Conor’s Autism Birth Story
I have been asked so many times recently about Conor and how we found out about Conor being autistic. I usually give the good version and say we found out when he was less than 18 months old and at that time he was the youngest in the County to ever be diagnosed. It is all true but what lead to that diagnosis has been some of the hardest most painful years of my life. I decided to finally write down how it all happened and I may come back later to add more to it as I don’t think I could mentally cope with remembering all that happened and all we have been through all at once so for now I have written my first draft for you to read. It will be in two parts as it is a long story.
I’l post the second part in a week or so , once I have built up the courage to write it.
So for now here is Part 1 of Conor’s Autism.-
If I could go back in time to the day before Conor was born I would in an instant. I would give myself the biggest hug and tell me it would all be alright, that it was going to be an incredibly painful few years ahead, that I would spend many nights bawling my eyes out with worry, stress and loneliness but in the end it would be alright.
I would tell the me of almost 6 years ago that the little boy I loved so much would be born with additional needs and to record every second of his little life as someday soon he would stop to talk and he would leave to go into his own little world but we would learn how to understand my gorgeous Conor and we would make a deeper connection than I could have ever imagined one day.
I still cry my eyes out even now that I didn’t record Conor speaking as I remember loving the sound of his voice saying Mama, he didn’t say it long before all his words went, but I just wish with all my heart now I had a recording of his lovely voice. I never expected that I wouldn’t hear his voice again, that I would lose the hope I always had in my heart for a while, when I saw how badly the world treated children who were different, just like my gorgeous Conor.
I remember the day Conor was born as if it were yesterday, because from that day everything changed for good. I feel terrible heartache still that I didn’t realize from the day he first entered our world that my gorgeous most lovely boy had additional needs. I knew something was different about my lovely Conor, but I could never have imagined for a second what the reality was.
I always wanted to have a little boy of my own to love, to kiss and hold, my very own little boy who would grow up someday leaving home with a piece of my heart always.
I was in love with Conor from the very moment I knew he was growing in my belly. I would dream at night of how he would look, all the lovely things he and Hailey would do together, how I would bring my special boy and best girl out to do lovely things together. We would bake, paint, talk, read, play, do all the things you plan to do when you have little people to love and kiss goodnight.
Conor was born on the 8th of March 2010 in the middle of the night. I loved him; his chubby cheeks, his tiny hands, his pointy toes, I loved every single inch of my lovely baby boy. I remember kissing every single part of him, kissing all my love into him, hoping he knew as I held him tight I loved him now and forever more. I promised him that night I would always be there for him, love him, mind him, help him, protect him.
I feel such guilt now that I didn’t live up to those promises, I should have known my gorgeous Conor was autistic that first night, that he was suffering in an overwhelming world.
I didn’t realize when Conor didn’t sleep that first night that it would be over 2 and a half years before he would sleep again, once he had medication. I didn’t realize what was about to happen, I thought he would sleep once he was settled at home, yet what followed was the hardest, most heart breaking years of my life so far; the most hard to talk about time of my life.
From that first night with my beautiful Conor in my arms, he never slept again until he was prescribed medication for children with additional needs when he was 2 and a half.
He screamed all day and all night, not a baby cry but an actual unusual high-pitched scream I know now to be associated with Autism. The only way to stop the screaming was to hold him, so I did. I held him, rocked him, kissed him, hugged him, loved him; did everything I knew how to do to help him. It wasn’t enough.
He never slept in his special Moses Basket I picked out for him, never slept under his special Pirate blankets, never, not once. With a breaking heart I gave them away, hoping another little baby boy would feel the love I had felt that day I picked them out for my gorgeous Conor.
In the years that followed the only way to help Conor to sleep was to push him around our house all night long in a pushchair. We would take it turns to stay up all night pushing him around the kitchen and living room all night long.
I know now it helped him sleep because he has sensory processing differences and had severe acid reflux, laying down caused him actual physical pain. This was a time before social media and we had dial up internet, so my access to global information was so limited back then.
Driving Through The Night
When pushing Conor in his pushchair wasn’t enough to help him sleep, I would drive through the night. Motion helped Conor sleep so I drove. I ended up in Galway many nights driving around the city as people my age happily lived a life that seemed like a ghost to me now. I remember driving out to Salthill wondering why my little gorgeous boy could not sleep, why I couldn’t help him.
I couldn’t stop the car as once it would stop he would start screaming and vomiting so there were nights I contemplated driving through red lights to stop the screaming, the vomiting. During those years I have driven through every county in the West, just driving to stop the screaming to help my lovely boy sleep. I was so so tired but the alternative was if I didn’t take Conor out of the house and drive, Hailey would be awake and my husband too. So I drove and cried my eyes out wishing for it all to end.
