The Kids (Sept 2016)

So, it’s been a while since I’ve written about the children and their school lives.

Matthew is now in Year 8, the second year of secondary school and fast approaching his 13th birthday. He enjoys Maths, Science, Cooking and PE. He is still not confident with his writing and does not enjoy English but gets through it all ok. He is back on the School football team this year as a Goalkeeper.

James is now in Year 3 of primary school. The school is now an Academy and everything I’ve seen from the changes they’ve made to the school from the staffing, the security, the building – right through to the attitude and feel of the school – has been nothing but positive so far. The school felt incredibly stale in recent months. The teachers had no passion and drive and with 4 of them leaving at the end of summer term, we were more than ready for new teachers and teaching assistants. This has made a huge impact on young James. He is now happy to go to school, he looks forward to lessons and learning every day. He runs in the door with a smile on his face and is currently enjoying his work. His new teacher is a really good influence on him, he is inspired and trying really hard. With that comes the realisation that he can do things that he always struggled with before a little bit easier than he found it before. With that comes confidence and the eagerness to try and learn more. So far, it’s all a win win situation. He’s still behind most of his classmates, still struggles with reading BUT he’s trying so hard and getting better all the time, Year 3 could really be the making of James.

Liam has recently turned 7. That means we have another 5 weeks of having two 7 year olds in the house that aren’t twins.  Liam is now in Year 2 and has the dreaded SAT tests this year to test the school, teachers and kids just where they are under government guidelines in the education tables. I think it’s too much on kids. James really struggled with these but Liam is soaring ahead at the moment. He’s on one of the top tables for Maths, Science and English but struggles with his writing just like his brothers. His reading is ahead and his spellings are pretty good. If only he would spend more time doing them then I’m sure he’d get really good marks at that too. He just sticks with the ones he knows for now and doesn’t work so hard with the learning aspect of spellings. Still, he’s only just turned 7 so I’m not going to turn all pushy parent on him just yet. He has always wanted to learn and thanks to his teacher last year he found his confidence and “happy space” a fair bit before James and has excelled since. This is why I’m hopeful James’s new teacher will take him further this year. Thankfully, Liam has the same teacher this year so I am really confident that he will continue to shine and be encouraged by what he is doing.

As the kids are getting older, I find myself looking back at the old baby photos and enjoying them as babies. I don’t get the yearning for any more.

I love my boys to bits and after the baby and toddler stages, it becomes such a joy to watch your children grow and develop mentally and emotionally. They are such real little people now with beliefs, with opinions, with ideas and dreams and it’s amazing to see them all so different from the others. They are very individual with different strengths and different interests. They really do have so much going on in their little lives that I am just proud to be part of it all.

The baby years are short, the toddler years are short, the school years – well they seem to be flying by too.

I can’t miss my “babies” when I am so in awe and adoration of the children they are right now.

They are strong, happy, compassionate, kind, sharing towards each other. Always help each other. Try to cheer one another up. Try to assist the others. And they are all the best of mates.

I really can’t ask for anything more than that.


Change of Career?


For a while now, I’ve been wanting to do more. More than just be a waitress. Whilst I love it to an extent, it’s not what I’d call a rewarding job. It has no real future and as you get older then, it becomes that little bit less enjoyable.

For a while now I’ve been thinking of becoming a Slimming World Consultant. To 1) Help others who struggle with their weight like I have/do. and 2) To give myself a boost and something to aim higher for.

Then, one night hubby and I were watching tv about Health Foods. The benefits of natural fats, the things that are superfoods. You know the type of thing, when it hit me.

Why stop at being a Slimming consultant? Why not go the whole hog and find a new career in the NHS?

I’ve looked up a few things and I really am seriously considering going to college next September (if we’re still in Suffolk) and studying to become a full on Dietician.

It makes so much sense.

I know about the weight loss side, the diabetic side and the pregnancy and small children nutrition through alot of personal experience and if I can combine the two and work in the public offering help and guidance to those needing/wanting to lose weight or for medical needs then I feel it’s something I can really excel at and it is something I truly believe in.

This year is a little too short notice to begin the courses I need and it would mean giving up my current work to study on a 3 day course which later in the course will be upped to 5 days for placement duties.

