Wednesday, 14 November 2018

Wandering down a long, lonely road

Reuben is now 11 years old.

In that 11 years we have had test after test done and here we are 11 years on and we still have no answers.

Frustrating???? Yes...very.

But the funny thing is, I can deal with the not knowing but the being completely left in limbo and having no one investigating this is the most difficult thing.

Imagine, a long, long, winding road and on that road there are no people, no cars, no houses...just  nothing. Well, that's where we are as a family. Walking down this road alone.

From birth, Reuben has been surrounded by so many doctors and this would increase weekly. The number of hospital letters coming through the door with either appointment dates and times, feedback from an appointment or another referral would be unbelievably high. My diary and family calendar was always bursting at the seams with various appointments for Reuben and our lives would be taken over by visiting hospitals and clinics. It came to the point that I thought I would never work due to the high amount of appointments that we would have to attend with Reuben. Mr H had to stop coming to some of the routine appointments as he just couldn't keep having time off. He would just come to new appointments or to genetic appointments.

Along with the mass of appointments would come various tests. Reuben suddenly turned into a human pin cushion for all their blood tests he had to have. We got used to the long waiting times and always went prepared with snacks and toys ( we even wised up and started to request the first appointment of the day or last as this would reduce the waiting time for Reuben. Who, by the way hates waiting and just can't manage it very well)

As the time has gone on, the appointments have dwindled off and we have been discharged from the many doctors and clinics. The more routine appointments have now become 6 monthly or yearly.

 In a way I can deal with the routine appointments being far apart but being discharged from all the other doctors is struggle as I feel like we have just been left. I understand that a doctor cannot keep Reuben on if there is nothing they can do for him or the condition they were seeing him for turns out that Reuben does not have it. But, what next? where do we go from here?

Other than Reuben's routine clinics that he attends, we are under no doctor to investigate his condition. we are basically left to our own devices But, Reuben's condition has not gone away, he still has whatever it is he has but we are just meant to deal with this.

I feel like we have fell through a gap in the NHS net, that no one cares anymore. They have done there initial tests, he has been put on data bases, they have done what they want and are no longer interested.

But, where does that leave Reuben?

I know he is in a great school setting and getting the support and help he needs to be able to work towards living as independently as he can. But, what about the future? What if his condition will get worse, What does the future hold for Reuben in terms of his health? These are all the questions that are just hanging there in this massive abyss that we are living in.

I feel disappointed, both for us and for him. Disappointed that doctors have given up on him and the "needle in the hay stack" that they wanted so badly to find will never be found. We will be forever filling out forms with "undiagnosed condition" written in the box that asks for medical illnesses.

Mr H and I are no where near informed or qualified to start searching ourselves. We wouldn't even know what doctor to go to if we wanted to pay private. We just wouldn't know where to start.

So I guess we will just carry on down the long winding road, alone and always wondering what is going on with our blonde haired boy.

Monday, 3 September 2018

The day before...

So, we have reached the end of the loooooonnng summer holidays!
I survived...just!!!

But with the end of the holidays comes the start of the worry belly's, scratchy throat and achy bum's (that's what Reuben calls all his "things" when he is worried and anxious)

I find that as the new school term approach's, Reuben anxiety heightens and along come his various "things" that he suffers with when he is anxious. He will usually start getting up that little bit earlier in the mornings and as soon as he is up, he cannot and will not keep still.

The pacing starts and the playing stops. In fact in the run up to the start of school, Reuben plays less and less. He becomes less sociable and very own agenda. Reuben will spend most of the day just walking around the house whilst fiddling with his lanyard. If we are out and about, he will become switched off to what is happening around him and we usually have to hold his hand at these points as he will continually bump into things and people.

Next comes the repetitive questions or conversations. Reuben loves predictability, its not really the answer that he wants but the comfort of hearing the same thing over and over. It brings him assurance (well, until he asks the question again 2 minutes later) We quite often have the same conversations with him numerous times during the day, sometimes one after the other barely 2 seconds apart and yes, I do want to punch myself in the head after having said conversation 40 times by 10am.

