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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NHM Readers Recommend: Where to seek advice for Oppositional Defiant Disorder

In December 2018, a NHM Reader asked for: “Recommendations or advice on a child who has a condition called oppositional defiant disorder. (O.D.D), and where I can go for an actual assessment/diagnosis. NHS or private! He’s on waiting list for screening at CAHMS but they don’t diagnose O. D. D. He is in Secondary Education.”

Thank you for all your responses, they are listed below in no particular order. All opinions are the readers own and are not that of NHM.

Please be aware that listings may change in subsequent years.

NHM Readers Recommend: Where to seek advice for Oppositional Defiant Disorder

Victoria said, “Try contact.org.uk. They may be able to help.”

Anne said, “I’ve been told my 2 year old has oppositional behaviour, I don’t know if that is the same thing but this was through patch. I was referred to them because of speech delay and the fact that the speech therapist couldn’t assess him properly. Has she tried calling solent child services? I’m sure that’s who I called initially and did a self referral. I was given the number from my health visitor.”

Carina said, “Can the school/ nursery help? Regardless of the diagnosis they should start putting some things in place.”

Marie said, “…as a senco at a nursery, speak to their nursery /school. We have lots of experience, but can also access support, information, and how /where to get more support, both at home and in the setting.”

Helen said, “Depending on the age of the child YPI maybe able to help, there’s usually a waiting list but they’re very good and while can’t always diagnose they can expedite matters where necessary.”

Katy said, “We would massively recommend Hemispheres in Camberley. They have been super with helping us get to grips with how to support our daughter’s sensory processing issues.”

Jo said, “It will depend on the child’s age. Please feel free to pass on my details to the parent, I work for Parent Voice and we can help this parent. jomaxwellheron@roseroad.org.uk 0300 303 8603″

Pixie said, “I’m a specialist dyslexia assessor etc. This isn’t in my remit to. Diagnosis but I can help. With assessment that relates to supporting referral ls etc Inc ruling other aspects out.”

Amanda said, “My (now 25 year old) was diagnosed at secondary school. It became less and less apparent after we removed him and is non existent now. Happy to advise…”

Rachael said, “My son was diagnosed by the paediatric team at the hospital. He was referred by GP practice and then assessed. We where told it was ODD and learning needs. We were not offered any support or how to deal with a child with these needs. I did my own research and by learning my child’s needs. We no longer engage in arguments we state what we would like re behaviour and walk away. He is now a lot older so easier to reason with.”

Louise NHM Smith said: It could be worth joining the following FB group, who provide support for parents of children with Additional Needs in Basingstoke and surrounding areas: HPCN Basingstoke Share Together

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NHM Readers Recommend: Support groups for babies with additional needs and epilepsy 2018

In August 2018, an NHM reader asked: “Are there support groups or meet ups for babies with additional needs and epilepsy in the area.”

Thank you for all your responses, please be aware that listings may change over time but this should still be helpful as a basis for your own research. All opinions are the readers own and are not that of NHM.

Support groups for babies with additional needs and epilepsy 2018

Wendy said, “May be worth asking Spotlight UK if they know of any others.”

Debbie said,HPCN Basingstoke Share Together  is a Facebook group which may help.”

Colleen said, “There’s Barntots SEN at Viables too. I second Debbie’s suggestion to ask on HPCN Basingstoke Share Together .”

Shirley said, “Hazie Days run by Marti Hayes .”

Louise said,  “New epilepsy group starting 28th August please do come along for a coffee and chat”

Clare said, “Yes! Lovely bunch of people supported by amazing staff  Tree tots at the Firvale centre in Rooksdown.

Every Wednesday 10-12. Term time

It’s free. Sensory room can be accessed. 

Aimed at 0-5yrs but some mums come by selves whilst children at nursery etc. Happy to answer any questions or meet you outside on 1st time trying it.”

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NHM Readers Recommend: Groups for Children with Hearing Loss

In November 2018, a NHM Reader asked: “I have recently had my 5 week old daughter diagnosed with moderate hearing loss and will be having hearing aids. I just wondered if there were any groups or organisations In the area for parents with children who have hearing loss!”

Thank you for all your responses, they are 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: Groups for Children with Hearing Loss

Amanda said, “Chloe and Sophie’s special ears will be able to help – look them up, they are an amazing charity not far from Basingstoke.”

Luan said, “She could join the Basingstoke Voice group too as there may be advice for support on there.”

