NHM Reader’s Experience: Sensory-processing sensitivity (SPS)

Thank you very much to today’s NHM Reader who has shared some of her experience to benefit others.

NHM Reader’s Experience: Sensory-processing sensitivity (SPS)

I am a mum of three kids and in the past few years have been really struggling to cope with their moods and the noise they make. I have now worked out why I have been feeling as I have and thought I’d share this with you because it might help others, too.

All three of my kids were very much wanted and planned and we were so happy when each of them was born. What I didn’t anticipate though was how much their noise and physical demands were going to challenge me. It got worse over the years and in the end I felt I was in a constant state of anger and that I never fully calmed down – I went from 0 to 100 in 2 seconds over very small things.

By now, even happy noises from children other than my own put me on edge immediately. I was very unhappy about this and shed many a tear in the evenings – and in the daytime because I had also got so very emotional – and complained to my poor husband. He tried to help but couldn’t really understand.

I researched many conditions that could explain just how I felt. Stress, depression, various phobias, even autism in female adults, but none of it really described how I felt. Until I came across “sensory-processing sensitivity” (SPS for short). People who are affected are called “highly sensitive persons”; their brains can’t filter out all the different stimuli that enter during a day and as a consequence they can feel greatly overwhelmed while the brain tries to deal with it all.

I have never been very good in noisy, crowded situations, I can’t stand the heat and I don’t like bright sunlight in my face. I also very much need my own personal space and I had started to make a connection between how these situations made me feel and how being with children made me feel.

And now it all makes perfect sense.

Before we had the children, I would either avoid situations that I found stressful (I have never been to a concert in my life and avoid going into busy town centres as much as possible) or I would have time to give my brain a break afterwards. When you have kids, that is often impossible and so the stimuli build up and up, leading to the feeling over overwhelm and even anger.

SPS is not an illness but rather a personality trait but just knowing why I feel that way has made my life much easier. I am still at the beginning of my own journey but I now try limit the amount of noise I subject myself to by, for example, wearing ear defenders at home even when it is not particularly noisy or taking five minutes in a quiet room when I have just sat in the car with the kids for half an hour, to give my brain that break it needs.

There is some useful information on the internet and, now that I know what to search for, I have found many blogs by affected parents. Not all have the same triggers as me, as all senses can be affected, but if any readers feel they are struggling with noises, lights, smells, crowds, etc or are otherwise very emotional I suggest they google SPS and highly sensitive persons.

If anyone feels the description of SPS fits them I would also be very happy to be contacted to exchange thoughts and ideas of how to cope with it. (please drop me an email at NorthHantsMum@gmail.com and I will forward it to the lovely lady who wrote this post).

My Experience: The end of Y2

You may have noticed that I’ve been going on and on and on about our experience of moving Miss NHM to a new school so I thought it was time to write something about my experience of Y2.

Four days into September 2017 term we removed Miss NHM from her old school.

The school pastoral team were arrogant enough to do completely the opposite of the comprehensive care plan that myself, Miss NHM’s paediatrician and Miss NHM’s GP put together over the summer and made Miss NHM sicker during her first week back at school. I have since found out that it was illegal for them to do this, based on the Department for Educations “Supporting pupils at school with medical conditions” comprehensive document.

Needless to say that was the icing on the cake after two years of despicable treatment of my daughter.

It was an incredibly stressful time. During that week that Miss NHM started her new school my car broke, the washing machine gave up the ghost, my Mother had what the professionals thought was a mini-stroke and it was the Sitting with Jane Bench auction at which the Teaching Assistant, who had been subjecting abuse at Miss NHM for months, was also at.

(When I reflect on that time, I still wonder how I didn’t end up in the nut house!)

We decided on the Friday evening that Miss NHM would never be going back to her old school.

On the Monday morning I rang round all of the local schools and was beyond delighted to find that one of my favourite schools had one space left for her (I’d already visited a few in June and July in anticipation of her old school still being beyond sh*t).

We were so, so, SO lucky and I thank our lucky stars every day that she’s now at the school she is at.

They have been….FANTASTIC!! I literally couldn’t ask for a better school. ALL of the staff are so lovely and compassionate. It’s such a brilliant school and Miss NHM has THRIVED  since she started in September 2017.

