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In Her Words...

"18 years old finding out you’re pregnant was really difficult for me. I still felt like a child myself but I grew up really quickly. I turned 19 while I was pregnant and all of a sudden I’d gone from a care free teenager to managing my own home, a car, work. I was not prepared whatsoever. Jacob’s pregnancy was relatively easy, all I craved was sour foods. Jacob’s dad used to sit and peel lemons for me so I could eat them like tangerines and I burnt my tongue eating stupidly sour sweets. No heartburn, no back pain, no sickness. The perfect textbook pregnancy. Until… the labour"

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Oh my gosh it was gruelling. I don’t even remember how long the labour was but it felt like forever and by the time it came to push I was exhausted and struggled but after threats from the doctors about an assisted birth with forceps etc I managed to push him out and he was the most beautiful 7lb 12oz baby. He had a head full of beautiful blonde hair.

The first few months of his life was perfect. We got home and settled into our home and new life really quickly. I fell pregnant really quickly again when Jacob was around 3 months old which meant I would have two babies within 11/12 months of each other. Mental I know.

When Jacob was 6 months old we woke up one morning and I noticed that his fontanelle (soft spot) seemed swollen so I made an appointment with our GP. The GP was concerned and sent us straight to Manchester Childrens Hospital where they were concerned about meningitis. Then I had to hand him over to a doctor so they could take him for a lumbar puncture- they said it would be too distressing for me to watch so would rather I wasn’t in the room. I sat in a waiting room with my Mum in tears Googling what a lumbar puncture was which was horrifying. After what felt like forever Jacob was brought back to me. The LP confirmed meningitis and the doctors said he had too much fluid around his brain but had drained it. He was treated for the meningitis and eventually we came back home.

We carried on our daily life as normal, Jacob’s dad got a new job which meant he would be in London 90% of the time so I found myself as a solo parent to two babies. As my daughter Lainey got older I noticed she was doing things that Jacob wasn’t. She was babbling, using gestures but my concerns were fobbed off by everyone with the whole “girls are quicker learners than boys”. Because Jacob was such a poorly baby we did everything for him, we anticipated every need so him not requesting things etc didn’t seem an issue until Lainey started overtaking him developmentally. When he reached 2 years old I spoke to a Health Visitor who referred Jacob to a paediatrician due to his lack of speech. If I thought I’d had it tough up to now, nobody could have prepared me for the battles I had to fight after this point.

At the first appointment the paediatrician asked me if I had considered that Jacob may be autistic. I shrugged it off. I wasn’t educated and was quite defensive, looking back I think I was struggling to come to terms that something bigger could be happening rather than him just being a bit behind on milestones. From here we had regular appointments with the paediatrician and Jacob was referred to a Speech Therapist. Backwards and forwards between the two of them and what feels like a million appointments. From his initial appointment it took 3 whole years to receive a diagnosis. But in that time there was no support. Services wouldn’t help without a diagnosis. I couldn’t just go to a play centre or kids group because Jacob reacted to the noise and business. He would lash out at other kids for being too close to him and managing him and another toddler by myself was traumatising. I became a recluse and the only respite I got was Jacob attending a local family run play group nursery setting who supported me massively with his needs. But funding meant he could only go for a few hours a week.

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Soon Jacob was approaching school age so was put under the care of an Educational Psychologist. His nursery started the EHCP process and the EdPsych came to do observations and wrote reports to support a SEN setting placement for Jacob. Due to lack of support from the area SENCO the EHCP proposal was submitted too late and the local council refused to place Jacob in a suitable setting because he was still 4 years old and had no “legal requirement” to find him a place anywhere. He was too old for the nursery so again he was just stuck. Through word of mouth we got in touch with a local childminder who specialised in SEN children and managed to get Jacob in with her. The year he was in her child care he thrived. She taught us ways of communicating and I could never express how grateful my family was to her.

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Jacob’s EHCP was finalised (finally) and he was allocated a place at a local SEN school. Although he had missed his entire early years education because of failures from the council and SENCOs. He was due to start in a Year 1 class, he had his uniform ready to go and then… COVID. It delayed everything because the schools closed for lockdown. Throughout all of this Jacob had started to have asthma attacks and allergies to seemingly thin air so we were on waitlists to see doctors and his illnesses meant he was immunocompromised so had to shield. I was working for the Ambulance Service which meant going to work was potentially putting Jacob as unnecessary risk and it was gruelling for us as a family. Jacob eventually started school when lockdowns ended and he will be starting Year 3 in September. The difference in him is huge. From him being completely non verbal to now repeating words and using PECS to communicate his home life is so much different and there are less frustrations for him because although limited, he has the means to be able to communicate.

