Stress Awareness Day

It’s the irregular heartbeat.

It’s the palm sweating, head pounding, vision blurring out of control feeling.

It’s the difference between fight or flight.

It’s the voice we hear late at night reminding us of all the things we forgot to worry about earlier in the day.

It’s the start of anxiety.

It goes hand in hand with anxiety, in fact you can’t have one without the other – a little like love and marriage.

It is a silent killer.

It is the extra bags under the eyes.

It is the extra lines carved deep into your forehead.

It’s sneaky.

It’s powerful.

It pushes into your mind forcing you to spend time thinking, worrying, over analyzing the things you cannot change or worse, creating problems which may never arise.

There’s so many different levels of it; that no two peoples tipping point are the same.

It can make your stomach so tight that you can overeat or forget to eat.

It makes adrenaline pump through your veins for no reason other than panic.

It breeds panic.

It breeds panic in situations or places where there is no reason to be panicked.

It is exhausting.

It’s a mood changer, game changer and life changer.

It stops you.

It stalls you.

It hurts you; physically and mentally.

Yes, it is indeed something everyone knows a little about.

I know stress.

We have a relationship which is ever changing.

Stress brought anxiety, fear and of course good old panic into my life.

Stress never arrives alone. Stress dabbles in depression too for she is a merciless piece of work.

Stress has for a long time now, been taking over my everyday thoughts, actions and reactions.

Recently, however, I was given an opportunity to meet my stress and her friends face to face.

I have been meeting with stress, anxiety and panic regularly; this time when I summon them.

I’m getting to know what they want, how they work and how I can work with them.

There is no way to get rid of stress and her mates but there are a number of ways to manage them.

I started a mindfulness course.

I am really enjoying it and finding that if I understand my own personal triggers, I can talk myself down before stress brings her mate anxiety to the party.

I meditate daily.

I take time to just breathe.

I am beginning to see the trees without the fog.

Stress and I are indeed forever intertwined ; but it is only now that I understand why she is here with me.

Stress is something which can take over your life ; I believe the key is not to ignore her but to accept her and take time to be in the now with her. She tends to quieten down when I take the time to reason with her.

Stress doesn’t really like the ‘now’ ; well, my stress doesn’t. She would much rather I panic over something that may or may not happen in a few months or even years time.

Anxiety and panic attacks are also very much in my life thanks to Ms Stress ; but they too quieten down when faced with a calm mind and some deep breathing.

For anyone experiencing heavy amounts of stress , I would recommend to look up some mindfulness courses in your area or online.

There’s no shame in needing medication to help balance yourself too ; I have written before about having to take anxiety meds which have also helped me hugely along with mindfulness

This month is Stress Awareness month ; let’s hear it for all of us battling it daily.

National Sibling Day

Arguing, shouting, fighting and with having a brother on the spectrum there was a lot of give and take growing up – but there was a whole lotta love and laughter.

We are fortunate to be a close family and I think this helps when we share the hard and difficult times that our special needs journey brings.

We are also a multiplex family and there are a few of our boys on the spectrum.

My son is an only child, and that’s completely fine as he is fortunate enough to have cousins that are like his brothers.

They say that cousins are your first friends you have as children, guaranteed to be there for the rest of your life and the ones who will only ever truly appreciate how crazy your family is.

Cameron and Alex are exceptionally close in their own way.

They have the same interests in trains, vehicles, Roblox and YouTube – oh and let’s not forget their love of the extra plain MacDonald’s burger meals.

They are often found parallel playing; be it at school club in the holidays or at home, which makes us smile.

They are both loving and kind and out of all the cousins seem to share the most unique bond and I truly feel that this is down to their autism.

They can spend hours together lying on nanas bed but both completely enthralled and oblivious to the other in their own individual task and world.

Cameron will go and venture for a snack and return with a haul for both him and Alex – usually having left out poor little Leo.

When Alex was younger he would hold his hand, guide him and ask him, “What’s wrong? Are you ok? What’s the matter? Who did it?”, if Alex was having a difficult time of things.

Cameron went through a period of referring to Alex as his “son” and this made us all smile as it was his way, we feel of expressing his love and fondness for his cousin.

Cameron will often rush off upstairs and do the baby gate for Alex, hurrying him along so that he can close the gate before Leo can catch up and disrupt their quiet.

He loves Leo also and Charlie but Leo is a whirlwind in their calm and Charlie is still a baby!

I thank my own sisters for loving my son as their own!

I thank them for their boys; for making them so loving and rounded that they, in turn, love my boy as their own!

Washing Your Hands – Sounds Simple, Right?

When they were born, they all popped out ‘physically healthy’.

Ten fingers, ten toes as the midwife said.

