National Sibling Day

Those of us that are the parents of a child with additional needs, or who support a child with additional needs, so often put so much of our time, energy and focus (and rightly so) into helping that child or young person to thrive, to engage with the world, to develop as fully as possible, to be a part of all that we do…

It can become all consuming, demanding much of our conscious and unconscious energy as we do all that we can to make a difference.

But for many of us, our child with additional needs or disability is not our only child.

We may have another child, or several others, all of whom need love, nurturing, care and support too.

In our case, we have Phoebe, who at 18 is two years older than James and has grown up for most of her life in a home that includes a child with significant additional needs, and all that that brings.

Phoebe at various times is a junior carer for her brother, helping out with a range of support tasks that help to keep the wheels on our particular family bus.

She is great at spotting when James is starting to get distressed about something and can either let us know or, usually, will just deal with things herself.

She’s cleaned up stuff that she’d rather not see again (but probably will), she’s got up and come to help in the middle of the night if James is having a meltdown, she’s watched endless episodes of Postman Pat or Percy the Park Keeper with her brother, helping him to choose the next video to watch.

She also great at calling us out when we’re letting James off lightly for something he’s doing that is less to do with his Autism and more to do with being a 15-year-old who is pushing boundaries!

But she’s also missed out on a lot of things that many young people take for granted.

The times we’ve had to skip going to something, or come home early, because James is struggling…

Going out as a family is that much harder when an unpredictable younger brother may do something that either means we have to abandon our plans or keep within a small set of activities that we know James can cope with.

We can’t just decide to go out to the movies, or for a meal, on a whim as most families can!

We tend to invite people around to our house rather than visit, generally because it’s easier for James when he has the familiarity of his own den, his own things, and we’ve got everything we need to support him; whereas Phoebe might have liked to go somewhere different, anywhere different, for a change!

Even family holidays can prove unpredictable, with a simple trip to the beach or to some gardens being fraught with uncertainty!

As parents, we were able to understand a little better at diagnosis what having a child with additional needs would mean (although in reality we still had everything to learn!)

For Phoebe, who was five at the time, it just meant her brother was a bit different to the brothers and sisters of her friends.

As she grew up she noticed the differences more, asked more questions, learned more about her brother, was affected more by living with him.

One of the ‘A’ levels that Phoebe is currently studying for is Psychology, and this is teaching her even more about Autism in general and her brother in particular;  for example about neurodiversity, the idea that neurological differences like autism are the result of normal, natural variation in the human genome, which is increasingly gaining prominence.

In all of this, Phoebe rarely complains (although she has her moments), she gets on with life and the challenges that being the sibling of a brother with additional needs brings.

There are times when she mentions that all of our time and energy seems to be focused on James, and that she doesn’t get enough of our time and focus, and that’s something for us to do better at… to learn from and to change through.

But I’m so incredibly proud of Phoebe, for the well-rounded, caring, thoughtful, intelligent young woman she has grown up to be.

There are many thousands like her across the country, who quietly cope while their brother or sister is having a difficult day.

Whether we parent more than one child, or whether as children’s and youth workers we care for them in other ways, let’s celebrate what a wonderful contribution they make to the world, how hard it can be for them sometimes, and make sure that we love, nurture and care for them, thanking them for all that they do.

Purple Day

Epilepsy Awareness Day, or ‘Purple Day’, is on the 26th March, and this will be the first ‘Purple Day’ since James, our 15-year-old son, added Epilepsy to his growing list of conditions that already included Autism and Learning Disability…

It’s been quite a year, quite a journey, as we’ve rapidly learned about a condition that we knew very little about before.

But let’s start at the beginning, mid-March about a year ago, when something “unusual” happened with James at school…

I remember the phone call well, it was early afternoon and I was at a work meeting about 100 miles away from home.

In the middle of the meeting my mobile ‘phone rang, the name of James’ school showing as the caller; I apologised to my colleagues and rushed out of the room to take the call.

“Something unusual happened with James just now”, the teacher calling me said.

“It’s like he totally zoned out for about 30 seconds, his eyes were open but there was no response. Like the lights were on but no-one was at home, then all of a sudden he was back with us again.  He seems fine now.”

They kept an eye on James for the rest of the afternoon, he seemed fine and travelled home on the school mini-bus quite happily.