Seeing her get better over the past year as a result of just over a year of the Gluten free diet and seeing her in such a safe and happy environment has made my heart sing on a number of occasions.

She’s made some wonderful friends and she really has grown into a healthy and more confident child.

Her anxiety when she started at her new school was through the roof and I was extremely concerned about the impact of moving her to a new school but we realised we didn’t have any choice and despite her anxiety and Coeliac Disease she has completely flourished at her new school and I am eternally grateful to all of the staff at the new school who have helped with this.

Now that she isn’t in pain all of the time her reading has gone off the charts! I’m having to go to the library to borrow books for her as she’s read everything at home and for her year in school! (did you know that you can now borrow 30 books at a time on a children’s library card? Thanks Su for the heads-up!)

Her maths is still behind because she missed most of YR and a lot of Y1 as she was so poorly but she’s getting up to speed quickly.

She has lots of friends in her year and is WAY more chatty that she used to be (double edged sword) probably because she isn’t in pain now. It’s been wonderful to see that she’s been in a year where the children are all down to earth and, apart from one child, there has been no bitchiness or nastiness.

Even the school Mum’s are all lovely. Yes, there are a few cliquey’s but nowhere near as many nasty Mum’s (there were lots and lots of lovely Mum’s there too!! Just in case my friends from there are reading! <facepalm>) as there were at the old school.

With hindsight we probably should have moved Miss NHM to another school earlier but we were struggling with getting her well again and that was our focus. I do believe that everything happens for a reason and when it happens when the time is right.

I’m thankful that we moved her AFTER her diagnosis so that her “unexplained” sickness didn’t carry with her and I’m beyond grateful that the “new” school have been so fantastic.

Based on my experience, if your gut is telling you that your child isn’t happy in their current school have a look around at other local schools and go and visit them. Literally everyone I know who has moved their child to another school has found it a very positive experience for the child in question.

I’m really looking forward to Y3 and seeing how Miss NHM continues to bloom, to become more healthy and overcome her anxiety and thrive. Thank you to those of you who have supported us along this journey so far! I’m very, very thankful for all of you!!!

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Inflatable Fun Day – SEN Only Session, Wednesday 29th August 2018

JV Bouncy Castles have arranged a SEN only session on their inflatables takeover day on Wednesday!

If you have a child with special/additional needs please come along.

Aldworth School
Wednesday 29th August
1.5 hours
0915-10.45
Siblings welcome

Follow the link to book –
https://www.bouncycastleshire.co.uk/pages/inflatable-fun-days

Please see attached photos for more details too

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NHM Reader Post: Bladder exstrophy and epispadius

Thank you very much to the Mum who has shared some of her, her son’s and her families journey today.

It takes great courage to share something like this and she’s done a brilliant job.

Children With Additional Needs – bladder exstrophy and epispadius

If you met our son you would not know there is anything different about him, he is a fun loving, sport mad, confident 6 year old. However, he was born with a rare birth defect – bladder exstrophy and epispadius – basically his bladder was outside his body.

We ‘luckily’ found out during a routine 20 weeks scan that there was something not quite right, some specialist scans later our unborn baby had been diagnosed with a rare birth defect. Although it was difficult, knowing before birth made it easier for us to deal with, find the right support groups and get ourselves prepared.

When he was born within 12 hours he was taken to Great Ormond St Hospital for his first operation. This was particularly difficult for me as I could not be discharged from Basingstoke, due to difficulties during the birth and he underwent the surgery at 1 day old without me being there.

He underwent his second surgery at 23 months. This was harder to deal with for different reasons, he was now older, understood more about what was going on and didn’t like it when we left his room even for a few minutes.

As a baby there were few differences between him and his friends, everyone wore nappies! As time has gone on the differences are much more apparent. He is urinary incontinent and still wears pull ups. He deals with this really well and manages himself at school and when away from home.

It is hard for him as he is desperate to be like everyone else but as yet he has unable to achieve continence. He is fully aware of his differences and we hope that the challenges he faces over time get easier for him and eventually we will achieve dryness.

Treatment and prognosis for each child with this condition is different which makes it difficult for us to know what the future prognosis might be. We have regular trips to the hospital for biofeedback sessions (practice using the pelvic floor muscles) and further operations may still have to take place. Worst case scenario would be him needing a catheter and although this is not the ideal having seen children deal with this sometimes it seems the easier option.