As they all grew and developed, we’ve tried to help look after their health and we’ve been fortunate in that generally we aren’t the family that picks up bugs or sickness, we aren’t always full of colds and snot.

But some of the basic things to help us not get sick are difficult for our boys who have autism.

Take something simple, like washing your hands for example.

Before eating, after the loo, perhaps even after going to medical appointments or visiting big public places and attractions?

Seems simple enough, unless you are our Anthony or David.

Anthony has ASD and was diagnosed with ADHD around seven.

His ADHD diagnosis was put him at the extreme end of the scale.

One could argue his ADHD was a greater challenge than his autism.  What good are routines to help with autism of Anthony constantly gets distracted and can’t finish them.

And so, it is with hand washing.

If I ask him to wash his hands in the kitchen and there is anything between him and the sink, it won’t happen.

I’ve found him tying his shoe laces in the hall, pouring himself a drink or even playing on the iPad whilst stood next to the sink.

David on the other hand, as another child with autism, really struggles with routine and generalising sometimes.

He’ll wash his hands in the sink at school, but not the sink at home.

Or he’ll only wash his hands if a certain towel is there, or a certain soap, or if you ask in a certain way.

Put this together with the fact that David id pre-verbal and can’t tell you what isn’t where it should be and it’s a big guessing game that will can result in him running away and me chasing him with baby wipes.

All I can do though is support the boys.

Their sister helps by setting examples, and she’ll let Anthony wash his hands first so he ‘doesn’t forget’ while she does it.

And David is just going to take time and practice.

Stress Awareness Month

I can feel the vice-like panic calming inside my body, my heart rate is returning to normal and all whilst I’m thinking what can I make for tea tonight now that I forgot to take the chicken out of the freezer this morning.

You see, with anxiety there is no specific event or logical reason as to why an attack will suddenly decide to take a hold of you.

I became much more stressed as a person when my son’s hospital appointments and assessments increased pre his ASD assessment.

That was five years ago now and I feel that since then although I cope exceptionally well, I just continuously run at a slightly increased level of stress.

Stress is sometimes good though, I figured out early on that it motivated me and empowered me to fight for what my son needed and achieve my parenting goals.

Although maintaining the level of stress quickly burnt me out and brought on the anxiety.

Although stressful – I used to be elated with each milestone we achieved as a family; eating new foods, successful family days out, moving into the next reading group, a full night’s sleep etc.

I use to think that we had “cracked it”, only to realise that subsequent challenges we faced were now just different challenges not more or less.

So, the stress continued.

I tried spa days; but found this made me worse as all I could think about amongst the meditation music and scented candles was if my son was behaving in my absence, with it being a change in his routine.

I tried self-help apps for meditation and relaxation; and although these worked to a degree, I found it hard to follow the “imagine this scenario” being spoken about as my mind was wondering in every which direction and covering “what-if’s”!!

Recently in the organisation I work for there was an opportunity to complete a Mental Health First Aider (MHFA) course, to become part of a support network for people struggling with their own mental health.

I made it onto one of the 16 places from 200 applicants and the course was such an eye opener into the reality that everyone has inner demons; some bigger – some smaller, but demons none the less and everyone has their own cross to bear.

I was taught techniques to identify people in need and given tools to be able to guide them to appropriate support.

I found in doing this course; being in this environment and sharing my personal anguish and deepest concerns and experiences with total strangers really cathartic.

I realised in that moment that I’m lucky through blogging I get to share and vent a lot with the world and for me this is my coping strategy.

It’s a way for me to get down all my thoughts, worries and even hopes.

I remember after my first few blogs my husband said to me that up until that point he had never realised how hurt and affected I had been from our son’s diagnosis, I realised that I never shared the load with him and this is what had led to my stress and anxiety.

Bottling up the emotions does not work and is not healthy, yes we all deal with stress and that’s everyday life but we cannot let this rule or consume us.

It’s important to identify what our own triggers are and try to take preventative steps before our health and wellbeing is affected.

By recognising our triggers, we can try to embrace and control the situation.

Bohring-Opitz Awareness Day

Talynn Gurganus was born at 35 weeks on January 27, 2014. At birth, she was transported to Children’s Hospital of the Kings Daughters and spent 3 ½ weeks in the NICU.

At birth, she was transported to Children’s Hospital of the Kings Daughters and spent 3 ½ weeks in the NICU.

Over the first 11 months of her life, Talynn demonstrated the following symptoms:

● Missing part of her brain (P-ACC)

● Feeding difficulties (G-tube fed)

● Very slow growth (failure to thrive)

● Developmentally delayed

● Birthmark (flammeus nevus)

● Nearsighted (myopia)

● Prominent eyes

● Low muscle tone (hypotonia)

● Recurring respiratory infections (pneumonia)

● Silent aspiration

● Unable to communicate verbally

● Multiple hospitalizations

● Sleep apnea

● Abnormal hair density and length

We were in need of answers as to why our daughter had these symptoms and why she was hospitalized so many times.

