P-pod seating system

So it has finally arrived and we could be any happier. 

The first time I saw a p-pod it was about 2years ago whilst at Arjans group Physio session at the Ronnie mackeith centre in the Royal Derby Hospital . As Arjan was a really unsettled child back then and never got to get him to sit in it. However, I was able to see The other children sit in it. 

What is a p-pod? 

So in Lehmans terms it's just a beanbag base with a detachable moulded/padded seat on top of it. It may be as simple as that but this seat has major benefits for the posture maintenance of a child especially with cerebral palsy. 

You can also opt to have a cushioned head rest which you can remove whenever you like. You can even buy a table, frame and foot rest for it but they will come at an additional cost.

The one thing we were struggling with was for our son to have a comfortable chillout seed justice fitted when he's playing or just wants to relax. Like all of us we like to sit on the sofa and watch a bit of T.V or just want to relax, but we always want to sit on something comfortable and it really was upsetting that there wasn't anything out there that was like a so far chair for a child with special needs. We were in desperate need to get him a comfortable seat for him to have his milk in before he goes to bed rather than have him on a conventional rocker which had no lateral supports or any padding. Knowing that our son had posture issues we needed something that was going to be comfortable as well as maintain his posture. And this is where the P – pod  comes in. 

The great thing about the p-pod is that it's lightweight, portable, and best of all machine washable!!

You are able to mould the base so your child can be in a more horizontal position – as demonstrated by Arjan 

Call in a more upright position for say feeding , playing or watching TV

We are so pleased with it and would recommend it to anyone who has a child with cp or who needs lateral support.

Comfortable and practical- what else do you need ? 

You can check out all the products on SOS (specialist orthotic services) website 

www.specialisedorthoticservices.co.uk

Magic moments:- when Arjan discovered how to roll (18months old)

We have been trying for months on end in fact, 18 months on end, to try and get Arjan to roll. Whether it was the physiotherapist, Tony, or myself we found it extremely difficult. He would cry, whinge and moan throughout which made it extremely difficult for us to do the exercises. After 18 months of crying every single day, even three times a day, we started to feel like we were fighting a losing battle. But then something amazing happened. 

One afternoon we went to visit Arjan's new born cousin. Arjan was on carpeted lounge floor where he had some of his toys around him just to keep them occupied whilst I was able to see my new baby niece. A couple of minutes later my three-year-old niece came running up to me saying " aunty, Arjan was in the fireplace!" Shocked by her comment I have turned around and saw him in the fireplace. I was a bit baffled to how we got there because even though he was only 18 months old he was just as tall as my 3year-old niece. And there was no way she would've been able to carry him. So I pick them up and put them back in the centre of the Lounge near his toys again. But as I was walking away from him I felt like I needed to turn around and that's when it happened. Arjan started to roll towards the fireplace again.  I couldn't believe what I was seeing. I've run across the living room into the conservatory and was screaming with joy at tony telling him what Arjan had done. 

Although I've can never bring back that moment where he first rolled I'm managed to film him the following day rolling. 

So here it is guys the day after Aj and discovered how to roll. I hope you find joy in watching this video and see that miracles can happen. 

Enjoy ! 

http://youtu.be/N7jMCfhnBm0

Magic Moment :- Able to suck,swallow and breathe

From the moment Arjan survived in intensive care, we were told that he will have a lot of problems. Of course i know understand that all medical staff have to give you the worst case sinario however, saying that they alway did have faith and hope in how are Arjan will be in the future. NO-ONE can predict the future so we decided to take it a day at a time. Taking note of every single goal Arjan reached

sometimes as parents we do get deflated and wonder why and what is the point.......until something like this happens


I thought i would share some moments will you all starting off with this gem. Arjan had an NG tube for meds and feeding as the S.A.L.T team believed that after nearly 2weeks of being on a ventilator, he had lost the ability to perform the motion of suck,swallow and breathe (something we all do when we drink).........and then he did it. Please do ignore my silly talking. Don't know what I was going on about. Think I was abit too excited about what had just happened. 

