Fancy a game of Limbo?

Hello all! Here it is, my very overdue blog! Life with JP has had it’s ups and downs in the last few months, certainly a lot more ups though:

  • He has started pre-school 5 mornings a week, he loves it – mainly because they have a Peppa Pig guitar that he can play with!
  • He has developed so many more words and is trying to speak at every occasion.
  • He is still fun loving and is developing such a fantastic sense of humour.

As much as I am enjoying his ups, we still have our downs. As JP has now started pre-school, we have also had to begin looking at schools – Special needs schools. I think it was this fact that triggered me off thinking about this blog – it was another reminder that the path JP will take will be different from the one I had envisaged and hoped for him.

Autism is a life-long condition and it sometimes feels that just as you overcome one hurdle it gets replaced by at least one more. You constantly feel as if you are in a state of limbo, not knowing what each day will bring; progress, regression or additional issues. Mix in the fact that JP is a 4-year-old boy and it becomes extremely difficult to decipher which is his autism and which is him just being a 4 year old.

Then there are the professionals that we encounter, teachers, healthcare professionals and therapists who – rightly so – cannot give us a definitive answer on when the pulling/ pinching and biting will end, when he will develop full speech, how independent will he be? Again adding to the feeling of being in limbo – just waiting…

I then got onto thinking about my work – I am a children’s performer/ entertainer – one of the most popular games I have found has to be a Limbo competition. There is something that appeals to children (and grown-ups) of all ages – please bear with me, this does have a point. You set the height they go around, in a circle, and it gets lower and lower as they go around and around.

Here comes the point – each time the children come around to the Limbo they look at the current height (different from the last time) and work out a way to get underneath it. My thinking is that being in Limbo about JP’s situation isn’t very fun for anyone. However, playing Limbo is much more fun: each time JP and I go around and we face a different issue we need to look at it and work out a way to get underneath it.

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All roads lead to Pizza Express

Hello all, here is another insight in the world of JP and his Autism. It all began with a quote I read from Temple Grandin and it went a little like this:

 

“The word used after an autistic diagnosis used to be Gifted not Disabled” (Apologies about my terrible misquote but I cant find where I saw it last!)

 

This quote got me thinking that the language we use to describe people and conditions has a massive and direct effect on the perception of those children and conditions. Now I know that this is down to the fact that Autism is a spectrum disorder and there are 2 very extreme ends to it but I cant help but think that every single child has a gift and a talent that we just need to learn to access and unlock.

 

For example I truly believe that JP is going to grow up and be a fantastic musician, he already holds full sized guitars correctly and strums them (instantly more talented than I am), has impeccable timing and can pick out an instrument from a full song and then tell you what he is hearing. However, putting that aside I would like to tell you about another skill JP has developed and honed over the last few weeks.

 

JP can be highly motivated by certain things, generally music and food, to be a little more precise with the food side he simply can’t go past a Pizza Express restaurant without signing food frantically and having a meltdown when he realises we can’t eat every single meal in there. Where we live there is a Pizza Express about a quarter of a mile away and one day a few weeks back JP and I were out walking as he often likes to do and I had decided to let him lead the way and explore where he wanted to, obviously keeping an eye on the safety of said explorations. To cut a long journey short, via a few gardens, the local football stadium and the corner shop JP eventually led me to Pizza Express a quarter of a mile away. This wasn’t a fluke either, he had been doing his special food sign for Pizza Express the whole time we had been walking (it is a lot more delicate and upmarket than other food signs) and the few times he asked me to carry him I told him if I was carrying him I would take him home and for the first time ever he refused the lift and carried on walking, just proving that he can do a lot more than he lets on when motivated. His navigational skills were confirmed today when we visited our local park, which is in the opposite direction to Pizza Express, on the way home we came to the fork in the road and he pointed to the left and again signed for Pizza Express.