We try on a daily basis to get him to do exercises and remind him to use the toilet but the bladder capacity and pelvic floor muscles are not developed enough.

We make sure that he has the same opportunities as everyone else and his condition should not hold him back from doing anything. The routine of school is good and he remembers to change, but as soon as there is a school trip or sports event we worry if he will remember and if he has all the supplies he needs.

Finding people that relate to our situation is hard as this condition is rare (approx. 1 in 70,000), but through the hospital and social media there are people we can talk to. Our support from hospitals, school, friends and family has been amazing, other children have been curious about why he is still wearing pull ups but no teasing has happened yet – this is something else we worry about as he gets older.

Given the opportunity we would love him to be ‘normal’, but his condition will not define who he is but hopefully make him an even stronger character than he already is.

P.S. Please remember that not all disabilities are visible.

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Anna’s Challenges

Hi, my name is Rachel Marke and I founded the charity Anna’s Challenges just over 7 years ago. Our aim is to help support children with Cystic Fibrosis in Basingstoke and surrounding areas.

It started a bit by accident – 7 years ago my daughter Anna, who has Cystic Fibrosis (CF), was having one of her many 2 week admissions at the North Hampshire Hospital and she was asked to try out a vibrating vest which could really help shift the mucus clogged up in her lungs.

The problem was the vest was on loan to the physio team and they didn’t have the budget to purchase one. I put on my Facebook status that I’d like to try and raise some money to help buy it and the response was amazing!

We were soon thinking of a name to spearhead the fundraising and soon after Anna’s Challenges was born.  We soon became a registered charity and have a group of wonderful trustees.

We had no idea at the time that it would become as big as it has and this is purely down to the amazing support we receive from friends, family, local people and local businesses that have chosen to support us, whether it be through fundraising, offering their services, attending our events or simply helping to share our news/events on social media.

I have been overwhelmed over the years with the love and support we receive and it has enabled us to really branch out in the many ways we can support the children with CF and their families.

We also funded and arranged for the assessment room on G Floor to be totally redecorated (my cousin did it) and this is my favourite photo of part of it.

Anna takes over 35 tablets a day, she has to do 3 sets of physio a day, 3 nebulisers and two inhalers every single day – all whilst she’s well.

When she’s ill it increases significantly and also with 2 week admissions. Kids with CF have such intense daily regimes so it’s really great that we can help make their day to day lives a bit easier with improved physio and medical equipment and make it more comfortable for their 2 week admissions.

 

We are guided by the fantastic CF team at the hospital on how we can best help the children and their families.

We are able to support them through donating physio equipment, physio toys, medical equipment, donations that make the hospital rooms more comfortable – more home-from-home, we fund the CF sibling support group, we provide physical activity grants and travel grants to the families, family days out, and however else we can help to make their lives a bit easier and hopefully sometimes, a bit more fun too!

On the 6th October 2018 we are hosting our annual Black Tie Charity Ball at the beautiful Oakley Hall. It’s a great excuse to get glammed up with friends and have a wonderful evening full of music, dancing, laughter and lovely food all whilst helping support children with Cystic Fibrosis.

If you’d like more information, or to buy tickets, please go to our website www.annaschallenges.co.uk.  

If you’d like to keep up to date with our latest news and events, find us at the following:

Facebook – facebook.com/annaschallenges
Twitter – @annaschallenges
Web – www.annaschallenges.co.uk
email – contact@annaschallenges.co.uk

Please get in contact if you have any questions, would like to do a challenge for us or attend one of our events – we’d love to hear from you!

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NHM Readers Recommend: Private Speech Therapists

I had a question from a NHM Reader that I asked the NHM Community to help with: ‘Does anyone know of any private speech therapists for children local to Basingstoke? (Already referred)’. Many thanks for your responses, listed below in no particular order:

NHM Readers recommend – private speech therapists

Carina says “Jane Langdon Speaktome is based Fleet way and is great”

Lisa says “Carolyn Oates in Calleva Park Tadley may know someone. She is a private paediatric occupational therapist. Google her”

Sarah says “https://beta.helpwithtalking.com/ this is a good website. My son has been seeing Yvonne Hedgecock who we found via this website”

Christine says “Try the owl therapy centre. Speech therapist based in Aldermaston”

Helen says “Depending on your reasons for going private, you might be interested in this:

http://www.reading.ac.uk/Psychology/Clinics/SLT-Independent-Paediatric-Clinic.aspx It’s a non-NHS clinic but you don’t have to pay. We waited 2 weeks for an assessment. Does mean traveling to Reading though.”

