Category: A Dads care …

C.A.R.E. …

My book is not intended as an instructional manual, but a true and at times raw story of what it is like living with a family member who has multiple and complex disabilities. I have covered a number of interventions we use, including this one, but real awareness comes from understanding what it means to live with them. I invite you to read my story and share what you learn from it.

I like to share this and other messages of support and essential action periodically to help society understand what to do if we come into contact with someone having a seizure.

They are not monsters, they are not possessed, and they are not to be used as a subject for filming and ridicule. They need you awareness, understanding and support.

CARE is an acronym for basic actions you can take to help them.

C – Comfort

Cushion their head with something soft, to protect them from injury and keep them comfortable

A – Action

Start to time the seizure, and clear the area of anything that might be harmful. You could also check if the person has a medical ID or bracelet with more information on how to help

R – Reassure

When the seizure has stopped, place them in the recovery position, stay with them and reassure them as they come round

E – Emergency

Call Emergency services if:

  •  the seizure continues for more than 5 minutes
  • the person is not regaining consciousness
  • the person goes straight into another seizure
  • the person has trouble breathing after the seizure
  • the person has never had a seizure before

Thank you.

Sometimes, magic happens …

The garden is a sanctuary for me. It always offers something that requires attention, drawing my mind away from a crisis. It provides aspects I can use to help Marc overcome his rage and pain.

Watching your son be overwhelmed by the ferocity of a seizure is heartbreaking. If only I could reach into his mind and take it out, putting it in my own to endure instead of him. All I can do is stand in the garden and scream into the wind and rain, letting them wash away my tears of frustration and anger caused by my feeling of helplessness.

And yet, when his pain passes, it is replaced by a rage so intense that his self-awareness recalls what has just happened. Pleading with me to make it stop, but not understanding why I cannot. The garden waits patiently for me to realise what it has quietly delivered, and only it knows the secret and magic of what it has given.

In this instance, a single rose bloom—a colour that Marc finds soothing, putting him at ease as his tensions fade away. This rose was one he and I propagated together, cutting the stem and placing it in a pot to root. We waited two or more years, and honestly, we had forgotten about it, keeping it in its pot and pushing it to the back of our neglected garden—two years, maybe three, with nothing happening. Then, on this day when his pain was so intense and there was nowhere else to turn, his keen eyes noticed the colour. His mind sharpened, his tears, and mine, dried up, and curiosity took hold of his heart.

Bringing the pot forward, we looked, we touched, we breathed in the fragrance.

We smiled!

Scared …

Standing while a loved one shouts and screams at you, occasionally lashing out and hitting you. Such a force of rage, brewed up in an instant, and you are the target for all that venom.

What do you do?

You try to offer a word of defence or challenge their point of view, and the effect is like pouring water on a fire of oil. The rage erupts into greater ferocity, eyes straining in their sockets, bloodshot from the strains of anger and hatred.

What do you do?

You try to hold the flaying arms as they continually lash out at you, but your touch is reacted to as if you have seared their arms with branding irons. The rage erupts yet further.

What do you do? …

Answer = Remain Calm …

Experience has taught me. This reaction is passing. In time, it may not even be remembered. It is not personal. It is just a reaction to a situation. I aim to understand what that situation was. It could be that a spoken word has caused confusion, and his autistic mind cannot process what that word means. Panic has therefore set in. Fight or flight has set in. It could be that a smell, or a sound, or even the sensation of touch, or taste, has given rise to a hypersensitivity overload which triggers a need to defend against.

Can you stand in the face of that outrage and aggression? Ensure that he is (s)afe and can do no harm to himself. Reduce the level of stimulation from all sources. Can you ensure you are aware that you are intervening on behalf of a terrified person who needs your help and understanding? Can you remain (c)alm in the face of this attack? Can you find a way to empathise with this person, speaking softly and understandingly? (A)ffirm that you hear what they are saying, even if you disagree. Can you understand their requirement for (r)outine and guide them towards those familiar and safe places and activities? Through the ongoing rage, can you find a way to (e)mpathise with them? Demonstrating you’re in support and not in conflict with them. Have you understood yet what triggered this rage in the first place? An understanding that will help you (d)evelop a plan to prevent it next time.

Would you be able to understand that the person in front of you with such aggression and anger is SCARED? And needs your help.

You want to hug them, but can’t, as the sensation of being held at that moment would aggravate their sensitivities. Feelings of being trapped and constrained. You want to look them in the eye, but eye contact would be seen as threatening. You must guide them from a distance and stand with them until they calm down. When they do, then you can reach out and hold them. Comforting them as you always have and demonstrating your unconditional love for them.

Do you understand the difference between a meltdown and a tantrum?

A Garden Safari …

As the restoration of our garden is continuing in full swing, I encouraged Marc to join me on a ‘Garden Safari’ to see what we could see.