 

I’m not sure how many other 3 year olds could navigate their way around a town centre, even if his focal point is always food related!!! It is because of this I am proposing a new word to be considered by the Oxford English Dictionary: how about our children are no longer disabled but rather DIFABLED – differently abled to neurotypical children. They all have something to offer if we just have patience and understanding to unlock it.

It’s Date Night, go…go…go!!!

Any new parent will tell you that when your little bundle of joy finally arrives, making time for each other as a couple takes a back seat to recuperating, tidying the house ready for round 2 tomorrow and catching up on some much missed sleep!!! With divorce rates as high as 80% of marriages with an autistic child, much higher than with a neuro-typical child, I think my previous statement applies ten-fold to parents with an SEN child.

This is why, like everything else in our lives, “Date Nights” have to be planned with military precision. Going out isn’t a convenient option for us due to JP’s demands at bedtime and his restless sleeping when he does finally give in, so a romantic meal in for two it is.

The plan goes as follows: you have to agree on a night, make sure you have done the shopping, delegated out the bedtime routine and the cleaning away of JP’s millions of toys, chilled the wine, switched off the phones and TV and of course prepare the table and the meal.

Having planned all this though it still doesn’t mean that Date Night will go to plan. Oh…no, because this Wednesday night is the Wednesday night JP has decided he doesn’t need to go to bed just yet after all. In fact he has decided he must watch his favourite F1 race – Belgium 2013 if you were interested (I kid you not it is the only one he will watch and his Mum and I know the commentary off by heart now!) he has also decided he needs all his toys back out scattered around the house and he has just realized his dinner a few hours back didn’t quite fill him up and our plates of Sea Bass, Lemon and Garlic potatoes, Asparagus and Salad is exactly what he needs to eat. So a quiet night with nice food, grown –up conversation and wine has suddenly turned into sharing your meal with JP, tripping over his toys and instead of nice plinky-plonky music we have the race commentary blaring out in the background and we all recognize the moment when Kimi Raikonnen has to retire his car due to brake failure (having not retired in the last 39 races prior, this was a big deal!).

Parents of an SEN child have an added stress put on their relationship and it can be really tough at times, my wife and I will both admit that we have thought on some days it is easier to give up than to carry on together. Having each other though at times is the best thing, as no one else can really understand what you are going through and what kind of day you have had.

I think what this is teaching me is that, like when dealing with JP, you have to be that little bit kinder and loving towards each other and more understanding when your date night ends up with you both having fallen asleep on the sofa straight after dinner with the F1 in the background!!

So, only his Father is going to be there??!!??

This week I am taking a very tongue-in-cheek look at being a father who is also a 50% carer for JP, the other 50% being my wife. As a Father in a massively different role to the traditional one that my Father had and his Father had and his Father had…..you get the picture, I have had some very interesting experiences when it comes to other parents, healthcare professionals and therapists.

We have a very unique set-up, like most families with children who have additional needs we make it up as we go along and get through somehow. Both my wife and I work, from home and on our own business – and we believe this is a positive thing for the family and our sanity! We came up with a plan that works for us: we both work and we both have equal responsibility for JP. As a dad I feel so privileged to have been around so much, my own Father and a lot of my Daddy friends often tell me the one regret they have is they have to be away working so much.

However, being so involved with JP has also lead to some quite bizarre interactions, such as when my wife had to have a 30 minute conversation with a therapist about how it was okay that she wouldn’t be attending that weeks session and that I would be taking JP. For whatever reason the Therapist couldn’t accept that I was perfectly adequate to take JP and participate in his therapy. However, after a very long-winded conversation I was deemed fit for purpose, woohoo, most anxious wait of my life!!

It doesn’t stop there though, so I have been allowed through the door and we are all introducing ourselves. This I can do, I can nail this – I’m an actor after all, I have been to literally hundred’s of auditions where we all sit in a circle and introduce ourselves (usually having to use an adjective to describe myself and a massive action to go along with it – believe me Daring Daniel is ready for this!!) So we hear from Mum 1 about her and her child, Mum 2, Mum 3… here it comes, my big moment…and… back to the therapist! I never even got to introduce myself, maybe I shouldn’t have come after all?!!?

