The world with Alfie
My pregnancy was unexpected and truth be told, we weren’t ready to become parents. I remember being “on my period” with some cramps that felt a bit different (which I later found out was an implantation bleed) chain smoking and drinking gin cocktails at the Crazy Bear in Beaconsfield for my birthday. I think in my heart I knew I was pregnant but refused to believe it. I went to the doctors a couple of days later for birth control and scooted off to the toilet with my plastic pot to do a wee for a pregnancy test. I’d dropped it into conversation that I couldn’t remember when my last period was and she suggested a test to be sure.
I shuffled back, I think still with one headphone in and music playing. I watched her transfer a couple of drops to a pregnancy test and my brain completely blocked it out. I started talking about my job, the weather, anything and everything, my mind trying to pull me out of the room. “Congratulations!” she said and everything stopped. “Oh fuck,” was the first thing to come out of my mouth followed shortly by, “My mum’s gonna fucking kill me!” Of course she laughed, to her I was a 25 year old married woman with a job, a house and a car. I mean I’d JUST been talking about my honeymoon to the Dominican Republic so why would she think I’d be worried about my mum?
I went to the EPU for tests. Having revealed the pain and the bleed id had, they wanted to check everything was okay. A little black circle appeared on the screen, “That’s where your baby should grow, all being well.” I asked 4 different people what it meant, why there was no baby there already, what I should do for the baby to grow, when I could come back to see if the baby was there and a million other questions. Of course nobody could give me an answers, I was 6 weeks pregnant. At 8 weeks I went back and there he was, a little jelly bean bouncing around. I actually was pregnant.
I had all the routine tests during pregnancy but I never paid attention to them really because I didn’t careI never connected with him in utero and never enjoyed being pregnant. I never felt the enjoyment of feeling kicks, I just wanted them to end. I didn’t plan this pregnancy and just couldn’t get past feeling gross. I remember thinking that I didn’t want him so many times. I watched my body grow and expand beyond my control and hating myself. It was intense. Prenatal depression is no joke and I had no idea how much it actually consumed me until I was out of it.
Alfie was born and I went through the motions of being a mum. Nobody teaches you how to love a baby you didn’t plan to have, and soon enough postnatal depression followed. I just about kept my head above water. I got a lot of shitty comments when Alfie was a baby; he was born with very fair skin, blue eyes and blonde hair. A lot of people would ask if he was mine, health care professionals would make inappropriate comments and my anxiety increased. I threw myself into work when he was 12 weeks old just to save my sanity. I knew he’d be fine, he was a very independent baby, he didn’t need to be held much, he was happy by himself nestled in some blankets or propped up in a pile of cushions. He never looked for me or looked at me when I fed him and so I knew he’d be able to bond with just about anyone.
Alfie was an easy baby. His sleep wasn’t great, but he didn’t demand much of anything. He was quiet, very relaxed and would often wriggle away to enjoy his own company. When I’d pick him up from nursery even as a tiny baby, he would only ever gravitate towards one member of staff and never any children. He seemed happy; content is probably a better way of putting it. I wasn’t concerned that he was close to his Key Worker, I mean surely that’s how its meant to be? I needed us both to trust her and he clearly did.
A few months later, I went back to Uni and made friends with someone who had a child a couple of months younger than Alfie and we spent a considerable amount of time together and that’s when things really started to click in my head. His personality and demeanour were completely different to Alfie’s but I put that down to him having an older sister (and individual differences of course). As they both grew together, they became opposites. Alfie withdrew, happy to sit and play alone, resisting any opportunity to play with his new friend. I would spend time with them both almost everyday in my friend’s house and as desperate as her son was to play with Alfie, Alfie really was having none of it. As her son gained more words, Alfie lost his and although I was worried, I painted on a smile. I brought it up with nursery, but they said countless times they had no concerns.
I contacted a health visitor and she snubbed me off saying boys are lazy and that he’ll catch up. She focussed on his sleep and said that I needed to be more like my partner. I needed to relax, and Alfie would come to me, he’d start calling me “mama” (something he didn’t do until he was nearly 3). I asked about his speech and she asked if I ever gave him chance to speak, if I every let him be alone with his thoughts and think about things or if I always spoke for him. I asked about his lack of eye contact and she told me that if I was too overbearing it would make him uncomfortable and of course he wouldn’t look at me. I asked about his lack of affection and she said that it was “all the rage” to be “skinny” but “little boys don’t want to cuddle skinny mamas!”. I took it all in, I was so desperate for answers as to why my little boy was so different, even though deep down I knew. I adapted, I tried to smile more, I did everything I could to put weight on (something I’ve struggled with for years), I tried to relax, but nothing seemed to change. If anything, he got worse.