There were no further episodes, so all was put down to James just “having a moment” and quickly forgotten…

We now know that what James actually experienced was an ‘absence seizure’, sometimes called a, ‘petit mal’, seizure, a form of epileptic event, but more of that later…

Time passed, summer came and went (all too rapidly!), and autumn arrived.

One mid-October morning, we had helped James get up and get dressed; he was chilling out in his den while I went to the kitchen to get him some toast and a drink.

When I returned just 2-3 minutes later I found James having a full tonic-clonic epileptic seizure, sometimes called a ‘grand mal’ seizure.

The sort of seizure someone who knows little to nothing about Epilepsy (which was us) thinks of as an ‘epileptic fit’.

He was lying down, rigid, jerking, losing consciousness and dribbling.

It was probably the most frightening experience of my life, I am so thankful that James remembers none of it.

The paramedics were there within minutes, while a very kind 999 operator helped me to keep calm and gave me things to check and do to make sure James was breathing properly, that he was safe from banging his head, and that I didn’t pass out too.

James came round again within a few minutes, and although he then slept for much of the rest of the day, he recovered fully.

We were then on the journey to find out what had happened, and why…

It turns out that Autistic children are much more likely to develop Epilepsy than their non-Autistic peers, with studies showing up to 30% of Autistic children also develop Epilepsy.

Two key times when this can occur is in the pre-school age (James missed that one), and in adolescence (James got caught then).

In talking all of this through with James’ Neurology Consultant, it became clear that James’ absence seizure in school, as we only then understood that it was, was linked and perhaps his first epileptic episode.

We also discovered that when James occasionally ‘jerks’ or ‘twitches’, it’s not him just shuddering or shivering, it’s a ‘myoclonic jerk’, another form of epileptic event.

We’re still novices in this area, but we’re learning fast!

So this ‘Purple Day’, have a think about your child or adolescent…

Are they Autistic?

If so, they are up to 30 times more likely to develop Epilepsy too.

Have they ever zoned out, gone blank for a few seconds?

Do they sometimes twitch or jerk without reason?

Understanding these signs and seeking better awareness and knowledge of Epilepsy will help you and your child.

Seek professional medical opinion if you are at all concerned, but don’t ignore any signs – the unexpected sight of your child having a full tonic-clonic ‘grand-mal’ seizure for the first time isn’t one you’ll forget in a hurry…

Let this ‘Purple Day’ be an epilepsy awareness day for you.

Disability and Brexit

As Ben Elton used to say… “Ooh, a little bit of politics there!” so buckle up for my current take on where we’re at with disability and Brexit…

On the 23rd June 2016, the population of the United Kingdom voted in the EU referendum to answer the following question:

“Should the United Kingdom remain a member of the European Union or leave the European Union?”

The result was that 52% voted ‘leave’, while 48% voted ‘remain’.

Brexit became the word of the year, and the Government started negotiations for the UK to leave the EU.

Those negotiations continue, and legislation is working its way through Parliament, with the EU Repeal Bill among one of the latest examples of this.

The news is still filled with Theresa May and David Davis offering the UK Government view, while Michel Barnier, representing the European Union offering an often starkly different perspective.

Even the announcement of some agreement on the transition phase, on 19th March 2018, contained a number of key issues still to be resolved.

But what does all of this mean for those living in the UK with additional needs or disabilities, or their families?

How will this sector of the UK population continue to be affected by Brexit?

This blog post explores some of the key areas, not to open up Brexit divisions further (if that is possible!), but to provide some insight into the implications of Brexit, for better or worse, for children and young people with additional needs or disabilities, and their families.

It will explore these implications under three broad headings, ‘Disability rights’, ‘Travel’, and ‘Funding’.

Many of these are linked to progressive social policies that flow across several or all of these areas, but we will focus on where it is most appropriate.

This blog post doesn’t set out to be exhaustive, but to provide a starting point for continued debate and individual research, as well as raising awareness about this important but perhaps often overlooked area.

Disability rights:

The United Kingdom has been a full member of the European Union for decades, and as a result the UK’s legal framework has become ever more closely linked to that of the EU.

Legislature that has been introduced by the EU has been adopted by default within the UK.