I say “If we’re still in Suffolk” for the simple fact, that hubby has been offered a new job. Still doing what he is doing but on a bigger scale and it would mean MAJOR relocation for a minimum of 4 years. Again, I don’t want to say too much for something that may or may not happen but it is very much “Abroad”. That’s all I’m going to say on that for now. The money sounds good, the oppertunity is a once in a lifetime oppertunity but it’s him who finally has to make that decision. He’s the one who has to take on the big job and obviously as a family, we’ll support him whichever way he chooses. We’ll know more about the actual deal in October and then have a big big big decision to make that will affect the future of ourselves and kids – probably forever.

So, watch this space.



Mum Knows Best…. Right?

Today I was going to write a post on why I adore my hubby so much, but that has been put aside for another time as the day has been enlightened thanks to the postman delivering some good news.

Firstly, the official report on Liams heart scan and ECG test last week shows that their studies show him to be perfectly healthy in that region despite his genetic condition. We were never worried but it’s always good to get a clean bill of health.

Secondly we got a letter back from the Special Needs Coordination team (SENCO) regarding getting them special help in school. I’ve had meeting upon meeting, talks with teachers repeatedly being told that James and Liam are both lagging behind other peers in their class.

SENCO do NOT feel that either of them need one to one tuition. (Punches the air)

They say that having seen me, the teachers and the boys in their learning environment, they are satisfied with the additional help they have had put in place at school and home and can see improvement with their work and learning levels over the past year. This shows they are capable of learning what is needed on the curriculum, they are just that little bit delayed in their learning.

Something we have noted and accepted from the beginning. This something I have always believed to be blown out of proportion by the school in the name of “targets”. I’ve never believed, deep down, that they need one on one tuition, just a little more support in class with certain things and group work being enough of a boost.

The boys probably will never be top of their class but not everyone is.

I don’t want to sound blase or like I am not interested in my childrens learning but there is SO much more to life than education and reaching targets that the government set. What will be will be.

What about their personalities, their strengths? Their personal beliefs, the things that make them individuals. We don’t need a world of cloned children all getting A* in everything.

A lot of adults even now struggle to read and write, at ages 5 and 6, they are grasping that now. Those adults with those struggles still have jobs, they have families. In the modern male orientated, now digital world, spelling and writing are no longer essentials for life. Maths is wasted to an extent. As long as my kids grow up learning how to handle money I will be pleased. There is a calculator on every mobile phone, tablet, laptop, PC. Tills in shop tot up the bill, tell you what change to give.  There is spell check. As for a future doing something physical, then practice and training goes a long way.

The point is, just because the school are keen to point out their issues, it doesn’t mean they will be like this for life. School is naturally hard for some people and they blossom into happy confident adults despite being written off by the schools.

I’m personally pleased with the result. I know they are behind but I know they do their best. That’s all any parent really wants of their children. I’m so proud of my little men and that they are achieving targets even if they are a year late. They ARE learning, they are getting experience and that all comes with confidence. Confidence comes from being told they are doing well. Something I’ve always always encouraged in all my kids is masses of praise and over the past few months they have changed so much.

They are so much more mature, settled, happy to follow tasks. They have the concentration, they appreciate the praise and in turn become more confident and stronger in their ways.

Maybe sometimes I may be in a little bubble and don’t see the same problems as the teachers. Maybe sometimes I do get very defensive over my children and don’t always listen. I just tell my boys to do their best.

Even as a mother, I still make mistakes, I get things wrong. I just want to know that I’ve done things to the best of my ability – this is as an adult so for my kids to be making the effort to do what they can, whatever the level they are at fills me with such pride!

The future now, again, rests with the school. The extra work they are doing IS giving out results. The school is doing it’s part and it’s working. It’s if this bond gets broken when the issues will arise.

As much as the school irritates me with all this, I still firmly stand by the fact that if I didn’t think the school were doing what was right for my boys, then I would simply take them out of that school and enrol them in another primary school. Overall,  I am satisfied with the school, I just don’t like the way parents are made to feel failures and have to jump hoops to get the school to look good. But I guess that’s the way it is.

So finally, to recap. Liam is healthy and neither James or Liam need special education help with a one to one teacher. Through knowing my children inside out, my inner gut instincts have been proven right yet again.

Hospital Trips, Genetics Specialists and Child Development Centre.

It really has been one of those weeks.