But, we have to go through this process with him so that he can work through the anxiety and keep it under control until he is back at school and is happy that its all going to be ok. It is exhausting for him and us and I quite often find myself muttering under my breath, words (that I shall not repeat on here) and I do go to bed with a headache but this is what we have to do to keep Reuben's anxiety under control.

 We then have the physical aspects of Reuben's anxiety. We are still not sure exactly what he does experience or feel but he is constantly telling us that he has an "achy bum". When he gets this, the only comfort he has is to have his trousers and pants sitting just below his bottom. As you can imagine, this is not ideal when we have guests over or if we are going out. So, we have put in place a rule for him when he has an achy bum and that is, he can have his bottom out but only in his bedroom. When he is downstairs or we are out, the bottom needs to be put away...and so far, this is working!

Another physical aspect Reuben gets is a scratchy throat and a tickle belly. The scratchy throat is a fairly new one and at first I generally thought he had a sore throat, so was giving him Calpol. I have since discovered that this is just another of Reuben's "things" that he gets whilst feeling anxious. There is no cure or remedy for this, we just have to get him to have a drink and talk about (again!!!) what ever it is that's making him anxious. The tickle belly is an old one and this gets worse, the more anxious Reuben is.

The tickle belly is an old one and this gets worse, the more anxious Reuben is. There have been times when Reuben's anxiety has been that bad that after having the tickle belly for a while, he is actually sick. Again, there's really nothing that can be done to make this better or to go away.

Today we have talked to death the time he is being picked up tomorrow, the escort he's having on the bus, the time he is coming home and the teacher that he's got. We have talked about it so many times and I felt like an automated voice recording when answering him about it all. But tomorrow hasn't come yet!

Let me talk you through what our morning will be like tomorrow....

  • Reuben will wake very early, probably around 5-6am
  • He won't eat any breakfast but will have a few sips of tea
  • He will be physically shaking
  • He will tell me 100 times before 7am that he has a tickle belly, achy bum and scratchy throat
  • He will pace
  • He will be sick
  • He will pace so more
  • He will have toilet accident
  • He will pace again
I absolutely hate seeing him like this and it breaks my heart but there's nothing I can do other than to keep talking to him, give lots of hugs and reassure him as much as I can because its his anxiety and nothing I will do will take it away.

So, I'm going to go now and enjoy a cup of tea, read my book and prepare myself for all of the above tomorrow morning.

Big hugs to anyone that's going to have a similar morning tomorrow or when ever their little ones first day of school is. You're not alone xxx

Tuesday, 14 August 2018

Half way through...and its all going down hill!

So, we are now half way through the long summer holidays and it all started off so well!

In the run up to the summer holidays, I dreamt of lazy mornings, cuppa's in the garden, picnics, sounds of laughter from outside, paddling pools, summer evenings drinking a glass of bubbly while the kids played in the get the picture.

To be honest, it started off that way and I was a bit concerned as to why it was going so well. The house was calm, Reuben was perfectly happy pottering around and playing in his room or outside, I was getting sh*t done and we were enjoying trips out doing fun things. all happy and smiles.


Week 4 was upon us and slowly but surely things started to collapse.

Reuben is getting a  very short tolerance of things, he is getting up earlier and earlier each morning, leaving the house is an military mission in its self and we are all getting rather tired. Plus, the glorious sunshine has left us and in return we have rain, grey clouds and a chilly wind.

Lets start with the early mornings...
Reuben started off the first 3 weeks of the holidays sleeping in until at least 8.45 and then he would enjoy his cuppa before popping off upstairs to play for an hour. This left me to be able to get jobs around the house done and do a bit of crochet ready for my upcoming craft fair (more about my crochet in another blog to come)
This week however, Reuben is getting up at around 7.20am (yes, I know this seems like a lie in to most people) but when you have been used to getting up out of your pit at nearly 9am, the early start of 7.20am is a killer. Made worse by the weather being chilly and grey so I can't even enjoy my cup of tea out on the patio in the sun!
Reuben seems to have grown bored of all that is in his room and will now stay right by my side until bedtime just talking and talking.

