This time 3years ago .....

9th April 2012 

Arjan Surjit Singh Dosanjh

Aged 13mths and 12days 

Just shy of his 1st birthday he was finally diagnosed with cerebral palsy. At this point we still didn't understand what it was. You probably find this quite surprising but we were relieved to have a name to Arjan's condition. Now we knew what we were dealing with.

He was able to sit against something like a sofa. Before this he would have just collapsed forward or to the side. It's amazing to see how much he has improved over the years. 

I really do miss his little curly locks - so cute! So many changes in his life. But one thing that hasn't changed is his love for that particular toy (yes! He still plays with that steering wheel toy) 

Thought I'd share this positive #throwback with you xxx

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!