Last Saturday, my mother in law agreed to look after the children for the evening so hubby and I could have a night away. The plan was to go into Cambridge for the day and have an overnight stay in the nearby town of St Ives where we visited once before. However it didn’t quite go to plan. Whilst we did get away eventually, the morning for hubby was a morning up at A&E (Accident and Emergency – The UK’s Emergency Room or ER) with MIL suffering from suspected DVT. She has had problems with her legs before especially around the vein areas so when she was swelling up, going red and in pain, it was time to get it seen to. She was sent home with some injectable medication to assist the thinning of the blood and to stop the swelling. She was given the list of things to look out for and booked in for a scan on Monday to assess the state of the veins and to check there was nothing broken off that could be a risk to her lungs and make the whole thing a much bigger risk.

Assured all was well hubby and I went away and did our trip to Cambridge on the Sunday after spending the night in St Ives. This was eventful in a way I didn’t expect which is another post entirely.

Monday we were back at the hospital with MIL. I went along to keep her company and see how things went. It wasn’t DVT after all, something similar but not as serious and whilst she needs no further treatment and the scan proved that all was ok, she has to go back to her own hospital tomorrow for a follow up appointment. Between waiting for the nurse, then the scan, then the nurse again, then the doctor then someone who deals with hospital transfers, this little scan appointment had us sitting in the hospital for almost 4 hours. The main thing is that she’s ok.

Tuesday we had an appointment for Liam with Geneticists who were able to explain more about his chromosome abnormality. It was a fight and a half to get there since they had sent the appointment from another hospital and gave us the wrong address. They sent the appointment for the hospital and put down that address but we should have been at the Child Development Centre where we normally go. It was a good job we were early after a bus ride as Liam and myself weren’t particularly thrilled with the mile and a half trek across town. When we did get seen they were lovely.

They explained about the problem and how Chromosome 8, section 22 had not fully formed so he had part of a chromosome missing. This is the most common of Chromosome 8 abnormalities and the least severe. Phew.

This means that as such a chunk is missing  they do expect that he will have a form of educational needs most of his life. They think that with this disorder and the family history of speech problems and dyslexia that he was just unlucky with all these factors and the added chromosome misfunction.

My biggest worry was health concerns but this issue means he will have a normal life with no real medical issues. Hubby and I had our genetics tested with a blood sample we both had to give and it turns out that neither of us have any genetic issues. This purely happened somewhere along the path of creation and in utero but they don’t know why since neither myself nor hubby were a carrier. This means that should we have more children (which we wont) that child would be very unlikely to have the same problem though it can never be ruled out. However, when he is older, Liam has a 50/50 chance of passing on that troublesome chromosome to his own children should he have them. Genetics are so complicated they cannot explain half of it but they will make Liam aware of his condition when he is in his teens and will do a check up on him and keep his condition monitored for future reference and research so we are a family case study with one of Britains top Teaching and Research hospitals.

So I am now much happier now I have more of an understanding of it and know that he isn’t suffering from any health conditions to be worried about. The worst bit is having half the story. We are awaiting all the paper work then I can officially join the official Rare Chromosome Support Group and be of support to others with similar issues as well as get information and support myself.

Friday James and Liam had another appointment at the CDC. Dr C our case worker with their learning difficulties asked us how they were doing at school. If they were still getting the help she had recommended, if they happy at school, if we’d had the Genetic results explained fully and it was just a general, “how’s it going?” meeting. We said we were happy with what the school was doing, that they did appear to have things in place and the boys were happy with being at school and trying really hard. She took their heights and weights and showed us they were growing well, that they were catching up a little though they would likely be behind for most of their school lives but then asked how we would feel if we had no further contact with the CDC. In short, she explained that her job to find any medical underlying issues were done, with the family history it was likely they would have learning difficulties of some sort and now we’ve done our part, she’s done her part and got all the right connections in place for the school – it’s now the schools part to provide the right care and education to them both which I entirely agree with. We’ve gone through test upon test, the boys have missed HOURS of school over the months and the more school they miss, the more of their education and catch up time they miss. James struggles with confidence, that’s something that can only come in time with school support.  Liam is doing really well with his sounds and starting to read really well, I don’t think it will be long before he starts to overtake James with that purely because he has the confidence James doesn’t. He struggles with the fact he might get it wrong so he slows down and really works hard to get it right. They both struggle with writing which again will come in time and with support, patience and maturity. The school just wants to push push push. They aren’t allowed to learn at their own rate, they have to meet the teachers targets which makes life harder for them.