Rebecca said, “My son was diagnosed with a moderate hearing impairment at 6 weeks. He is 8 yrs old now and has had hearing aids since he was 6 months. My other son also has a hearing impairment and went through grommets and now has hearing aids. Happy to chat to this lady if she wants to message me.”

Sarah said, “There is a local group called the North Hampshire deaf children’s society. They have a Facebook page. There is also a toddler group run at park view infants by the specialist teachers for the deaf.”

Georgina said, “If she’s on instagram, Lucieandthebump has a son who is profoundly deaf and wears cochlear implants and their story may be of help.”  

Tina said, “I am a mum to an almost 5 year old daughter whom was born deaf and been wearing hearing aids since she was about 10/14 days old. There is a toddler group think it run monthly at Park View the teachers of the deaf run it.”

Samantha said, “My baby boy is 12 weeks and has been diagnosed with same condition he got his hearing aids last weekend so in the same boat as this reader, happy to be put in touch.”

Sarah said, “…the North Hampshire deaf children’s society and the toddler group at Park View were brilliant. Thankfully my sons hearing problems were due to glue ear and sorted by grommets but the year he wrote hearing aids I found both groups useful.”

Victoria said, “My daughter (almost three years) has one sided hearing. There is a wonderful group that is run by specialist teacher advisors for Hearing Impairment. It’s called- “Early years stay and play sessions” and they run once a month from Park View…”

Rebecca said, “Welcome to the emotional, scary but wonderful world of a child with a hearing loss. I second what Victoria said… The stay and play run at Park View is great. And North Hampshire Deaf children Society are a wonderful welcoming group. She’ll have a teacher of the deaf soon who will be able to give her lots of advice soon too.”

**Since this post was made, NHM has set up the Facebook group NHM Supporting those with hearing loss/Deafness**

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Help Spotlight UK!!

Hello, we are in need of help. As a charity Spotlight has been running from the old Chineham Park Primary for 9 years but sadly for us Hampshire need the building back to be able to use it to turn it into a Special Needs School which is so needed in our area.

We are very grateful to Hampshire for all of the support they have given us over 9 years however this means in April this year we need to move and find another venue for our charity work.

We currently run a food bank, clothes bank, charity shop, 1-2-1 youth mentoring, performing arts classes, holiday clubs, youth club, family support service.

We work with families on child protection or children in plans, children affected by domestic abuse, or neglect/emotional abuse, young carers, children in care, young people with mental health issues, young people who have experienced loss or separation, young people caught up with anti social behaviour and children who need help with confidence and self esteem or friendships and those who want to have fun.

We receive referrals from schools, social workers, the Early Help and Family Support Service, Health Visitors and other professionals. Currently we provide 355 spaces in performing arts a week, over 200 spaces in our after school club, 60 cases of youth mentoring and family support work and provide around 15-25 food parcels a week.

We are now needing to raise funds to be able to relocate our services so we can keep supporting those we work with. We have a potential venue to relocate to but need to secure a deposit and need to raise around £10000.

If anyone can help with fundraising or knows of premises then please contact us on 01256 325420 or admin@spotlightuk.org. Any help would be gratefully received.

The Spotlight Team

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A NHM Readers Experience: Cranial Osteopathy

Thank you VERY much to the NHM Reader who has shared their experience of cranial osteopathy today. Hasn’t she done an awesome job!! Hopefully this post will help lots of other new parents!! 

If you have a unique parenting experience that you would like to share with other NHM Readers, in the hope that your experience might help others, please email me your text and pictures to NorthHantsMum@gmail.com. 

What is Cranial Osteopathy?

Cranial osteopathy is not different to osteopathy, it is the name given to a subtle and refined approach to osteopathy that follows all the principles of osteopathy, and it is used throughout the body not just in the head. The name cranial osteopathy simply refers to the fact that it includes the structures inside the head. 
Cranial osteopaths use a highly developed sense of touch to feel subtle changes of tension and tissue quality in the living anatomy of the whole body, and to diagnose areas of strain or dysfunction. – Sutherland Cranial College of Osteopathy

NHM Reader Experience of Cranial Osteopathy

I write this not as an expert in Cranial Osteopathy but from the perspective of a mum of three.