Getting out the house...
Well, this is a challenge in itself. The first 3 weeks, Reuben would be dressed ready for whatever activity we were due to take part in. Clothes would be laid out for him and he would be dressed with a smile on his face.
Now, getting out the house means me rugby tackling him to the ground to clothe him and as for shoes and socks...well that's another matter.
Reuben has now decided he hates everything we are doing (even if he has been before and loved it) he hates leaving the house, hates going in the car and hates seeing other people (his words, not mine)
Most journey's out with Reuben are him sitting in the car, half dressed. Usually in just his pants!
The reason for this is, I ask nicely for him to get ready, for him to refuse, so I ask another couple of times to which he refuses another couple of times. The end result is me picking him up, half dressed and plonking him in the car with his clothes under my arm for when we get there.

The whole experience is utterly exhausting but giving up and staying in the house is a no-no as this is probably more excruciating than actually going out.

By the time we have got to our destination, Reuben is all calm, ready to get dressed and ready for whatever activity we are doing. It also re-sets his internal button so that when we get back home, I may have approximately 7 minutes of him entertaining himself  before I have my shadow back and the never ending chatter starts.

I know what you are all thinking...The blog post I wrote about my 10 top tips for the summer holidays and one of them being...

keep to routine, getting up at the same time and dressed etc. But, I just couldn't give up these beautiful very rare lie in's. I am however, going to be back on in tomorrow morning and getting some routine back into our house (you watch, he will have the biggest lie in tomorrow morning and I will be the only one up at 7.30am)

Hope you are all having a great summer holiday so far and remember....only 3 weeks to go!!!!!

This is Reuben smiling and having fun, living his best life whilst horse riding. We won't mention the half dressed Reuben in the car beforehand that kicked off at home saying he didn't like horse riding!!

Saturday, 28 July 2018

When you find the perfect place for your child...

As a Mom to 3 children, I seem to find myself at many parks, playgrounds, farms and soft play centres. I'm used to rocking up with a packed lunch and a bag full of spare clothes, ready to spend the day at said place.

That was until Reuben arrived and we quickly came to the conclusion that he's not your A typical child. By this I mean he hates other children, hates crowded places and hates loads of noise. So, trips to the park, playground or farms are actually really difficult and can be painfull..not only to him but to us too.

We have tried to take him to parks in the summer holidays, told him that its really fun...hell, I've even forced him to go on the play things for heaven's sake. But the truth of the matter is, he's just not into them.

A few years ago, I came across an adventure park near to where we live.
We went with a charity called SPDC (there's a blog post all about them on here too) and I have to say, its one of the best places we have taken Reuben.

I was dubious at first and thought the trip would end up like all the other ones, where we are there for 10 minutes then packing up and in the car before we have even got settled. But this place was different.

The adventure park is called Sycamore Adventure Centre in Dudley, West Midlands. We went there as part of a SEN session so it was a lot calmer and quitter...not too busy.

On arrival, Reuben just ran off and played until his hearts content. I simply couldn't believe it.

The park is set up to encourage play, the good old fashioned play that we used to do when we were kids. There's no televisions, no state of the art technology, just good old fashioned toys and stuff to play with. There are play workers there who supervise but no interfere, they play alongside the children and if that means building things with sticks they have found or rolling around in the sandpit, then that's what they do. Its brilliant!

To make it even more fantastic, there's a fence all the way around the park which I think makes Reuben feel secure ( and stops me from stressing that he is going to get lost) There's slides, swings, football, den's,climbing frames, things to climb in and under, a water wall, a log cabin that they call the hobbit house and they even have a real jeep and motorbikes that the children can play on (obviously not working. they are set in in the ground and all the engine parts taken out)

Reuben loves nothing more than to run around, dip his head in the water wall, climb into the tree house or dig around in the sand pit. He seems so at ease at Sycamore that its really lovely to see him so relaxed. There's plenty of space for him to not feel like the place is crowded and going to the SEN sessions is a lot better for him as he knows a lot of the children that attend.