enjoy peeps!

http://youtu.be/gY0N5EvE6oE

Best car seat for children with special needs

One of the hardest things your have to deal with is making sure that any seating equipment our children are in is safe and secure. Especially around their hips, torso and head. Good support and positioning is crucial . I mean the last thing we want to worry about whilst we are driving is to see our child flop thru the rear view mirror. But having a seat that is permently facing forward can make our backs very sore 

Well no need to fear- this beauty is here! (Well in the shops anyway) 

Meet the best thing we have brought for Arjan in the last 2years- the MAXI COSI AXISS

After Arjan had grown out of his first car seat before we had planned we were researching for a while for a seat that would meet his and out needs. And this seat won - hands down!!

The best thing about it is it swivels towards the door so you can place your child in securely without having to twist yourself! 

Modelled by my handsome choppy! 

The head rest is easily adjusted by pulling it up or down - very easy

There is a slide button underneath the seat so you can adjust if you want the seat to turn either left or right. 

AND AND!! Wait for it!! ........ It has 3 reclining settings - yes you can say it ......WOW!!! 

With the max weight being 18kg you can have this seat for a very long time. Arjan sits in it so well and it really does support his body well. 

If you would like one Mothercare are price matching it at £165 (rrp £225) 

I know it's abit pricey but I promise you- you won't be disappointed 

Cheap and cheerful sensory tools - dish washing brushes

Now as we all know sensory toys and equipment can become very very expensive , so what we decided was to update some of our Arjan's equipment by going to IKEA

We ended up buying a lot of different things but I think what I'll do is talk you through each one in different posts

Let's start off with these beauties

Yesterday I do not deceive you they are dishwashing brushes. Now you might be wondering why I bought these. Well the fact that they're hard object means that if Archer and wanted to buy Tony it won't be no danger to him. They are bright colourful and great for tactile uses. But the best thing about is the suckers at the bottom of each brush. Which means that I can actually stick them onto any surface that ARJAN may be using. For instance I can stick it on the surface of his chair or his standing frame. 

Doing this helps us to get Arjun to use his site more as well as choose objects so he's not only choosing the object because he wants it but because he wants to pick that colour as well. What I do sometimes is distracting from one side and stick one of the brushes down on the other side so when he turned around and he looks around till notice the brush and therefore wanting to go for it. This is a great game to help your child not only use their vision but to actually progress with their hand eye coordination making live reach more accurate. 

I'm so glad we actually purchased this because its now helped to identify which colours Argent don't find harder to see and at only 90p each you not exactly breaking the bank

A great tool for making choices, building hand eye coordination, sensory play, and helping any child who is tactile sensitive

A massive thumbs up from us and from ARJAN :)

Fathers days

Hi everyone! 

I hope all you dads out there had a fantastic Father's Day . I just wanted to share this with you 

My husband (Tony) keeps himself to himself and never reveals his true feelings. Yesterday he put up this status on Facebook marking what Father's Day means to him. Be warned ! You will cry so have your tissues ready

In February 2001 my life changed forever, my first child was born, the most beautiful and perfect baby boy. 

Words could not describe my joy and excitement.

I was already dreaming of all his future achievements….

After a few ours of enjoying my baby boy things changed and didn't go as I hoped and dreamt. In-fact they’re just about as far removed as they could be from those early dream filled days. 

Our son had contracted a deadly blood infection and was given hours to live. The phone calls to and from home to from joy to sorrow.  

What happened that day literally turned our world upside down and changed our lives forever.

We prayed and begged god for forgiveness  if we had done anything wrong. I went to Guru Arjan Dev temple and prayed and prayed to give our son strength to pull through. Our parents went to various temples to do Seva. We brought priests into the hospital to pray. Our family and friends were there by our side, shoulder to shoulder. He started to show signs of getting better and later on in coming weeks was out off danger. 