Anyway, swiftly moving on his group/ therapy is now in full swing. I am surrounded by Mummies, Grandmothers and hired Nannies (It seems hired Nannies are higher in the pecking order than I am!!!), the children are playing and the conversation is flowing when one of the other mum’s comes out with the following:

“….it was nice to have Charlotte (my wife) here last week, having a dad here just makes it all a bit weird, doesn’t it?…”

There is a conversation killer, right? What do you say to that? My presence makes things weird?? I’m not sure what I can do about that…

I feel that I have to say that, none of these experiences have had a negative affect on me and I find them quite amusing and very interesting as to the attitudes we still hold. We are all very privileged to live in a world that strives for equality, where – rightly so – same sex couples can marry and have children, single people can adopt and men can even avoid tan lines by purchasing a side-less thong (An actual thing, please Google it) but it seems that a father taking his son to therapy is still a step too far – better go buy one of those things then instead!!

Jollypig talks with hands…

“This is Jollypig and he talks with his hands…” is the exact sentence that Jollypigs older cousin and his best friends from next door use to introduce him to anyone new. It struck me as an amazing example of children not judging or questioning things but simply accepting a difference.

To clarify Jollypig (JP) uses a signing system called Makaton, which is used for people who have issues communicating verbally. His spoken words add up to about 15, most used intermittently – but his Makaton vocabulary exceeds 150 and is constantly growing.

Both my wife and I have learnt Makaton purely from JP, we noticed one day that he was copying his TV hero “Mr Tumble” – to be honest not just JP’s, I’m a massive fan of his as well!! From that moment on we all learnt together and started using it all the time. We soon noticed a change in JP – he was calmer, began to listen more and for the first time he was participating in our world. The transformation was amazing and it didn’t stop there; we are now at the stage that he will tell us stories about a “Horse and a Cat in a tree dancing”, or the world around him. He has also developed a real sense of humour with it, if you ask JP if Mummy and Daddy should have a new baby he responds with a swift signing of “No Baby!” – I for one agree with him wholeheartedly!!

I know that people are sceptical about Makaton and I have had other parents accusing me of holding him back and not allowing him to speak. To those people I would say that JP on a daily basis has a conversation with me and engages in the world around him. Autistic children often complain about loneliness and that is the one thing I never want JP to feel so whatever way I can keep him engaging I am willing to do. Especially when it means JP signs to me every single day I…LOVE…YOU!!

D-day AKA Diagnosis Day

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Hello and welcome back to the world of Jollypig, if you are just joining us welcome to you too, please read and enjoy – thoughts welcome.

Jollypig got diagnosed for ASD in December 2013 and that day is one that still stirs some very strong emotions within me. This is why I have chosen this as the subject of my second blog.

He was almost 3 when we had an official diagnosis, and looking back if I was honest there was already an inkling that something was different with our piglet. He always missed his key milestones and we all made excuses and gave reasons why he wasn’t progressing as expected and keeping the faith he was being a typical boy – just being lazy (something I’m not sure we ever grow out of!!).

Jollypig has always been his own little man and both myself and my wife love him for that – we have never been the parents that are constantly checking his progress against charts or other children. We have always taken a very laid back approach to his development, still though as time went on concerns began to arise and eventually we both agreed to have him assessed.

The day of the assessment began like every day with Jollypig, up at the crack of dawn, instantly seeking out a high energy, noisy and usually dangerous adventure. Once dressed and fed we headed off to the centre and were shown through to the room that the tests would take place in. The room was spacious, full of toys and in the corner a one-way piece of glass that Jollypig could be observed through – he saw it as a perfect mirror to practice his guitar solos!! Little sideline – Jollypig loves guitars. Anything shaped remotely like a guitar soon becomes one in his hands – we will revisit this at a future date, his solos are very rock and roll! Always ending with him giving himself a round of applause – I’m not sure where he gets his modesty from?!?!?!?!?!

