Wonderful Women: Mum of three, brain surgery & ASD

  • Although we are ‘Mummykind’, put being a ‘Mummy’ aside for a second and tell us about you!

Hello, I’m Rachel. I’m currently not working because I’m recovering from brain surgery. I’ve been working on some minor home improvements as I let my standards slip a little bit when I was poorly! I enjoy gardening, spending time outside, looking after my small menagerie of animals and enjoying the company of my beautiful granddaughter!

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  • How about your children? How old are they, what are they up to?

My youngest is 13 and in Key Stage three at school. Then we have my 20-year-old son who is off to University in September, where he will study Urban Planning. My eldest is nearly 24 and a Mummy to my Granddaughter, she enjoys writing and promoting Mental Health awareness.

  • What are your favourite and least favourite parts of being a parent?

My favourite part of being a parent is seeing my children genuinely happy and succeeding. I love the relationship my children and I have. When all else fails, I know I can depend on my little family and they know they can depend on me. They all have a fantastic sense of humour and there is honestly never a dull moment when any of us are spending time together! My least favourite part is when my children are ill, especially when I nearly lost my daughter when she was giving birth and also when my youngest had severe viral encephalitis. It has also been awful seeing my children being bullied to the extent it has impacted their mental health.

  • When did you first consider that your youngest child was different?

When he had just turned two, he suffered multiple convulsions that lead to a prolonged period of him not being able to breathe. After this period of ill health, his character and behaviour completely changed. He was still our little boy, but he wasn’t quite the same anymore. The specialist said that the period in which is brain was shutting down could have well have led to cognitive changes, causing ASD.

He started to stare at the washing machine as it spun around. If he was ever in a small space, he only ever wanted to escape – he’d run into walls and try to climb out of windows. He was sensitive to sound, touch, to having too many people around. We’d have to cut the tags out of his clothes, including his pants and socks. He was withdrawn and easily overwhelmed.

  • How difficult has it been to get him the help and support he needs?

It has been virtually impossible to get him the help he deserves. Despite showing typical signs of ASD and related disorders, he wasn’t diagnosed with Autistic Spectrum Disorder until he was nearly seven years old.

Getting that diagnosis took continual visits to the GP, countless visits to our local specialist, support from his primary school and other trusted people’s supportive documents. He has been declined 5 times for a Educational Health Care Plan (EHCP) as he isn’t “Autistic enough” despite being “too autistic” for mainstream school, according to his specialist provision at school. He has many struggles with not only ASD, but ADHD, APD and even some aspects of Tourette’s (to name a few!) – but he is high functioning, which hasn’t helped at all with his EHCP.

  • Describe a typical day to us? What are your biggest daily struggles? What are the highlights?

Mornings are so stressful – we have a minute by minute system of what we need to do to get him out of the house on time. It has taken 18 months of almost literal blood, sweat and tears for us to find a routine that works for him. We face multiple difficulties like him struggling with shoelaces and his tie because he doesn’t like how it feels. His anxiety levels are so high that he can’t get the bus to school, so he must be driven. He is almost done with his second year and still not doing a full school day.

He has started doing more mainstream lessons as he prepares for his GCSEs. The highlights are when he comes home happy, when he has learnt something new that he’s excited about. He does so well academically despite his difficulties that in most subjects he’s on the same level as his neurotypical peers. He is really interested in Physics and has a keen interest in space… hearing him talking about something he is passionate about makes me so proud.

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  • How has the past year been for your family?

It has not been the easiest of years! This time last year my brain condition was affecting how I thought, how I walked, how I talked – I was using a stick and wheelchair. I wasn’t myself at all. I had surgery for this at Kings in December and I’ve been recovering well since! I am so thankful that I had that surgery done when I did, it’s been life changing.

My husband had a DVT which lead to a life-threatening DVT pulmonary embolism, causing permanent lung damage – he’s been placed on medications for this and since then he’s been much better.

My son’s specialist unit at school has closed, so we’ve been in lots of meetings regarding a new smaller provision that is being piloted. We’re hoping this works well for him and helps him feel secure enough to continue to achieve.

There have been so many mishaps and incidents – I’m just thankful to have my family and my dogs by my side!

  • How have you managed to cope? What do you do to unwind and relax?

My family inspire me to keep going, as I said before, when all else fails, I still have them, and they have me. We try to get away on holidays whenever we can. I love a good soak in the bath, or a cup of tea and a chat. You can’t go wrong with either of those!

