Failing Families: Health Visitor Clinic Closures

It’s been 8 years since I started NorthHantsMum in June 2011.

I’ve seen a lot of changes during that time. Unfortunately many of those changes have negatively impacted local families, especially Mums with babies and small children and families with SEN children.

Yesterday I saw that the Health Visitor clinic schedule has been changed again so that now the Drop In’s are only Monday at The Ridgeway Centre and Friday at the Discovery Centre. The others are by appointment only.

Many of the clinics that have been running for at least 8 years (I know because I used them) have now been cancelled, such as Christchurch Chineham, Overton, Hatch Warren, Whitchurch and Bramley.

I understand that we are living in times of “austerity” but why is it that families, especially Mums and young children, are targeted with any cuts first?

What you can do!!!

If, like me, you are pissed off/ fed up  (I don’t swear on NHM but I feel it’s appropriate in this instance!) with the way local families are being repeatedly let down then this is what you can do:

Specifically email ALL of the three people below and say why it matters to you that the Health Visitor clinics have been cut.

Please cc. me in any emails that you send (NorthHantsMum@gmail.com).

  1. Email the head of Southern Health: hp-tr.complaints@nhs.net
  2. Email Maria Miller: maria.miller.mp@parliament.uk
  3. Email your local councillor. You can find your local councillor here by using your postcode: https://democracy.basingstoke.gov.uk/mgFindMember.aspx

(You can copy and paste all of the emails from here: hp-tr.complaints@nhs.net;  maria.miller.mp@parliament.uk; NorthHantsMum@gmail.com)

Specifically tweet ALL of the three people below and say why it matters to you that the Health Visitor clinics have been cut:

  1. Tweet the head of Southern Health: https://twitter.com/NickBroughton4
  2. Tweet Maria Miller: https://twitter.com/MariaMillerUK
  3. Tweet your local councillors

The remaining clinics also have feedback forms, so please complete these as well.

Please make sure you add comments as to why it matters to you that the clinics have been cut as the way these things work is that individual letters/emails count more than group ones.

What to write about

You could write about how disappointed you are that so many clinics have been discontinued because they were so important to you when your baby was born as they were somewhere for you to go for support.

You could write about how annoyed you are that funding cuts are impacting new Mums and thus putting them at more risk of post natal depression.

You could write about how angry you are that new Mums and future new Mums are being failed by the services that are supposed to be in place to support them.

You could also write something similar to this which I’ve been sent by another local Mum: “in recent years in our area parents have lost specialised breastfeeding support when grant funding was not extended and have had closures of Children’s Centres (11 remain out of 64 in Hampshire I think). To say that support for parents has been decimated is an understatement. I understand that money is tight but the latest blow will affect those parents who are only just coping and in turn these women and children will need to access more services via their GPs for example or as mental health referrals. I consider these additional closures will knock on to the health and well being of ordinary families and will cost the whole system more in the long run. We were promised more Health Visitors in the call for action – instead it seems we have fewer with just a skeleton service remaining. I worry for those families who in the past would have got early support from a trusted Health Visitor – who now will go under the radar. If a GP visit costs around £45, a hospital overnight stay more like £500 and a child taken in to care around £50K per annum… we can see how cutting services for families to the bare minimum will soon knock on to these other budgets. We are calling for a joined up approach to services in the county.”

You can obviously write whatever you would like but please put why it matters to you that the Health Visitor Clinics have been cut.

On Social Media you could use the hashtag #FailingFamilies.

Summary of Closures

If you have a bit more time and feel like you really want to “go to town” on how local families are being let down, then please see my summary of closures and cancellations in the past 4 years….

2015

2016

(There is now direct evidence of how children’s centres saved the NHS millions of pounds: https://www.theguardian.com/society/2019/jun/04/sure-start-saved-nhs-millions?utm_source=dlvr.it&utm_medium=facebook&fbclid=IwAR38KyULT_ELrGweVxT_rNIHgJIK4RKL491e0MVUbcHjaVmsiC99gW3lRC8) Thank you to Danielle for sharing with me).

2017

  • 30 hours of free childcare for 3 and 4 year olds, meaning many Mums are being forced back into working much earlier than they would want too.