I’ve got an eight year old, a four year old and now a three month old. My oldest had colic and reflux, my second had silent reflux and my newbie had very bad colic. I’m not sure whether everyone’s minds erase the hard bits of when they’re newborn so that you want more, or if it’s just me, but when my youngest came along, and started suffering from colic, the memories all came flooding back!

It was horrendous to see this sweet, little, placid thing be in extreme pain with her tummy; she would look at me like ‘please make this better’ and it would break my heart. We tried every colic medicine we could, one of which helped a tiny bit but did not get rid of it.

Evening after evening I would be pacing and rocking, trying to help my baby feel better. One night at 1 in the morning I decided to research what could help her, someone suggested a cranial osteopath could help. Reading more into it I saw it said that a stressful birth and c-sections can contribute towards colic and that cranial osteopathy could help. Not going to lie, I was sceptical… how could this help with my baby’s colic? Desperate to make her feel better though I booked a session.

The following week I arrived and had the first consultation. The lovely lady told me that my LO was very stiff around one side and this was probably from being in that position in the womb, this made sense to me as she was always looking to one side and hardly ever upwards. When she felt her, she said the fluid around the brain was supposed to be a smooth motion but it was ‘crashing’ against the side that was stiff. She sat with her hands barely touching my baby for about 20 minutes and told me she was hopeful it would help. However, for 15% of babies it doesn’t work, and if that was the case not to come back – I appreciated she said this as she clearly wasn’t after my money.  She said hopefully it would go away and that I’d see changes within 24 to 48 hours which should last a couple of days, and then would probably go back to normal colic.  She also said that if there was a change, we should come back for another session the next week, and that with two more sessions it would be a permanent change.

I went away thinking ‘wow that was an expensive half an hour when it didn’t look like she did much!’ That day was awful… she was beyond unhappy until 7.30, but she did two horrendous nappies which was very rare as she normally couldn’t poo! The lady had told me this would happen… she also settled much earlier that evening, but I assumed it was because of how she’d been awake and unhappy since 11 in the morning! The true test would be the next evening.

The next day after every feed, my LO burped much louder and easier than normal, something else the lady said would happen. Then the time where she would normally be beside herself came and went with a happy baby that wanted to eat, play and then sleep. That night she fed about 6.30 then to my absolute shock slept until 1, had a quick feed then went back down beautifully until I had to wake her at 8.30 for the school run!!! I couldn’t believe it, it must be a fluke, but no it continued for four days.

My baby was no longer in pain and was not waking continuously for milk to try make her feel better. Like the lady said the colic came back so I couldn’t wait for the next session. She did exactly the same thing – which looks like she’s not doing anything! After the first day of her clearing her system again I had a happy, content baby who either slept through the night or woke once for a feed… This lasted for 6 nights. I then had her last session and the lady told me that would be it and she should be fine now. I couldn’t really understand how this was possible but she was right!

It’s been three weeks since her last session and since then my baby doesn’t have colic anymore. I can honestly say it’s been money well spent. I couldn’t have even dreamt how much of a difference it would make. I thought I’d share my story as I wish that someone had told me about a cranial osteopath eight years ago… it would have saved a lot of heartache and pain with my other two children. The lady said that the NHS is looking into funding an osteopath to work in postnatal wards so that every baby born can be looked at, she said if that happened it would stop so many babies being in unnecessary pain. I hope this happens as it feels like a miracle and would help so many babies and their carers.

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My Experience: Coeliac Disease, 18 months after diagnosis

I know several of you have commented that my personal posts have been quite negative for the past few years. This isn’t exactly a positive post either, so please stop reading if that’s not your bag.

Coeliac Disease – 18 months after diagnosis

I’ve already blogged before about how I find the run up to Christmas to be really tough.

This year it’s feeling tougher than ever before.

Miss NHM was diagnosed with Coeliac Disease at the end of May 2017 when she was 6 years old, and whilst she’s doing really well I am struggling with it.

At this time of year EVERYTHING involves food.

There is the school disco with hot dogs, crisps, drinks and sweets. The Brownie end of year party with pizzas, cake and sweets, the class Christmas party with party food, making biscuits to tie in with this terms subject, the fundraising cake sale, the Christmas lunch, Christmas play dates at other peoples houses, the end of term party…

It ALL involves food. Oh and squash of course because she can’t have Robinson’s squash as it has barley in it so we have to double check what she drinks too.

Miss NHM is actually really good at checking things herself but she’s only 7 years old and she can’t be expected to check everything, although she is getting really good at asking if something is gluten free or not.