There is a raft of EU legislature that has relevance to disability rights, with the following list being just a starting point:

Equality Law

EU Parking Badge (allowing disabled people to use disabled parking places across the EU)

Braille labelling on medicines

Access to benefits while living in other EU countries (see under ‘travel’)

EU Air Passengers Regulations 2006

Access to the European Court of Justice (note: this is different to the European Court of Human Rights – see later in this article)

The EU has made it illegal to discriminate against someone because of their disability, or because of their relationship to a disabled person (important for parents of a disabled child for example).

Many of the hard-won rights that have been provided through membership of the EU are rights that exist and are harmonised across the whole of the EU.

While the ongoing Brexit negotiations may well retain some of these rights, there is no guarantee, and the UK will not benefit from future developments and innovations in these rights.

In December 2015 the EU proposed the European Accessibility Act, which aims to improve the functioning of the internal market for accessible products and services for people with disabilities, by removing barriers created by divergent legislation.

As the UK is leaving the EU it will not be bound by this Act.

UK citizens currently have recourse to the European Court of Human Rights (ECHR), which over the years have strengthened disability rights.

While the ECHR sits outside of the main EU courts, and so Brexit doesn’t detach the UK from its protection straight away, the current Government has been a very vocal critic of the ECHR, with the most recent Conservative Party election manifesto stating that they would ‘consider our human rights legal framework when the process of leaving the EU concludes’ (page 39).

This could be read that both repeal of the Human Rights Act 1998 and withdrawal from the ECHR remain very much on the medium-term agenda, and are less complicated after Brexit.

Such a withdrawal could weaken the legal protection offered to disabled people and make bringing human rights claims against the UK Government much harder.

Travelling:

Current Brexit negotiations include what kind of border controls and freedom of movement will be in place once the UK leaves the EU.

‘Hard’ border controls could mean delays and access issues travelling to/across Europe, including the Republic of Ireland.

People with disabilities or reduced mobility enjoy specific rights and protection under European passenger rights legislation, including the EU Air Passengers Regulations 2006, at the airport and during air travel throughout the EU.

It is unclear at this stage whether these protections will continue after the UK leaves the EU.

The European Health Insurance Card (EHIC) provides the right to access state-provided healthcare during a temporary stay in another European Economic Area (EEA) country, or Switzerland.

The EHIC covers treatment that is medically necessary until the persons planned return home.

It currently works both for UK citizens travelling or resident in Europe and other EU citizens travelling or resident in the UK.

At present, the negotiating position seems to be that this will continue for those in-country when the UK leaves, but there is no agreement for new post-Brexit visitors.

Currently UK citizens enjoy access to benefits, including disability benefits such as PIP, while living in other EU countries.

It is unclear at this stage whether these rights will continue after the UK leaves.

When considering EU nationals currently residing in the UK, many are employed in the NHS, care homes, and other places that people with disability or additional needs, or their families, disproportionately access.

Due to uncertainty about a post-Brexit future, and the lower exchange rate, many are returning to their country of origin which could result in staffing challenges ahead.

Funding:

There are a wide range of EU funds, many of which are to some extent focused on social inclusion, poverty reduction, and other areas where people with disability or additional needs have benefitted disproportionately over the years, including some of the funds shown below.

European Social Fund

European Regional Development Fund

Erasmus+

European research funding for Universities

The EU has, for example, provided funding to improve accessibility to social amenities and tourism for disabled people, disability friendly children’s play areas, and much more.

Once again it is unclear whether the UK will be entitled to benefit from these funds having left the EU, or whether they will be replaced with a UK based equivalent.

A continued post-Brexit downturn in the GDP of the UK will make this harder to budget for, and indeed proposals in last years’ Conservative Party election manifesto, and their actions since, suggest that further welfare cuts are more likely.

National Star has just been awarded Erasmus+ funding for a programme on assisted technology for people with disabilities at work, with partners from Croatia, Greece and Finland.

However, after the UK leaves the EU, organisations based in the UK will be able to partner but not lead Erasmus+ programmes.

This means that UK organisations will not be able to take the initiative or shape the way projects run, and will instead be subservient to the interests and needs of other European partners.

(Quoted from The Guardian, 14-08-17)

In conclusion, while the decision for the UK to leave the EU has been made, and there is some agreement about the transition phase starting in March 2019, there are significant implications to consider for everyone with additional needs or disability, and their families, whether children, young people or adults.