2018

  • Closing of Little Play Town in Nov 2018
  • Manydown Family Fun Closed
  • Absolute Karting Basingstoke Closed
  • JJ’s (softplay) Closed
  • Beenham Wolf Sanctury Closed
  • Reduction of funding for school buses – August 2018
  • Removal of school buses for children with disabilities – August 2018
  • National Playday at Eastrop cancelled in 2018. This was a free day for children that had been running for years in Eastrop but now runs in a few of the local community centres instead. It’s not the same. At all.
  • Reduction in funding for the newborn courses at the remaining Children’s Centre, Westside – 2018
  • Cancellation of the EHCP process in Nov 2018 for SEN parents
  • Closing of ParentVoice and switching to Red Rose: https://www.hants.gov.uk/news/Nov27-SENDIASS
  • Changes to Special Educational Needs and Disability Information, Advice and Support in Hampshire

2019

  • Kids N Action Softplay Closed
(If there is anything that I have missed off this list, please let me know).

Impact of these changes

All of these changes are impacting many, many local families.

Even more so with the increase in housing of an extra 10,000 houses to be built in the local area by end of 2020, so more families are moving to the area but services are being reduced that don’t support existing families, let alone new families.

As I said above, I understand that we live in times of “austerity” but it’s very, very worrying and I try not to dwell too much on the impact these changes will have on my 8 year old daughter, her generation and future generations.

I try my best to be positive and upbeat on NHM but I think we need to try to do something to ensure that at least the Health Visitor clinics are better represented. Any help you can give with this will be greatly appreciated. If we ALL send the emails, the impact the NorthHantsMum Community could have would be huge!

Comments from other Mum’s

who have put it far more eloquently than I have!

Sarah: Sadly it Seems like this government would rather waste money hosting a £40million trump visit and push through brexit at any cost rather than look after it’s vulnerable citizens. After brexit more services like this will be cut as we will all be poorer – Apparently it’s “the will of the people”.

Genevieve: As well as writing letters, you may also wish to comment on Maria’s Twitter and Facebook accounts (or here https://www.facebook.com/159961377372565/posts/2184994638202552?s=532163237&sfns=mo – she’s very good at attending awards, not so good at helping people!).

Eleanor: Prevention is better than cure … health visitor clinics are so useful to local people in their own communities. Mums don’t think ‘oh I’m struggling, I know I’ll book a health visitor clinic’ they just keep struggling, until something breaks or nothing happens but just struggle.
I’m so sad to see the Bramley clinic cancelled. The stay and play sessions were so valuable to me. Sadly the funding is ridiculously short I presume. I’ll defiantly be emailing as you suggested. Taking away support for parents is only ever going to cause problems for parents and children in the future. Even if it’s the subtle kind of problems that don’t translate into hospital admissions etc.

Elisa: The unfortunate truth is that they are down on 5 full time health visitors for Southern Health. The reason they are not able to recruit is that most of their time is spent dealing with safe guarding issues. The role of the health visitor has sadly changed and nobody wants to do the type of work they are doing now. Add to this, the fact that the remaining staff are over worked and stressed, it’s not an environment anyone else wants to join.
So as desperately sad as it is about the decreasing availability of them, writing to anyone will sadly make no difference. The jobs are available but sadly nobody wants them ☹️.

Emma: When I had my first I could walk around to chiltern school and see a HV every other Tuesday. He was regularly weighed and as a first time mum I could ask all my questions. Fast forward 4 years and I had a prem baby. Zero support. I was told I’d have more contact because he was premature- I didn’t. When I went for weigh ins the HV’s didn’t all understand how to record his weight!! You have to plot it twice for actual and corrected. The library was the easiest one to get to but queues were horrendous and then you felt rushed because you could feel the strain. Needless to say I stopped going. It was too much effort with two children and with my baby being so little. I can’t believe they’ve reduced this even further. If I was a first time mum now I’d be very worried.

Wendy: Emma, such similar story, my first was weighed once a fortnight at first, then once a month in the Popley 5 drop in that was walking distance for all of Popley, Oakridge and South View. Then they moved it to Popley Fields for my second, no longer walking distance, not at a time that was convenient for nursery/school run. He got weighed about 4 times. He had eczema and allergies but going to the drop in meant missing out on other things or struggling with the car park, so we didn’t bother. Parking charges, town being busy, all things that would have put me off going to the library. I can only imagine what it’s like for those using public transport.

