Conor’s Autism Journey

Conor’s Autism Journey is a part two of an original post called Conor’s Autism Birth Story, which you can find here.

My Little Boy Lost

When I see Conor, I only see him, not what the world tries to tell me about Autism or sensory processing differences, just him. I see his lovely eyes, his sweet smile, I hear his gentle laugh, I feel the softness in his skin when he touches my face. I see him when he flaps his hands, I see him when he twirls around, I hear him when he screeches when he is happy, I hold him tight when he is glad, hug him a little tighter when he is sad.

I listen every hour of every day for his voice to find it’s way back to me. I love him now and forever more, come what may I will love him long after my dying day.

Grown Up Conor

I hope when the day comes that I am gone from this world, my lovely Conor has grown up to be the handsome, kind young man I know he is meant to be. I hope by then his voice has found it’s way back, in the form that he chooses, whether that his words from his mouth or through his speech device, more than anything I hope that he can tell all the world how he feels.

I hope he will remember how much I have loved him and will always will love him. I hope he will always remember the good times, the fun times we have had and above all I hope he will forget the sad.

I hope by the time my life ends he will be living a full happy life, that he will wake up each morning knowing who he is as a human being, what he wants to do with his life and that he has a love in his heart that I see in him today as he plays on the floor beside me. I hope he will always have love in his life, I hope the people he meets along the way treat him with kindness, I hope he will never again feel lost, alone and or sad.

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An exhausted mammy and her best boy.

I hope he forgets his heartbreaking start in life as it haunts my thoughts most nights just before I fall asleep. I remember the lost look on his face, the fear in his eyes, the screams of terror, the almost silent way he would cry when he was sad. I fear most that someday he will look back and blame me for all the hard times he has had.

If you are reading this now Conor as the tall handsome kind man I know you will be someday I am sorry for how your life began, I wish I had known from the beginning, I wish I had listened to my own intuition, I wish I had done more, for that I will always be sorry. I hope by now our life is as happy as I can make it to be. I love you now and forever more my beautiful Conor.

conors autism birth story

Conor’s Autism Journey Part 2

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Holding his beautiful little head as gently as I could in my hands, I tried to stop him, he just couldn’t. He couldn’t stop himself. He was crying now too but couldn’t stop. I swept him up as quickly as I could to stop him hurting himself. His poor little baby head was all red from where he was hitting it off the wall. He looked so frightened but just couldn’t stop. I remember my heart beating so fast I thought it would explode out of my chest. I didn’t know it back then but Conor had sensory processing differences and was Autistic. He was overwhelmed and was doing his absolute best to cope in a world not ready for him yet.

As the weeks were going by I felt I was losing the connection with Conor more and more. He used to smile up at me, used to say Mama, used to laugh and I remember thinking he used to love me. Now he just looked so lost when he looked at me, my heart broke as he looked through me. I remember always trying to “connect” with him, help him to come back to me, stay with me but he was disappearing now little by little. He didn’t seem to want me or anyone close by unless it was for something to eat or drink.

I felt a failure as I didn’t have the knowledge or expertise back then to know how to support and help my gorgeous Conor.

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Connection

Conor didn’t seem to hear me much anymore, I would scream his name now to the top of my lungs, he wouldn’t look, wouldn’t flinch, he wasn’t deaf but he didn’t hear me anymore. Maybe he didn’t love me anymore, I had failed him since he was born, he couldn’t sleep, he couldn’t eat, drink, I couldn’t help him. I wouldn’t blame him, for not wanting me around, I had failed him.

I was so alone and felt so lost, I begged all the doctors, the hospitals, clinics, no one would listen. He will grow out of it, he is a baby, that is what babies do, I was told so often, I thought it was me, thought I was losing it. Maybe I didn’t love him enough, maybe I didn’t tell him enough, I should have hugged him more, held him, loved him more, it was me, it must be.

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My gorgeous Conor .

Conor started to spend his days staring in to space, head banging, biting aggressively into his own skin, obsessively lining up objects, screaming all day long, awake all night long. I know now Conor was totally overwhelmed and trying to process the world around him, but back in those days, I didn’t have the knowledge and expertise I have now. I was lost and alone.

