Friday, March 23, 2018

House adaptation

Remember when you first started your autism journey

I do, we where both working and had money and savings
We moved as preteen was being DX so we had a better quality of life, lower mortgage, slower pace of life yada
Better schools and services, and that's exactly what we got

But, there is always a but isn't there

Our savings just went, we paid out on private therapies, aba, assessments, counselling for teen, we autism proofed our house,  childcare, inhome support, we concreted our entire garden as it was just a swamp,
Concreted a trampoline into the ground, separated our sitting room into two rooms as was too biig and used one as a therapy room,  floored our attic,
Bought big sheds, and had one kitted out as a huge play house
The money just disappeared
Then we upgraded our car to allow for heavy milage and durability to long distance schools and hospitals
Some a 3 hr drive away
The savings just vanished, I was a carer on low money but husband was working a great job so it was ok still
We where comfortable, no savings left but good wages

Autism bleeds you dry, every penny goes into autism some where

Then the twins came along, which was perfect
We where so happy and had the room or so we thought yikes, little did we know

So things got complicated, very complicated, ohoh the twins are not developing as they should or reaching milestones, and then final confirmation
The twins have autism and intellectual disability
Heart ache, utter devastation
You have no idea how sad this time was for us and how our lives where shattered once more

An even bigger blow hit, my husband had to leave work, life got chaotic and we could no longer maintain a parent at work and one coping at home we needed the two of us home
This was a blow like no other
Financially, emotionally, physically and mentally

So we eventually got a rhythm and made our peace with things
But the house even tho a 4 bedroom house was just simply too small
The small therapy room was turned into a bedroom for preteen,  the twins went  into his room, at first travel cots worked as a means of safety but then they learned to climb.  Then we devided the room with a fence type thing,  yea they climbed that too and made it more difficult to shift a gastric bug as they where so on top of each other

My girl used to sit on her brothers head in the middle of the night and jump on it, it was so dangerous, then other times he would climb into her and pull her hair OUT and bite her, it was a nightmare

My social worker handed me the forms for the grant and basically said were doing this, I was like no way they gonna grant me that, I'm so glad she made me apply , we had a fight to get a bigger adaptation than allowed and we won.
We had an amazing TD, his staff, the support of everyone involved with my kids and a very understanding co council
We also fundraised to kit it out with sensory and of equipment and took out huge loans to finish it

We cannot believe the difference this made to our lives, we installed security cameras in all the auties bedrooms and therapy rooms, we have spare sets of eyes now lol 

The space in the house is just fantastic, they are so happy to be free of each other and we've had less hospital dashes with my 6 hear old as can quarantine the gastric bugs and viral infections much better

Everyone has breathing space now and they really can regulate themselves better thanks to the therapy rooms

I would advise anyone in really big need to apply for an adaptation grant but i would also warn it is hugely expensive  as you need to pay architect and engineer for plans and kit it out
That's the very expensive part
But worth it

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