THE BLOG

Mum's Life With Disabled Children - Sloppy Ramblings In Real Time

28/03/2017 17:22 BST | Updated 28/03/2017 17:22 BST

The last few days have been the hardest I think I have had for a long time. My brain feels like it's on auto pilot, it's on a non stop rollercoaster and I can't see the end. I am screaming on the inside while trying to look normal for my children, family and friends. So sorry but here is as good as it gets, my brain is fried, here are my ramblings.....

Why...

EHCP's, transition to high school, impending residential trip, family holidays, work, hospital appointments, general life...

As a parent of children with disabilities life is never quiet or simple or normal... there is no getting away from it. Watching my sisters, I envy them some days because everyday there is something else I need to remember, something else I need to do, to tell, write, ring, order, the list goes on and on. To have a bat shit crazy couple of days feeling like a legless Jelly Baby who hasn't a clue what they are doing is normal right? Life gets to us all so if you see me in the street with a bright red face, unbrushed hair, no makeup and looking like I walked off the page of a 70s catalogue it's because I am trying to be a mum, carer, advocate, researcher plus everything else. I go to sleep dreaming of the printer and what it's going to spew out next, I wake up to the face of my 10 year old daughter grinning at me before commencing with the first of many rude words, screams, shouts, tears or just plain crazy bouncing of the walls until the medication kicks in and she can calm down and concentrate on getting ready for school.

The life of any parent is filled with ups and downs...

It's no different for any parent, we all worry the same, we all do the best for our children the same way and we all have good and bad days - that's what I keep telling myself.

So why do I feel like I am losing the plot?

Well there is the EHCP for one thing, with so much conflicting information out there I feel inadequate in my role as a parent in best supporting my child. Anyone who knows what and EHCP I bet knows what I mean. For those of you unsure its the education, health and care plan which is for those aged 0-25 who have additional needs and is there to coordinate your child's educational, health and social needs and it also sets out any additional support that they may need. To me its a mind field, another obstacle which I have to try and hurdle over but with amazing people behind me and with the right knowledge I will go blindly forth and try and get my daughter the support that she needs to keep progressing and being able to live as normally as she can and be able to access everything there is to offer in this world.

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Leanne Brown

Then couple this with the impending transition to high school and I feel like a first timer when in fact this is my third child to go to high school. In reality I think I am unprepared mentally in the back of my mind we are not near that stage but in reality we are. This period in our lives has crept up on me so quickly that I haven't had time to process it never mind my daughter although after a positive look around the school she hasn't mentioned high school since. With my older two its all they talked about for months before starting year 7. Here in lies my biggest worry as I am unprepared and so is she and it also makes me realise that maybe some part of me has not fully been able to process that my daughter has special needs. Does that make me a bad parent, I don't think so its just I have tried to stay strong and keep things together and try and make life as normal as I can for my family when in fact I am scared that if I drop a thread our whole family existence will start to unravel like it did 4 years ago.

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Leanne Brown

Raising disabled children is a juggling act. There are so many balls that I am afraid to drop but I have managed to keep them all in the air so far but when there are balls added like high school, the EHCP, new appointments, referrals I am so worried that at some point I am going to drop something and as a parent thats what I have nightmares about.

So tip to myself.....look after myself, take a break, delegate, ask for help, have a massage

take care

x Leanne X