I have to check Every. Single. Thing. that she eats or drinks.

At this time of year it is utterly draining and relentless.

Coeliac Disease is a lifelong auto-immune disease for which there is currently no cure, that is triggered by eating gluten. I’ve mentioned before about how cross contamination is a really big issue when you are a Coeliac. It’s awesome that gluten free food is becoming more widely available but having to explain to people, and remembering to explain to people, the risk of contamination, that one single crumb will mean that Miss NHM is sick for a month, is exhausting.

It takes Miss NHM about a month to get over being poisoned. It affects her health, her emotional well being, her studies, her sleep. It affects everything.

It’s getting to the point where I have to say to some people in our lives that every time they poison (gluten) her they increase her risk of stomach cancer in later life. Which is so frustrating when Mr NHM and I work so very hard to ensure that she isn’t poisoned.

Recently Miss NHM was poisoned (glutoned) by a member of our extended family, even though I provided all of her food for the visit. As a result of Miss NHM’s immune system being compromised by being poisoned, she then caught a stomach bug which has taken her much longer than a “normal” child to get over. She’s very pale and very exhausted, not least because gluten free carbs don’t have the same amount of energy in as “normal” carbs. We are hoping that she recovers in time for Christmas.

We now literally have no one we can trust to look after Miss NHM that can look after her properly. I have some wonderful close friends who have offered so that Mr NHM and I can have a break but Miss NHM suffers from anxiety at being left with others because of everything that has happened too her and my lovely friends already have enough to deal with in their own families.

When I went public about Miss NHM’s Coeliac Disease earlier this year, another Coeliac parent commented that this disease really shows you who your real friends are. This is so very true for us. We’ve noticed that we don’t get invited to as many things as we used to. This might be because we are getting old and miserable (facepalm) but I also think it’s because people are just too scared in case they poison Miss NHM. Which I totally understand it’s just hard to cope with sometimes.

Having said that we have often been overwhelmed by how understanding and supportive people can be. Many of our friends have been wonderful about it. Other parents, who we have never met before, have gone out of their way to organise food and birthday cakes and birthday parties, to ensure Miss NHM doesn’t feel different or miss out. This has restored my faith in humanity on a number of recent occasions.

There are more good things. Miss NHM doesn’t know any different because this is really all that she’s known. She also suffered with “brain fog” pre-diagnosis so there are huge gaps in her memory from when she was younger. She is so good when she’s offered things that have gluten in, particularly by children at school who hand out home made goodies on their birthday, and will always give them to her teacher.

Her school have been absolutely amazing, soooooo much better than The Prison. Her class recently went on a school outing and the teacher went to the same place a week before, to scope it out and ensure that Miss NHM wouldn’t be poisoned. Her teacher has also ensured that all of the ingredients for their recent class baking were gluten free. The Brownie Ladies have also been absolutely fantastic. There are lots of activities which involve food at the Brownies but they always review every item with me in advance and I’m not expected to go and get alternatives for them.

It’s just tough at this time of year. Christmas seems to be ALL about food. It’s great that we can get more gluten free alternatives than we could even at Christmas last year but it’s making people aware of the risk of cross contamination which is the real challenge and explaining just how serious it is.

At the moment, the beginning of December, I am literally living for the 21st December, when Miss NHM breaks up for the Christmas holidays and Mr NHM and I have two weeks off work. We get to relax and know that we don’t have to constantly check all food and drink. We are hoping to brave it to the two local restaurants that we feel safe that Miss NHM won’t be poisoned at (both are accredited restaurants with Coeliac UK). We won’t be seeing any family this year because it’s just not worth the drama or stress of Miss NHM being sick for ANOTHER month.

So yeah, this isn’t a positive post but this is my life at the moment. NHM is a blog that’s supposed to be a bit about my experience of being a Mum and this is my current reality.

I know that come January we can heave a sigh of relief that we got through it and we won’t  have to really worry about food until July when the end of the academic year starts. And we have much to be thankful for, not least that it normally takes 12-13 years to be diagnosed with Coeliac Disease and Miss NHM was diagnosed in under 3 years.

If you are struggling at the moment, for whatever reason, just know you are not alone.

Thanks for reading to the end ;-).

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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
Siblings welcome

Follow the link to book –

Please see attached photos for more details too

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 PageFacebook ProfileLinkedIn and Feedly. I hope to see you there!