This caterpillar caught his sharp eyes way before mine, eating its way through the leaves of the Alchemilla mollis. (Lady’s Mantle)

I am always amazed how sharp his eyes are given his peripheral blindness and virtually no sight in his right eye, but splashes of colour stand out to him and even the smallest splash attracts him.

We watched this caterpillar for a while, and then he took my camera to capture a picture.

I believe this is the Vapourer caterpillar (Orgyia antiqua) A moth and serious pest to street trees. I also understand that its hairs can be toxic, potentially causing irritation if touching the skin, so we leave it alone to go about its thing, and came inside to track it down in our books.

It’s a small thing, but it is an activity that encourages Marc outdoors and over the threshold. His world continues to be fraught with anxiety and the fear of the unknown. Little by little we are succeeding in opening his world to see more and importantly stimulating his mind. That stimulation in turn helps to calm some of those fears.

A little homebased adventure … and a smile :-))

Untitled …

When your child is unwell, your heart aches as you try all you can to take their pain and discomfort away from them. Much preferring to suffer yourself in their place.

            As a parent of a child born with special needs and disabilities, you feel like you have been smashed into a million pieces, not knowing where all those pieces have fallen so unable to put yourself together again.

            You and your spouse do all you can together to hold those millions of pieces in place, but the missing ones allow your spirit to drain away as if through a sieve and nothing can stop it until you unknowingly fall into despair.

            Nobody prepares you for the emotional damage being a parent and a carer will be in the years to come after your child is born and placed, helpless, into your arms. As each year passes and each year you get older and a little less able yourself, the demand on your emotions becomes greater.

            My solace comes from walking and working in the garden, but even with our child’s declining health and limited time to do so, that moment of peace has also been taken from me. The moments I do get to go outside, I see the garden dying as if to emphasise the situation we face. Box hedges stand bare as blight ravages the bushes, autumnal leaves fall to the ground like tears, and trees stand bare like skeletons.

            As I stand with all hope lost, I wonder how I will regain some resilience to deal with the ongoing demands. Those thoughts are interrupted by the alarm indicating my help is needed. I turn my back on the garden once again and return to the house to face the current trauma …

Persevere …

Deep in his eyes, I can see the rumbling of demonic rage brewing. He is once again lost to the effects of medication. Anti-epileptic medication. He is drug-resistant, but these drugs are all we have. His health deterioration has been speedy compared to the previous years. “We need to try something,” his consultants say. And so, we do.

A new medication that serves to sedate him in the hope that being more vegetative, he will not have quite so many or severe seizures. The impact is more immediate on his neurodivergent mind as he tries to deal with that sedated feeling. He is confused, anxious and ultimately frightened by not feeling the way he would normally. He tries to fight it. He tries to understand what we are explaining to him. He fails. Basic instinct kicks in and the once-managed rage resurfaces with such ferocity I struggle to contain it.

Such violent verbal attacks, confused feelings, and his mind in turmoil. Treatments for epilepsy can impact so negatively on the characteristics of autism. His consultant urges us to persevere for a while longer, we need to understand if this additional medication eases his uncontrolled seizures. I pray that I have the strength and resilience to continue and support him. His anger is not his fault. His condition is not his fault. It is hard for him. Every day it is hard for him just to get through it. I once again need to learn how to walk on eggshells and not to take personally the attacks I receive.

We will come through this, I know we will, but supporting a person with such additional needs is hard …

Make it stop! …

The days plans come to an abrupt halt. That guttural moan we have come to recognise with an oncoming seizure screams out. Our son is gripped by another seizure, his second today. The first, awakening him from his sleep and now, contorted into terrible shapes alongside me. I fear his neck may break as his head is swung so far over his shoulder. I cradle him, ignoring the flaying arms and legs that hit me.

This was developing into a bad fit. I gradually lift him off the couch and lower him onto the floor putting him in the recovery position, checking his mouth is clear and having my fingers bitten in the process. As he lays there shaking violently, I lay with him, trying to bring him comfort and talking to him all the time.

I count seven minutes before he shows any signs of relaxing. Eventually he looks at me with eyes so bloodshot they look like they are bleeding. He doesn’t see me even though he is looking but he says, in a strangely coherent string of words, “I can’t do this anymore. Make it stop”. I know not what else to do, but to be there and protect him, and to comfort him.

Sometimes there is nothing else to do, but to pray. I pray that our Lord would take something of me and allow our son to be free from this endless nightmare he suffers …

It takes three hours for him to become relaxed again. It will take the rest of the day, maybe longer for him to return to how he was before todays seizures. I fear that before he fully recovers, as is frequently the case, he will succumb to more, and the cycle starts again …

I often read from other Epilepsy support groups, ‘You are a Warrior’ ‘Do not let Epilepsy define you’ ‘Live your life, not that which Epilepsy dictates’ … All well-meaning words and sentiments, but our son suffers so much, so frequently and no matter how much we do not want him to be defined by this condition, we do have to consider its impact first, and then live in whatever time is left.