  • What hopes do you hold not only for your youngest child, but for your whole family?

Understandably my youngest causes me the most concern, above all I just want him to be happy on whatever path he chooses to take. School, work, college? If he’s happy and fulfilling his potential, I couldn’t be happier! I hope my eldest son does well at university and enjoys his chosen career. I hope that my daughter finds an answer to her many medical problems, so that she can live a happy and healthy life with her little girl. After all, I believe the most important job in the world is brining up happy and healthy children.

  •  Do you have anybody you’d like to nominate for our Wonderful Women Wednesdays?

I’d like to make a couple of nominations, if that’s okay? Firstly, Maria of Mummykind – I admire her fight to save the world for future generations. She is an excellent influence and recently won an award for her green thinking! I’d also like to nominate my Mother, Angela for a different perspective on parenting and to incorporate and include ladies from a further range of backgrounds.

Do you have anyone you’d like to nominate for our Wonderful Women feature? Let us know!

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Mental Health Monday: I’m taking control… Anxiety vs social media

I have an anxiety disorder. There it is, I said it. Phew! That wasn’t so hard I guess… but I’m someone who doesn’t openly discuss my anxiety issues, (being a bit of a proud and stubborn person), I still find it hard to admit that I have difficulties, which were on a daily basis. But here I am opening up about it and who better to share it with than you lovely mums?

I came off Facebook earlier this year and I’ve not looked back. When I realised that it was causing problems for my mental health, I decided it was best for me to finally ditch it.

Facebook has over the years been a great way for me, (like most people who use it), to stay in touch with old friends and new, but as my long-term relationship broke down, it was visually obvious just how much I had lost in the process. Seeing that old friends and family were deleting me out of their lives, after years together, took its toll on me and contributed towards my illness. Memories popping up each time I logged on. My anxiety was constantly telling me how lonely I had become. Some of my closest friends, I thought would be there through thick and thin, weren’t as supportive as I needed at that time, (and I recognise now that yes I was needy), and Facebook was reminding me of how much fun everyone was having, whilst I was falling into what I didn’t see at the time as depression. Of course when you’re in a better state of mind, you know that Facebook isn’t really ‘real life’, but as a result I was further pushing those people away and isolating myself as a way of coping, which I can see now.

Facebook again continued to serve as a reminder that as I reached my 30s and had become a mum, that I was no longer such a socialite. I love being a mum, so I accept that I can’t do as much; it’s part and parcel of being able to have a wonderful child, but it doesn’t mean that I’ve stopped being me! Am I still fun to be around? My anxiety would chime in to torture and remind me that I’m lonely and instead of fun nights out, I’d be updating everyone on my excitement that I’d managed to get through the day without tearing my hair out.

The final push for me as a mum with anxiety was because I was noticing that family members were using Facebook as a way to ‘stay in touch’ with my daughter, by picture comments. Whilst it’s lovely to hear from people and to get their well wishes, (I don’t want to seem ungrateful), it means nothing to a baby/toddler, when she’s older and can read it’s a different story. I felt like people were knowing what my daughter was up to, without really knowing her and my anxiety again was causing me to have difficulty processing and dealing with this. Relatives, living nearby, were often going long periods of time without seeing my daughter. I knew I would much rather be able to see those people in person to build up relationships the old fashioned way, no matter how often that was. Coming off Facebook felt like the push I needed to arrange to see people more in person.

Coming off Facebook helped me to concentrate on my little circle of close friends and family and helped me to prioritise what is important to me and my family.

Leaving Facebook didn’t of course erase all of my mental health issues, but I’m using the social media that doesn’t trigger my anxieties instead which has helped me to feel more in control. Facebook is no longer there to remind me of the person I used to be; because I am finding that person again myself. Getting additional help from my GP has meant that my anxiety isn’t feeding me this false information, which sends me into a downward spiral where I am convinced that I am lonely. I am also far better at dealing with things that would have previously been a trigger.

I’m in a place now where I can stand up to the anxiety, (which I refer to as the A hole), and I can say I have my daughter’s and my partner’s love and that is more than enough! So with my little social circle of mums and treasured old friends, I feel very rich indeed. I haven’t felt this good about myself in a long time and I have more confidence than ever before to get out and meet new people. Each day feels like a new exciting opportunity now.

Thank you for reading about my journey.

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Travelling with a toddler… How bad can it be?

