Special Needs Parenting: Avoiding Holiday Stress

Shopping, wrapping presents, writing and sending cards. All these on top of the usual hectic and often stressful lives we lead. In addition to this is the emotional pressure of pleasing everyone.

Something many of us are familiar with but is often an impossible task.

Visiting relatives or having them visit you can heap on pressure and your stressometer can be ready to explode.

All this and all you are trying to do is keep everyone happy.

The presents and shopping, are often the least stressful part as this part can be managed over a period of weeks (thank goodness for the internet).

What I hear the most is the most challenging is managing trips to or visits from relatives that you often only see a handful of times a year. This can be especially stressful if you have a child with special needs or a disability.

So how can you manage the situation so that the whole family can enjoy the festive break?

  1. Stop trying too hard – Everyone’s happiness is not your responsibility – focus on the most important people and no more.
  2. Only do what you know you can manage and stick to your plan – If you know your child will only manage a couple of hours at a relative’s house then explain this in advance to your host – If they are worth it they will understand, if they are sniffy and judgemental then ask yourself why you are visiting in the first place!
  3. Just because they are family doesn’t mean you have to see them – There is little place in the world for oughts, shoulds and cant’s. Live life by your rules not ones that have been projected on to you by others!
  4. If you decide to have people visit you then plan it around you and your family’s needs – Don’t be afraid to tell people you need them to leave by a certain time if you have children that wake through the night or that find visitors hard to cope with – There’s even specially printed bunting available now asking people to leave by 9pm!
  5. Make sure you ASK FOR HELP from others – people aren’t mind readers and won’t necessarily know that you are struggling.

  6. Try not to be sarcastic if you are being left to do everything – see the previous point about others not being mind readers! If you assume then it builds resentment in yourself which has the potential to impact on everyone!
  7. Plan opportunities to have a break – whether that be a walk around the block, a nap, a relaxing or where possible a night out with friends – do it, don’t just talk about it!
  8. If you find yourself questioning this – ask yourself why – what are your barriers to implementing your own boundaries?

Try and follow these and the Christmas period has the potential to be far merrier for everyone.

Have a great festive period everyone and here’s to 2018!

Special Needs Families: What You Really Say Whenever You Tell Your Child that You Are Sorry!

Difficult because the children are home 24/7.

Because they need you to meet their needs.

Because you don’t get that much needed time to do all the things you would usually do when they are at School.

Because you are juggling meeting the needs of your disabled child(ren) with your non-disabled child(ren)

That’s some of the reasons why the holidays are hard.

So it’s only natural that you overreact to situations that normally wouldn’t phase you.

You’re tired, out of routine, constantly on call and, you’re human!

You find yourself snapping, you lose your temper, cry or walk away to another room or you might say something you don’t mean either directly or indirectly to your child!

And your little ones are either your target audience or they over hear a conversation and from that, they construe a whole different meaning about what they have just heard.

They do this because our children’s world is infinitely smaller than an adults world, it has less power and less access to information to decode what they have heard.

So often your child will assume that the reason you are cross is because of something they have done or can do something about.

Most of the time it isn’t!

Yes, there will be moments when you might be genuinely cross at them for something that has happened but usually, our anger is about how we feel about situations.

An example of this might be that your child has spilt milk on the carpet and  whilst you might feel annoyed, it is more likely that your annoyance is related to having an extra job to do!

Not to mention, the potential for the milk staining the carpet and creating a horrible smell in a few days time whenever you realised that you’ve missed a bit in your cleaning up process.

Emotions are like a recently boiled Kettle!

This is where Sorry becomes essential and I don’t mean a quick, ‘Sorry about that!’

I mean a, ‘let’s-have-a-debrief-when-it-is-safe-to-do-so’, (for everyone, especially if tensions are running high.)

You know when you have boiled a kettle and you go to reboil it a short while later, it boils much more quickly, doesn’t it?

Emotions are very much like that – they need time to fully cool.

This could take 15, 30, 60, or 90 minutes or it might mean that you revisit the next day.

Whatever is needed by everyone is the most effective way to have a successful outcome – if you are ready to apologise but they are not ready to receive it, or vice versa, you will risk reboiling the kettle and provoking another difficult situation.

Five Steps to an Effective Reconciliation:

  • Cool down – Allow everyone to cool down and become calm
  • Communicate – Let everyone know that you will deal with this situation when the time is right but do so at the first opportunity
  • Co-operate – Ask if you can have everyone’s cooperation to reconcile the situation – Don’t assume or force people to take part – that’s dictating and is likely to be unsuccessful
  • Be genuine – Don’t pretend all is OK if it isn’t, children are highly perceptive of other people’s feelings even if they are yet to fully understand them. Tell them you felt upset, sad, frustrated about what may have happened and reduce language where you need to – you know your children the best.
  • Move on – Once the apologies are done (and everyone is happy with the outcome), move on – don’t keep going back to what happened as that will recreate the situation – If your children do, gently remind them that you were sorry but that you are human and we all make mistakes. Tell them you love them and draw a line under the incident.


By using these techniques you will be equipping your children to deal with conflict in many situations – not just at home.

Remember; it will almost certainly take practice so keep on trying.

Special Needs: What is the, “Real World”?

Recently I was speaking to another practitioner about a young person with a disability, explaining an incident that had happened to the young person and what I felt would help them in the future.

The reply I received was:

Well they’ve got to learn to live in the real world!

Have you ever talked about your child to another person or practitioner and taken that risk to describe their needs as you know them to be only to be met with ‘yes but that’s not the ‘real world’ is it!

Or – You can’t expect people to understand/accommodate/make allowances for that!

