Hidden Disabilities! more like hidden services

November 2018 is a date which will forever be embedded in my brain.

The time in my life when I realized we would need a little more than patience, tenderness & love.

I am choosing for privacy not to name each Dept. and Agency to give my child privacy but its LONNNNNNGGGG. Every week I rang someone pleading for help for my child. Something is wrong. We have missed something.I don’t know what to do, who to call.

Fast forward *more meetings than President Putin has had to attend ( this part MAY be slightly exaggerated), consultations, begging phone calls to GP, emails, letters. Department after Department pushed from one to another. Ring this number ask for….they will help, ring such and such, that is their area not mine. Fill out this form, etc etc .You get the drift and its a replica of one I’ve filled out last month and was told the waitlist is 3/4 years. These forms are NOT straight forward, they require time and effort and concentration to fill and did I mention my child was exhibiting extremely violent behavior/ struck in flight/ flight/ freeze mode, not sleeping…much and school refusing at the time !

I am not a bad parent, I was successful in my job and my home is full of love and happiness, my children had all they wanted , wholly content until then, life really was great but now I needed to do a 360 , adapt and parent a child with multiple diagnosis and navigate and walk the path. But it would be fine, Ill have help, someone will tell me what to do, point me in the direction of someone who will help. It brings tears to my eyes writing this as it was like entering a war zone blindfolded daily with snipers ready to gun you down with one wrong move. My child, a female, has ASD & ADHD. Dual diagnosis, co morbidity and a platter of other letters now to add to her name.

Private assessments and consultations and a change of school has remedied this somewhat but at what cost. All the back and forth has cost us. It has cost my child 2 years plus of a childhood. Irreplaceable years. Financially and emotionally, we are spent. Hearts and bank accounts depleted. Learning, educating ourselves, introducing strategies, plans, supports, visual aids,low arousal techniques and forced choice.And these are only possible as we had financial means to get them. From our healthcare system we did take part in a programme that has been hugely beneficial to all of us but if you search for it , you won’t find it on any google search. Surprised I’m not. All supports are hidden because as far as I can see they are as thin on the ground as snow in South Africa.

So where are the services .. who will hold there hands up and offer help. Our countries services from my experience are stretched, workers are overworked , ratios I would be afraid to ask …

Why won’t you help us , our children? Are we not important. Why are these ridiculous policies, endless forms in place. Stop spending money on environmental projects and invest in your countries future humans . ( as I do fully support eco saving and being sensible but not before my child!) TBC

Clear transparent and flowing . Opposite of services

Spring spring spring

Spring brings hope ,springs brings birth ,new life, buds blossomed and bursts of sunshine. It’s a season we love here. Frog spawn hunting, forest trails and the budding flowers. I have always loved little ditty’s and felt I needed some hope and distraction.. And one of my guilty pleasures from 7 Brides for 7 Brothers

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Spring calves

Spring brings brightness and hope for cheer. the sun will start it’s shining and dry up our gardens dear.

The children will be laughing and playing out of doors and mothers will cut down on the household chores.

Time will be spent in the garden where memories will be made and Grandad will be out gardening with his trusty spade. Outdoor fun will be plentiful and vitamin D will get into our bones and Nana will supply us with her lovely scones.

We will visit baby lambs and stop have a look and head up to the Slaney where we hope to see a baby duck.

We will lie out in the hammock and look out for shapes in the cloud and tap ourselves on our back as we should be very proud.

We have made it through the winter, dark and dreary days throw in a dose of covid and a flood across the ways.

Hardships are what makes you, can knock you down or build you up but spring is on the horizon so take time to fill your cup.

Observe and listen and appreciate all the little parts , as these are the important things that will brighten up your heart.

An Oldie but lighthearted and lovely ❤️

Expectations

The following is definitely my experience and not scientifically proven but delving deep into what my expectations were of Autism, ASD are .It’s something that has whirled around in my rain as I travelled the road to acceptance and understanding of the ‘disorder’.

Splashed across sites & books are these signs and signals that may point to some red flags that may or may not indicate autism but what if it presents differently. Currently the DSMV ( part of diagnostic evaluation used) is based on males. Female Autism is way under diagnosed and often misdiagnosed as another ‘disorder’.

I have read before once you meet an autistic person you meet one as none are the same.Every Autistic person presents differently. Verbal, non verbal.’high functioning, low functioning’, ASD ‘unit’,but a person with a heart, soul, hopes, dreams, wishes, a person who wakes up every day trying and adapting their world to make it through each day. To feel they fit in, enjoy little moments and do things they love and dislike. This sounds like an every day for me and I bet a lot of others and I don’t ( as yet!) have a ‘disorder’.

These terms in ” do not sit well with me as in no way would I describe my daughter as having a disorder, being confused or not functioning. I am not in denial , I will accept the letters that float around and the strategies, extra planning, regimental routine , medications, therapies, resources, extra school help and changing how we word and deliver information to her BUT and its a big but she doesn’t not not function or is ill.

Photo credit to My Autistic Soul

Disorder is the dictionary translates to a state of confusion. 2022 and this word is linked to millions of people internationally. I far from think she is confused, a synonym made up by someone who without doubt doesn’t have autism because I doubt if asked any autistic person would describe themselves as confused. Confusing times are part of EVERYONES life this is where we find opportunites fro growth and personal progression.

Going back to acceptance. That in itself is an expectation we place on others. The ability to accept what is normal for us ASD parents and our families is at times a huge challenge for others to even comprehend never mind understand!

This is another expectation I suppose that we hope others educate themselves and if they are in a position to assist or help in some way they will. But so many of the before said books, sites etc are examples and not real life. What’s that line- if you want to know walk a mile in my shoes.

My wish is the true effects of life as a parent with undiagnosed autism are portrayed in a more realistic way and wonder why those meltdown moments or silent struggles aren’t spoken more of.I remember feeling so alone and uneducated and blind when we began and all I saw were these words and images portraying positive moments , how great little Mary or Johnny were doing with school or communication but the big gaps was how they got there. No one speaks of the slog behind the scenes of getting to these instagrammable moments. The time spent trying to wrack your brain coming up with a way to solve this difficulty, the amount of phone calls, research, professionals, webinars, books, chatting about and trial and error and consistency that it requires to implement certain things in life that other take for granted.

All the same plant but all different ❤️

Then there are people who will blast your expectations out of the water. A total stranger that will become part of your life and change it for the better and you will wonder how you lived without knowing them. A person who will provide visual boards, now and then boards, communication passports and they will be delivered to your door. They do this with heart and soul because in my opinion they have been that soldier sitting trying to make them for their home and want to make other parents lives easier. A person who will comer into your home and provide you with tools , knowledge and expertise and change your life.I salute these people, unsung heroes.

It’s all a learning game about expectations. To me it means to expect something . A behaviour, action, moral, belief, you have inherited or learned along the way. Some will match yours and others will be polar opposite. But that doesn’t make them any more or less of a person. Sometimes you have to look at the bigger picture of a person in your life and they may not meet every expectation you have but it’s like a jar of marbles. You add one for every good , kind, nice thing they do or have done with or for you. And just because they don’t meet all your expectations at once doesn’t mean you empty your jar you just take one out and focus on all the other shiny ones for the moment. For now I have hope in my heart that to lower those expectations and keeping the momentum will continue to help us along our journey.

HOPE.