Nights Driving With My Son

I spent most nights on the road by the time Conor was 18 months old, there were nights of ice and fog, thunder and rain. I remember the Winter where everything was frozen solid, there were thick blankets of snow and ice everywhere, it was one of the coldest and worst winters we had had in Mayo for years.

Those nights on the road were the most fearsome and lonely because there didn’t seem to be another soul out driving but me and my lovely boy. He could only sleep with movement and was starting to get too big for his pushchair so I had no choice but to drive to take him out of the house so he could rest, so Hailey and my husband could sleep.

I remember being so scared that winter driving on the treacherous roads but then the thought of the screaming, vomiting and head banging was worse so I drove staying on as many main roads as I could as I knew they would be the safest for me and my little boy.

Talking to the Moon

Myself and Conor have seen some beautiful sunrises together on those lonely roads throughout the Counties of the West over the years.We have watched the sea in the mornings, watched the lights of towns go out at night, watched the twinkling stars over our heads lighting our way as we drove through the night. I remember one night as I drove, Bruno Mars Song “Talking to the Moon” came on the radio, I just burst out crying as it reminded me of Conor trying to get to me, to tell me what was really happening, what was actually going on.

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Sleeping in Carparks

Sometimes when Conor would sleep but we were too far from home I would drive to a car park and close my eyes for a little while to rest while my little man finally got some sleep. I remember listening to the sound of him sleeping and wishing that while he was away in his dreams that he would finally be happy, now and again he would giggle in his sleep and I would thank god for helping him to find some happiness in his dreams.

When he would wake, off we would set again in the direction from where we came, trying always to make it back home before Hailey was up as I loved to make her breakfast first thing while she and Ben the Bear (her favorite Teddy) would tell me all their news from the night before.

I never wanted her to know that we had not been in the house that night, I wanted to hide as much of the reality as I could from her. My husband would always ring us around 1 in the morning to see where we were, to make sure we were okay and to tell me to pull in if I got too tired. He would always keep his phone on in case anything would happen to us while we were on the road during those years.

I don’t know how I never fell asleep at the wheel, I always think God was watching over us, minding us as we traveled together on those lonely nights.

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My best boy.

Autism Insomnia

By the time Conor was almost 18 months old, he had never slept ever a full night, couldn’t stand, or walk, was only just learning to sit up, wouldn’t eat any more and still couldn’t hold a bottle. He was so terrified of water that we had to keep the bathroom door locked at all times and the kitchen tap could only be turned on if Conor was not near by.

conors autism birth story

We couldn’t and still can’t have showers or baths while Conor is in the house. One of us would take Conor out of the house so we could have a shower or give Hailey a bath. We couldn’t and still can’t turn on anything in the house that has motor or fan sound when switched on as it causes Conor actual physical pain to hear them so we always took him out of the house when we had to cook or use the hoover or dryer.

We didn’t understand it at all back then we just knew he got so frantic and frightened we just would not dare put any of them on while he was in the house as it could take hours for Conor to calm down afterwards. I know now it’s because Conor has sensory differences, but back then we were blindsided.

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I just remember feeling physically on edge all the time, waiting for something else bad to happen always. I looked terrible, had deep black circles under my eyes, became very thin for a time as well from all the pushing Conor around the house at night in his pushchair. I would say I was fragile, exhausted. I guess the best way to describe it is to say “body shock” or “post traumatic stress disorder” but we were still living it every single day so there was never a time where it was “finished” where we could rest as Conor could not sleep unless there was movement. We were on our own, Granny and Grandad Golden would help when they could, but mostly it was just our little family trying to survive.

Autism Diagnosis

Conor was finally diagnosed just before he was 18 months old as Autistic. He had always had bowel difficulties since he was born. I know now it is common amongst many Autistic individuals and it was this that lead to Conor finally being identified as Autistic, and I was finally heard.

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I had brought Conor to Casualty one day when he was having severe trouble with his bowels, he had what I thought was “prolapsed bowel” when I brought him there. I remember being so exhausted that day because I had been awake all that week as Conor couldn’t sleep at all as he had a cold.

Telling The Doctors to Take My Son and Do what they wanted with me

I knew I couldn’t go on like this any more so told the Doctors in Casualty I had been in and out of here since the day Conor was born and that this time I would not bring him home until someone could finally tell me what was happening.