Going back to Jacob’s asthma and illnesses, he was a very poorly boy in short little life. He had tonsillitis literally every 2/3 weeks. Nobody would consider removing them because he hadn’t had antibiotics an x amount of times but here’s the issue- Jacob has an extreme aversion to liquid medications and has meltdowns at the sight of them so nobody bothered prescribing them but this then meant he didn’t meet the criteria for a tonsillectomy so he had to carry on suffering.

In 2019 we went on a family holiday to Turkey, booked a boat trip, a normal family holiday. Jacob seemed off that day but we assumed it was the heat. As the boat the left the harbour Jacob went limp and floppy and began having a seizure. The Turkish men on the boat snatched him away from me and took him to the captains room with aircon and kept his airway open because he stopped breathing. Then a speedboat came and the Turkish men ran to the speedboat with Jacob with me and his dad in tow. We got back to the harbour where an ambulance was waiting for us and took us to a local hospital where it was said that Jacob’s tonsils were so swollen they had restricted air flow to his brain and caused the seizure.

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Fast forward we returned to the UK and demanded his tonsils be removed and eventually they agreed.

Jacob now still suffers with asthma which is managed with inhalers and he has allergic reactions to literally everything which we can’t manage because he won’t take oral medication.

Recently we had another baby, another little sister for Jacob. It was unexpected but our life is chaos so what’s one more added into the mix?

My proudest moment of Jacob was when we brought his sister, Shiloh, home from the hospital. We didn’t know what to expect as he’s never been around babies. Would he manage with the crying etc. As soon as we walked into the house he ran over to the car seat and was trying to open the clasp. We sat him down and put the baby on his lap and he kissed her head and had the biggest smile on his face. He adapted so well almost immediately.

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Having a child with additional needs sometimes mean you lose yourself. You’re not just Mum anymore. You’re a doctor, a nurse, a therapist, a carer. You lose so much of yourself fighting professionals and fighting the system it wears you down. It feels like you exist and nothing more. As Jacob got older and bigger, his needs and behaviours also grew to the point I had to quit my Ambulance job because I was struggling with Jacob all day and then dealing with poorly people all night. It wore me down to the point something needed to give. Work needed to give or Jacob did and obviously the latter will never be an option.

 

For the last 10 years I’ve been a Scout Leader. I sort of got dragged into it because my Dad has run the group for the last 30 years and it’s family run. So when they wanted to open up a Beaver section for 6-8year olds of course I was the only leader option. The one hour a week is my escape and helps me provide opportunities for the kids in my local area. Through the years we’ve had children with additional needs come through the groups and although scouting is inclusive, it doesn’t always work. So recently I had an idea and I am now in the preliminary stages of creating a new Scout Group solely for SEN children. I’m obviously very passionate about it and my intentions are to provide these children with life skills in a safe environment that they wouldn’t otherwise have access too whilst their parents can have an hour to breathe. I live this life too, if I can give a SEN parent even just an hour a week to themselves then I’m going to. Watch this space!

 

There is obviously more to our story, 7 years worth of arguments with doctors, 7 years of struggles and tears from everyone. But there’s also 7 years worth of smiles, 7 years of watching my whole family educate themselves and adapt to Jacob’s needs. We don’t need Jacob to fit into this world, we need to change the world to fit Jacob. The road to diagnosis is daunting for everyone but as rough as the road gets there are always 10x more brighter days. The days your child speaks for the first time or uses the toilet for the first time. As hard as it gets you have to keep fighting for your child because if you don’t.. nobody else will.

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Due to having to quit work and having PTSD from holidays abroad, the options and finances for a break are very limited so when The A World started promoting funded holidays I jumped at the chance. We all get a well deserved rest and Jacob still gets to go on holiday.

 

One of the best things about The A World is that siblings are always included. Being practically born a young carer can be so isolating for young children, I know Lainey has really struggled over the years. She doesn’t get the attention she deserves sometimes and Shiloh will grow up the same too, so to be able to attend events like a Christmas party in a play centre and Gulliver's World and be able to take Lainey and Shiloh with us and they still get to enjoy it means everything.

I struggle with a balance of making sure everyone feels included and lessen the “burden” for Jacob’s siblings but it’s so difficult when your oldest child is so medically complex and requires your attention 120% of the time. So the fact we have access to an organisation that also puts my girls at the forefront is indescribable.

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Thank you for listening to my family's story,
Beth
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