It is important that awareness of these implications is increased while there is still time to bring pressure to bear on those making further decisions on all of our behalf for the future…

Disabled Access Day?

Many organisations and venues are hosting ‘Disabled Access Day’ on Saturday 10th March, following on from the organised events in 2015-2017.

If you’ve not come across Disabled Access Day before, here’s what the organisers say about it: “In 2015 Disabled Access Day began as a day to celebrate good access and created opportunities for people to try something new.

The day was about highlighting the fantastic access that already exists in places, such as touch tours, relaxed performances, sensory experiences, level access and of course a warm welcome!”

There isn’t an ‘official’ Disabled Access Day in 2018, with it returning in 2019, and that perhaps highlights the issue here… why does this have to be a ‘once a year’, or even less, event?

Surely, we should be making every day ‘disabled access day’?

Making this an annual event risks giving organisations, venues and other providers an excuse for treating this as a once-a-year experience for them too…

“We’ve taken part in disabled access day, put some effort in on that one day, we can tick the box and get back to normal”.

While many are great at this throughout the year, there are many who aren’t, providing the most basic of support for people with disabilities, if even that.

This can range from the everyday problems of everyone unchallenged helping themselves to disabled parking spaces at the supermarket because “I’ll only be a minute”, or “I don’t want to park in a normal space in case my car gets damaged”, through to disabled people having to lie on the floor in public toilets to change because there are so few properly equipped disabled changing places.

Then, even further through to the language used by organisations who still deem it acceptable to talk about people being “crippled by debt”, or “blinded by science”.

Another issue with the way some organisations engage with Disabled Access Day is that it can tend to focus on just some areas of disability, often being about physical access, whereas the diversity of disability requires a much broader response.

What about people with ‘hidden’ disabilities such as ADHD, or Dyslexia?

What about people with neurodiversity such as Autistic people?

Is everyone considered, can everyone be considered, when an organisation is focusing on how to showcase access on just one day?

While day events like ‘Disabled Access Day’, or even longer campaigns like the excellent ‘#LooAdvent’ campaign before Christmas, can have a positive impact, we need to see a joined-up approach to enable disability equality to be seen as just as valid and important a cause as gender equality, racial equality, LGBTQ+ equality and other more high-profile campaigns that seem to get more publicity.

Where is the #MeToo or #TimesUp campaign for disability equality?

Disability equality seems to be the poorer cousin of its more high-profile family members, with few celebrities mentioning it during Oscar acceptance speeches…

This lower and often uncoordinated profile for disability equality can create real world difficulties for people with disabilities, their families and carers, etc.

If there isn’t a loud campaigning voice for them, it allows Government policy to pass them over, or worse to target them for benefit cuts and radical changes to disability, benefit, and employment legislation.

Imagine if the Government proposed to actively penalise women, or ethnic minorities, or the LGBTQ+ community… if members of these demographic groups were committing suicide because of the pressures being put on them by changes in Government policy (as has happened in the disabled community).

The outrage that would spew forth, the marches on Parliament, the ‘A’ list celebrities that would be queueing up to make statements of support…

So, let’s cheer on those who are independently putting something on for the unofficial ‘disabled access day’ this Saturday, and those who run longer time-limited campaigns.

However, let’s also look at how we can join together to help create a culture where this isn’t necessary any more…

A culture where anyone, of any ability, can access whatever anyone else can all the time; a culture where just as racist, homophobic or sexually discriminatory language is unacceptable, where we no longer make comments that use a disability in order to create a point.

A culture where everyone is accepted for who they are, for what they bring and contribute, and all are treated equally at every level.

It’s not time for ‘Disabled Access Day’, it’s time for ‘Disabled Access Everyday’  #DisabledAccessEveryday #DAE

 

Image rights: © 2016 Disabled Access Day

Birthdays – Celebration or Grieving?

Do we celebrate all that the year has brought; the triumphs, the highlights, the hard fought progress and victories?

Or do we grieve; mourning another year of lost possibilities, filled with sadness as we compare our own child to their same-age peers?

Maybe we do a bit of both, tasting the sweetness and bitterness together…

Last week was James’ birthday, he turned 15.