Along with all the play equipment there is also a café and Reuben loves their chips. In fact everytime we go, he always asks if its time for chips yet (this can be as early as 10am!) they also do a great cup of tea, which is great for me as I can sit back and chill while knowing that Reuben is safe and happy.

Visiting Sycamore is always such an enjoyable time and Reuben always leaves with a gigantic smile on his face (and soaking wet, covered in sand) This is why I think places such as these should be recognised and shouted from the roof tops, so that other parents that are struggling to find somewhere for their child to go and be happy can find out abut them. I'm just so glad that we have found it because I know that we will be using it in years to come!

Here's the website if you fancy visiting..

And here is the play timetable with the SEN sessions...

Told you he always has a smile on his face at Sycamore
  Reuben never comes away dry or clean but its all part of the fun, right???

Reuben's first time on a Go-Kart!

Friday, 20 July 2018

surviving the dreaded summer hols...

If you are anything like me, you will be dreading 4pm as that's the start of the school summer holidays!

Don't get me wrong, I love my 3 children dearly. Well, my eldest is 21, so not so much a child but you get my gist. I just cannot bear the summer holidays, its far too long and the children just get bored which then makes my life stressful. Add into the mix of having a child with additional needs and that's a whole different story!

Reuben hates crowds, he hates other children and he hates having no routine, so the long 6 weeks of no school is very hard for both him and me. Parks are Reubens's idea of hell and the free activities at the library just fills him with dread, so what do I do to try and make the holidays as stress free as I can?

I have put together 10 things I do to help survive the summer holidays, so that by the end of them you still have your sanity....hopefully!!!

1. Organise

I can't emphasise this enough when you have a child with additional needs.
I plan activities in advance and that way the holidays don't seem so daunting. I check out all the activities that are on especially for children with additional needs. This way Reuben will probably be with children that he knows from school or other clubs he attends and they will be run in a way that suits Reuben i.e quiet, not too many children etc.
Book these clubs/activities early so that they get a place.

2. Try to stay in routine as much as possible.

Reuben loves routine, when things change and he doesn't know what's happening, it makes his anxiety heighten along with his stress levels (and mine)
I try to get up at the same time (yes, its annoying not laying in bed or staying in your pajamas all morning)  keep breakfast routine the same and lay out his clothes for the day as I would for school days. Brushing teeth and getting hair done also helps as this sets Reuben up for the day.
Once morning routine is done, we are then ready to face the day.

3.  Child friendly calendar or visual timetable

One thing that unsettles Reuben is the not knowing what he is doing. At school, he has a clear timetable of the activities/lessons that he is doing throughout the day. He can go and look at this and instantly see what he is doing that day.
I have brought Reuben a calendar that has big clear boxes to write in. I have written down all the activities that are happening throughout the summer. This way he can look at the calendar and see in an instant what we are doing that week.
For children that can't read, use a visual timetable. This can be made up of symbols, photos etc to show your child what they are doing either that day or that week. all depending on what is best for your child.
I will even add on to this calendar when the car is in for service or when Dad is on a trip as he will be around when these things happen and it wouldn't be such a panic for him.

4.  Early park visits

When I say Reuuben doesn't like the park, its more of a fact that he doesn't really like other children. They make him anxious as he can't predict what they are going to do.
So, obviously when its the summer holidays, the parks in the middle of the afternoon are going to be rammed with hundreds of  over excited children (Reuben's complete and ultimate worse nightmare)
To give Reuben the opportunity to play at the park and have that park experience, I get up early and get to the park early. That way the park is more or less empty and Reuben can feel comfortable playing at ease without the stress of other children being loud and boisterous.