Old Fashioned Songs …

“Sing me, sing me an old fashioned song
Bring me, back in my mind, to a time where my memories all come from” …
(Billie Jo Spears)

I have never learned to play the guitar or banjo properly, but our son does enjoy it when I ‘strum’ the odd chord.

Billie Jo Spears sang this song which has become one of our favourites and the first lines are so relevant.

The beat and rhythm of the song captivate our son’s attention and when he is having a bad period of sensory or cognitive overload and meltdown, quietly introducing this song allows his sense of rhythm to gradually calm those extreme random terrors of confusion.

As Billie Jo sings (or even when I try it) the song does serve to pull out those memories of better times from the deepest darkness of his mind.

Our music, flowers from our garden, memories of magical moments – including the horse that bit me (a whole new story!) all serve as well if not better than any medicines.

Have a great day everyone :-))

Without Title …

The portable alarm that I always carry with me in the garden started sounding. The paving flag that I was carrying at that moment as I work on our son’s Garden project, slipped from my hands as I was startled by the alarm. It fell scraping the skin off my shin and caused excruciating pain. My wife was indoors with our son, but something had happened.

Racing indoors, I find our son on the floor contorted into terrible positions as my wife is trying her best to comfort him.

Quickly discarding my gardening boots, I rush over to them. This was the fourth Tonic Clonic seizure our son was having already this morning. He had had at least three each day on the previous, I forget how many days.

There was a difference on this morning. The count had already passed three minutes, four minutes, five minutes, now we were passing six minutes. Our son is not breathing. His body twisted so tightly. Unresponsive, but I can feel his heart beating so rapidly in his chest. I have the syringes with recovery medicine in my hand. Seven minutes. I try to prise open his mouth ready to administer the medicine. His jaws locked vice like. He begins shaking violently. He is coming around. My prayers are answered once again. It takes a long time before his trembling body relaxes, but once again, it does. Returning the recovery medicine to its storage place, I cradle and comfort our son for a long time.

I don’t know where I got my strength from, but I carried him outdoors and into the garden. He enjoys the fragrance and colours of the flowers. As I hold him, his face turns blank and eyes glaze over as another seizure is starting. “Can’t you make it stop?” he says quietly to me. A breeze blew and petals of the iceberg rose fluttered over us. “It’s snowing” he says as his eyes begin to regain focus. I am certain an angel walked past us at that moment.

His awareness is returning. He looks around him as if to ascertain where he is. He looks down at my leg “You have jam on” he says as he sees my scraped shin, still bleeding down my leg. – Don’t garden in short pants!

Our is suffering from four types of seizure now. I think back a few years when he would have one attack over a two or three week period. Now, we cannot leave him alone for a minute as they strike without warning and multiple times a day.

I share this story as I know many of you have taken Marc into your hearts, but also it is a diary, a journal that I often look back on to reaffirm memories of those better times as well as the bad times. Memories which may, one day, be all I have …

As a postscript, this story is from a couple of days ago. Our son is again calmer, and although the seizures persist, he’s ok

With trepidation …

… I reach for the door handle of our sons room. The chill of the metal handle send shivers down my spine. Each morning is the same. This morning followed a night through which our son spent most of it convulsing. He fell into a restful sleep only a couple of hours earlier and I prayed he would continue to rest easy.

Pushing the door open I listened for any sound from within. The door brushed over the bedroom carpet. No other sound. The room slowly revealed itself. Our sons chest of drawers, on top sat his television, drawers full of CD’s and DVD’s. Then I saw the chair that I had spent most of the night at our sons side. Our sons bed, comes into view and his seemingly small contorted body, still, ever so still.

As with each morning, I’m looking for movement or sounds that reassure me that SUDEP has not taken him. Nothing. I move closer, his body is rigid from the seizure he is having. He holds his breath. Motionless. His head twisted in an impossible angle. Kneeling at the side of his bed I reach out and cradle him. His motionless form begins to tremble in my arms. I speak softly to him and resist the need to scream out myself. Trembling turns into more violent jerking. He lets out a long breath and gasps for air ….

The soiling does not matter, the bruising from uncontrolled thrashing does not matter, what matters is the gradual recovery and keeping him safe as he returns to us.

The deathly white complexion starts to give way to a flusher look, his eyes, lost somewhere out of sight, slowly drop back into view. Bloodshot and as yet unseeing. Now panting for breath the jerking subsides, then trembles, then still. His heart beating at an incredible pace.

Epilepsy is often controlled through medication. Sadly around 30% of those with Epilepsy are resistant to medication and struggle as our son does.

We fear each morning as we check on him. His seizures are now occurring daily and several times a day. Moments of relief allow us to motivate him as best we can, though his pain and his terror impact him greatly.

When the pain eases I try and get our son to pick up a camera or simple to sit outdoors in the garden and enjoy the embrace that nature can offer him. We do less than many, but we do what we can.