Apart from wondering where on earth that 15 years went, it was natural to mark the occasion, which he shares with me (the birthday, not the age!) with a few moments of quiet contemplation.

As James was tearing open his cards and gifts, oblivious to the significance of the day, I thought about what the past year had brought and what the year ahead might be like.

At this point I faced a choice… should I start by thinking about the positive things that the year had brought?  Or should I focus on the harder stuff first?

I chose to be positive, reflecting on all that was worthy of celebration…

James has had another year in school, another year of good health, another year where he has generally been happy, contented and has been able to enjoy the things we’ve done.

He’s made tiny steps in his learning, but a little progress is better than none at all.

We’ve discovered new favourite places to visit, we’ve discovered new things to eat (admittedly, not all of these are actually food!).

James, as the ‘poster boy’ and inspiration for so much of the work that I do, has touched the hearts and encouraged the minds of many, many people to make a difference for the children and young people with additional needs that they know or work with…

In fact, the more I think about it, the more positives I can find to celebrate from James’ last 12-months.

Now that doesn’t mean there aren’t negatives; things that have become harder, more challenging, more of a struggle.

There are things that have brought me to tears, things that have woken me in the small hours of the night with worry, things that have left me feeling helpless…

But by thinking about all of the positives, I have come to realise that they breathe life into me, encourage me, build me up, drive me on for James, my family, and myself.

Thinking about the negatives, unless I can change them (which often I can’t), drains life out of me, knocks me down, demotivates me and holds me back, which is no help for James, my family, or me at all…

So I choose not to focus on the negatives, I choose not to give them fuel, to allow them to dominate me.

I choose positive inspiration, to celebrate the victories, small though they might be.  I choose to focus only on things that feed me, encourage me, give me life.

To do otherwise is just a form of parental self-harm, dwelling on the things that have gone wrong, the things that aren’t possible, the things we can’t do.

I choose not to go there, and I choose ‘acceptance’…

Acceptance of our son for who he is and for all that he brings to our family; acceptance of what our life as a family is like, and celebrating it for all the good things that life brings.

I don’t love James any less for the additional needs that he has… in fact I love him all the more.

His 15-years of life so far have been inspirational to me and to us as a family; we are different, very different, as a result of having him in our family.

James has taught us acceptance, a deeper level of love, to celebrate difference, to care and campaign for the vulnerable, and much, much more.

My work reflects our journey with James, and I absolutely love it!

So next time it is your child’s birthday, or maybe on any other day, remember you have a choice; a choice of focussing on the positives or the negatives, a choice of acceptance or rejection, a choice of inspiration or depression…

I choose positive, inspirational, acceptance… I refuse to choose anything else…  what about you?

These are a Few of my Favourite Things

Something that evokes happy thoughts and memories for us, something that brings us welcome peace in an otherwise chaotic world…

It might be a favourite place, some favourite music, or even a favourite food (chocolate, anyone?)

Somewhere or something that is always reliable, and that in that moment helps us to forget about everything else and just enjoy it.

And while that can be the case for many of us as parents of children with additional needs or disabilities, this can be just as relevant to our children too…

Children like my son, James, who is 15 next week and who has Autism Spectrum Condition and associated learning difficulties.

Sometimes, for James, life can be overwhelming… he reaches the point where he can’t hold it all together any longer…

That’s when we go out for a, ‘Treat Trip’…

The fun starts with the journey itself.  James will pick up clues about where we might be going in a number of ways… starting with where he is sat in the car!

If he is sat next to me in the front seat, ‘riding shotgun’, then that’s a clue.

As we head out on our journey, James will respond to the route we are taking. There is one turning that if we take it means we’re definitely going on a ‘Treat Trip’!

James is mostly non-verbal, but when we take that turning, he’ll smile, he’ll shudder with pleasure, and he’ll giggle with delight!

James is VERY food motivated… he eats well and has a varied diet, but he does also have his favourites, and these always need to play a part during a ‘Treat Trip’.

First stop is at a much loved farm shop near Wimborne in Dorset (shout out to Pamphill Dairy Farm Shop here!).  We’ve taken James there for years and they know him well.

They know that he will enjoy browsing around the food and will probably settle on a packet of barbeque flavoured ‘Popchips’ (other potato based snacks are available).

They also know that James will add a packet to our basket, but will open another packet there and then and eat most of them before we get to the till!