Ooh I’m not sure…the other children/adults won’t like it!

It won’t be fair on the others!

These are all things I have heard from other practitioners when working with children with disabilities and I’m sure many of you have heard them too.

Hearing something like that can feel like a real blow when we take a risk and ask for what our child needs.

Of course there have been times when someone does ‘get it’ and they go that extra mile to help. What a difference that makes!

But the reality is often very different!

So why does it have to be so difficult? –

Much of it is down to lack of understanding or an unconscious or subconscious prejudice or assumption – People with disabilities don’t want or won’t enjoy the same opportunities as their non-disabled peers and therefore they won’t be considered in the same way.

Yes we have made progress but there is still a long long way to go! (Thankfully, we have the Equality act in the UK – although not even this is adhered to adequately, sadly.)

Which of course is complete nonsense!

So what can we do? We keep on keeping on, that’s what!

We take the stance that this isn’t about us, it’s about them and what they need to do differently – and I am not just talking about the really big stuff here such as accessibility and equality but the small things that also make a difference.

Being honest about expectations. Trying to reach a compromise to enable a child with a disability to access a school trip rather than making them feel like a risk assessment.

If you don’t feel you can meet a disabled child’s needs at a birthday party then ask the parents what you need to do to make the party accessible, the smaller stuff is as important as the big stuff.

Think what you can do rather than what you can’t do.

By listening to each other and offering unconditional acceptance and positive regard for what you are being told is a much more effective way forward.

Too often people can tell you why they don’t have to do something rather than looking at what they can do to make a difference.

To say OK what can we do to help this situation, what will make a difference here has the potential to make such a difference to people’s lives.

To understand that whilst it might not be your experience of the ‘real world’ – it is theirs. And that their experience is as valid as yours.

Life is often about perspectives and how we look at it, so try looking at it from another angle!

Special Needs Parents: There’s No Time – I’m exhausted!

How many of you have experienced these?

– I’m desperate to be able to go to the loo without being followed or a disaster occurring downstairs!

– I just want a full night’s sleep!

– I want to drink a cup of tea that is still warm!

– We haven’t had sex for months!

A parent at their wits end that just needs a break (and these are the parents that have been able to find the time to make the decision to come for sessions).

These problems can land a parent at the limit of resources to cope.

Lack of sleep can cause anxiety.

A sexless marriage can create doubts in each other and in the relationship.

Being able to use the loo without being disturbed can give you that 5 minutes of peace that helps restore your resilience to keep on keeping on.

But what can be done about these things?

Put your thoughts into words!

One of the main difficulties is that these thoughts and feelings stay in your head – then they ruminate around and around and create other difficult feelings – Feelings breed feelings!

We start to believe that no-one else is experiencing what we are experiencing.

That our relationship is the only one that is impacted.

That everyone else’s relationships are perfect.

They’re not and social media really doesn’t help with that concept!

Doubt can then creep in, then guilt, then anxiety – That is what I mean by feelings breeding feelings.

This in turn impacts on how we respond or react to others, which in turn impacts on how we feel about ourselves.

By talking about what you are experiencing either with a friend, your partner or a professional it can help put things into a more manageable perspective.

If you haven’t had a full night’s sleep for what feels like forever then no wonder there’s little or no sex at the moment.

Talk about it with your partner if possible, if not find a friend that you trust, call a helpline if you wish to remain anonymous or might feel awkward or embarrassed.

If you are constantly on the go then look for those five or 10 minutes when you can find some you time – look at what happens in a typical day and see where changes can be made.

Those 5 minutes at a time can make all the difference and knowing that you deserve them can be a life changer.

Things that you can do to get your few minutes of ‘me time’:

– Ask a neighbour/family friend to watch the children whilst you have a cuppa in the garden/bedroom wherever you won’t be disturbed

– Journaling/blogging can be very therapeutic

– Ask for help – It is OK to need help from others and to trust them to do OK

– Join/start a support group

Tell yourself I deserve this – You might be surprised to know that many people feel they don’t!

Post Diagnosis: Who Looks After Special Needs Parents?

They have clubs and tea dates to arrange and a myriad of other things to contend with during term time.

There is barely time for their feet to touch the floor, let alone get to bed before 11pm most nights.

When raising a child with an additional need or complex disability this often involves a very different type of stress.

It can mean seemingly endless appointments, preparing and evidencing paperwork for school placement, battling for equipment, sleep deprivation and a whole new ‘normal’ to contend with.

Often the cost of coming to terms with your new normal takes time and impacts on friendships, relationships and home-life.

A whole life adjustment has to take place and can create problems whilst this adjustment happens.

For some it is like a grieving process, for others they experience a depression or anxiety

Some parents don’t ever manage to accept their child is disabled and relationships do break down.

Some parents blame themselves and find it very difficult to lift themselves out of the feelings they are experiencing.

Some cope relatively well and muddle through.

There is not a, ‘normal’, way to adjust to how life will be from now on.

The most important thing to remember is that you are still the same family today as you were yesterday!

The poem by Emily Perl Kingsly, ‘Welcome to Holland’, describes receiving the diagnosis of a child with a disability being akin to the expectation of travelling to Italy but landing in Holland.

The thought process and adaptation of landing in Holland can be a shock initially but actually it’s not such a bad place after all, just different and requires a huge learning curve.

Feeling alone is tough especially at a time when support is crucial.

Remember to seek out support, join support groups whether face to face or online.

It is often said that people feel abandoned when their child is diagnosed or recognised as having a disability and this is often true – often the professionals have little knowledge of what is ‘out there’ to provide support and other parents become a rich source of information.

Use them and their knowledge and give yourself a helping hand!