Angela: It’s thoroughly saddening to see such valuable support (emotional to individuals and economic to the wider public health system) being stripped away. I hope people remember this feeling of hopelessness during the next general election and vote for a party that is going to help the public. (I’m really sorry to make this political, but in the words of a great 90s rock band “everything’s political”. We have the power to choose a government that won’t strip the first line of support from us.)

Charlotte: It’s so sad. I used to work on a HV team and the work they do really cannot be underestimated. Yes, you can still see a HV without a clinic but as mentioned above, the clinic is such a convenient and quick way to see them, without having to book an appointment. Some parents don’t have to confidence to book an appointment, or they aren’t sure if they are wasting someone’s time (they never are wasting anyone’s time). I think the cutting down of these clinics alongside the closure of the children’s centres we really come back to bite the Government in a few years when there are increased social issues and late diagnosis of problems that could have been resolved with early intervention 😢.

Mary: To be a HV, you have to be a qualified nurse. They can’t find nurses because they cut the support for people to train. Lots of nurses stop nursing because its not compatible with being a parent unless you are lucky enough to work in a day service. Nurses, however, aren’t paid enough so free childcare is vital to contribute towards the cos. It’s more problematic that childcare support doesn’t start until age 3 so working parents have to struggle through age 1 and 2 first – or not work and then have to pay to reregister or train for their jobs. It’s all connected.

Nicole: I got my almost 3 month old weighed yesterday at Discovery Centre and I was shocked at how much it had changed since I took my first there in 2016. There was a queue out of the door to get in, and then you now weigh your baby and record it in your red book yourself. I didn’t need any support from the HV on this visit, but I’m not a healthcare professional and it would have been nice to just have them oversee it and my baby’s progress. To be honest I won’t be attending again. I feel sorry for the HVs because they look so stretched when you see them trying to get around the room, but most of them were extremely friendly and pleasant, and even found me a seat to feed the baby before I left.

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Baby Sleep the Night

Having trouble getting your baby / toddler to sleep? Let me help you as I have been there too.

I am currently working towards finalising my certification and am offering a 2 week package which usually would cost £250 for £50 in exchange for an honest review of my service and a testimonial if you’re happy with the results at the end of our time together.

It is worth mentioning that I do not use the ‘ cry it out ‘ method, which many frazzled parents may possibly have tried and found not successful in the past. I use a very gentle approach taught to me by one of the leading baby sleep consultants in the UK which allows you to be there every step of the way to help provide comfort to your little one whilst they learn this new and important skill. I am incredibly passionate about sleep having suffered sleep deprivation with my own children and I know that healthy sleep habits mean healthy happy children.

If you know of anyone who this may help, please pass on my details or share to your entire address book!

www.babysleepthenight.com

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New information evening for Mums making a choice for birth after Caesarean

A new information evening for mums making a choice for birth after Caesarean will be on the second Wednesday of every month at 18.30hrs at alternating maternity sites.

It continues on Wednesday 12th of June at Basingstoke in the Blue room, downstairs in the Sherbourne building.

The purpose is to give consistent advice regarding the options for women having had a caesarean and help them to achieve the birth they would like , either and elective repeat Cs or a VBAC.

For more details, please contact me at NorthHantsMum@gmail.com and I will put you in touch with the relevant Consultant Midwife.

Don’t miss out on future posts like this – you can receive updates directly to your inbox by email by adding your email address to the box on the top right of this page and hitting subscribe. You can also follow NorthHantsMum onTwitterFacebook ProfileLinkedIn and Feedly. I hope to see you there!

NHM Readers Recommend: Play Cafes and Cafes with Toys

I recently had a question from an NHM Reader that I asked the NHM Community to help with: “Does anyone know of any play cafes, or alternatively cafes that have entertainment/ toys for little children?”

Many thanks for your replies, listed below in no particular order.

Please bear in mind that listings may change in subsequent years, but hopefully they will still be a good base point for your own research.

NHM Readers Recommend: Play Cafes and Cafes with Toys

Hook Garden Centre

Tracy said “Hook garden centre has a nice play area and cafe.”

Lottie said “Love the garden centre in hook. “

Kelly-Lauren said “Hook Home & Garden Centre, Come along to my session there! Jiggy Wrigglers Basingstoke & Surrounding Villages

Little Roses Coffee Shop

Andy said “Little Roses on the road to tadley is neat.”

