Ever had one of those parenting moments where your actions have directly resulted in your child getting hurt, or more hurt?

Well we had a doozy example of this not long ago.

What had started out as a parenting win…. getting a child to take further ownership of his pets. In this case his fish, he has many pets, quickly turned into a flurry of parental errors, Autistic moments and just plain old bad luck.

one of my sons was cleaning the glass fish tank lid whilst I was cleaning the tank. Something we have been doing for a while. When I asked him to pass me an item the other side of the glass lid. He stepped over the lids and managed to catch his ankle on the side of the lid and starts hopping around like a mad hatter. I having my back turned this whole time with my arms deep in the tank, not knowing he is hurt, am growling at him afraid that he’s going to break something or land on the glass. Whilst growling I risk a glance over my shoulder to see what the commotion is about, too see him hopping whilst holding his ankle. I then am saying something along the lines on well if your hopping around like that it can’t be too bad, take your hand off and let me have a look…meanwhile my arms are still draped over the tank dripping… He takes his hand of to reveal a significant gash that definitely requires stitches!

Doh…. ok…. my arms and hands are full of fish poop and algae so I am hollering for my husband and telling my son to ‘put your hand back on it and sit down’….but all he can think of now is dirt, blood to him is dirty no matter who’s it is….. so there is absolutely no way he is going to put his hand back on it…. thankfully the bathroom is less then 5 meters away and my husband reaches us and immeadiatly scoops him up and takes him into the bathroom placing him on the bathroom bench….. we both are relatively calmly talking to our son saying it is going to be ok but it looks like we will need to take you to the doc to get it cleaned out and fixed…… running through what step we are going to take… as parents of children with Autism we are trying to lay out the next hour or so in sequence to help him through this unexpected event ……we need to wrap it up, whist dad does that mum is going to get a bag ready to go…etc…

Our son is nodding and seems ok with this so I turn around to wash my hands. At the same time my husband has bent down to get a bandage out of a draw under the bench that our son is sitting on. At which point my son promptly faints falling forward off the counter over the top of my husband and head first into the bathroom tiles. I, hearing the most sickening thump look towards the last place a saw him on top of the bathroom bench and meet my husbands horrified expression in the mirror as we both in slow mo turn to see our beloved boy crumpled out cold on the bathroom floor…..

Ahhhhh……… now what….. thankfully we have both taken many a first aid course and unfortunately both have some experience with unconscious and fitting people…. I get him into the rovery position just as he starts the jerking of coming around and my husband is wrapping his ankle…..

My husband sits with him calmly talking to him as he comes around whilst I am madly packing a bag full of paraphernalia for me (think tube feeds, pumps, purse, chargers etc…) and our son (think headphones, tablet, charger, weighted lap blanket) and can hear our son asking why we turned out the light and made him fall with my husband chuckling trying to explain to him that we didn’t turn out the lights and we didn’t make him fall but that he fainted…. a concept that completely alludes him….

By the time (5 minutes) that I heave got everything ready for our trip to ED there is a sizeable egg on his head and a very glazed look to his eyes….. now the head injury might just be the priority not the gashed ankle *face palm*….

I was certainly not successful in trying to tell the triage nurse why we were there with a straight face! He did end up with a mild concussion, the biggest egg head I have ever seen and several stitches. The staff at ED were wonderful and very patient and at our request explained everything in detail to him, and that at my insistence that the needle was going to be a scratch, sting and burn but that then he wouldn’t feel anything, that he was welcome to watch or to distract himself with a screen….and amazed at how he coped with all the information and at how once he knew what was going to happen, in what order, by whom, and what he could do he was totally fine just sat there and coached them through the next step!!! He even wanted to put on the last of the Sterri-strips.

Lessons learned –

Don’t step over glass….

Don’t place an injured child on a bench top and then not be there to catch….

Explaining to Drs that they need to explain everything in detail is complicated because they like most people want to protect children…… but that getting a Dr that will is like gold to a family dealing with Autism….

Parents with feeding tubes are a novelty in children’s ED…..

That children really don’t understand fainting and will still insist that we turned out the lights and made him fall…….

All parents should take first aid…..

No matter what you do you cant always protect them and that sometimes you will hurt them….

And by golly eggs on the head can get HUGE!!!!!!

But also when have I blamed someone for turning out the lights and causing me to fall…… have I taken ownership of my own fall? Have I accepted that it was just an accident and that no one not even me was to blame… it just was…

Sometime ago I had a night of absolute physical brokenness. I had been suffering for a few days with a mild bowel obstruction, and was conservatively managing it at home. Well lets just say it resolved….

It resolved in spectacular style, the mounting pressure ‘snapped’ an internal adhesion creating an audible pop from deep within, my husband heard it in the next room over, and resulted in a mass exodus of the offending material. However this ‘pop’ was accompanied by enough pain that I promptly passed out, in a pool of my own relief……. tmi I know……. but where is God’s grace in my brokenness on that soiled floor.