I told them I was in no fit state to look after him anymore that he would have to stay there with them unless they could finally tell what was happening. I was bawling crying as I told them but I knew if  I didn’t say it to them they would just send us home again like they always had before. Everyone in the Casulaty waiting room were staring at me as I cried at the counter and begged them to help Conor.

Conor was admitted to the Hospital that day and that was the day that everything changed.

Reality Check

It sounds so stupid now but not for a second did I think he would end up with a diagnosis of any kind. I thought once they properly checked him over in the hospital they would see he needed some medicine possibly for his reflux and once he got his medicine he would be fine again, his words would come back, he would be able to eat again, the screaming, vomiting, head banging would stop and he would learn to sleep.

I didn’t realize back then but when I was being asked all these questions up on the ward about Conor, about the challenges he faced, about the screaming, lack of eating or drinking he was being assessed for Autism.

I would love to go back to those days just before I was told because I was in dream land. Finally happy someone was listening to me, that they believed me this time, that they would give him the right medicine and he would be fine my lovely Conor would not have to struggle anymore. He would be happy and be able to enjoy his life and world.

I get a lump in my throat now thinking of how happy I was sitting in that little cubicle telling Conor it would be all right this time, he would be fine and they would help him feel “better”. Breaks my heart at the innocence of my thoughts as the very next day my world came crushing down for good and it has taken years to build it back up.

Conor and Hailey

Autism Assessment

Conor was sitting on my lap that hot August sunny day when his lovely Doctor came in to talk to us. In my head I thought the worst thing she was going to say was that his acid re-flux was so bad he would need a minor operation, but once all was done he would be back talking, progressing and would finally be able to sleep.

She was so kind and so patient, apologizing for all the times we had brought him in to the hospital and every time he had been sent home. She started to talk about early intervention, and that in her heart she knew, after reviewing his complete file, after talking to us, getting a detailed history about him, and from observing him over this past week in the hospital, that he was disabled.

She mentioned global development delay, sensory processing differences, and Autism. I just remember listening to her talk more about Autism and what it was but I couldn’t hear her properly, my heart was beating so fast I could hear it as if it was somehow now inside my head. I couldn’t look up, the floor was just pulling me down and her voice just sounded so far away like she was talking in slow motion. I was panicked, I didn’t know anything about Autism, I didn’t know where to start to try and help him.

People would harm my son

I started to cry then, I couldn’t look up, I was kissing the top of Conor’s little curly hair and hugging him so tight. A fear washed over me that because my lovely Conor was different, people would be unkind to him and would harm him.

conors autism birth story

Conor sort of turned his little face up towards me and gave me the first real smile I had seen from him in months and it broke my heart because he knew. It was almost like he was saying “it’s okay mammy, we all know now”.  Conor’s Doctor stayed along time talking to me and telling me things I needed to know, about what would happen next, I can’t remember much from that day but that very moment she told me.

I was so overwhelmed as I didn’t know anything about Autism and was afraid I would be even less able to help my lovely Conor.

That day was a turning point. Conor has never ever been back to the hospital to stay since. He has had outpatient appointments but never to stay. We had to go through the proper full Assessment so that all his “paperwork” for Autism would be correct and carried out properly.

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Different Not Less

That night in the hospital as all the beautiful little babies slept in their cubicles I was pushing Conor up and down the corridors of the children’s ward, singing softly to him his favorite songs he loved so much. I remember being so glad to be on the ward that night as I knew once we went home the reality would hit me properly. The nurses on the children’s ward are some of the most kindest ladies I have ever come to know, in fact one of those ladies is now my friend and I would be so lost without her.

They were so kind to Conor every time he stayed, so nice to me, we had been there so often when he was small they remembered him and would always pop in for a catch up. That week he was diagnosed meant so much to me, as I knew they had read in his file that Conor was Autistic and they didn’t treat him any differently, they didn’t treat him any less, they were still as lovely as they always were.

That was my biggest fear that other people would treat Conor as less than, because he was different, but they didn’t, the nurses embraced my gorgeous Conor and saw he was the incredible boy that I knew him to be.