We named our son Arjan Surjit Singh Dosanjh. It was only right and we believe god saved his life. Guru Arjan Dev Gurdwara was where I prayed so much for his well being. I also believe my dad was looking down on us and gave him strength. Arjan was a fighter and spent 8 weeks in intensive care.

Once home we knew he would have Cerebral Palsy and Delayed Development. Our journey into the unknown world of special needs began......

Looking back, the 28th February 2011 was a defining moment in my life. Things will never be the same again for me or my family.

As it's Fathers Day it seems like a good time to share some of the things that make being a special needs Dad, so difficult and so different, but more importantly so special and so rewarding.

It’s tough on Dads too!

There’s no point glossing over the obvious. Having a profoundly disabled child is hard; it’s hard on the entire family. Just how hard is difficult convey to anyone who hasn’t been in that position.

It’s widely accepted that special needs parents are acutely affected by stress especially around the time of diagnosis. This stress is often compounded by a sense of grief that results from this loss of one’s initial hopes, dreams and expectations.

The journey can be particularly hard on Dads. We males tend to bottle things up, we’re less likely to share our worries and stress with friends or loved ones. Us dads continue to keep our heads down. Pretending instead, that everything is fine so that we can support our family. Added to this is the overwhelming assumption from society that you’re a man, so you’ll be grand. All of these can make it a very isolating journey for a special needs dad.

 

Of course I’d change things if I could

I don’t get people who say they wouldn’t change anything. That doesn’t mean I don’t love my son, I do, more than words can say, but just that I would love to make things better for him.

Its easy to get angry and frustrated

I like to think of myself as a fairly relaxed and chilled out kind of person. However, the last few years have tested this part of my personality to the limit at times.

Whether that’s just from the sheer physical and emotional exhaustion of it all or from the massive sense of injustice that hangs over me.

Injustice in the sense of why us – why our child? Injustice at how our society treats disabled people, regardless of how advanced and accepting most of society sees them self. 

I get unbelievably angry with people  who, continue to complain about minor things or are stressed and haven't got time for this and that!

Nothing prepares you for having a child with special needs, but that’s not an entirely bad thing. I’ve learnt so much in the 3 years since my son was born, I feel genuinely privileged to be his dad.

Our lives our unrecognisable now to what they were, and indeed they are unrecognisable from that of our friends and family who are our age. 

I sometimes feel like I’ve entered a parallel universe, one that lets me view things in an entirely different light. If my son has taught me one thing it’s knowing what is important in life. Different certainly isn’t always a bad thing.

You just have to go with the flow

Like most dads, I like to think of myself as the organiser, the leader of the pack!!

On days out, holidays whatever it happens to be I used to have them sorted long in advance so I knew what to expect, what we needed to do and when we had to be somewhere.

That was before, now I’m just glad if we get out of the house. As our son gets older he’s getting better, but for several years his severe sensory processing disorders meant that no matter how well we planned something, it could be over before it began.

Having a child with special needs helps get things in perspective. Now we just take things as they come, if the day goes to plan then brilliant, if not then there’s always another time!

As Arjan continues to grow and develop, so does his sense of awareness and love towards us. It’s a beautiful thing to see him roll around and smile and laugh at Peppa Pig. He hates Muddy Puddles. Sometimes it's hard to believe what he went through. 

Getting to witness this inbuilt human kindness is something very special and something very few will have the privilege of seeing.

 

It’s not true, you don’t get used to no sleep

I have no idea who came up with this nonsensical idea that parents get used to living with no sleep. I can only guess it was someone who had a child that maybe didn’t sleep that well for the first twelve weeks of their life. Tough as that may be and yes you probably do get by on very little sleep over a short period like that, try doing it over many years, with no end in sight.

