BEFORE he lost his ability to speak, one of the last words Conor Golden said was 'Mama'. After eight challenging years, Conor's family are celebrating a great gift this Christmas. Their little boy has found his voice. Working with therapist Keira Keogh, Conor said his first word – 'Hi' – in November. And now it's 'Ho, ho ho' all the way in this Mayo family's home this festive season.
His mum, Amanda McGuinness, tells Conor's story here.
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 myself 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 nine years ago that the little boy I loved so much would be born with a host of special needs conditions and to record every second of his little life as someday soon he would stop talking, that he would not say 'Mama' again, and he would leave to go into his own little world but he would come back to me, one day.
My lovely Conor was born with special needs. I was 29 and had never considered for a moment that the little boy I had carried so carefully would now have to face a world not ready for him. I had no idea what we were about to face together. I had dreamt of the things we would do together and with big sister Hailey, then almost two.
I remember the day Conor was born as if it were yesterday, because from that day everything changed for good.
Conor was born on March 8, 2010, in the middle of the night. I loved every single inch of my lovely baby boy. I promised him that night I would always be there for him, love him, mind him, help him, protect him.
I didn’t realise when Conor didn’t sleep that first night that it would be over two and a half years before he would sleep again, and only then once he had medication. I thought he would sleep once settled at home. What followed were the hardest, most heart-breaking years of my life so far; the most hard to talk about time of my life.
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.
NIGHTS ON THE ROAD
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 turns to stay up all night. I know now it helped him sleep because he has Sensory Processing Disorder (SPD) and had severe acid reflux. And when pushing wasn’t enough, I would drive through the night. 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 boy could not sleep, why I couldn’t help him. I just wanted it all to end.
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 tired, but the alternative was if I didn’t take him out of the house and drive, Hailey would be awake and my husband too.
So, I drove and cried my eyes out wishing for a miracle, a way to help my gorgeous boy sleep and feel better.
During that time from birth to when he was eventually diagnosed, 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. He eventually stopped eating at all for months at a time and 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.
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 completely isolated except for family and a few close friends.
We were all exhausted. Not sleeping for years had a huge effect on all of us. I had regular black outs with the stress. I remember having a constant sick feeling in my stomach.
My husband and I, we both were - and still are - totally exhausted. It is never ending when you care for a child/adult with special needs. They need you and you need to be there for them no matter what.
Hailey was exhausted too. She would often stay over at granny’s house to give her a break from everything.
Conor couldn’t sit up or hold a bottle until his first birthday, and didn’t stand or walk until he was almost two. He still can’t really feed himself; we help him. He is still so particular about food and his drinks that we always have a stock of the same food brands he will eat and the same cutlery he will let us use.
Even now he requires help in almost every way, from going to the toilet, to bathing, getting dressed. He does the best he can, but he will always need help.
He spoke for a little while after his first birthday, and could say Mama, Dada, Baba. He had a lovely soft baby voice, he would say "Mama, Mama, Mama", altogether, just like that.
How I loved the sound of his voice saying my name. I miss it everyday and sometimes catch myself waiting, holding my breath when I think he might just say it this time.
I wish I could go back and say all I wanted to him before he stopped talking. I would love to hear him calling me Mama again so much. But I guess you never get to know it is the last time your child will speak until it is too late.
I took it all for granted in the very beginning, that he would always speak as easily as you and I. I so wish now I had recorded him saying Mama. That is one of the biggest regrets of my life, and always will be.
I used to find it very hard to listen to other little baby boys or girls calling Mama when I went to the grocery store or an appointment with Conor when he was small. If I saw a little boy being held by his mum in the grocery store, I would find myself mesmerised by the beauty of it all. Some days I could continue with my shopping, others I would just have to leave where ever I was, put on my sunglasses and cry as I drove home, back to my gorgeous boy and best girl.
I can only describe it as waves of grief hitting you in the most unexpected moments and places. You are lucky enough to still have your beautiful child but the life and relationship you thought you were going to have with your child is gone now and you learn in time you have to accept a new way of life.
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 spent most nights on the road by the time he was 18 months old.
I remember the winter where everything was frozen solid. 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.
Conor and I have seen some beautiful sunrises together. 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.
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 boy finally got some sleep.