Could Not Eat
During that time from birth to when Conor was eventually diagnosed as autistic, he was unable to drink his formula milk or later eat at all. He was so particular he would only drink out of one brand of bottle and if for any reason I could not get my hands on that bottle he would not drink at all, not one ounce.
So I always had a steady supply in a press of the bottles he would tolerate, the specialist prescription formula he could drink. He eventually stopped eating at all for months at a time so had to be put on to a specialist formula drink normally given to seriously malnourished children.
Conor spent most of his baby years in and out of Hospital as the doctors could not tell us what was wrong why he couldn’t sleep, why he couldn’t eat, why he vomited constantly, why he couldn’t tolerate anyone touching him but myself and my husband. We had all the “whys” and they had none of the answers.
Conor has extreme anxiety still related to his experiences in the world daily. As a young baby nobody could visit our house and we couldn’t bring Conor anywhere as he just could not tolerate the unexpected, a new voice, a new face terrified him and the screaming/vomiting would start. It could take hours to calm him down, until he would eventually stop exhausted.
We were all exhausted, not sleeping for years had a huge affect on all of us.
I had regular black outs with the stress, I would be pushing Conor around the house at night then feel very weak and sit on the floor in case I fainted and would be woken by Conor screaming so would get up and start pushing him again.
I remember at that time someone making a comment to me, wasn’t I looking great I had lost so much wait after having Conor. I just wanted to roar crying as I just wanted to have sleep and not be a wake day and night. I was think because I never slept and worried down to my bones about my gorgeous boy.
I just remember having a constant sick feeling in my stomach a bit like acid but more like a bad pain, the kind you get when you get an awful shock suddenly. All my hair fell out on one side with the stress so I have had to keep it tied up as it never seemed to grow back properly later. I have the worst memory now, I always think it is from being constantly exhausted as Conor can still stay awake all night for nights on end.
My eyes are constantly sore from being dry and tired. I survive on Tea now to keep me going. Hailey was exhausted too with it all and I felt and still feel such guilt. She would often stay over at her granny’s to give her a break from it all and every evening I would take her out of the house on her own to give her a break from all the screaming and the stress.
Conor couldn’t sit up or hold a bottle until his first birthday, didn’t stand or walk until he was almost 2. He still can’t really feed himself so we help him. He is still so particular about food and his drinks that we always have to have a stock of the same water bottles in the press along with the same food brands he will eat and the same cutlery he will let us use.
He spoke for a little while after his first birthday, he could say mama, dada, baba and funnily bopum dopum; which I know isn’t a word but I loved the sound of his voice because he was saying something. I so wish now I had recorded him, I would do absolutely anything to help him talk. If I ever heard him say mama again I cannot tell you what that would do to me.x
My lovely Conor faces so many challenges, I could write forever to tell you all about them but I try to not think about that time too much as it overwhelms me now when I remember all we have been through together and all that may still lie ahead.
I love Conor with every single part of my being and as hard as the last few years have been on us I cannot begin to imagine what they have been like for him personally. I could cry forever when I think of how it has been so hard for him.
God, I love you Conor and you make me so proud every single day of your life with your bravery in all you have faced and overcome.You do and you will always make so proud to be your mammy.xxxx
End of Conor’s Autism Part 1. Part 2 will follow in a week or so, once I have the courage to write it.xx
EDIT- You can find Conor’s Autism Part 2 Here.
If you want to find out what we get up to day to day pop over to our Facebook Page which you can find here.xx
Amanda you are so brave and loving! Your little smiler Conor is gorgeous and so lucky to have a Mummy who doesn’t ever quit on him as, sadly, so many mothers do. It’s such a good thing you found the courage to share this. It could help some other mama struggling with similar challenges. Huge respect and hugs to you. xx
Thank you so much Tamuria!xxx You are so kind and always so up liftingxxx
You are just amazing, what a fantastic mother!!
Thank you so much Olivia xxx You are so kindxx
Your story so far is heartbreaking 🙁 I can relate to a lot of it and I think that’s why it makes me upset. Those sleepless nights screaming non stop, not knowing what to do and as a mother you should so you feel like a failure . I remember the panic and stress ,, crying on the phone 1 night to south doc because when she asked his date of birth I couldn’t remember I was so dilarious !!
However your going through so much more and are so super strong I can’t believe it !