He became mute. For 6 months my baby never said a word and the only sounds that he made were to cry or laugh. I had just started a new job and thought it may be the change, but he had been in nursery full time and I knew it wasn’t me. I knew something was wrong and I took him to the doctors with my concerns. I remember it clearly, 2 months before his 2nd birthday being in the doctor’s office and her listening to me. She documented everything that I said and agreed with it all. I couldn’t believe it. A sense of relief washed over me, and I knew that if she could agree then others could too. She referred him to Speech and Language Therapy and a Paediatrician. We waited 4 months for those appointments to roll round and the SALT fobbed us off with a “Wait and see” and the Paediatrician we were given was in the wrong area and the wrong trust so couldn’t help.
I threw myself into action. I changed Alfie’s nursery and within a week we were brought in for a meeting to discuss Alfie’s development. “Alfie doesn’t seem to have progressed developmentally in the same way as the other children.” I cried, I sobbed, huge tears of relief rolled down my face that someone else could see what I could. I was asked if I consented to the Early Years SEN team being contacted and I agreed. We were finally getting somewhere. We met with his soon to be Inclusion Worker and relayed everything. She asked me what I thought, and I said, “I know he’s just turned 2, but I think he’s autistic”. It was the first time I’d said it out loud and it shook me to my core, but I carried on as if it was nothing. She met him and agreed that there was “something there” which also included Sensory Processing Difficulties.
I went home and spent hours trawling the internet. Every list I found of “traits” matched him perfectly. I was looking at my child differently, I was looking at him with a strange mixture of confusion and understanding. I asked around at work, I spoke to our in-house SALT and OT who gave us some exercises to do with him. Nothing seemed to work. I spent months contacting the NHS SALT who never called me back. I felt persecuted because as a working mother, I wasn’t contactable between the hours of 8:30 and 4:30 and those were the only times they could call. I was lost. I knew from my research that he would need an Occupational Therapist so had a referral put in for him. Rejected. There are no Occupational Therapists who can assess in my area for a child under 7. 2 further Paediatrician referrals were rejected. I was losing hope. I was watching him become more frustrated every day and watching him change and I didn’t know what to do.
I decided to apply for Disability Living Allowance. He needed things that I just couldn’t provide on my salary. He needed specialist resources for chewing to help prevent him bite his arm, sensory resources, ear defenders, different clothing (he stripped anything loose fitting) and having DLA meant we could get a MAX card. It was then I realised that he really was different, I could answer all the questions in detail and even added an additional 20 pages. I had reams of evidence to send alongside it. The confirmation that he had been awarded for 2 years was confirmation that I had a disabled child.
I couldn’t sit waiting for the NHS to pull their finger out. We weren’t getting anywhere. On the suggestion of some wonderful internet friends, I bit the bullet and fundraised and raised more than I could have imagined (GoFundMe took a HUGE chunk of it). I had enough to get him a private Occupational Therapy Assessment and a private Speech and Language Therapy assessment. They identified that he has Sensory Processing Disorder, and both believe that he is autistic and needs to be assessed for diagnosis.
So now we wait. Every week there are appointments to follow up and paperwork to be done. I’m constantly on the look out for changes developmentally, whether this is progression or regression. Everyday is therapy in our house, whether it be activities from his sensory diet, teaching him to understand how to use PECS or physio exercises to work on his balance. Going out can get stares from people wondering why they’ve passed me in IKEA twice and he’s still screaming on the floor rolling around with a blank expression or backtracking to get a good look at his neon green ear defenders. As if doing a degree in Psychology and Child Development with a toddler in tow wasn’t enough, I’m currently doing an EYFS Teaching Diploma to get more understanding of the framework used to help him progress.
Motherhood for me isn’t sticker charts and potty training, it isn’t random conversations about things he’s noticed in the distance, it isn’t signing songs together or playing together. My son can’t do any of those things right now and it’ll soon be his 3rd Birthday. Motherhood for me is a fight, a fight to get my son the things I know will support him in a world that isn’t made for him. It’s a constant battle in a system that wasn’t made to support him. I’ve said it before and I’ll say it again, until you’re the parent of a child with a hidden disability, any disability, you’ll never know what its like. I still struggle some days; he doesn’t cuddle me, he doesn’t kiss me unless I ask, I’ve never had a conversation with him and “I love you mummy” is something I won’t hear for a while. I love him though, I love him more than I love myself, with a deep all-encompassing ferocious love that shocks and stuns me into believing more everyday that I am the right mother for him.