We went through many doctors until we found the right team of twelve. Finally, the day came when we got a call from our Geneticist. She told us she suspected that Talynn had Bohring-Opitz Syndrome.

Bohring-Opitz Syndrome is an extremely rare genetic syndrome.

There are fewer than 100 cases in the world.

This syndrome is diagnosed by genetic testing and is a mutation in the ASXL1 gene.

The leading cause of death is respiratory infections.

Children with BOS can have feeding difficulties, recurring respiratory infections, sleep apnea, developmental delays, failure to thrive, abnormal hair density and length, Wilm’s Tumors, brain abnormalities, silent aspiration, and the list goes on.

On January 14, 2015, the genetic blood work came back and confirmed Talynn had Bohring-Opitz Syndrome.

Talynn’s first year of life was her hardest, but now that we know that she has BOS, it helps us better prepare for the hard days.

Since Talynn’s diagnosis, the only additional symptom she has developed is seizures.

Talynn continues to develop, but at her own pace. We will never let any of these labels define who she is.

We will help her be the best she can be!

Show your support this April 6, 2018 by wearing navy and gold for Talynn and the other Bohring-Opitz Syndrome patients!

Follow Talynn’s Journey @talynnsjourney.

Easter At Our House

Along with chocolate rabbits and Easter Egg hunts in homes and gardens filled with spring flowers and cherry blossom, many families may be heading to a religious service as part of their Easter celebrations this year.

Honestly, we haven’t been to a church service in years.

It’s just too difficult.

With two autistic boys, some ADHD and a five year old girl, our family has almost zero ability to sit still, be quiet or even pay attention.

I get all stressed and it becomes more than a pointless exercise.

David would only want to play with an iPad and neither of the boys take well to others singing.

At least that’s what I thought.

Last year, David’s older autistic brother, Anthony, went to an Easter Service as part of his school day.

Although David goes to an autism unit, Anthony and his sister goes to a church school, so I wasn’t surprised by the idea of his school walking his class down to the local church one morning.

Anthony is helped in school by a Learning Support Assistant (LSA) and at the end of that day when I collected him from class she, told me he’d sat really well in the church.

Additionally, he had been very complimentary about one of the girls in his class who had been singing a hymn solo as part of the service.

I was a bit surprised, Anthony rarely appreciates the talents of others.

So, I asked Anthony about it.

Except he didn’t want to say anything.

“Her singing was just too beautiful mum, I can’t talk about it.”

Anthony, like many people with autism, processes his senses differently to others.

He can’t look at rainbows, some views of the countryside or into jewellery shop windows because the pattern of light and the way he interprets it is effectively overwhelming for him.

It was the same with his class mate and her singing.

It’s as if it literally took his breath away.

We often have music in our home, singing and signing is a great way to get the kids communicating and we all love a good dance especially if it’s to a theme tune that the kids recognise.

But I wonder this year if we’ll be able to play some Easter hymns?

We manage them at Christmas but I guess we’ll just have to wait and see how Anthony feels about it.  Perhaps we’ll have some religious singing after all?

All Inclusive Easter Egg Hunt

As we all know, Easter is among one of those celebrations that the kids definitely love to celebrate.

Family gatherings, delicious meals to be shared with our families, prayer and religious celebration, and of course colorful eggs to be hidden and found by excited children.

Last year was our first to experience an, “All inclusive”, Easter egg hunt with Oliver and his friends and family.

If you have not heard of this, it is where they (for our area, it is our No Limitations group) set up different stations for children and their siblings of any and all disabilities to have the change to experience an egg hunt.

When Oliver was a year old, we had trouble with our first egg hunt, because he did not have his wheelchair then, and it was hard having him crawl around in the grass outside getting eggs before anyone else.

Last year, “No Limitations” set up tables with fake grass on it, plants and flowers, and eggs hidden all around the plants and grass.

This was to simulate real grass on the ground to give kiddos in wheelchairs the same feeling of finding those goodies.

They even had a crawl area for crawlers and young ones like siblings, to head out and find eggs without battling the big kids.

It was such a fun event to see kids and siblings being included all together on a family holiday.

This year we hope they set up the same kind of event, in which we definitely will be attending.

When holidays and certain events suddenly have to take on changes to include everyone, it is hard to come up with ideas like these on your own.

But, having families and support from all over, all disabilities, without limitations, we are heard as one voice to approach the situation from any and all angles.

How are you celebrating Easter this year?

If you would like to share fun ways you include everybody, please leave a comment below!