Catherine said “Little Roses at Elm Park Garden Centre have toys upstairs”

Katie said “Little roses at Elm Park garden centre has a little play area upstairs for children. And it’s usually fairly quiet.”

More of the Good Stuff

Catherine also said “ More of the Good Stuff in Dummer have a fenced off area within the tea room full of toys”

Ellie said “More of the good stuff at dummer farm has a lovely area”

Andrea said “More of the good stuff cafe in Dummer.”

Samantha said “More of the Good Stuff , Dummer ….. amazing cake and a secure play area for little ones.”

Active Tots

Emma said “Active Tots is good if your kids are under 5”

Sarah A said “Beware – they have to be under 4 and not higher than a meter. Was turned away by my taller than average just turned 4 year old when I had my 2 year old and 6 month old in tow”

Beggarwood Cafe in the Park

Lottie also said “Cafe in the park in beggarwood has lots of toys”

Andrea also said “Beggarwood community centre.”

Redfields Garden Centre

Lottie also said “Bit further but the treetops cafe at Redfields garden centre in fleet is lovely too”

Sarah S said “Redfields garden centre has a little play area in their treetops cafe upstairs”

Rosie and Bean Play Cafe

Michelle said “Rosie and Bean in fleet is fab!!! Worth messaging their Facebook to book a table as they are very busy in the mornings”

The Overton Coffee Shop

Kate said “The Overton Coffee Shop has children’s books/toys and a little table”

The Tea Bar

Abigail said “The Tea Bar in Basingstoke is a lovely independent coffee shop/cafe. They do all sorts of food and they have loads of toys for toddlers and kids to play with”

Wellington Farm Shop

Ruza said Wellington farm shop has an outside area with a great adventure house, some animals to look at and inside a small selection of toys and books for use.”

Proteus Creation Space

Stephany said “Proteus has a little toy corner”

Lasham Gliding Centre

Michelle also said “On a sunny day, Lasham Gliding Centre has a great play park, cafe/restaurant plus you get to see all the gliders and planes”

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New Class!! – Baby Mindful

Baby Mindful classes are an amazing opportunity for parent and baby to connect and spend time getting to know each other in a calm supportive environment. It’s so easy to be caught in a whirlwind of being busy, and Baby Mindful is an opportunity to leave the to-do list and worries behind, and focus on your baby, and also your needs too – Time to just “be” rather than “do”.

You will also learn tools to help you manage the emotional rollercoaster of parenthood (and indeed life!), that will remain valuable throughout your journey as a parent – the ability to respond rather than react to situations, and be the calm your baby seeks.The classes follow a different theme each week and offer a range of activities to support the natural development of your baby, using activities that will gently stimulate and calm them and support their cognitive, communicative, social, emotional and physical development.

Each class has seven sections with different activities in each – Move, Play, Stretch, Feel, Breathe, Believe and Relax – with benefits for both your baby and you.

Classes are for 0-6 month babies at 10am, and also more action based classes for 6-12 month babies at 11:15am.

Overton Community Centre, Overton, RG25 3HB
https://www.facebook.com/babymindfulwithlaura/

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Review 2019: Thula Mama, Relax and sing whilst enjoying the soothing therapy of salt!

Review 2019: Thula Mama

Thula Mama is a unique and relaxing activity where mums with babies can enjoy singing together in a group whilst cuddling their babies and generally having a lovely time.  There are groups all over the country, but Basingstoke’s offering stands out from the rest in its venue – The Salt Lounge is Basingstoke’s first salt therapy space and is conveniently located close to Festival Place just off Wote street.  It offers treatments that can help alleviate breathing difficulties such as asthma as well as soothing skin conditions such as eczema.

At my first session it was a small enough group to not feel overwhelmed.  Rebecca, who organises it, was super friendly and we were offered tea and biscuits in lovely reusable mugs with lids (to prevent accidents from little grabbing hands!).  We relaxed in the waiting area and chatted for a while, before heading into the therapy room for our singing session.

The therapy room is a soothing white cave of tranquility.  There are comfortable reclining chairs with low arms and footstools, perfect for feeding baby.  You can choose to go barefoot, or with protection over your shoes, and the salt on the floor feels lovely between your toes.  There are mats and toys laid out on the floor for the babies to play, and the lighting is slightly dimmed for relaxation.