“Don’t forget to ring up the packet he’s eaten…” is a phrase I have grown accustomed to saying; but rather than be difficult about it they are blissfully, wonderfully fine about it all…

Such a joy to go somewhere that, ‘gets’, Autism!

We then go for a lovely drive up through the north Dorset countryside, through a long avenue of 365 mature beech trees (one for every day of the year) by Badbury Rings, past the old Roman town of Blandford Forum and on into the countryside until we get to the next place on our ‘Treat Trip’ road trip…  Zig-zag Hill.

James loves Zig-zag Hill because, as the name suggests, it’s a series of hairpin turns which, while driving safely within the speed limit, Daddy can make quite exciting by drifting around the corners.

Squeals of joy match the squeals from the tyres, and the emergence of one of James’ few words “More!” accompany this climb up the steep hill.

Situated near the top, on one of the high points of the whole region, is Compton Abbas Airfield  a little grass airstrip with a lovely café/restaurant.

James loves going here to watch the little planes take off and land; they have some vintage specimens such as a Tiger Moth bi-plane and a Harvard Warbird (for the plane geeks out there!).

But what James loves most is tucking into a large slice of millionaires’ shortbread and gulping back a glass of cool lemonade!

He will savour every crumb, every drop, until it is all gone and will longingly look towards the counter again for more!

We can while away quite some time here, until it’s time to head back to the car and start the journey home again.

This is another place that James is really welcome at, and where he very much feels at home.

You’ll appreciate that having topped up James’ previously consumed Popcrisps with a large slice of millionaires’ shortbread and some lemonade, we take a different route home avoiding Zig-zag Hill in favour of a more sedate option!

Depending on the time, we might call in at Blandford Forum to one of Daddy’s favourite places, the Hall & Woodhouse “Badger” brewery shop, where James gets to practice another of his words… “Beer!”

(Don’t ask… a story for another day!)

Eventually, we arrive back home, happy and full both of good memories and cake.

‘Treat Trip’ has worked its magic again… the familiarity, the welcome, the routine, the food – always the same.

It’s a special time and one we’ll be repeating again this weekend as James reaches another half-term holiday.

A half-term that he’s found hard at times, but he will happily shed those difficult memories as we enjoy making some happier memories together on another, ‘Treat Trip’…

Teamwork

That you’ve got to shoulder the weight on your own, because if you don’t, it just won’t happen?

Or maybe you feel that you’re the only one with the right blend of skills, knowledge and understanding to be able to do it all?

All of this can be especially true for those of us that parent a child or young person with additional needs…

I know I’ve felt like that on many occasions and I’m sure you have too… but sometimes, like today, I’m reminded that we are designed to work better as a team, and that when we work collaboratively together we can achieve much more than we ever can on our own.

Our son James, who has Autism and associated learning difficulties, has been going through a difficult time with transitions lately; particularly the one from home to school.

He enjoys school, especially any activity involving food (as you’ll see) but he has been struggling with the morning transition from home to the school transport.

Ever since he started school, James has been picked up from home by the school mini-bus and has always enjoyed the ride… until recently…

After the Easter holidays, he started refusing to go in on the mini-bus and most days since then has needed to be taken to school by car (a logistical work nightmare, but that’s for another day!)

It’s during this time that I have been reminded of the value of teamwork…

Without teamwork it was becoming a real struggle to get James into school and to his desk, he would drop to the floor at the first opportunity and refuse to budge, but with teamwork we’re getting him to his school desk every day and he’s staying there… an achievement in itself!

Let’s take today as a good example… ‘Operation: Get James To His Class’:

1) Having refused the mini-bus (again), I let James settle for a while and then get him ready to go to school in the car.

Once in the car I phone the school to let them know we are 10 minutes away so that ‘Operation: Get James To His Class’ can commence…

2) As we pull up outside the main doors of the school (marked ‘For mini-buses only’, oh the irony!) and I get James out of the car, a member of the school reception team is already there holding the main entrance door open for us. We’re in school… yay!!

3) Through reception, a Teaching Assistant from James’ class is waiting to hold the next door open and to quickly go ahead of us, rapidly swiping us through doors and up stairs until we reach James’ class, removing any barriers that might slow us down or cause James to change his mind and drop to the floor.

