength. I am very flattered and it gives me more strength to feel that supported. Thank you :) xx

Emma Thatcher
October 25, 2017

I understand that it can be frustrating when people say they know someone with autism and that it helped their child learn about diversity. But the thing is, those parents are just trying to engage with you. They are trying to be kind and many people don't know what to say in a situation like that. I think it seems irritating to you because you are still coming to terms with this diagnosis. It's better a parent tries to interact with you that just end the conversation because they don't know what to say.

I wanted to touch on your comment about people with illness or disability being inspiring. My husband has a physical disability. I understand it can be frustrating when more able people complain about their own minor ailments as if their disability were the same level. It's irritating, but those people are trying to make you feel more normal, not alienate you. They want to continue the conversation and they do so in the kindest way they know how to. People with disabilities do have to try harder to overcome ordinary obstacles. That's true. And that does make them inspiring and it's okay to tell them that. It doesn't belittle their achievements at all. My husband gets very bogged down with depression as a side effect of his disability. Being told how well he's doing or how inspirational it is when he achieves "ordinary things" gives him a boost. He struggles more when people play down his achievements because able bodied people can do those things without a second thought.

The world is not against you, people just show kindness in different ways. Conversation is good - it raises awareness. If people draw inspiration from your strength or your sons achievements, let them. Be flattered, not offended.

#BrillBlogPosts

MtM
October 22, 2017

Thank you darling Becky xxxx

MtM
October 22, 2017

Thank you so much Renee ❤️❤️

Talya
October 20, 2017

Oh my goodness I can't imagine what it was like to hear those words...it's going to be such a journey but I agree with Renee above who writes about being an autism mama above, be gentle with yourself. She has some fab blogposts on the subject so would def recommend following her if you're not already. Thanks for linking up to #coolmumclub xoxo

Reneé @ Mummytries
October 20, 2017

This was me two years ago with my eldest. You’ll find your way, be gentle on yourself. Much love to you all on your new journey xx

rebecca horsbrugh
October 20, 2017

Wonderful words - from the heart and he is very lucky to have a mother and father like you two x

Mama Grace
October 19, 2017

Your son is different and the world is ready for him. I've taught a number of young people living with autism and they've become the best version of themselves just as those who don't have autism have. The world is his and we are better educated and equipped to make the most of it. #ablogginggoodtime

Imperfect Mum
October 19, 2017

As mum to a son with autism I totally get this. All of it. But I can say almost 8 years after diagnosis that your son will surprise you. Please read any of my posts on diagnosis and I hope they help!
http://www.diaryofanimperfectmum.com/2016/03/my-battle-over-a-word.html
Thank you for linking up to #ablogginggoodtime

INÊS Eliseu
October 19, 2017

I think we are all unique in our own way. i've always been labeled as difficult groing up and that made people treat me differently and made me angry wich made me even more difficult turns out i've always been psicolagically chalenged. it's hard to look to someone without moral judjement. i can not begin to imagine how hard this must be for you 3. but i empathise you. because i know in first person how hard it is to learn how to cope with society when you don't fit in what is suppose to be the normal way. T. will always be T. unique as anybody else is. and special because of his uniqueness. love your way

Filipa Matos
October 18, 2017

Obrigada por este post. Fiquei emocionada pela descrição tão profunda que partilhaste e pela coragem de o fazeres. Não há maior coração do o que mãe, seja qual for a circunstância. Sempre. Grande beijo

Leave a comment

Your email address will not be published. Required fields are marked *

*

CommentLuv badge