Add to that, the fact your child isn’t a 10lb new born that you can carry around in one hand, they are a 2 stone 3 year old with low tone meaning they have no way of supporting them self or of taking their own weight when they are up all night screaming in agony with something associated with their condition.

It’s a love like no other

My son has never said a single solitary word to me apart from a babble of Dada... I'm not sure if he knows what it means but it makes me feel warm. That may be the only word he ever says....We may never go to the pub for a pint together, we’ll probably not manage to get to many sporting events together, certainly not in the ways I’d imagined when he was born. But for all this I love him more than life itself, I think I’m probably over protective of him, but I’ll make no apologies for that. He cant speak for himself, so that’s down to me and his mum to help him I’m a dad on a mission and I’ll do everything I can to make sure his life is as good as it can be.

 

I’m one of the lucky ones

Regardless of everything I still think I’m one of the lucky ones. My little boy brings so much joy and love into our lives, and his smile brightens up the darkest moments. I know that in his own wee way he’s happy and for me that’s all that matters.

So to you all you Dad’s out there – Happy Father’s Day!

ABR - what is it?

Hi everyone 

I'm so sorry I haven't posted anything recently I've just been extremely busy with Arjan

The last two weeks have been crazy. But brace yourself I shall explain all!!! 

Like most parents we are always looking for new treatments that will actually help Arjan with his development and especially with the CP. We came across ABR (Advanced Biomechanical Rehabilitation ) nearly a year ago but we never thought to be something that would actually benefit Arjan as we were under the impression that Arjan could do a lot more than the children shown on the website. 

ABR (in layman's terms) is a treatment where you are actually trying to make them muscle structure of the body stronger rather than having a physiotherapy view on it. It contains a series of "exercises " that are used to build the muscle strength for each individual. So say for instance Arjan has quadriplegic cerebral palsy- so not only are his limbs week but he's also is extremely weak. I will first focus point would-be his torso and getting that strong. Now for the last year also I've noticed that as Arjan started rolling the focus on building his torso and making that stronger was decreasing. And more and more focus was put onto him doing four point kneeling or sitting. Even though all these exercises were good however we still weren't building up his torso which became more apparent when we were told by his hips were starting to come out. As soon as we were told that he might need surgery on his hip that's when we decided we need to look at some other sort of treatment for him to avoid surgery. This is where ABR came in. 

ABR approach is a nonsurgical ,non-physiotherapy view.  It works on reducing the spasticity in the muscles and the increased muscle tone and hopefully eliminating any muscular pain that your child may suffer. You are given a number of different equipment for each different exercise. I don't think that these exercises just plucked from the air what they do is they do a 2 to 3 hour assessment on your child looking at them from head to toe and seeing what their problem areas are and take it from there.

Now as mentioned before we thought Arjan was doing a lot more and probably was a lot stronger than the children on the website however we were very very shocked to realise how weak are arjan's muscles really are! 

We were shown a series of pictures of Arjan that they took during the Assesment of him sitting ,lying, how he's moving his head,how he actually was rolling and it was shocking to see how stiff his body really gets when he's trying to do something-it really did open our eyes

What does it involve? 

Keep it simple it's like doing compressions on your Childs body to wake up and strengthen the muscles. Now when we first saw what we have to do we just go to ourselves this is it going to work however looking at all the case studies on the website you can't help but think surely this must have some positive impact on all these children. Some of the case studies are of children that are extremely stiff but after a year or so of doing ABR they are now sitting unaided and sitting beautifully straight

After our training we were finally able to try them out on Arjan :/ 

They ask you to commit to at least three hours a day of doing these exercises but don't be alarmed you don't have to do all three hours at the same time. You can break the exercises up during the day however if you are given one exercise to do for half an hour you've got to do that one excited for half an hour you can't break and exercise up into segments

I think the assessors thought that we were very hands-on sort of parents so instead of giving us the 3 hours worth of exercises they gave us extra however now walking away from the assessment you just don't appreciate how difficult it is to do these exercises and how time-consuming they really are