The songs at Thula Mama are simple, easy to learn traditional songs from around the world.  The words are written on a flip chart and the tunes can be picked up after hearing the song once.  We sang each through several times, adding in harmonies as we went, and I felt a real sense of achievement from learning some lovely-sounding music and enjoying singing it in less than 5 minutes!  There are no auditions, and no worrying about having any previous experience of singing – it’s all about joining in and having fun with other mums!

Facilities-wise the venue has everything you need – there are lockers for you to leave valuables if you wish, prams can be left in the waiting area where there is always a member of staff present, and the disabled toilet has a changing table too.  There are a couple of steps into the building, but there is always someone to help get prams in if needed.

I left my first session feeling both physically and emotionally refreshed.  My little one and I both had colds at the time, and I’m sure the salt therapy helped us feel better, and it was such a nice change to do something calming and relaxing with babies (although we are all for the sensory play and bright colours and loud noises of other baby groups too!).  I have since been back every week for the past couple of months and treat it as my weekly retreat!

I give Thula Mama 5 out of 5!  At £10 per week it’s really reasonable, especially considering you get a salt therapy session for free!  The first session is free for you to come along and try, so what are you waiting for?  Get in touch on the link below:

https://www.facebook.com/ThulaMamaBasingstoke

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NHM Readers Recommend: Family Yoga Classes

An NHM Reader recently asked “I need some help if possible, I have an 8 year old who wants to do a yoga class with me. Do you know any that take children of this age in a joint class. I’ve found some that are for kids but no parents allowed or some for adults but no children under 16.”

Thank you for all of your responses, listed below in no particular order.

Please bear in mind that listings may change in subsequent years, but hopefully they will still be a good base point for your own research.

NHM Readers Recommend: Family Yoga Classes

Sue said “I do yoga with my 10yr old, but it’s at home using the 30 day Yoga on Prime. It’s only 20 minutes and it’s great”

Vickie said “We do yoga at home but it’s on YouTube there’s a woman who has her own channel. It’s fab as she does it along to stories! Both my 5 & 9 yo love it and it’s a good wind-down before bed…It’s such a clever idea because it keeps them engaged too!”

Jo S replied “Yes we do this too…cosmic yoga”

Becca said “Nat runs fab classes The Little Yoga Company

Katie replied “I also recommend Nat”

Vicky said “Young yogis Gina at chineham village hall saturdays”

Ruza said “Recommend Young Yogis with Gina at Chineham village hall Saturday mornings. Very flexible and will let parents and children do this together.”

Kath replied “I run Relax Kids Basingstoke and at some point will be adding children/family yoga to my offering but it won’t be for a while”

Sarah said “Karma Kidz Yoga Absolutely brilliant family classes – but in Farnham, so might be too far for you.”

Hana said “There is a class in Chute House in town centre every Sunday. Suitable for ages 4+”

Claire said “loubedfordyoga was going to run childrens classes but didn’t have enough uptake last year. Highly recommended as a teacher for beginners. Based in Basingstoke too”

Jo R said “Sue Cordery did a class just before Xmas and may do more? We really enjoyed it.”

Don’t miss out on future posts like this – you can receive updates directly to your inbox by email by adding your email address to the box on the top right of this page and hitting subscribe. You can also follow NorthHantsMum onTwitter, Facebook ProfileLinkedIn and Feedly. I hope to see you there! 

Junior and Family Classes at Basingstoke Sports Centre

Junior Bootcamp at Basingstoke Sports Centre Thursdays and Fridays 4.25-5.25pm (this half term started last Thur and Fri and is £22.80 for the six weeks, there are still spaces). Next half terms starts 25th&26th April.

Mini Movers at Basingstoke Sports Centre Thursdays 11.15-11.45am (pre-school movement class), this half term is 6 weeks long and is £12 for the course, (works out at £2 a class).

Family Pedal at Basingstoke Sports Centre Saturdays 12.10-12.40pm. Spin class for the whole family. Also £12 for 6 weeks this half term (spaces left).

For more info: https://www.mybst.org/basingstoke

Don’t miss out on future posts like this – you can receive updates directly to your inbox by email by adding your email address to the box on the top right of this page and hitting subscribe. You can also follow NorthHantsMum onTwitterFacebook ProfileLinkedIn and Feedly. I hope to see you there! 