5.  Online shopping

This is a God send and who ever invented this must be given a medal.
Reuben hates shopping of any kind so attempting the weekly food shop with him in tow is a no-no.
In the summer holidays I order my food shop on line and get it delivered in the morning. This way it comes just in time for when we are nearly out of milk and it can be put away so we can then get on with our day. Reuben usually likes to "help" put it away or get it off the delivery driver...this usually takes me another 4 hours but hey ho, its something to keep him occupied.
If you haven't got a computer or access to the internet or like me you forget to order it in time, then I do the food shop in the evening when Reuben is in bed. His Dad will stay at home with him and I will trot off to get the food shop done in peace. (this also gives you a bit of time by yourself without having the kids asking you a million and one questions and gets you out the house for a hour or a winner all round)

6.  Picnics

I don't know about your kids but mine always seem to be hungry when they are at home. They seem to be constantly asking for snacks or helping themselves to food.
Everyone loves a picnic, so we have about 7689 of these during the summer hols and the rain doesn't put us off.
Weather permitting, we have a picnic outside when we can (this can also turn to your advantage as there's less mess in the house ha!) We usually invite the various stuffed toys that are piled up in Reuben's room and on his bed.
Of course British weather isn't always great and it wouldn't be much fun sitting in the rain eating soggy sandwiches. So, we have an indoor picnic instead.
Again, the stuffed animals all come along and my dining room resembles a Build a Bear shop but its all fun and Reuben enjoys it.
There's nothing better than sitting on a blanket with all the coloured plastic plates or paper plates filled with sausage rolls, sandwiches, chocolate fingers and cake!

7.  Movie time

Whether its raining or sunny, sometimes its just nice to lay on the sofa and watch a classic.
Reuben sometimes gets a little tired (and fed up) of being outside so its great when we can put a film on and snuggle on the sofa for a couple of hours.
I let him have "Stinky Blanket" his comforter so he's nice and relaxed and we can while away a couple of hours...I can sometimes get a cheeky half hour nap in too!  Works for everyone.

8.  Ask for help

A really important one as the summer hols can be completely exhausting no matter how hard you have planned it.
We all need some time on our own so sending the kids off to the grandparents for a couple of hours is great. Not just for them but for us too.
Reuben loves to go to his grandparents to play in the garden, visit other family members or just go for tea. I also love it as it gives me some time just to enjoy a cuppa in peace, to catch up on jobs or to spend with my daughters.
Asking for help isn't failing. At the end of the day, if you are all worn out or loosing your shizzle then you can't be the best parent to them. By having that time to relax and get your head together, you will be a much nicer, calmer parent to be around, making smiley, happy children.

9. Tat

By Tat I mean Poundland/Poundworld and all those other types of shops toys or crafting equipment.
Now before I get sued, I'm not saying that their stuff is all rubbish or tat but its cheap, it doesn't matter if it gets broken or thrown away as it doesn't cost much and it keep the kids amused for a few hours.
I usually go into these shops before the hols and stock up on arty things or stuff for the garden, then on rainy days or those afternoons when you feel like you're tearing your hair out, pull the tat out and it can keep them quiet for a while.
Top tip...items from these shops also make brilliant rewards if you have a behaviour chart on the go!

And last but not least..

10. Bedtime routine

As I mentioned before, Reuben is most happy when he is in a routine so bedtime is no different. I always keep these the same as to when he is at school.
Don't get me wrong, he stays up a little later but keeping the whole routine before bed is always the same. Baths or showers followed by drink and snack (which will probably be his 898095 snack of the day) then tele time and bed.
I find by letting Reuben have his tele time, it calms him down in time for getting some sleep. It also gives me an extra half hour to either run around and tidy the house or collapse into the sofa for a bit of quiet time.

I really hope these have been helpful but remember the main aim is to have fun. It doesn't matter that your house doesn't look like a show home for next 6 weeks or that the ironing pile resembles Mount Everest. At the end of the day when they go back to school in September, all they and you will remember is the wonderful memories..

Have fun and if all else fails, drink wine 😀

Thursday, 19 July 2018 Transport

School transport....those mere words strike anger and fear into me!

Reuben attends a special school and has done now for the past 2 years. Unfortunately the school is on the other side of the borough, so takes a good half an hour to get to (if the road Gods are on our side)
So, its completely impractical for us to take him and pick him up every day which means he has to go on school transport.

I. Hate. It!!!!!

The whole provision is just not fit for purpose and I can't for the life of me understand why the council/ government are allowing it to be used.