When I’m out in the car with my daughter for a bit longer than she has the patience for being stuck in a car seat for, then I’ll get the high pitched screaming alarm or a frustrated hissy fit. She doesn’t hold on to her toys in the car for longer than five seconds before hurling them somewhere. With that in mind, she does pretty well to keep herself entertained most of the time on our car journeys, but it doesn’t stop me feeling a little anxious if I’m stuck out for longer than I intended, especially after I had a particularly bad car drive on the motorway… I will admit I haven’t really ventured away too far from home with Imogen and I do try to stick to some sort of daily routine. So when we decided to go abroad, I was left thinking how on earth we would cope with a toddler on a plane trip.

It seems silly now in hindsight of our holiday that I was a bit worried, but it’s because toddlers are so unpredictable, as you all know!

Perhaps you’re waiting to go away somewhere or you’re unsure of how you would cope… Please don’t let it put you off!

Think of when you need to leave for the airport and then add extra time! You just know that with kids, that something is going to happen… a last minute stinky nappy or a refusal to get ready. I never get out of the door on time anymore anyway, so despite feeling super prepared we didn’t leave home until later than our plan to.

On the motorway we were diverted off course due to road works and the sat nav took us through town after town. Watching the time ticking by, I’m not going to lie, I thought we weren’t going to be leaving the country at all, but in an attempt to keep my partner calm I kept saying just drive safe, it will be fine. At the end of the day, it’s not worth putting our lives at risk to catch a flight. Imogen slept the whole car journey and I’m glad we picked an early flight for this reason. At least she wasn’t adding to our stress.

Once we got to the airport there was no time to shop, we were racing through the airport and got to the boarding gate with 20 minutes to spare before it shut! We could finally sit and relax we thought. Imogen had other plans though, she wanted to run around. She most definitely did not want to sit nicely Mummy! So we had squealing and tantrums. At this point I noticed some panic stricken faces from people knowing that they were about to share a flight with a screaming toddler. This was one of the things I was a bit worried about but I thought ah yes, I’ll get her bottle ready for the flight. The milk will make everything better…

… Then it dawned on me that I hadn’t picked up the cartons of milk from the bag check. Eeek!

We were keeping Imogen as entertained and calm as possible, with my partner’s brilliant idea to download some Peppa Pig from Netflix onto his phone before we left home. This helped while the flight was delayed for almost an hour on the runway before take off.

Imogen was a bit squawky by this point on the flight and wanted to get off my lap to run around but the whole experience for her was new, exciting and strange! There was very little we could do, other than try to keep her occupied with the toys we’d packed for the flight, (one of them being a new toy that we thought she would be excited about), and once we could, we bought some snacks from the on flight drinks trolley. There were other babies and toddlers on the flight and they all did really well. Yes there was a bit of noise but if other people have a problem with that then I’m sure it’s nothing that a pair of earphones wouldn’t help with. Don’t let this worry you. Kids have as much right to travel as anyone else!

We found out once we reached our holiday destination that our relatives with a small child had to wait hours for a delayed flight the day before. I suddenly felt that our experience could have been a lot worse!

We had a lovely week with family and we were all feeling pretty sombre about the holiday ending.

When we were headed back to the airport we were stuck in traffic and I think the constant stopping and starting was what caused Imogen to be very sick all over herself. I was cleaning her up and once we got to the airport I was able to change her into fresh clothes. So I think in future I will remember to keep a spare change in our cabin bag.

We then had a forgotten Toot Toot dog set off the scanner for our hand luggage, which caused us a bit of delay but at least it gave the staff a few giggles! We again got to the boarding gate with very little time to spare… 10 minutes this time! But the strange thing is, we were so much more relaxed. When we were queueing to board the plane we were told our cabin bags would have to go into the hold! So on the flight back we didn’t have all the toys and entertainment that we had on the trip there. This time though we had the trusty milk and Imogen fell asleep for the whole flight home.

When we returned to the car, thinking all had gone pretty well and feeling eager to get home, we found our car had a flat tyre in the airport car park! We wouldn’t be home for another 5 hours! Instead of worrying though, we took it in our stride and managed to get it sorted, despite having no phone, (the battery died) and being somewhere unknown.

What I learned from our trip was that we coped. We could have spent ages planning for the trip and things still wouldn’t have gone to plan. What happened though wasn’t really so bad! I’m so glad we went abroad with Imogen and now I know I won’t worry so much about travelling again. Perhaps we’ll go further away next time. Maybe I will try doing longer car journeys or a train trip on my own? I feel far more confident for next time.