Wonderful Women: Mum of three, ASD and Faith

This Wednesday we have a great feature from Caroline. She has three children, and has been a mum for the last 23 years, but has been caring for little people for a lot longer!

  • Can you tell us a bit about yourself?

Hi, I am one of three children. I was born in 1960 – At the time you don’t think you are in an iconic decade! I went to Chichester to do my Teaching Degree. At that time I had no idea I was being equipped to raise my future children. I taught for 13.5 years before this privilege came to pass.

  • One of your sons is diagnosed with ASD. Can you tell us what the process of getting his diagnosis was like? Did you know much about ASD before he was diagnosed?

As a parent, you are very aware if there is anything not quite right with your child’s development. James was a very active child, with little concentration. Although he started to talk, he didn’t start with the classic words; Dad and Mum etc, but stared at bright things. His first word was “star.” He went from eating everything until he turned 2 years old, then became very fussy and certain foods made him hyperactive.

 He went to playgroups and nursery but he played how he wanted to. He found it difficult to do school type activities and wouldn’t draw or write anything until he was 5 years old. He loved energetic play. Once on a trampoline it was difficult to get him off. His fine motor skills were not so good. James didn’t sleep well he didn’t sleep through the night until he was 2 and a half. I asked for James to be seen by a professional on starting school. 

From his medical exam, anomalies were present and he went to the hospital for tests. They thought him too young to be given the label ‘autistic’. He also saw the Nutritionist at the hospital as he ate so little.

 His Special Needs Coordinator who came from London when J. was in Yr 3, verbally spoke of his behaviour being ASD. It was only when he refused to go to school in Yr 5 that the school paid more attention. James did not disrupt the class as his hyperactivity had become anxiety. He couldn’t cope any longer being in a school setting and was referred again to the Child Development Team by the school. Still nothing for another year. Even though we pushed, nothing happened until he was properly assessed before going to Secondary School.

 His test results were classic scores. His language scores were very low. He got a Statement of Education. Very frustrating! Six years waiting, but we were so pleased with his diagnosis. He wouldn’t manage without extra support. He had some specialist language tuition as well to try and catch up. Bullying was ongoing in some form and James was only safe if he didn’t go on the playground. 

From the age of 5 onwards I learnt everything I could about Autism. Watching programmes, You Tube videos, Autism charity pages etc. and being a teacher helped, as you learn a lot about child development.

  • Do you have any advice for families going through the diagnostic process?

Don’t give up! Keep pushing. See your GP. We went along the educational route and it took longer. In many ways you are teaching teachers about Autism because it isn’t always on the Teacher Training Syllabus and unless they have someone they know with it, they don’t know what to do.This May have changed now.

  • How are you helping your son transition from being a teenager to being an adult?

Liaising with the College. Each student is unique with their own needs. James has a Health and Education Plan with set things the College needs to put in place for him. Our role is making sure tutors know these. Exam support is vital as he has his exams in a room by himself or small group, with more time. James uses a computer or laptop. At home we make sure we give opportunities for him to express where he is having difficulty and how we can help with hygiene, eating properly, the importance of sleep, finishing college work on time and not handing it in late, the need for social input and relieving sensory issues. Etc. We also make sure we communicate any issues to the college immediately so J. Doesn’t become stressed.

  • Have you had to face any stigmas since your son was diagnosed with ASD? What were they and how do you respond?

Yes, we have been seen as over protective. People who don’t understand Autism would see you as doing too much for your child.

The alternative is to watch your child vegetate as they don’t want to do anything that they are not comfy with.Fear of going to school, fear of going out, fear of going to a friends party, fear of crowds and being fearful of loud noises – James’s sensory difficulties only exasperated these situations. James’s carefree hyperactivity turned into anxiety from the age of 8 years. Before that he was seen as naughty and unable to access and participate in the more academic areas of school. Only certain members of staff could settle him if he was upset.

I am very sensitive to the comments made by people. Having the diagnosis changed that. I went from a back foot position to making those around us aware of his difficulties and making sure he got what he needed from his teachers and support staff. I have always explained his difficulties but with the diagnosis you speak with more conviction and authority.

  • it can be challenging enough to care for someone with additional needs, but you’ve also spent time caring for your husband at the same time. What motivates you on a difficult day?