I feel we’ve turned a corner since Ollie was diagnosed at 2. I felt like at least i wasn’t going bonkers the last year and even though Ollie can’t talk I felt if he could he’d say ‘know ye all will understand me better’
I’m really enjoying reading your blog so keep up the good work and let’s keep taking 1 day at a time . Xxx
Oh gosh Gillian!!! You poor thing!! I know how you feel the delirious tirednessxxx Ollie has a fab mammy too who knows her little boy’s every heart beatxxx Glad to here Ollie is making progressxx Conor makes progress in hos own way everydayxx I would love to hear Conor talk but as you say let’s take one day at a time and keep positivity in our hearts along the wayxx So glad you like my Blogxx Thank you so much for stopping byxxxx
I read your story with tears streaming as I am
So sad for what Conor and you and your family have had to go through. You sound like such an amazing Mammy and I Conor is so lucky to have you as his family. You’re so brave and I can only admire you so much for never giving up. How you keep going, I don’t know. I have high functioning autism in my house with our daughters and though not a walk in the park at times it’s like a drop in the ocean when I read your story. The spectrum is so vast, isn’t it. I did write about my girls and a great deal of healing was done through writing so keep it up. Do it only when you are ready. I wrote our story over many months not knowing if I would publish it but eventually I did. I wish you well and I certainly will be sharing your story. You’re a great girl and Mammy and an inspiration to us all. Love and best wishes, Paula. Xx
Wow! Thank you so much Paulaxxx The Spectrum sure is!xx I have Baby Jack now aswell with Autism and although he is similar in alot of ways to Conor he is completely different in so many more with how his Autism is.x I am going to read your blog aswell 😀 Looking forward to following youx Thank you so much for your uplifting words.x It really is a hard road but I know with Mammies just like you beside me, we are not alone.xxx
Thanks so much Amanda. We have three on the spectrum but all so different too. Here’s a link to my blog post on my twin girls. They have come on so much since I wrote it but it really helped to write it all down. I was delighted to read your blog and keep in touch xx https://iusedtoeatmarlborolightsbypaulanolanphotography.wordpress.com/2014/09/05/double-trouble/
I actually feel the same, a little better to have actually written it down. I didn’t write everything that happened as it was just too hard to say it all just now but will come back in a few weeks and re-edit/add in what I just couldn’t yetx I am so looking forward to following your blogxx When I have my little people in bed tonight I will pop over with a hot cup of tea for a good read <3 I will of course keep in touchxx I am VERY new to blogging so I have a lot to do yet with my Blog I am so shocked by how it has taken off but in a good wayxx Will be by tonight for a good readxx
Ah Amanda actually here crying, so I can only imagine what you were like. you are an amazing mother and the kids and mick are so lucky to have you. Everything you do and will do will only help Conor and jack even more. I hope someday I will be as good a mother as you are xxxx
Aw!!! Sorry I didn’t mean to do that!x Just hope by sharing the hard stories it will help raise awareness for Families of children with Special Needsxx You will be an even better mammy than me I have no doubtxx
What a great mama you are! It sounds like it must be especially traumatizing to go through, especially when you didn’t know what was wrong in the earlier months. I am a Speech Language Pathologist and I give therapy to children with Autism and Developmental Disabilities. I know how hard it can be. Stay strong…I love that you are writing about this! I am sure it will help other mom’s and families in a similar position! Oh…and Conor is RIDICULOUSLY adorable 🙂
Thank you so much Amy, it is great to hear from a Therapist and hear their perspective on Autism and raising children with Special Needs.Thank you so much or stopping by my Blogx
This post should be shared with more people so they can understand what families who have kids with autism are going through. I don’t know anyone who is experiencing this personally but I can only imagine that the people who are going through a similar situation will find some comfort knowing they’re not alone. I’m looking forward to reading part two.
Thank you so much Kyleigh for stopping by and thank you for your positive uplifting words 😀 I totally agree I shared our story to help raise awareness as so many have no idea what it can be like. Thank you for helping to raise awareness. x
Amanda, you make us want to be better mums. Love to Conor. xxx
Wow!! Thank you so much for such an amazing complimentxxx I am beyond honored you have shared my story on your amazing website!xx Thank you again so much for all the supportxxx
You are an amazing mother and.your little boy is beautiful. Children with special needs require special mummies and that you are. I wish you the very best for the future. Looking forward to reading part 2 ☺
Thank you so much Elaine.x Honestly I have been so touched by everyone’s kindness in their response. I just hope by writing the hard stories it will help to raise awareness for other families like our selves who are struggling to cope.xx Thank you for your lovely good wishesxxx
Hi Amanda, I just read your blog and I was so moved by your story I just had to write to you. You are a wonderful writer. It feels so honest and I can feel your love and pain through your words. When I look at little Conor I could cry thinking about his journey but he has you and it is obvious you will support and love him in every way possible. I truly hope life gets easier for you and Conor and your family.