Baby Mindful – Free Taster Sessions!

Free taster sessions available with spaces on Monday 11th and Monday 18th March, 10.30am in Overton Community Centre

Baby Mindful classes are an amazing opportunity for parent and baby to connect and spend time getting to know each other in a calm supportive environment. It’s so easy to be caught in a whirlwind of being busy, and Baby Mindful is an opportunity to leave the to-do list and worries behind, and focus on your baby, and also your needs too – Time to just “be” rather than “do”.

You will also learn tools to help you manage the emotional rollercoaster of parenthood (and indeed life!), that will remain valuable throughout your journey as a parent – the ability to respond rather than react to situations, and be the calm your baby seeks.

The classes follow a different theme each week and offer a range of activities to support the natural development of your baby, using activities that will gently stimulate and calm them and support their cognitive, communicative, social, emotional and physical development.

Each class has seven sections with different activities in each – Move, Play, Stretch, Feel, Breathe, Believe and Relax – with benefits for both your baby and you.

Weekly classes will be starting in Overton after Easter, with some taster sessions coming soon. I can also visit your home for 1:1 or family sessions, or for a session with your own group of friends, such as a NCT group.

For more info: https://www.facebook.com/babymindfulwithlaura/

Don’t miss out on future posts like this – you can receive updates directly to your inbox by email by adding your email address to the box on the top right of this page and hitting subscribe. You can also follow NorthHantsMum onTwitterFacebook ProfileLinkedIn and Feedly. I hope to see you there! 

NHM Reader’s Experience: Children with Additional Needs, 5q14.3 deletion

Thank you very much to the NHM Reader who has written today’s post. It’s a very brave thing to write about and she’s done a brilliant job. 

NHM Reader’s Experience: Children with Additional Needs, 5q14.3 deletion

I have spoken to Louise a few times about how we can raise awareness about children with additional needs so I agreed to write a post.

I am keen for my daughter and children like her to be included, respected, accepted, encouraged, supported and loved. Hopefully raising awareness helps with this.

I have a beautiful daughter with a rare chromosome disorder. That rare it is only seen in 1 out of 120 million people !!!!

I believe there isn’t anyone in Basingstoke with the same condition, so thought it was worth explaining. I will start by describing my daughter’s story.

When she was born in April 2015 and as far as we knew she was “normal”, weighing a healthy 8lb 8oz, passing all tests & was absolutely gorgeous.

We joined the standard classes & groups making mummy+baby friends at each one. Everything was lovely for the first few months. Then between 4-6 mths a few things started playing on my mind, why is she not doing so well as the other babies ? I put most of it down to the fact she was the youngest and everyone kept telling me….

“all babies are different”

“she will get there in the end”

“all babies learn at different rates” etc

When she got to about 7 mths things became more difficult. Taking her to classes & groups started to become a struggle. Simple questions from other mums upset me, even like the standard opening question “how old is she?” I used to panic straight away thinking they were asking as they noticed how little she could do. But it’s the most common asked 1st question. The list was also getting long of all the things she couldn’t do which she should have really done much earlier e.g. roll, sit unaided or crawl. So I went to the GP who agreed a referral to a paediatrician was needed.

We had to wait till she was 9 months to get this appointment. So we enjoyed our 1st Christmas together as a family of 3 and carried on as usual. We also attended a lot of her friends 1st birthdays which was difficult as they were all walking or at least standing and walking with a parent. Whereas we were getting excited as she had just mastered a roll!

When we saw the paediatrician and we stated her short list of current milestones he referred us straight away for tests, bloods were taken that day and an MRI scan booked. The following month she had her MRI scan. Such a scary and long day at the hospital but she handled it so well. She is a placid and content person.

All her tests and MRI scan came back negative. The paediatrician just said they were waiting on the genetics team to get back to him. Everything sounded fine – Big sigh of relief. She then had her 1st birthday in April. She had 2 parties and we had a little holiday in Butlins. Our 1st family holiday. She couldn’t go on most of the rides or enjoy the parks but we had a nice time. She loves the water and the pool there is great.

At 13 months old we went back to the paediatrician and were given the devastating news that she had a rare chromosome disorder. 5q14.3 deletion. What even is that?!? Let’s ask the doctor, but even he couldn’t tell us much about it as he hadn’t come across it before. He downloaded a leaflet which explained the condition & sent us on our way.