My faith motivates me on a challenging day! Love and forgiveness. Only God sees all you do when no one is around. He helps me daily to do what I need to do and gives me the wisdom to do it. This is true today too. This is not easy though, but perseverance and discipline of the mind is important.

Prayer is so important. Philipians 4 v5-7 continue to be with me daily.

Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

Philippians 4:5-7 ESV

I just love being a mum. All aspects. When you do something you love for people you love you go the extra mile.

  • You work with an amazing group called TLG. Can you tell us what they’re all about and why you decided to get involved?

TLG stands for Transforming Lives for Good. It is a Christian Charity. My children are grown up now but the joy of working with children is still just as strong. This is a way to help a child and have the joy of helping them.

As a coach I get to support one child, once a week for one year. The child may have a difficult home situation or a difficulty in school. We come alongside the child and support them through it.

  • What are your favourite pastimes and hobbies?

My hobbies are jewellery making, crochet and various arts and crafts. I also love to sing and dance and do Pilates.

  • If you could give your younger self some advice, what would it be?

Take one day at a time. Don’t be so hard on yourself. Enjoy each day and focus on the good. Put your relationships first.

  • Is there anyone who inspires you that you’d like to nominate for our wonderful women feature?

I’d like to nominate my friend Diane. She is a wonderful mum to 6 children, she runs a children’s group for the church and has lots of students stay with her over the summer!

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What Hyperemesis Gravidarum meant for me

This week, I spoke to my lovely friend Becki about her experience of Hyperemesis Gravidarum. For those of you who don’t know, around 10,000 women in the UK suffer from Hyperemesis Gravidarum (HG) every year. It is often dismissed as normal morning sickness in pregnancy, but in reality can leave the women who experience it with PTSD, a torn oesophagus, burst blood vessels and eroded tooth enamel. 



What did you know about HG before you were pregnant?

I can remember reading a news article online about the Duchess of Cambridge suffering from it when she was pregnant with Princess Charlotte and feeling sympathy for her, but not really understanding exactly what it was. It was initially described by the media as “extreme morning sickness” which I’ve come to learn is not the case at all. I knew next to nothing and I didn’t think I’d ever need to educate myself. My friend Roo has also suffered with it, but I had no idea to what extent it affected her- it was pure ignorance. 

 What treatments were you offered through your pregnancy to combat HG? Did they work?

When I was finally diagnosed in September 17, I was initially prescribed cyclizine and ondansetron-both anti-emetics. I was advised to take them in tandem with each other, but the ondansetron soon ran out. It’s the more expensive for the NHS to prescribe. Unfortunately for me, cyclizine didn’t do the trick on its own. I continued to take it, but it wasn’t effective and I ended up back in hospital a few times, quite poorly.  People did make suggestions for foods that helped them. There were some foods that helped for a time, but my body seemed to tire of them really quickly and I’d end up not even able to think about them, let alone eat them, without throwing up. 
In the end, rest and putting my body and it’s needs first was the only thing that kept me going. It meant missing out on a lot of stuff and sacrificing things but I needed to be selfish.

What strategies or coping mechanisms did you employ to deal with your HG?

Hypnobirthing techniques and mindfulness breathing really helped, especially when I felt completely overwhelmed emotionally.  Baths helped too. Washing my hair always made me feel better again after feeling really lousy. Having a risk assessment and plan in place at work, as well as a few key people I trusted who I could warn if I was having a bad day and they’d keep an eye out for me. 

 What was your HG like at its best and worse?

At my best- I could manage a nice meal and a day out and go to bed and sleep without being sick. Our anniversary weekend away was one such time.
 
When it was bad- I remember kneeling on my bathroom floor at 3am, after being sick for the 7th time that night, crying and apologising to my husband for the umpteenth time, and just wishing I hadn’t gotten pregnant. 

At its worst – We thought we were losing our baby, and could do nothing about it. 
 

 

How did HG affect your mental health?

It made me feel so guilty. All the time. Guilty that I was possibly and inadvertently harming my baby, that they were suffering (they weren’t), guilty for putting my husband through it, guilty for bailing on parties and birthdays and events, guilty for being angry at people who just didn’t understand and made flippant comments, guilty for wishing I wasn’t pregnant, when I knew full well I had friends who were struggling to conceive. I felt guilty for myself, that I wasn’t having the pregnancy I had envisioned and I felt like I’d cheated myself somehow. 
 