4) Entering James’ class, just one member of staff says “Hello” to James so as to welcome him, but not overwhelm him, as he reaches his desk.

5) We congratulate James for successfully making it to his desk, then the previous TA escorts me back out to the car again! Phew!

In a seamless, well drilled routine that we’ve developed over the past few weeks, James makes it into school to his class and to his desk with the minimum of fuss or upset… Teamwork!

While all these simple practical steps are being worked through, there is another part of the team out there playing their part.

We have people praying for James, and for us, that he will be able to make the transition into school happily and well, and we believe that the work of James’ prayer team is just as important in getting him successfully to school as anyone else.

Some people who want to help in this way but who don’t have a faith think positive thoughts about James, and even knowing that people are thinking of him in this way is a real help.

It’s much better than trying to do it all on our own, thinking that it’s all down to us, that no-one else is going to help…  To struggle on determined to carry all of this ourselves.

The reality we’ve found is that while there will always be people who can’t or won’t help, the world is surprisingly full of people who will pitch in and make a positive contribution when we need them and when we ask them; just as we would do for them.

Their willingness to help might be practical, like holding a door open so there isn’t a physical barrier to slow our progress down, or it may be just encouraging us with kind thoughts or prayers… it’s all very welcome!

So, let’s not be afraid to ask for help and to offer it, to seek support and to provide it, to work together as a team for the benefit of our child or children and ourselves…

Life can be so much better when we live it and work at it together!

A Special Needs Dad’s Perspective

James’ Autism affects him significantly, he is mostly non-verbal, although he does have a few words including ‘No’, ‘More’, ‘Please’, and rather embarrassingly, ‘Beer’! (a long story for another blog!)

As we lay next to each other, James vocalised sounds and I repeated them…

He loves this, touching my lips or teeth with his finger as I repeat his repertoire of sounds, feeling the vibration of the sound through his finger and then repeating it again.

Time slipped by as we did this simple activity together.

It was wonderful spending this time with James, with him letting me join in with him and him clearly delighting in the son/dad time we were able to spend together.

His beaming face, his raucous belly laugh, his enthusiastic demands for ‘More!’ (thankfully, not ‘Beer!’), love shining from his eyes, all mirrored in me too…I wouldn’t have missed it for the world!

I meet lots of Dads of children with additional needs in the work I do, Dads who are all at different points on the journey with their child.

Some are baffled and bewildered by what is happening to their world, trying to make sense of it all and looking for answers.

Some are in denial, trying to ignore the reality that their child is different to what they expected.

Some respond by putting all their energy into trying to “fix” their child…looking for solutions in the same way that they might try to repair a car.

Others simply love their child for who they are, accepting that things are different, but celebrating the differences and loving through it all, knowing that what their child most needs is their unconditional love.

One thing that often unites these Dads, however, happens when a group of them come together…

When this happens, I’ve seen men sharing their stories in ways that they have never been able to before, especially with their partner.

Once these guys start releasing what’s been stored up in them for so long, while they have often been trying to “keep it all together”, or be “the strong one”, all their emotions, feelings and built up stress come flowing out…

Sharing with other guys who get it, who understand how they feel, who are on the same journey, releases something powerful within them, sometimes allowing guys to grieve for the first time the loss of the future they expected for their child.

The tears flow, there are hugs of comfort and understanding, it’s wonderful to see…and often quite a surprise to their partners when they are reunited afterwards!

Of course this comes too late for some Dads…Dads who have already gone, who for a million reasons couldn’t be a part of the family any longer.

53%* of families claim that having a disabled child causes some/major relationship difficulties or breakups.

My heart breaks for what they have lost; I cannot judge them as I don’t know their stories and I have no right to judge, but my heart goes out to them and to the families that are left behind.

But what the Dads I have met have taught me is that bottling up how I feel about James, trying to keep it all together when it’s hard, not talking or sharing about it, being a stereotypical ‘bloke’ about it all, doesn’t help any of us.

Releasing all of that and then just living in the moment where I’m laid next to James, delighting in being with him, sharing in a simple activity, showing love to each other, unconditional love despite all the hard stuff…that’s what being a Dad to a child with additional needs, or any child come to that, is all about; and that’s what my son and my family need most from me.

I’m already looking forward to this evening!

*Source: Jill’s House