The start of the double-edged sword

This is a story/blog type thing I wrote back in August 2008, it really just sums up how I felt at the time and now I have decided to write a blog so although there is a big bit in between after this I will start from more recent events, feelings etc.


My son Ben was a planned baby and very wanted, it had taken almost 2 years to conceive him so when I finally fell pregnant nothing could burst my bubble. I had Hyperemesis Gravidarum so I was really sick my entire pregnancy and lost 4 Stones in weight (luckily I have plenty to loose!). Benjamin Oliver was born on 16th November 2005 after a 5 day slow labour, but still I didn’t care, my perfect baby was here all 9lb 1oz of him. Things went from bad to worse in my relationship and my partner became more violent and controlling, nothing I did was right I had to do all the household jobs and everything for the baby. He worked and played computer games and if Ben dared to cry he would shout and scream that he couldn’t hear the television. Essentially I was a single mum but I had my baby who was perfect in my eyes. He was slow to gain weight and had a heart murmer but I never worried I trusted the doctors they know best.

All sleepless nights, a baby that would not be put down but didn’t care who held him, a partner who wouldn’t help, a family who thought I was coping so didn’t offer support and dirty nappies everywhere started to get me down. Then Christmas day at five and a half weeks old Ben smiled. He was normal, he has smiled at the same time as expected. It was pretty hard to accept though that he had smiled at Grandad and not Mummy but maybe I shouldn't let that get to me.

What will Ben grow up to be, a fireman, a lawyer, a doctor, who knows but I did know he would do something clever. I was determined he would be taught everything he needs I would sing to him every day, read to him, get him educational toys, none of the electric rubbish parents buy to entertain their kids so they don’t have to give them any attention.

At almost 6 months Ben and I moved to my mum’s house as the violence all just got too much when his dad had been hitting my beautiful baby too – he was 2 months old when he first hit him. I had to get him out, protect my baby. Ben should be sitting soon but all the upheaval maybe that’s why he isn’t doing it, the poor little on doesn’t know what’s going on its bound to put him back a little. I lied to friends whose kids were doing it and pretended ben was too, they would never know! Is he sitting yet? Is he crawling yet? Has he started rolling over everywhere? No, no, no what was wrong with my baby? Never mind must be the stress of being at my mums.

Then at 8 months old we moved back to my house after Ben’s dad had left. Ben was sitting up now – see I knew he would do it in his own time he is just a little slow. Is he crawling yet? Does he try to pull himself up? No, not yet but he has been through a lot he will do it in his own time. All of this time Ben never cared who was with him as long as he was not alone.

Then by 11 months still no crawling. What is wrong with him? Maybe he will just walk, so many people have told me this I start to believe it but something just tells me maybe not. I spend all day every day trying to get him to crawl. A few weeks later not long before his first birthday Ben crawled. Then choruses of everyone we knew “see I told you he would” and “what were you worrying for” but I just knew he wasn’t just lazy it was something else. Still no babbling though maybe that will come soon now too? Ben’s health visitor was so reassuring “they all do it in their own time try not to worry he will be fine”.

I started back at work when Ben was just over a year old, he went into a nursery but had to stay in the baby room “we only move them up when they can walk”. All the others were much smaller than my big boy was but they assured me he would be walking soon enough. The stress of being a single mum was getting to me, I had a new partner but only saw him at weekends. I wanted a baby to be proud of, to laugh with other mums about what he was saying, doing etc but no I got Ben. Why did he hate me? Why did he not want to fit in? He started saying ca repetitively so I stopped worrying he would talk soon why am I panicking. Ben also started to bang his head on the floor repetitively he kept getting bumps on his forehead. I left work and my partner moved in, I didn’t want my baby in nursery anymore, he wasn’t progressing there he would be better at home with me I would sing to him, read to him and we would catch him up soon enough if I tried hard enough. Before we knew it ben was almost 18 months and nothing had changed he didn’t have the normal 6-20 words so I persuaded the very reluctant health visitr to refer him to speech therapy. The speech therapist asked him lots of questions and basically said eh would get there in his own time, a speech therapist would come to help us learn to talk and sing to him as that would help if we did it “properly”. I asked could it be autism – I only knew a little about it but this was my biggest fear. Her response was “no I’m sure its not don’t worry about anything like that all kids get their speech at different rates he will catch up”. Well she is the professional I was wrong silly me worrying too much over nothing. I went to the doctors to get my anti depressants increased I was obviously just worrying and stressing about nothing.

At 20 months Ben spoke, he could say duck, car biscuit, night night, banana, not clearly but it was coming. They were all right I was worrying about nothing he was just a bit slow. Why wouldn’t he say mummy or no though? Maybe I am just being paranoid he is only 1 plenty of time yet. Then finally ben was trying to walk, my baby was normal why did I worry, how stupid did I feel now! Then it all started to go wrong. Ben’s speech disappeared completely, Ben changed as a child, wasn’t interested in anything anymore. Maybe he never was and I just kidded myself to think he was normal? I got referred back to speech therapy, put on a list so getting somewhere or so I thought. Eventually we saw a speech therapist who told me he was fine, nothing wrong. Obviously its all me getting depressed again I just see these things that aren’t there and worry over nothing.

Then I went to a Sure Start group for children with additional needs. In my mind I only went to reassure myself Ben was normal, looking back I feel so nasty to have gone with that attitude but that’s how I felt at the time. They were normal children – well what I knew as normal, they were like Ben, should they not have been there? Were they normal and I was confused about the group? Or was Ben different and they were too but they looked normal? I got talking to one fo the mums, here sons were like Ben but they were autistic. Is Ben autistic? Is their diagnosis wrong and they are just not as quick as other kids to develop?

I told my friends and family I think Ben might be autistic, “don’t be daft”, “he looks ok to me”, “he is just slow to develop”, “don’t worry” and my **** didn’t speak for ages he was too busy playing but he’s fine”. Was I wrong? Were they wrong? What exactly is autism? Is it just a naughty child whose parents have no control? Should I try harder with Ben? Should I go back to the doctor about my antidepressants?
We were referred to the paediatrician for Ben to be assessed so I guess I wasn’t the only one who thought something could be wrong. The staff at the sure start centre told me he was just naughty though and he was normal. Who is right a mum who this is their first child or someone who works with children everyday?

The paediatrician suspected autism and said this is most likely but wanted to rule out brain damage form his abuse as a baby. Had his dad caused all of this and then disappeared and never had to deal with the consequences? It was my fault I didn’t protect him well enough, I am a bad mum, should I phone social services and report myself? Ben had assessments, scans, and blood tests. We had to wait for results, can’t they fast track them? I need to know now not in months to come!

Then in May 2008 the answer came Ben is autistic. But with an answer there should be a solution surely? No solution, no answers just one word and referred for more support and lots of questions no one can answer. We live each day and night hoping things will improve but they feel like they are getting worse, at least I know I am not the only one living a life like this and I know it must be harder for Ben in a world he does not understand unable to talk. I still don’t have the answers, what will Ben become when he grows up? Will he need to live at home as an adult as he needs the support? Will he ever speak? Did I do something wrong to make him autistic? Am I a good mum? Could someone else do better? Should I try to find a better mum for him? Why me?