 What do you wish people knew about HG?

That it isn’t “bad morning sickness” or even morning sickness at all. It’s a genetic and hereditary condition that affects around 1% of pregnancies and has an 84% chance of recurrence in subsequent pregnancies. It’s so debilitating that some days getting out of bed is hard; keeping water and food down is hard. I lost weight in pregnancy because I struggled to keep things down- that was a huge worry. Some women report being sick of 50 times a day. 

Personally, I wish people knew how lonely HG is. It’s so lonely sitting on the floor of your bathroom crying because you’re in pain from the stomach muscles used to be sick, or your teeth ache and throat hurts from the acidic vomit. It’s hard but I promise you, it does go. Within minutes of her being born, my nausea lifted and I honestly felt instantly better. 
 

How can family and friends best support you if you have HG?

  • Be there. My husband was a complete and utter rock. He was up with me every day and  night no matter how many times I was sick; he rubbed my back, held my hair, let me cry and didn’t judge or make me feel like I was doing a bad job. He helped educate those around us who just didn’t know and ensured I was supported at work. Having a support network was one of the most fundamental blocks we needed during our pregnancy and we are really grateful for that.
  •  Be accommodating. If someone you know has it, expect them to cancel on you. Don’t make them feel guilty about it. But also, don’t stop inviting them! There are good days where I could go out and I honestly lived for them. 
  • Educate yourself on the facts surrounding HG. My family were brilliant at doing that and so knew triggers and anxiety points and how to avoid them. My Dad and husband in particular loved the phase I went through where only a certain fast food chain’s greasy burgers and strawberry milkshake would stay down!
  • Avoid strong perfume or cologne- my poor Husband had to retire his expensive bottle because I couldn’t stand the smell. It still remains a trigger for me. 
  • When you go to the loo, run some toilet cleaner or bleach round the bowl and floor. Not for your benefit, but for the poor girl that can’t face cleaning it but knows she’ll have her head in it later! 
  • Remind them they’re doing an incredible job. Pregnancy is tough full stop. HG in pregnancy is horrible. 

What was the most helpful and unhelpful thing people said and did in regards to your pregnancy?

The most helpful thing was along the lines of  “Yeah. This is really really crap and it suck that you have to go through this. I’m sorry”. To have acknowledgement from someone that actually yeah it wasn’t great and glamorous (!) was so affirming and refreshing. It didn’t make it go away and it didn’t make me physically better, but it made me feel less lonely. 
The least helpful comments included “It’ll all be worth it in the end”, “maybe it’s all in your head?” “It’s just bad morning sickness- mine stopped at X weeks”, “I hear ginger helps”, “Try eating certain foods or doing certain exercise, maybe

that’ll help”, “it’ll soon be over and you’ll miss being pregnant”, “maybe you won’t have it with the next baby”… I could go on!

What advice (if any) would you give to someone who has (or thinks they have) HG?

Tell your health practitioners- your doctor, midwife, consultant whoever. There is much more advice and info out there now, so if you think you have it, find out about HG and take that info with you. Not all maternity health care professionals are fully up to date or even aware of the symptoms. You CAN take anti emetics safely in pregnancy. If you need them, ask for them! 

Ketones are NOT a lone accurate indicator of dehydration in HG. Make sure that if you aren’t well for a long period of time, you get yourself checked and if necessary, admitted to hospital and on an IV drip.

**I’m not a medical professional, but at times I had to really push to be listened to**

There’s so much support out there. Pregnancy sickness support UK is an incredible charity that helped me through and continues to help others. It’s partnering with specialists throughout the world to develop more research all the time. Their helpline is a lifeline for when you are really struggling, because these are real women who have experienced it and they can give you practical advice, as well as a shoulder to cry on when you feel really lonely. 

Embrace every craving. Seriously. You may only like it for a short period! One day I chowed down on an entire bag of iced gems. They revisited me a few hours later, but I really enjoyed being nostalgic for a time! 

Is there anything else you’d like to add?

 My blog, “Dear Luna: Love letters to my Daughter” talks quite openly about my experience in pregnancy and HG and the various times I was hospitalised.

Would you like to know more about Hyperemesis Gravidarum, or had experience with it yourself? Let us know in the comments below

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