Thank you so much Ciaraxx You are so kind to write such a moving commentxx I am so glad you liked it, i know it was no doubt hard to read but I always hope by sharing the hard stories it will help to raise awareness for others who may not be able to speak up xxx Thank you again so much for your lovely comment it really means alot to mexx
Wow. I’m actually speechless. I think that people writing about their experiences with special needs in an honest way is so important. I have a friend who has been chronicling her special needs journey on Facebook, and all I can say is that you mommas are strong and amazing <3 Thank you for sharing this story.
wow thank you so much Ronda, I really appreciate your kind words and well done to your amazing friend as well. It is not easy but by sharing the hard stories hopefully it will help raise awareness for many. xx
U are an Amaaaaaazing Family!! Many Blessings & Love & Light to u now & always!! Reflexology is a great relaxer & u the Mom & Dad can be trained the hyper point & relaxation points & also a Fantastic Lady called Karen O’Connor, works out of Canmore & Barna & has worked with many children with autism & had fantastic success with helping them to become vocal!! If u need any details pm me & I will do all I can to help u’s!! U’s are an inspiration & the world needs more ppl of yer strength innit!! Respect to u all!! I will include u in my prayers each nite!! xo
Thank you so much Ann I would be so interested in getting her number from you to see if it would help.x Many thanks for your lovely comments.x
I have completed my baby & child Reflexology course & became certified last week, I will gift u Reflexology sessions for your Beautiful Conor & yourself!! You could do with the relaxation time too!! I am fully mobile & can come to your home, we can arrange a time that suits us all!! My no. is (087) 7724144n feel free to ring me!! Love, Light, Blessings & Joy to u all!! xo
Wow thank you so much Ann for such a kind offer.xx You are so generous I don’t know what to sayxx Such a lovely ladyxx Thank you ever so muchxx
You are an inspiration…he is such a lucky maneen to have such a fantastic and proactive mother that is so strong…I love your blog and I think you will help many others in the same situation..you should be so proud of yourself and your little Family xxx
Wow thank you so much Anna!xx Such a lovely compliment. Thank you ever so much for stopping by my Blog.xx
Bless you. That was a hard post to read let alone live through and write about. You are an incredible Mama.
What a lovely blog Amanda. I feel for you. Have no kids w ASD but have recently come across an article written by craniosacral therapist Denise McCann on treating a boy w autism. Have you heard of her? She’s outside Gort on Co.Galway. Email me if you want to know more or google her.
Dear Amanda, this was my story 24 years ago, it took till my daughter was sixteen before she was diagnosed with Autism, again like Conor she vomited constantly always ending up in hospital dehydrated, with very poor bendy veins so getting a line in was a night made and very distressing for her and us . for years we were just told she was moderately handicapped and because of this missed out on the correct education, and suffered emensly as nobody could understand net anxiety or sensory needs, I’d like to tell you it’ll get easier but that would be condescending. So I’ll just wish you and Conor well XOX
You’re such an amazing person and strong woman. You’re doing a great job. Thanks for sharing your story. It’s very inspirational and emotional…. It touched our hear…Your beautiful 3 kids: Jack, Conor and Hailey are so lucky to have you.
We wish you all the best for you and all your beautiful family.
One word Amanda Amazing xx
Hi Amanda you are such a great mom. my boy who has asd high functioning had a bad reflux when he was a baby too. I used to rub his bum 300 times I used to count them. He is doing good now but we had very bad days meltdowns and banging his head a lot. Thank you for sharing your story, muchas gracias xoxo
Hi Cindy! Thank you so much for your comment. How is your son now? It is great to hear he is high functioning but I know that it is not easy going either. Conor is on the moderate/severe end of Autism and remains non-verbal but I hold out hope that someday soon I will hear his voice again.xx
I thought it could be link reflux with autism as I read before about it. He was bad as a newborn we only got 20 minutes he used to be awake all night. But he is good now, we are going to Keira too i find her great. Xxx don’t lose the hope he will communicate some day
Thank you so much Cindy xx Yes I always thought there was some link to reflux and autism but also with the gut aswell. I guess time and research will eventually tell. Oh Keira is amazing! If it wasn’t for her Jack would not be speaking today! x Thank you for your lovely kind words xxx
Greetings Amanda, this is grandma Consuelo writing you. As I read your experience, my heart started beating faster and my emotions took me back to my granddaughter who, like probably many parents, my daughter, husband & I didn’t(had no idea) what was wrong with baby. My daughter didn’t sleep much & neither did her husband. He would take her for walks in the carrier, etc. The child’s pediatrician told my daughter during a visit. “your child inherited her medical challenge”: sleep abnia, allergies, autism. Well, it took team work, therapy at home and special education. Most of all, 100% Love and understanding. Today, at 7 years old, in kindergarten, she still has many challenges. She doesn’t know she is disabled. She is loving in school, she greets everyone, everyone seems to know her. Thank you for sharing your experiences Amanda. It may be a lifetime challenge, but it’s a challenge of Love. Your son will always be precious. My granddaughter will always be precious. Love conquers! Muchas bendiciones!❤️Consuelo