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Hampshire Dyslexia workshop

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My Experience: Being Authentic

One of my objectives for NorthHantsMum is to share some of my experience of being a Mum.

The past three years of Motherhood have been really tough for me.

I haven’t talked about it on NorthHantsMum because it’s been a very, very difficult turn of events that we’ve dealt with privately as a family. Not knowing what was “wrong” with Miss NHM for nearly 3 years was indescribably draining and stressful.

However, I’ve realised I can’t be authentic on NorthHantsMum without talking about my experience of Miss NHM’s Coeliac Disease.

We’ve had many discussions as a family about whether it’s the right or wrong thing to share this with NHM Readers as it’s a very private thing.

I’ve talked to Miss NHM (6 years old) about it and she was very wise and told me that it’s ok to tell other people about it because it might help them too. That, right there, is one of the reasons why my daughter is so awesome.

Coeliac Disease

Miss NHM was diagnosed with Coeliac Disease in May 2017.

Coeliac Org say this about Coeliac Disease:

” Coeliac disease is a well defined, serious illness where the body’s immune system attacks itself when gluten is eaten. This causes damage to the lining of the gut and means that the body cannot properly absorb nutrients from food. Coeliac disease is not a food allergy or intolerance, it is an autoimmune disease.” (Coeliac.org).

1 in 100 people have been diagnosed with Coeliac Disease but the belief is that it is actually 1 in 25 people who have it.

There are over 200 possible symptoms of Coeliac Disease and it takes the average sufferer 13 years to be diagnosed. Medical advances are moving forward so quickly that it’s easier to be diagnosed these days, but Miss NHM is still incredibly lucky that we established what the issue was in just 2.5 years, particularly as there is no history of Coeliac Disease in either of our families, that we know of. (Coeliac disease does run in families but not in a predictable way)

The journey

I’ve alluded to it on the blog before but the 2.5 years leading up to her diagnosis were harrowing. I’ve written a post which explains the impact that Coeliac Disease has had on our lives but I’m no where near ready to publish it. It’s still too raw.

When your child is sick and you don’t know why and it takes years to find out why…yeah, it’s been really tough.

I was a bit naive about coeliac disease. I’d heard of it and knew people with it but I thought it was just a case of someone avoiding gluten in their diet and then everything would be fine.

It isn’t.

It’s far more serious than that.

We have to monitor EVERYTHING that Miss NHM eats, to ensure that it doesn’t contain gluten. She has regular blood tests and we have to monitor her energy levels very carefully as gluten free (GF) carbs don’t have the same energy density as “normal” carbs.

However, I am so, so, SO very grateful that Miss NHM was diagnosed so early in her life.

The impact of Coeliac Disease

Coeliac Disease has had a huge impact on my role as a Mum.

Every time we do something or go somewhere I am continuously thinking ahead. Do we have enough food? Will there be any alternatives that she can eat if we don’t have enough? Can we take our own food? Do they have any understanding of Coeliac Disease? Will someone offer her something and I will have to leap in and whip it away from her before she eats it? Do we have a subsitute to hand? Have they even heard of cross contamination?

There are the things that you would expect to look out for, like anything containing wheat, e.g. bread and pasta.

But it’s the things that you wouldn’t expect like barley squash, chocolate, chips, marshmallows, soy sauce, most ketchups, some fromage frais, and even playdough which is made with gluten. There are many, many, many more products which contain gluten which we have had to remove from Miss NHM’s diet.

On the rare occasion that we eat out or at someone else’s house, I’m checking to see whether they understand about cross contamination which is really important for people with coeliac disease. For example, you cannot put a knife in butter that has been used on “normal” bread, because even one crumb can cause Miss NHM weeks of pain and discomfort which affects her wellbeing, her health and her education.

I feel like I spend a lot of my time educating our friends and family, who have in the most part been amazingly supportive, about what cross contamination is and what Miss NHM can and can’t eat.

Using the coeliac.org phone app is second nature now. It’s fantastic!! There are over 100,000 food items listed and you can search by product name or bar code. This little app has been a life saver on many occasions.

