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!

If you liked this you may enjoy reading…

Making a Safe, Accessible Space: Tips for Disabled Parents

You’ll need to know what alterations are required and how you’ll pay for the more expensive ones. Don’t be dismayed by the presumptions of people who don’t understand that disabled individuals can be just as amazing parents as anyone else. After all, it is estimated that there are more than 4 million parents with disabilities in the United States today, according to the National Center on Parents With Disabilities.

This post is something which is very important to me having witnessed my mother-in-law’s daily struggles with her disabled daughter – it’s easy to think of disabled children and I can bet we all know one person with a disabled child, but how many disabled parents do we know? Paige and Amy have previously both shared posts on their disabilities and how it has affected their lives (see the thumbnails at the bottom of this post to read more!).

Parenting is a scary thing for all of us, but for disabled parents there are even more factors that need to be taken into account.

Here is a fantastic piece from Ashley at disabled parents.org on things that can make parenthood that little bit less daunting for disabled parents in the US.

Thank you Ashley!

Tips for Disabled Parents

Disabled individuals make excellent parents by learning to adapt their physical capabilities and living environment to the needs of a newborn. Preparation is the key – address accessibility and safety needs in advance so you’re able to provide responsive care unimpeded and without fear for your safety or that of your child. That means making modifications to your home and in your habits. That can be easier said than done, especially given the cost of making structural changes to your space.

You’ll need to know what alterations are required and how you’ll pay for the more expensive ones. Don’t be dismayed by the presumptions of people who don’t understand that disabled individuals can be just as amazing parents as anyone else. After all, it is estimated that there are more than 4 million parents with disabilities in the United States today, according to the National Center on Parents With Disabilities.

Courtesy of pixabay.com

Modifications

Anyone who’s ever been an expectant parent has made some changes to their physical living space. Accommodations need to be made for baby and childcare equipment and supplies so parents have ready access to their child both day and night. Exterior stairs need to be bypassed with an entrance ramp for parents who are in a wheelchair or who have some other form of mobility limitation. Bedrooms should be relocated to the first floor so interior stairways don’t present a safety hazard. Replace carpeting with laminate or tile flooring for easier movement, and note that doorways may require small transition ramps to level out the space between rooms.

If doorways are less than 32 inches wide, consider installing expandable hinges to improve access. Bathrooms can be particularly hazardous places for disabled individuals, the site of more falls than any other room in the house. Grab rails should be installed alongside the toilet and in the shower, and skid-resistant mats placed in front of the sink and toilet. Light switches and electrical outlets should be lowered for easier access, and door knobs replaced with levers.

Financing options

Many of these modifications can be made with relative ease and quite affordably. However, others can run into the thousands of dollars. Fortunately, there are a number of options for financial assistance made available by the government, including Home and Community-based Medicaid Waiver Programs, for individuals who receive assistance via a Medicaid waiver.

The USDA also makes loans and grants up to $20,000 to low-income homeowners for repairs and improvements through its Rural housing Home Repair Loan and Grant Program. Eligible veterans have access to a loan for home modifications through the VA’s Home Loan Guarantee Services.

The right equipment

Much of the equipment commonly used in baby- and childcare has also been modified in recent years to meet the needs of disabled parents. Side-entry cribs allow wheelchair-bound parents to reach directly into the crib for diaper changes and late-night feedings, and swiveling child-safety seats make it much easier to move a little one in and out of the car without placing undue strain on the back. For bathing, small plastic baby tubs can be placed at tabletop level, with the hose from a kitchen or bathroom sink providing the water. A shoulder strap sling, which can be purchased for about $50, makes carrying a baby or small child much easier as you move around the house or run errands.

Preparation is key for an expectant disabled parent. That includes making any physical alterations to your home to ensure adequate accessibility and safety, and it makes good sense to invest in equipment designed to make parenting as easy as possible for a disabled individual.

If you liked this you may enjoy reading…

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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Mental Health Monday: 6 forms of therapy you should be trying!

Once you recognise that you potentially have mental health problems, the next step is how to deal with them. There are a number of options available, and these are the ones that myself or other mums I know have tried and had some benefit from! I hope that this list helps someone going into a GP appointment to know a bit more about the options and what they could try!

Medication

Sometimes, when you visit the GP the first response is to prescribe medication. Thankfully, when I went to the GP with my postnatal depression I had the experience of having been on antidepressants previously, and I knew that they wouldn’t be very effective for me. I did eventually end up using medication, but not for very long at all. However, there are some misconceptions about using antidepressants that need addressing!

You CAN breastfeed while on antidepressants – sertraline is the most common one for breastfeeding mothers, but the majority of tablets carry the same risk level for a low dosage. If this is one of your concerns, bring it up with the doctor because they have a handy little book they can check that tells you if it passes to the milk or not!

Side effects ARE worth mentioning to the GP – when I was on sertraline I could barely stay awake. It is a common side effect of this particular medication, and I went back to the GP to say that I couldn’t continue to use it. Easily enough I was switched onto an active antidepressant, fluoxetine, which did not make me feel drowsy at all. Even with medication, you need to find what works for you – it’s not one size fits all! I know a mum who was on sertraline successfully as she used the drowsiness side effect to help her get to sleep at night too by changing when she took the tablet to right before she went to bed.

You SHOULD NOT feel ashamed for taking medication. After all, depression is a chemical imbalance in your brain. If you had a limb amputated you wouldn’t manage it without analgesics, so why should you manage without medication when part of your brain isn’t functioning properly as it should?