Pet Sounds

So many things SEN parents have to deal with, emotions, physical difficulties, admin.

Which should I pick?

Then something small bounded into my life.

I knew! Pets!

Father of Pearl and I were both raised with dogs (with, NOT by).

I spent my childhood longing for a cat. Attempts to beguile neighbours cats into the house,and persuade my parents that they were stray were unsuccessful.

When I had moved out and a friend needed to rehome their cat I did not hesitate.

One marriage, several cats, house moves and two children later we had experienced.


Now I am phobic about fish. Can’t stand them.

Don’t like looking at them in the supermarket.

Can’t eat in restaurants with ornamental fish tanks.

I say “am”.

I mean was.

Eldest was obsessed with fish and wanted to be a marine biologist.

Two tanks and 5 years later through gradual desensitization no more phobia.

Was still secretly relieved when the last one died.


I know they are different but there were a fair few and they had jolly, short and happy lives I believe.

Turns out I can watch human dissection and see a dead body of a loved one but am unable to deal with handling a dead gerbil.

It’s SO dead.

Stick Insects.

After Pearl had been born we slowed down on animal acquisition, but someone at the kids’ Primary School had very fertile stick insects.

Nearly everyone in Rab’s school year had a tank of them.

One evening my mum was babysitting and heard a crash.

She ignored it.

When we returned the cats had knocked off the tank and chewed the escapees up and spat them out.

That was the end of the stick insect experiment.

Guinea Pigs.

These are excellent sociable little animals.

When Rab was 5 he was diagnosed with anxiety and we bought them for therapeutic purposes.

“I’m going to call mine Happy and then when I’m upset I can go outside and feel Happy,” is one phrase I didn’t expect to hear.

And that brings me neatly onto death.

“Get pets so your children can learn to cope with death.”

This is surely the most ridiculous piece of advice ever given and should be consigned to the scrap heap along with, “God only gives Special Children to Special Parents”.

Dealing with the death of a pet is horrible.

Horrible, particularly if the pet was a therapeutically named Guinea Pig who developed meningitis as a result of an eye infection.

It doesn’t make it easier to cope with the death of a loved one.

Nothing does.

Everything dies, we know everyone dies.

Knowing this in no way aids the grieving process.

Now we have three cats.

One of these is Pearl’s.

We didn’t decide this, the cat did.

It keeps an eye on her, sleeps on her bed when she is out runs to her if she cries, and has made attempts to get on the taxi to school.

It is a cat with immaculate taste.

We also had one small dog, a Yorkie Poo.

A great comfort to Rab who struggles with sleep and night terrors, but is vastly comforted by small dog Herb.

He is such an asset to family life that we felt another one should come along soon to ensure there was no dog gap when the inevitable eventually occurs and to keep him company.

After an awful week when the Black Dog of depression came to sit with me, SEN  and house moving stress seemed overwhelming we thought a bit of pup therapy was due.

And here she is.

She is hilarious, tiring, and happiness inducing and should probably be called serontin, but instead we have called her Tilly and she is just the tonic we needed.

Are you pet happy? Tell us how your animals have helped you on your special needs journey and share a picture, that is, after all, the finest use of the internet!


Although we all love Easter; the move into spring and the lighter nights, it does bring with it the two weeks of school holidays that for special educational needs (SEN) families can be quite stressful and require more planning.

I always try to see what local Autism Friendly events are happening, these are becoming more popular to my delight.

Many museum, cinemas and even supermarkets are getting on board to try and provide an inclusive and less stressful experience for families.

Failing that you can always look at when certain places have time periods of being less busy like first thing in the morning or later in the evening.

How about making your own activities at home – if your children find it too stressful to go and participate in an Easter egg hunt them make your own in doors.

Hide your eggs in your own home or garden if the suns out.

Consider having the eggs out in the open to make them easy to find.

If you have multiple children in your home, select different colours for each child.

This ensures that everyone will get the same amount of eggs.

No one wants a meltdown!!

How about decorating some warm boiled eggs with wax crayons or stickers?

Many children don’t like dye due to sensory issues that messy play brings.

There is a whole plethora online of alternative ideas.

You will find that many SEN children have special diets so the standard go to chocolate egg just isn’t an option.

How about you purchase some colourful plastic egg from your local store then start to fill with non-edible treats:

  • Money ie: 50p/£1 made up of various coins to encourage counting
  • Redeemable coupons that your children can exchange for computer time, favourite snack
  • Confetti for sensory stimulation
  • Stickers
  • Miniature cars / mini figures
  • Finger puppets

For nonverbal children maybe create lights, touch and sounds Easter themed sensory boards/baskets.

These can then be used in future years.

Our generation is exceptionally lucky that we have the internet and have access to so many ideas to make our children’s learning journey more interactive and enjoyable.