A Vegetable

I remember feeling so afraid back then, as I didn’t know one other person my own age who had a disabled child. I was so alone, so over whelmed and so fragile. Our left returned to our normal, Granny and Grandad Golden continued to help as much as they could, but when they couldn’t help, we were completely on our own.

Soon afterwards locally word had spread that Conor, my lovely son was disabled.

The only reason I know that is that one day I had to go to Dunnes Stores to pick up some new clothes for Hailey and Conor so left my little ones with my mam and went to town. Conor was still unable to walk or bear much weight on his legs at that time so would wear out the knees of his trousers often.

When I was just looking through clothes in the boys section a lady I have known most of my life but not someone I would ever call a friend came up to me. She told me that everyone heard about Conor and oh it was so terrible, I thought at first she was misguided but trying to be kind.

She then said something that made me realize that not everyone is kind in this world and that my own world had changed for good. Her exact words were “Well at least he is not a complete vegetable, my friend ****** said she saw him walk so at least he can walk”. The reality was, my lovely Conor actually could not walk or bear weight on his legs.

My heart cracked straight down the middle.

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My Heart Hit My Stomach

I just remember my heart hit my stomach so fast, I felt sick and I could feel the tears coming so I made my excuses and left the shop without anything in my hands for my lovely little people who were at  home with my mam. I was so heartbroken that someone could be so mean about an innocent 18 month old little boy who was doing the best he could in this world. From that day on I realized I had to be able to stick up for Conor and for children, adults with additional needs.

I cry now thinking how that lady broke my heart that day. Conor was not and is not a vegetable, he is the most lovely little boy anyone could ever ask to love and have in their lives.

I wish I had the courage that day to say it to that lady but I was so heartbroken as it had only been a few weeks since our stay in the hospital. I think you will always know when someone genuinely puts there “foot in it” and when they intend to hurt you with their words. The lady that said those horrible things about Conor that day meant them to hurt and they did and they still do.

conors autism birth story

My Boy

I realize now, almost 6 years since Conor was born that he was meant for me, I was meant to be his mammy, Mick was supposed to be his Daddy and Hailey was always supposed to be his sister and Jack to be his brother because we all love him, just as he is, just as he is supposed to be, perfect in his own way.

My life changed that day I found out about Conor was Autistic.

Gave up my Law Career

I gave up my career as a trainee solicitor and instead became my beautiful Conor’s advocate. I now had a place to start to research and so I did. In the years since I have studied and researched Autism to the point I now support my gorgeous Conor and his little brother Jack who is also Autistic. Conor changed all our worlds for the better.

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Future

Conor attends the brilliant Knockrooskey National School Autism Class and he is thriving there, they have helped him to become the little boy he was always supposed to be. Noelle his amazing teacher and Jenny his SNA with a heart of gold help him every single day to thrive, to be his best.

This has been one of the hardest posts I have ever written, I was almost too afraid to write it as it meant looking back to the past and reliving some of the very hard times. There is so much more to say and write about those times, but I cannot face it just yet, maybe one day I will write it all down and share the full story with you all.

Conor in the pushchair that had helped him to sleep for years.xx
Conor in the pushchair that had helped him to sleep for years.

Thank you from my heart to yours for being here with me, supporting families just like my own who are doing their best for their children.

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2 Comments

  • Brigid Carr August 29, 2019 at 2:59 pm

    Thanks that was one amazing story.Fair plate of you.We as moms know best about our kids and its a total discrease when no one listens to us.I hope connor is doing well and trieving too.Iwish my daughter nora was taken out of her local school in tourmakeady when she was diagnosed at 7 yrs .They brought the help to her because change is a big thing in noras life along with everything else that goes with autism.The most thing that bugs me is People when they see Nora .They say there is nothing wrong with her shes great its all in your head ,but unfortunately its not in my head she has AUTISM and no dr can fix it.They say in time it will go away .Well no Dr. can fix it and its here to stay .I tell them to move in for one night just one night .No one has yet and dont think they will.So if anything your story has shed some light on my experence so to you Amanda Thank you so much i sent you an email this morning.Thanks again .Brigid Carr.

    • Amanda Mc Guinness November 30, 2019 at 8:02 pm

      Thank you so much Brigid. I hope you and Nora are well. It is a difficult road we find ourselves on, but we one we do not have to face alone. x

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