Last week saw me launching the NICU Mum medical files where I was honoured to share Carly and Isla's NICU story click here to read part one, and part two. I wanted to create a platform for others to share their stories, it might not be a NICU story but you could have had a difficult birth, faced a difficult illness or like Elijah suffer from a CHD. It is where we can relate, educate, support and raise awareness. From going through our journey with Elijah I took comfort from reading others stories. These are all honest parenting stories from the front lines.
Lisa has been writing over at mrssavageangel.com for nearly three years. She is a stay at home mama to her 4 year old son Oscar. She lives with Oscar and her husband Ben in leafy Surrey. She writes about parenting, Oscar’s Autism diagnosis and weight loss.
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| Lisa 'Mrs Savage Angel'. |
Note: Autism (according to the National Autistic Society website) is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them.
Lisa and Oscar's story
I guess on some level I’ve always known Oscar was different. Born in 2012 by emergency c-section, he refused to breastfeed, could roll both ways by 16 weeks and was walking unaided by the age of 10 months old. He played differently to his friends too, either turning his toys over to look at the underside or lining up his beloved cars. But our first real concern came about when Oscar’s speech development was very obviously not keeping up with that of his peers. By the age of 18 months he would repeat certain words if you asked him to, but would not use them spontaneously. Shortly after 18 months he stopped doing even that. Everyone tried to tell me it was normal, that some children don't start talking until much later, but I just knew in the pit of my stomach that this was not just a work-a-day speech delay.
I asked the Health Visitor to come and see him at 2 years old. She tried to fob us off with the same ‘some children talk later’ guff but when nothing had changed a couple of months down the line I called her back and she referred him for a hearing test and to a paediatrician ‘just to cover all possibilities’.
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| Baby Oscar |
Our first visit to the paediatrician was one of the most heart breaking experiences of my life. He performed almost all of the tasks he was asked to do, but she was concerned about his lack of connection to her or the social skills toys. Towards the end of the appointment she leant forward and asked if we had heard of Autism. When we said we had, she said, although she couldn’t diagnose him on the strength of one meeting, we were “probably in that ballpark”. I was devastated. Properly broken. I had expected her to say he was too young to tell and to come back in a year. But here she was telling me my beautiful boy wasn’t perfect, wasn't even the child I thought he was. For a week after that appointment I couldn't look at Oscar. Suddenly I couldn't be with him, didn't know what to say to him, what to feel. I was scared of my own toddler son.
Because you see she used the word probably and not possibly.
I cried. Long and hard. It was so awful and no one could help. No one could say or do anything to help. The paediatrician had given us a massive list of websites and resources to look at. It was well intentioned, but far too heavy for the state I was in. I went to the National Autistic Society website, on the her recommendation. It was the worst thing I could have done. Firstly there was too much information, I had no idea what I should be looking at, and secondly they are a charity, they have to talk about all negative stats to get their fundraising message across. But all that I could focus on was 70% adults with Autism Spectrum Disorders/Conditions are unemployed and how people on the Spectrum don't feel things the way other people do. Brilliant. So my boy would never be financially solvent and he didn't love me.
Because you see she used the word probably and not possibly.
I cried. Long and hard. It was so awful and no one could help. No one could say or do anything to help. The paediatrician had given us a massive list of websites and resources to look at. It was well intentioned, but far too heavy for the state I was in. I went to the National Autistic Society website, on the her recommendation. It was the worst thing I could have done. Firstly there was too much information, I had no idea what I should be looking at, and secondly they are a charity, they have to talk about all negative stats to get their fundraising message across. But all that I could focus on was 70% adults with Autism Spectrum Disorders/Conditions are unemployed and how people on the Spectrum don't feel things the way other people do. Brilliant. So my boy would never be financially solvent and he didn't love me.
Worst. Week. Ever.
To start with I chose not to tell anyone anything. But carrying something so weighty nearly crushed me and after a while it became clear keeping the secret was breaking my heart more than the secret itself. So I told a friend. The relief was palpable and the more people who knew, the less scared I felt. Which makes sense if you consider the power of a secret lies in its keeping. I thought if people knew they'd gossip about me, but when I finally told some friends they couldn’t have been any more supportive and I realised hiding what was going on was only hurting me. I also realised early on that I really don’t care what other people think of us!
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| Lisa and Oscar |
We spent the next six months getting him assessed by various professionals, who wrote up reports from all kinds of angles. When it came to his MultiDisciplinary Assessment (diagnosis meeting) we all sat round, seven of us in a hot room, discussing my 23 month old blonde haired, blue eyed baby boy. No one said anything I didn't already know or agree with, which was relief. Then paediatrician asked the other professionals ‘If you walked into a room of children would Oscar immediately stand out?’ They all agreed he would, and so while Oscar sat on the borderline for a lot of the markers for Autism (mainly due to his age), the overall feeling was that a diagnosis of Autism Spectrum Disorder (as it is officially called) would be appropriate.
My world didn't crumble the way it did the first time round. I think because I knew it was coming I took it more stoically. Having the validation of a diagnosis also opened up doors to support we just couldn’t have got him without it. I have seen a few raised eyebrows at the fact we got him seen, and diagnosed so early, but more and more the evidence is showing that early intervention is key. As a clever friend said to me “why wouldn't you get him all the help you possibly can?”. And she was absolutely right!
My world didn't crumble the way it did the first time round. I think because I knew it was coming I took it more stoically. Having the validation of a diagnosis also opened up doors to support we just couldn’t have got him without it. I have seen a few raised eyebrows at the fact we got him seen, and diagnosed so early, but more and more the evidence is showing that early intervention is key. As a clever friend said to me “why wouldn't you get him all the help you possibly can?”. And she was absolutely right!
If I had any advice to give I would be if you suspect something is amiss, don’t let fear put you off talking about it with the professionals. You know your child and you know in your heart if there's something that needs investigating. Putting it off and hoping it’ll go away might work, but what if it doesn't? Wouldn’t it have been better to get the right people on your support team asap?
Post diagnosis I would say be easy on yourself. The first year (in my experience) is hard. So very very hard. The impact on you as a parent cannot be underestimated. The amount of services and people and forms that will suddenly enter your life can make your head spin. And when it all settles down a bit you may be left feeling more bereft than you ever imagined. It took me much longer than I anticipated to even start to comes to terms with his diagnosis, but once I realised that's what was happening I started being kinder to myself.
Read blogs and books and whatnot by all means, but remember your child’s Autism is theirs alone. You may not recognise your child in anything you read, and that's OK.
Autism is teaching me all sorts of things. And not just about Autism. I think the main thing I’ve learnt is to be a more appreciative person, because I appreciate every small achievement so much more than I would have done if Oscar didn't have his diagnosis. Every word he's said, every thing he's done, I take nothing for granted (I hope). Waiting three and a half years to hear the word mummy, will do that to you :)
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| Lisa with her lovely family |
Please check out this amazing lady's further journeys via her social media and blog;
If you have a story to tell and want to be part of the NICU MUM medical file guest posts please contact me!
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