Cognitive Behavioural Therapy (CBT)

I’ve tried this once in the past in the form of group sessions, but I’m fairly certain it can be done one on one too. I found the group sessions really helpful when I was younger, but my memory is failing me here as it was over 10 years ago now!

CBT can work for a number of mental health issues including depression, OCD, eating disorders and more. It is an active form of therapy which aims to change your outlook on life by setting goals and completing tasks in between sessions. It can make you feel like you’re really making a meaningful change in your life.

Counselling/Talking Therapy


Talking therapy includes a lot of different types of therapy that actively involve you talking to a therapist, but they take many forms! CBT (above) is one of them too. There’s also family therapy, relationship therapy, psychotherapy, etc. But counselling is the most common of them.

Counselling on the NHS is usually done by self-referral and it’s a pretty simple process. When you contact the GP about your mental health concerns, you can ask for contact details of local counselling services – they should all have these to hand. Otherwise, have a look on the NHS website to find your local service.

This is something that works really well for me. I’ve attended family therapy and counselling a few times and, although I don’t get on with family therapy (probably due to my family being the root cause of many issues), when I try counselling I always see a marked improvement from when I started. If I had the money to do it, I’d probably pay to see a therapist for counselling weekly because it helps me that much! At the end of the day, it’s all about finding what works for you. If you absolutely hate the thought of this, peer support might be a better option!

Peer Support

If you’re a twitter user, I strongly recommend following @PNDandMe. Rosey hosts a twitter chat every Wednesday 8-9pm for parents suffering with their mental health to talk in a supportive environment on a particular topic. Mummykind has co-hosted one in the past, and I regularly take part in them when I remember! This is a great way to remind yourself that you’re not alone, and it’s also much easier to type out how you’re feeling than to say it out loud, so it could be worth having a go if you’re daunted by the thought of going to counselling!

Craft Attack (or similar)


Harriet went through a craft therapy group after she had little Florence, and she’s written about her experience before on MummyGoesWhereFloGoes. I haven’t tried this one personally, but I can only imagine how something so therapeutic itself can really help you to overcome or manage you mental health difficulties. Even if the groups aren’t available in your area (ask your GP to check!), taking some time to yourself with a colouring book or another crafty project might just help you to calm yourself and re-centre – refocus on you!

Birth Afterthoughts

Again, this is another one that Harriet has trialled and is particularly helpful if you had a traumatic birth and are suffering with Post Traumatic Stress Disorder (PTSD). However, it’s not only available if you do have a PTSD diagnosis!

It’s available to any woman who has recently given birth, and the idea is in the name – it’s for you to ask questions that you only thought of after the birth, to have your questions answered so that you can maybe come to terms with things that happened during or after the birth of your baby. This service might not be available in every NHS trust so make sure to discuss it with your midwife/health visitor to find out if you can access the service where you are!

I hope you find this little summary useful, and please, if you’ve tried any other kinds of therapy let us know what they are and how you found them in the comments!

Monday Stumble Linky

What baby loss means to us

So this week is baby loss awareness week, and here at Mummykind we wanted to make sure we marked this week properly and respectfully. Whether lost during pregnancy, during or after birth, the loss of a baby is one of the worst things anyone can go through with the most painful feelings anyone can experience. It’s a raw, scary and heart breaking time for anyone, yet sadly it’s something that affects thousands of families here in the UK.
I thought I would write this post due to experiencing both an early miscarriage and an ectopic pregnancy.When I experienced the early miscarriage I remember feeling scared, worried and broken, I was 4-5 weeks gone and had found out in the same day that I was pregnant but was losing my baby, I felt that a life was being given to me in one hand yet snatched away from me with another.

4 years on and a successful pregnancy later, my little boy was 6 months old. The day before, I had found out I was pregnant and was so excited as any parent is when they find out they’re expecting again but the next day something wasn’t right, I was having severe cramping so went to my GP, she didn’t really need to say anything, her face said it all. My blood pressure was low, my heart rate was high and I could barely stand in pain “ I’m going to send you to hospital, I’ll ring for an emergency ambulance as I believe you could be having an ectopic pregnancy and if that is the case then we need to move fast” from that moment it was blurry, I remember crying to the paramedics saying I couldn’t go through this and that I was scared. The hospital moved fast and confirmed the ectopic by scan and from then I knew this would be another baby I would never get to meet.

It’s no secret that I’m part of many endometriosis and PCOS support groups, and a topic that comes up frequently is baby loss and my heart goes out to every woman I see in that group struggle with baby loss. No parent should ever experience baby loss, no parent should ever have to say goodbye to their baby.
I’m never a big fan of soaps when they brush upon baby loss, however both EastEnders and Coronation Street have done heart wrenching tributes. EastEnders and Bernadette’s baby girl and then the unforgettable Coronation Street with Michelle and Steve’s stillborn – made even more moving by the fact both actors have experienced baby loss.
I urge any parent who has experienced baby loss and is feeling scared or alone to know that there are some amazing charities available; Aching Arms, Sands, Life after loss and Heart in their hand (to name a few)
A lot of parents take comfort from marking the loss, some people plant a patch of flowers in the garden, or light a candle. Whatever helps you find comfort with your loss.
Here at Mummykind we want any parent experiencing baby loss to know you’re not alone, it’s not your fault and most importantly any emotions you feel when experiencing this are completely expected, it’s understandable to feel hurt, angry, scared.
We hope you’ll join us in partaking the global wave of light on October the 15th 2017 by lighting a candle at 7pm local time and leave burning for at least an hour in memory of all the babies that have passed away. This year wave of light are also offering a digital wave of light with the hashtag #WaveOfLight – as seen on https://babyloss-awareness.org/get-involved/#wave-light