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

A letter to my daughter

My darling, my little boo boo. I have so many things I want to tell you. I have loved you from the minute I knew you existed. I remember every kick and time I heard your heart inside my tummy. I was so so happy I had you there safe . I am your Mammy bear. I am the one who is here silently battling to make people listen to me for you and cheering you on so you can be the yourself and get chances just like everyone else.

That’s what I want for you. Just to be yourself. You are so beautiful, kind , fun , courageous and brave. I’m so so proud of all you have overcame in your 11 years already. You have pushed through more than most adults I know because you are STRONG, my little love. You have the power and resilience inside you to take on whatever the world throws your way and I’ll be right here still cheering, hugging and beaming with pride . We are a team baby and we have an even bigger team who will break down any barriers that gets in your way behind us.

You are YOU. Your core is who you are ,that’s your base, your centre, LISTEN to it. It will not send you wrong. TRUST baby, trust in people , trust what’s happening for you there will be a lesson or a reason for it happening.

It won’t even be easy but honey it will be worth it. Worth hard times, worth tears, worth being scared and grab those moments and go for it. Don’t ever let your mind hold you back. Tell it to STOP, say NO, count backwards from 5 and shoot for the moon. Just do it. If it makes you happy. NOONE is as important as you. Grab those moments of happiness and utter joy and HOLD ON tight to them , store them up for the bad days. IT WILL PASS, it always does my love and when it does lean on your team and lean into that. There’s a reason for it all.

Fall in love, find people who will dance and sing with you until your heart is full and content and laugh hard and loud until you snort and have tears streaming and a stitch. And keep those people in your life, they are what is good for your soul . That’s my wish for you. Do the things you love for you and do them often.You DESERVE it.

You are my centre a part of my being and the reason why I was put on this earth. We shared our core for a time and I’m so so glad you chose me . I love you so so much my little baba and NOTHING WILL EVER CHANGE THAT. 🌞🌛✨

UNKNOWN

Our journey continues , moments of pure happiness that makes us smile laugh and wonder is this diagnosis even true and moments of pure heartbreaking desperation that stops me in my tracks and floors me both literally and metaphorically .

I have blog about our journey through diagnosis and seeking help and supports for my daughter and as much as I am proud to say I see some real progress in some areas. Other areas are much the same emotional and behaviour wise. The violence and verbal assaults are back with a bang. I’ve learned not to try spend too much time trying to find triggers as there often isn’t one .

We have had a private diagnosis this year and had to got through the public system here in Ireland called CAMHS ( child and adult mental health services). Which to date I personally have not found helpful. I’ve decided to try explain through a little ditty and really to try get my heartbreak and upset out so I can carry on and remain as strong as I can for her.

JOURNEY

This is for me to look back at in years,

about our life with ADHD through laughter and tears .

The confusion, the assessments, the meetings and reports,

the mix of professionals who I had hoped would share a common cohort.

D day said diagnosis

is combined ADHD.

But now you’ll need to go public

for help don’t you see.

Armed with report

I did the next step.

Got our public referral,

then sat and wept.

Why had this happened

had I missed the signs all along.

Was it my fault,

where had I gone wrong.

Was it her birth,

she arrived fast and quick.

Or was it the time

she passed out when she was sick.

The Questions and doubts

fly round my brain

like a roundabout hosting a lightening fast train.

I MUST REMAIN Calm
I MUST REMAIN Strong

She needs me even more now ,I can’t get this wrong!!..

I reach for support in familar places and new

see angst and pity on their faces,

but I cant seem to get through.

I held out in hope ,this new professional will try

and wait in worry as 6 more months go by.

Behaviors are bad, Violence is here.

NVR training and patience and try make it safe here.

Then comes the call,

I’ve prayed I would hear,

someone who can help ,

and guide us back to a path ,more clear.

But wait he thinks the reports wrong,

Theres no ADHD.

She just a bit of a brat don’t you see.

Do you eat breakfast,

Use your phone in bed?

Do you take exercise?

I couldnt believe what was being said.

I tried to be clear, maintain my compusure .

I didn’t agree and was glad when it was over.

Treat the anxiety and

Tell her No.

Heres some drugs and

now you may go!

I left in a daze,

shocked, worried and upset.

How could he say that

He hadn’t taken time to even meet her yet.

She is my daughter, deserves so much more,

which is the right path and what will it have in store.

I’m gathering my courage,

pulling from my tribe so dear.

I know this is unacceptable and

I must take a stand here.

Back to the start

after all we had done.

We need another private opinion and

through my research,

Ive know just the one.

The wait starts again,

this familiar limbo land calls loud.

But I cant accept this and not because im too proud.

ADHD is the root,

Where we need to treat is part of the brain,

We deal with it daily and

see how it effects her and causes emotional pain.

This is a short sum up of our journey to date, my hope for you is your path is an easier one to take…

X

Geraldine