Attending events and going anywhere new is now a BIG thing. Birthday parties are a nightmare, with birthday cake and sandwiches. We have been incredibly lucky that parents who we don’t know who have hosted birthday parties, have gone out of their way to ensure that Miss NHM doesn’t get singled out and isn’t treated any differently. We are very, very thankful for that. I try to make it as easy for other parents and friends by offering to provide food as it’s already a part of our reality.

Holidays abroad just aren’t an option at the moment although Coeliac.org has lots and lots of awesome advice for this.

I frequently get invited to review restaurants on NHM but we have to be so careful these days that I just ask one of the NHM Writers to go instead as it’s not worth the drama of having that discussion about the food not just being gluten free but also being free from cross contamination.

It’s such a HUGE part of our lives that I can’t write about being a Mum without talking about it.

Coeliac Disease and NorthHantsMum

As a result of the experiences that we have had with the NHS (unfortunately pretty dreadful in this instance) and The Prison for two years, most of my energy has been spent dealing with all of this and more. I’ve been fairly quiet on the blog over the past few years because of this.

However, now that Miss NHM has been on a Gluten Free (GF) diet for nearly a year and we’ve moved her to a far more sympathetic and understanding school, and as my energy is returning because I’m no longer battling with the institutions in Miss NHM’s life, I’m finding the urge to write more about our lives and more about my experience of being a Mum.

I don’t want NorthHantsMum to turn into a blog which is all about our experience of Coeliac Disease. I don’t want to bang on and on about it (well, I will try not too!) but I do feel that one of the reasons that we’ve been through this experience is so that I can share what we have learnt and also use this as an opportunity to educate people a bit more about what Coeliac Disease is, what it’s like being the parent of a child with an autoimmune disease and how it impacts our lives.

I never, ever, EVER wanted to be that Mum who has to make a big deal about what their child eats ALL the chuffing time.

I never wanted to be the Mum who has to check every…single…item that passes my child’s lips.

But I am and I’m dealing with it.

We’ve been incredibly lucky so far with the support that we have received from our wonderful friends and family and I hope this post goes a little way to explain what it’s like being the Mum of a child with a serious autoimmune disease.

Coeliac.org

If you would like to help Miss NHM with managing her disease, one of the best ways you can do this is to help raise funds for Coeliac.org. They have been invaluable for us.

For example, last month Miss NHM presented to the whole of Y1 and Y2 about Coeliac Disease as part of “Inclusion week” and we used one of the “Young Champions” packs from Coeliac.org to help with this. I won’t dwell on the fact that she told the Y1’s that she got Coeliac Disease from when a tarantula bit her as a baby (facepalm!) but I’m so proud of her for doing this because less than 6 months before she wouldn’t have physically been able too.

One of the ways you can help to fundraise is to join Coeliac’org’s weekly lottery where you can win up to £10,000 every week. It costs just £1 a week to enter, or £2 to double your chances of winning.

https://www.coeliac.org.uk/get-involved/support-us/weekly-lottery/

The money raised will not just help Miss NHM but anyone impacted by Coeliac Disease.

As always, thank you for your support and thank you for reading NorthHantsMum!

Louisex

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My Experience: Y2 Autumn Term

I am absolutely delighted to say that Miss NHM’s Y2 Autumn term has been…AMAZING!!!!! She is THRIVING at her new school.

Finally, finally, finally she’s had a positive experience of school. WHOOOHOOOOOOOOOOOOOO!!!!!!

Moving Schools

At the beginning of this term (September 2017), 4 days into the new school year, we removed Miss NHM from The Prison.

It became blindingly obvious that The Prison weren’t going to listen to anything that we, and the medical profession, were saying needed to happen for Miss NHM.

In May 2017 Miss NHM was diagnosed with a lifelong autoimmune disease. I’ve not discussed it on NorthHantsMum because it’s not something that should be discussed in a public forum and Mr NHM and I are still processing what this means. It was a massive shock and it’s been incredibly difficult to deal with.

In the final months of Miss NHM’s Y1 at The Prison, she was subject to bullying and abuse (I don’t use those two words lightly) at the hands of one of the members of staff (again, not going to discuss details in a public forum) and the school made things as difficult as they possibly could.