Yes God, and God’s grace is in the people coming to my aid, in the humanity of helping one another. But God’s grace is so much more than that. It’s in the ability to accept that help with humility and grace, to treat those coming to my aid with respect and dignity, its in my own being. It’s in the comfort of knowing that he is with me and is suffering with me in that very moment. It’s in my security in the comfort that it is but a moment. It’s in my choice of attitude and my choice of perception. Yes I have moments of self pitying and at times I am definitely not gracious nor accepting of the offered help, just ask my husband (that man is a gift from God, an example of God’s grace given to me).

Gods grace allows me, and affords me the gift of not being consumed by these events, of not defining myself by my brokenness, of not in anyway being embarrassed or humiliated by it. Frustrated yes, scared yes, still physically broken/ill absolutely, but not devalued and never alone.

It’s in the ability to get up with the help that he has provided and continue on with life, to participate in work, to be a present parent, to be a contributing member of society. To live my life to the full, with what he has given me.

That is God’s grace in my brokenness on the floor.

What a wild ride parenthood is, the curve ball tonight was a complicated mix of Tourette’s, Autism and impulsivity………. with one son ticking “your shirt is gay” to which another son took great offence thinking this was directed at him. This quickly escalated into the typical boy outraged rampage ….. read punching, kicking and just all out brawling…….in the bathroom …..with a wet floor…. I am honestly surprised this didn’t result in a hospital trip……

Particularly when my youngest son (yes that’s 3sons, in 3 years) gets in between them in an attempt to stop them and gets promptly hurt.

My incredulously insulted son still angered from the perceived verbal attack, then sees his brothers prized new nike shoe, grabs one and dumps it in a tub of ‘car track mud play water’. I have no idea why or how this existed in the bathroom but nonetheless it provided the perfect opportunity for revenge.

My ticking son is in absolute righteous outrage that he has just been punched, kicked and then his new prized shoes which he has waited over a year for are now ruined and dirty in his words ‘vandalised’ for absolutely no reason. He is completely unaware that he has ‘ticked’ and that that is what started this whole chain of events…in his perception of events he was just randomly attacked.

My third is nervously chatting away about the time he got a broken nose and stitches in his forehead…. and why do his brothers do this….. in his perception his brothers are misbehaving and hurting him when all he was trying to do was help.

All hurt, all emotional and all perceive they were purposely attacked or hurt, that their brothers don’t care for them.

Whilst we parent them, guide them and implement all the strategies and therapies we can this whole scenario made me think…..what a powerful thing perception is….. what perceived hurts do I have….. when have I asked another what their perception of an event was before I drew conclusions…..how can I better see things for another perspective …..

All is right in their worlds again, they have been coached through their brothers perceptions of events, and made aware of alternative responses (another iteration of this will occur). The shoes have been cleaned and are now wareable though their owner will always remember and know the invisible dirt they carry.

What invisible dirt are you carrying….am I carrying?

What is EDS fatigue and how on earth do you treat or manage it?

EDS fatigue just like true fatigue is not ‘just’ feeling tired.

EDS fatigue for me primarily hits completely suddenly, as if someone just removed my batteries. In its early stages that presents with things like word recall issues, issues concentrating, issues with body temperature, worsening of walking ability, dizziness with position changes and progresses to heavy limbs, struggling with walking, swallowing issues, migraines, tachycardia, worsening chronic pain.

If I ignore the early signs or if I don’t manage it well then I can get the the stage where literally no-one is home and I need physical assistance with everyday tasks ie someone to help me in the shower, someone to hook up my feeds and even someone to physically put me to bed. At my worst I can’t put a coherent thought together to know what comes next in the sequence of getting dressed or going to bed. Thankfully I have a wonderful team around me and the few time I have got to this stage they have been a great support. They also help me to recognise when I am starting to get fatigued and encourage me to use my fatigue management tools. Because of their support it is rare for me to get to my ‘worst’ but the knowledge that that can happen easily weighs on me and my loved ones.

My fatigue management looks like;

Decreasing me sensory input, having ‘quite’ visual and auditory environments.

Using spikey/massage balls to increase blood flow and ‘wake up’ likewise using spiky Matt’s to lay on (also helps with chronic pain)

Exercise!! (Physio, Pilates, swimming)

Cold water shower or cold water face wash

Meditation

Utilising wheelchairs and other mobility devices.

Using ‘talk to text’ and my hearing aids (on their way).

Having assistance with housekeeping and daily tasks.

Keeping ‘on top’ of my conditions and pain.

Ultimately though these help manage and get through the work day or appointment or coffee date the only thing restorative is good quality sleep. And this is in short supply when you have chronic pain, feeding tube alarms, small bladder, bursitis etc etc….

So please don’t be surprised or sceptical of me if you see me in and out of wheelchairs or doing things one day but not the next….. it’s is not on a whim but rather in response to a rebelling body. Think of it as an energy management plan…. and if you do see me in a wheelchair or if I get to go out with you or if you see me out and about know that I chose to spend my energy on it, because I WANTED TO 😊.

#ehlersdanlos

For some other info see;