So the official word on all these tests and meetings to assess and organise help for them are finished. We are signed off and will no longer need specialist appointments. We just need the school to be doing what they should and I am actively giving each boy a little more time each day to help them. Though I am a busy mum with so much going on, my job is to help them where I can. Just an extra 10 minutes a day or an hour a week (on top of the usual reading, spellings, homework) should give them a little bit of a boost with their abilities and confidence.

So now, a new phase begins……

Emotional Week – Part 1.

I did what I hate most in the world, wrote one of those posts and did not give anything else away. I’m normally a fairly private person so I tend not to get upset in public or the great big jungle of social media or online jungles, however, this is something that is going to feature heavily in our lives for some time to come.

On Tuesday I got a phone call from the CDC (Child Development Centre) to discuss Liam and the next stage of his care. I took in a lot of information. Wrote notes so I could tell his teachers the current story, did a little reading up on what it all meant and took it all in ok.

So I thought.

Fast forward to Wednesday morning, I wait until most parents have gone and speak to Liams teacher at the door.

“I had a call back from the CDC yesterday and…..the blood tests have found a problem with a certain chromosome in Liams genetics”

Cue, the holding it together, the being brave, the “this is fine if I do it matter of factly” and all that bravado just falling apart.

Trying to explain I break down in tears, get ushered through to the staff room swiftly followed by Mrs F and Mrs W to be handed a big strong coffee with sugar and a chance to talk things through.

Liam has been found to have an issue with Chromosome number 8. To cut a long story short we are awaiting an appointment with genetic specialists who will explain fully what it all means and both hubby and I will need testing to see if it’s a hereditary issue or was a problem that arose in pregnancy.

What I have managed to find out, is that I think we have got to the bottom of Liam being so behind and why he is so socially anxious.

8p23 deletion syndrome as the medics call it is a rare condition in which part of chromosome 8 has simply not fully developed somewhere along the way. The symptoms are classically Liam:
Early months struggling to feed normally due to high palate or/and weak muscle tone – We assumed he ate little because of his hernia.
Finding it hard to chew with back teeth.
General speech difficulty finds it hard to make the right sounds regarding speech due to muscle tone.
Mild to Moderate learning difficulties.
Poor balance and motor skills.
Struggles to ride a bike.
Cannot concentrate or stay still for long.
Anxiety in large groups.
It’s all there.
There are alot of things he excels in which makes me think that he has the milder case of this “abnormality” but he will need a lot of extra help in school.
I’ve always been aware that he’s behind, that he needed a little help, I just assumed that like James he’ll move on and all will be fine.
Even his main teacher Mrs F confided in me that it’s her job to push these things and help the kids who are behind but she never expected anything to be out of the ordinary with his results especially since James’s results all came back clear.
Him needing help wasn’t the shock, it was just realising there is a real issue here and it might not just be something he will grow out of.
So next step is me and hubby to be tested and Liam needs a heart scan as 1 in 5 with this genetic disorder have heart issues. I’m not too worried about that as he’s had 2 ops and I’m sure they would have noticed something if there was a heart problem during or before those operations.
I’m also asking for Matthew to be tested as the official leaflet says in the early years it’s often overlooked as people try to find answers for the behaviour shown and there are a number of kids who were wrongly diagnosed with ADHD before being discovered to have this genetic failing.
I don’t know how many kids have this, but according to the Rare Genetic “Support Group” I have joined, there are only 6 adults with this condition in the UK. Mostly because testing for this is relatively new and 3 of those were diagnosed when they were fathers due to the child being diagnosed with the same issue. The other 3 are at university living normal lives.
Life expectancy is normal and I am currently awaiting to be added to the group to make friends with other parents in the same position.
It has been estimated to affect 1 person in every 64,000. Always knew Liam was a special baby but wow – the odds on that!!!!
None of the information is that new. We knew where his difficulties were, I just honestly didn’t expect it to be an official medical issue and actually talking about it is so much harder than I expected it would be, even with people who understand him.
I’m much happier with the idea now it’s sunk in and deep down I know this diagnosis will only help him further and speed up the help he needs. I’m just a bit emotional over my little man and don’t want him to go through life with big struggles ahead of him,
The sooner we get this help which will hopefully be a one to one tutor now the better for his future. x