So, we made the incredibly tough and difficult decision to remove Miss NHM 4 days into the new term. I wanted to give The Prison one last opportunity to rectify things and they screwed it up massively.

Finding a new school

I spent a morning phoning round all of the local schools asking if they had any places left. Based on The Prison’s history I’d already gone to look at two local schools in June 2017. I was extremely disappointed to find that two other local schools that I phoned that Monday morning in September were quite rude to me when I mentioned Miss NHM’s disease and implied that they would not be able to support her effectively.

I was EXTREMELY delighted to find that there was one place left at a local school that I’d visited earlier this year. I was really, really impressed when I went to see the school which only a few years ago was under special measures. It was very obvious that the team  in place were extremely passionate about what they were doing and their main objective was to ensure that children had fun at school, that they enjoyed school and that they learnt lots, not just educationally but emotionally and spiritually – the whole package.

I did a little dance when they told me that Miss NHM could start the following day. Actually, I did a REALLY LONG dance because I was sooooo relieved!!!!

They advised that Miss NHM could start the following day but I didn’t have time during the work day to get to the shops to get her the new school cardigan so she started on the Wednesday.

Starting a new school

Both of us were obviously quite nervous but the new school bent over backwards to ensure that both of us felt very welcome. The complete opposite of what we’d experienced before!

Within a week Miss NHM had made lots of new friends, including a best friend that she is “thick as thieves” with, as the teacher said at the first parents evening in October! lol.

Miss NHM settled in far better than I ever imagined she could. The difference in her behaviour after the first week was astounding. I had no idea what a negative effect The Prison was having on her.

Things just got better and better. The school have been soooo understanding and soooo supportive and everyone is so lovely and welcoming and HUMAN! Empathy and compassion is normalised (even with the reception staff!), which has been a massive shock as that’s definitely NOT the experience that we’ve had before.

HAPPY, HAPPY, HAPPY!!!!!

Miss NHM’s reading has gone off the charts, she’s improving with her maths, her mental health has improved dramatically and although she is still showing signs of trauma and anxiety the new school have bent over backwards to support her.

I have been wracking my brains for the past term to try to find something that I don’t like about the new school and I just can’t! I love it ALL! I cannot praise the new school enough. This may be because of the dreadful experience that we had at The Prison so my expectations were very low already but I’ve spoken to several other parents at the new school and they love it too.

I’m so delighted, after an incredibly tough year, to say that we’ve ended on a real high. I no longer have to battle for an hour every morning to get Miss NHM to school, she happily skips in. No more dragging her through the door with the teacher’s help, she skips straight in without even looking back to say bye!

To see her happy to go to school every day has been a real revelation and to see her receive the support that she has needed since she first started school in 2015 has been such a relief.

So, FINALLY, I can report that we’ve had a very happy experience of Y2 so far. YAY!!!!!

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Tree Tots Group: For parents who have Babies and/or Toddlers with Disabilities and/or Additional Needs

Do you have a baby or toddler with a disability and/or additional needs ?

If so, would you like to come to a FRIENDLY, FLEXIBLE and FREE coffee morning ?

There is no commitment. Please just come along when you can. We would really love to see you !

👍 Sensory play for children including a seprate sensory room you can access
👍Free hot drink for mum
👍Lovely supportive group when and if you need it
👍 Come on your own if you need a chat/ friendly ear or bring your child/ren for a play
👍 No booking up front
👍 Come late, leave early it stay for 2 hours. Just do whatever is best for you that day

For more information please contact one of our lovely team on 01256 475978

☄ Every term time Wednesday
☄ 10am – midday
☄ Firvale, Park prewett road
Basingstoke, RG24 9NB

Please find below some feedback from a few of the mums –

LAUREN – “It’s not often u find a place u feel so comfortable in, so nice to talk with people who understand the struggles. We are like a lil family”

STEPHANIE – “It’s been an intense 4 years and I couldn’t have survived without this group! Xx”

CLAIRE – “Tree tots is the highlight of my week. Coffee & a good gossip with some lovely ladies. Then a chilled session in the sensory room”

DEBBIE – “I’m so thankful to have been told about Treetots. It was exactly the right medicine I needed to help me through a really horrible time. Knowing I could open up about my worries and fears and cry, but also have lots of laughs too. This place is the best xx”

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