Conor was finally diagnosed with various special needs conditions, including autism, just before he was 18 months old. He was one of the youngest ever diagnosed with autism in the county at that time. I learned some years later that he was one of the most severe cases of autism they had seen back then.
In the years that followed, things were incredibly difficult for us as family as we struggled to help Conor. We had to learn the hard way - through trial and error. This was years before the likes of Facebook and blogs, so you really were on your own.
Western Care came on board and helped us find our way, helped Conor as much as he was able for. When he was almost five, he started in the fantastic autism unit in Knockrooskey National School and we have since seen massive progress in Conor. Both Western Care and Knockrooskey have helped Conor as much as he is able for. He had progressed in so many ways but still the words did not come. We were devastated.
I used to wake from my dreams so happy believing Conor could speak, then the reality would hit, that it was just that. The silence continued. Conor had no voice.
Later Conor’s little brother Jack was born and unbelievably he too was diagnosed with autism. He regressed and lost his ability to speak. We were shattered.
We continued bringing the boys to private therapists, trying to get them as much help as we could afford.
Then one day through my Facebook page, Littlepuddins.ie, a parent who followed by blog told me about an amazing therapist in Westport - Keira Keogh.
Jack started seeing her almost every day and within a few short months went from screaming the house down with frustration to talking. We were so overjoyed to have Jack talking, as before Keira, I just felt we were starting out again on the same road as we were on with Conor.
It was bitter-sweet to hear Jack speak as Conor watched on from the side-lines but could not express how he felt, if he was happy, lonely or sad. I could say "I love you Con", but my best boy could not say anything at all in return. He would give me one of his sad smiles and I would hug him as tightly as I could, hoping he could feel the love I felt for him. If I could have given him my voice I would have in an instant.
CONOR FINDS HIS VOICE
Our lives changed the day Keira started working with Conor. All our years of waiting, wishing, hoping and struggling were over. She worked closely with Conor and gave us 'homework' to do with him everyday. We didn’t know if he would ever be one of the lucky ones to learn to speak again like Jack, but we knew with Keira working with him, he had the best shot he was ever going to have.
Months passed and there was steady progress for Conor. His comprehension was coming on, his behaviours were improving, he was becoming more independent and most of all he started to try to make sounds. He was so much happier. We literally couldn’t believe how lucky we were as a family to have this amazing lady working with our sons.
Almost eight years of praying, wishing, hoping and crying for a miracle came in late November this year. During a session with Keira, I was recording as I always did (to look back on for progress) when out of the blue Conor said his first words. He said "hi", "who" and "ho ho ho" (for Santa). Just like that, all the years of waiting and hoping were over.
"I can barely remember what happened for the rest of that day we were so happy! There were a lot of tears but this time they were happy tears. I felt a massive sense of relief lift from my shoulders.
I shared the video over on my Facebook blog and within hours it had reached over 22,000 views. People who had followed Conor’s journey from the beginning were so happy for him and us.
Conor’s big sister Hailey was so excited, she burst out crying and gave Conor the biggest hug. She wouldn’t let him go. I was so happy for her as she waited just as we had, to hear her brother speak. She has always been so close with Conor, you will often find her in his room reading him a story or helping him work his iPad.
I don’t know how to find the words to thank Keira for what she has done for Conor and for us as a family. Conor has a very long road ahead of him before he will speak properly like you and I but for the first time ever, we now have a starting point. Before Keira came in to our lives, I was losing hope that it was ever going to happen for Conor.
Since that day he said his first words, he has been waving "hi" to everyone that comes in to the house. The way he beams when he knows we have understood him, I can only call it breath taking as I don’t know how he has felt all these years locked away inside his mind. Having so much to say but no way to say it. He has the key now and that is thanks to all the work and guidance he has received from his therapist Keira Keogh. We have a lot of work to do to help him continue to learn to speak but I know with Keira’s help, he will get there.
I don’t know what I would do if the word "Mama" fell from Conor’s lips. He has always been in the shadows in a sense, everyone around him able to speak, he left behind. I would tell him he has always been my best boy, that I have loved him from our very first moment, that I would be nothing without him. He is my hero and everything that is good about me is because of him.
Whether he says Mama now or he never will, I will wait for him and love him long after my dying day.
I love you Con, now and always.
* You can follow Amanda's blog at www.Littlepuddins.ie.