Having gone through a series of tests with numerous experts, Jollypig reacted how we expected and was unable to perform the tasks in front of him because he would always find something much more interesting to do instead. Afterwards we were given the news that he was on the Autistic Spectrum, hearing that news hit me like a truck and my whole world had been turned upside down with every single question and worry swirling around my head. What does this mean for Jollypig’s future? What about school? What progress will he eventually make, if any? The worst one that really hurt was what would he do when we are no longer around? Some of you may be realizing that I didn’t handle the diagnosis well, you are right – I really didn’t. I cried everyday, 4 or 5 times a day for about 2 weeks and was so upset and sad about it all I refused to look at anything other than the negatives.

After weeks of moping around in my cloud of negativity there was only one thing that could snap me out of it: Jollypig. After the diagnosis and over those weeks nothing changed for him, he wanted to play the same games, read the same books, loved playing guitar and having tickles and singing songs. That’s when it clicked for me, Jollypig’s autism was part of him and shaped him into the fun loving, silly adventurer who I loved more than anything in this world and always would. If Jollypig was neurotypical (sorry about the scientific term but using “normal” suggests an abnormality – which just isn’t true) he quite simply would not be the same little boy who has stolen my heart or amazes me every single day, he wouldn’t be the little boy who has inspired me to be and do so much more.

This week’s final thought is I have learned that no matter what Jollypig is able or unable to do when he grows up, I will always love him and I’m pretty sure he will continue to make me laugh in a way no one else can and I am so excited about the adventures we have to come!

Thanks for reading!

Jollypig and Me: an introduction

So, I have decided to blog about my experiences with my Jollypig, an affectionate nickname given to him because we have never met a more smiley, happy and giggly child and secondly because he has inherited my turned up nose – therefore he resembled a very happy piglet, hence Jollypig.

There are 2 main reasons that have led me to write this, with one sub-reason. My 2 main one’s are to spread awareness of Autism and it’s effects to more people, and secondly, a little bit selfishly, I think it will help me deal with the really dark days. My sub-reason being to spread a little fun and laughter into the lives of other families just like mine by showing them; they are not alone!!

As this is my very first blog I thought we would start out with an introduction to myself and Jollypig. I am a father of a little boy that has been diagnosed with ASD (Autistic Spectrum Disorder). Where on the spectrum he is we do not know yet – he is too young to be specific. I trained as an actor and now own a children’s party planning and event management company – which basically means I am surrounded by other people’s kids much more than I am my own. At any one point in time I will be looking after at least 30 children, high on adrenaline and general excitement about being at a party and if I am completely honest, 30 of those sugar addled minors are way easier to look after than my son when I get home.

Jollypig has recently turned 3 and is pre-verbal, he finds it very difficult to socialize, even though he has a massive desire to play with other children – he simply doesn’t understand how to. Which leads to me having to chase him round and round any soft-play/ park or playground we are visiting just to make sure he behaves appropriately and when he doesn’t I am there to intervene. At this point I would just like to say that not once have I been envious of all those other parents sitting at their tables, sipping their cappuccino’s and having one of those …what do you call them… oh yes…adult conversations. Not once, not at all…as I tumble head first down a slide to make sure he doesn’t assault anyone with a teapot.

As you may have gathered my life has become hectic since Jollypig arrived and is literally non-stop from the moment he wakes up to the moment he collapses with exhaustion – leaving you just enough time to recuperate, before we go at it all again the next day. I wouldn’t change him for the world, not one little thing. He is my world and I would give everything I had just so he was happy and safe. This blog will detail some of our exploits in the hope of spreading awareness and cheer.

Signing off for now.

Dad and Jollypig. x