We are only in week 1 so we're almost like weaning Arjan onto the exercises however I will keep you all posted in regards to his progress and how I'm finding it 

If you'd like to find out more about ABR I will just at the link below

www.abracotland.com 

The Upsee by Firefly

Hi everyone

So as promised I'll be doing weekly posts on different sort of equipment ,ideas and things regarding cerebral palsy ,special needs and disability is in general

Today's post is about something that I discovered on the Internet by accident. It's called an Upsee. As it can imagine the name crying here a bit of a clue what it is. It's a piece of equipment that you step onto your child and then attach your child to yourself. This may sound straightforward but you're touching your child to the lower part of your body..... And this is when it becomes revolutionary this equipment is designed for your child to experience the motion and movement of walking ......so as you walk your child will walk with you!!!

Anyone that knows me they would know that I want Arjan to walk one day - whether it's with the frame or without I just wanted to experience how it feels to walk. So you can imagine how excited we are about this product. 

I haven't actually seen this product in the physical form but have seen a lot of demo videos including the video made by the inventor of the Upsee Debby Alnatan. Her video was only two minutes long but it just reduced me down to tears. The reason why she invented the Upsee is because when she had her second child Walter she was told by the physiotherapist that her child and understand what his legs were , which obviously as any parent would feel quite distraught and you feel quite helpless because you don't know how to help your child. She didn't let this keep her down for too long and started to look at different ways of helping Walter understand what his legs were - that was the beginning of the Upsee. 

Just goes to show if you're determined you can actually do anything. And as a determine parent she's not only invented a product that will actually help her own child but thousands of children around the world experience something that we take for granted on the day-to-day basis

Please do take a moment and have a look at this product . As really research done to this and if you've got a child who's got good head control is this might be the perfect product for you and then especially to bond even more as you'll be so close to each other

https://www.youtube.com/watch?v=rQH6CXnkWc0

http://youtu.be/wH1q599fUVg

http://www.fireflyfriends.com/

About Arjan

Hi everyone and welcome to my blog

I decided to set up this blog because I always get asked questions about my son (Arjan) , his special needs, what equipment he needs and how life is in general for us as a family. These questions were coming from people that didn't know anyone with special needs or from parents who did. Even a few medical professional couraged me to set this up as I was always informing them of new things that I discovered 

So let me tell you a little about Arjan.

Well yesterday (28th feb) was his 3rd birthday!! Yay!!! 

It's abit of a strange day for both myself and my husband as we can never forget how we nearly lost him :( 

Firstly (before I get into what happened) I'll just let you know what his Special Needs are. He has CP (cerebral palsy) with quadriplegia / cortical visual impairment and severe global delayed development

What happened 

I can't go into a lot of detail but Arjan became seriously ill whilst in hospital and was rushed to NICU (neonatal intensive care unit) 18hrs after he was born. After a few hours of him being there we were told that he was too poor to survive. We were told to prepare ourselves to say goodbye. 

Honestly-I can even put into words how we felt and what was going through our minds. We were told he would pass away in the next 2hrs. Those were the most painful 2hrs ever. But our little fighter wasn't prepared to give up . He stayed strong!! After 7weeks he was discharged -however this is were everything really started. 

Whilst we were in intensive care we were told that Arjan suffered a significant amount of brain damage and that he will have some issues. We were told just to keep an eye out for anything that we viewed as a concern

Cutting this very long story short . I watched Arjan like hawk and picked on some issues that enabled us to get an early diagnostics by the time he was 1

So there you have it!!! 

I'm going to be sharing ideas, stories, trials and tribulations with you all in hope that something might help someone. 

As I do have my hands full I'll be posting once a week (minimum)

If you know anyone who will be interested in this blog then please do share it 

Until next time folks- I'll see you soon xxx