Reading the leaflet I was in flood of tears…..

“May not walk till much older if at all”

“May never talk”

“prone to autism, epilepsy, hypotonia etc etc etc”

I was numb. Trying my hardest not to get too upset or stressed as I was 5 months pregnant. I knew I needed to be strong for my unborn child and also be there for my little girl who that same day had further blood tests along with Mummy and Daddy to see if we had passed her this. As if I didn’t feel guilty enough as it was.

We went to see the genetics team in Winchester. Finally, someone can answer our many questions. What did we get, the same leaflet that was given to us at the paediatrician appointment. However, we also found out that within her 5q14.3 deletion she was missing an entire gene – MEF2C. We later found out this is a commanding gene and explained many things.

At 17 months her baby brother was born. As I had to have a c-section the 1st 12 weeks we had visitors every day and a few people supported us so well and I will be eternally grateful. Then followed some of my loneliest & darkest days of my life. It was winter. I struggled to leave the house with both babies as I couldn’t carry them at the same time. The visitors became few and far between and the days were long and hard. Then the 2nd birthday invites started to roll in. I felt pleased that she was still being included but also extremely anxious about the fact that she was VERY different to her peers now. She was still a “baby” & they were all clearly “toddlers” running around, jumping, laughing etc whereas she could not even stand or crawl.

Now she was a little under 2 years old and her little brother started crawling at just 4 months old. I knew 1 day he would overtake her in milestones. But I had not yet prepared myself.  She had been trying all year to master crawling and he picked it up in a few days. I was honestly depressed. But also felt guilty that I couldn’t be happy for him as I was grieving for her. How bad a mother am I!!

However with each passing milestone he achieved, for instance walking at just 9 months I could then be happy for him. The 1st one was just hard. It seemed to come so easy to him with very little effort. Why is life so unfair? To make some children work so hard for what many people take for granted. I may never hear my daughter say she loves me and that is the hardest thing with all this. I can cope (well possibly my back can’t) with the physically side of this. But if she never talks, that will slowly break my heart.

At 2.5 years she got a place at an amazing special needs nursery. She also has lots of equipment now like a stander, a supportive chair and a walker. Within 3 months at the nursery she was doing well and started crawling!!! It’ss about 1 year since then and I still stop whatever I am doing to watch her crawl as I am still overwhelmed and emotional to see it.

She still continues to amaze me all the time. She can almost now stand unaided and is trying so hard to pull to stand up. She loves music and water so we are very grateful we get to do both at the amazing Bluebells facility in North Waltham which is funded by the charity Sebastian’s Action Trust.

If you are reading this and think or know your friend or family member has a child with additional needs, I would encourage you to reach out to them. They just want to feel supported and to be included and treated the same as anyone else. Empathise and listen if you can. But they certainly don’t want pity though, that is very different.

I often wish I had an easier life. But if that meant giving her up (or indeed giving up on her) I soon stop wishing that. I am blessed to be given my daughter. She is unique, loving & so special. She puts a smile of my face every day.

Some things I do that help. Some are much easier than others, some I don’t do all the time and some you may need help with

  1. I don’t compare her to others
  2. I don’t think about what she should be doing at her age
  3. Applied for financial help – Disability Living Allowance
  4. Contacted local help for support and advice hampshiresendiass@coreassets.com
  5. Tree tots. This is a coffee morning. Run every term time Wednesday 10-12. For parents of pre-schoolers
  6. I try to have separate time to concentrate on each child (when possible). My children couldn’t be more different and need/want very different things from me
  7. To not be afraid to ask for help. I need to get better at this myself.
  8. Me time. I don’t get this often, but I try to ring fence some pamper time or catch up with friends
  9. Seek support from charities (Like the above-mentioned Sebastian’s Action Trust)

Also Family Fund give grants (up to £500 per year) according to child’s needs

  1. Find Facebook groups with people who have the same or similar condition. I am on a few groups like this 1 in particular are like my extended family even if the group is only 300 people and are all over the world. This means if I am not sleeping and want to vent someone in Australia for instance will chat with me
  2. Find places that offer child free or carer free. 

If you are in a similar situation or would like me to explain any above points further please do get in contact with me via Louise ! If you don’t want to reach out to me, please reach out to someone. Thank you for reading to the end !!

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