RANT ALERT (be warned).....

The transport do not communicate with parents, they do not communicate with the school and they do not communicate with the IPTU  (Integrated Passenger Transport Unit i.e the people behind the desk that seem like they are organising it all but in fact they are doing sod all!)
No-one has a clue as to what's going on if there is ever a problem which makes it so unbelievably unsafe, it's a joke!

I am basically handing over the care and responsibility of my very vulnerable child to a driver that I know nothing about, an escort that I have no clue about and whether or not they have any experience with children with additional needs. Then, there's the whole bus and whether it even safe to be on the road.

I know you're probably thinking why I send my child on transport...
But, without transport how is my child going to attend the school he feels comfortable in, happy in and where the staff are trained to look after his needs???

At the start of the process of applying for transport, we had to fill a form out. On this form we put the obvious information i.e name, address etc but we also put down what my child's needs were, diagnosis was, what his behaviour is like and all the other information that they would need to be able to care for him and look after him on the journey to and from school.

There are not any forms, information sheets, meet and greets etc for us parents to be introduced to the driver, the escort and for our child to see the bus that he will be travelling on. We are not shown any kind of paperwork to prove that these people are trained, experienced and even CRB (I think the name has changed now for their check) checked.

In the past 2 years, Reuben has had numerous bus changes, driver changes and escort changes. This has completely messed him up and brought his anxiety to a peak, even to the point that he was being sick every morning due to the anxiety of not knowing what bus was going to turn up, who was going to be on the bus. Yet, when we phone the transport office at our local council (the numbers they provide us with) they either don't pick up or have absolutely no idea what's going on.

If an incident happens on the bus, which it has done on a few occasions on Reuben's bus, I have found out about them from Reuben. So, I go back to the transport people at the council and again am met with complete cluelessness as the bus company has not informed them of anything.

How is this allowed to happen???

It seems to me that the bus companies are allowed to do as they please, whether that be changing buses at the drop of a hat, change escorts and drivers with no notice or not report incidents that have happened to school, the parents or the transport office.....Safeguarding is the word that keeps popping into my head!

I really do think that the whole transport system needs to be changed or at the very least updated and someone needs to be accountable. As at this time, no body communicates with one another and that can be very dangerous. Will this ever happen...probably not, well, not until a serious accident has occurred.

So for now, we have to continue to put our trust into the escort, bus driver, transport company and transport office to take our son to and from school in a safe and happy environment.

Thursday, 5 July 2018

Happy 70th Birthday NHS

To celebrate the NHS turning 70, I thought I would write a letter of thanks to them!

Dear NHS

Up until 11 years ago, I don't think I have ever appreciated what you actually do.

I took for granted the births of my daughters, the A&E trips with them for childhood accidents and even the operation my daughter had to correct her lazy eye. I took for granted the support of the midwives when I go at home, the doctors appointments for them when they had a medical issue and even the nurse that visits their school.

That was until, 11 years ago when I went for my first scan to be told that there may be something wrong with my baby and that he may have a genetic disorder.

The NHS provided extra scans and midwife appointments to make sure my baby was fit and well during pregnancy, a team of proffessionals during my birth and doctors doing tests after he was born.

11 years on and we still don't have a name for his condition but the support of the NHS continues. We have visited a lot of hospitals, had many, many conversations with doctors and been to many clinics.

It hasn't all been plain sailing and rosey. We have been failed by NHS staff a few times, been let down and have had to fight for a lot of things but part of me thinks that the reason for these failings is that the NHS is just so strained. Clinics are overloaded, staff are worked too hard and there's just not enough money for the NHS.

Putting those negatives aside, the positives are that we as a family have been supported through our journey with our sons Undiagnosed condition.

When we think of the NHS, we think of hospitals, doctors and nurses but that's just a handful of what the NHS is. If it wasn't for the speech and Language therapists, occupational health therapists, educational pyscologists etc, I'm not sure where we would be. These are the people that I think don't get recognised.

So, a big thank you to our NHS, because without you our son would not be able to live the life he leads.