Help and advice needed

Hi everyone I’ve only just joined. I have been diagnosed with autism at the age of 39 but so have my children aged 4 and 2. I have just moved into the Medway area and need some help or advice on getting a education health care plan in place for my children as they struggle with autism, sensory issues and my son has infiante scoliosis. My wife and I feel they would extremely struggle at a main stream school as they need 24 hour supervision. They are at completely different ends of the spectrum with my daughter struggle with overwhelming meltdowns and sensory issues and my son won’t let anyone apart from me comfort him when he is hurt or distressed not even his mother, aswell as eating issues and having no sense of danger it’s a big concern for us and want to make sure they have the best possible care while receiving the education and support they need. Thank you.

  • There are thoughts in science that the autistic brain is more naturally intuitive. For instance, your son may prefer you because he identifies with your sex and probably in a myriad of emotional and psychological ways he is too young to actually recognise or understand. It sounds like a few minor adjustments in perspective could easily do the trick for your home life (I don't know about school, but others here may).

    Prioritising what is of major consequence and what is not. My grandmother really helped me with this. I believe it's her genetics which were autistic & she was just SO wise. She never made a fuss about anything except if you went running into the street or too close to the stove or there was a possibility of death/hospitalisation involved in the consequence. This had a profound impact in working out what was dangerous and what wasn't. My mother, on the other hand was seemingly a bit out of control with her emotions and so we never knew with her if we would misstep. But at my grandmothers house (my fathers mother), a woman who often used the biblical phrase "everything is permissible but not everything is beneficial", it was clear where that line was and really, most things weren't dangerous. Also, my grandparents defended one another, and the would not allow for cruelty or a lack of respect (which can impact ones safety in social life), which was rare (usually children respond this way out of hurt and they could always tell the difference). They were always open to reasoning with us and never took offence << that's a big one and I think they were just peacefully confident with what their role/responsibilities were.

    So, I've always afforded my son his quirks or nuances. As a mum, if I would've been in that position and my son hurt his knee and dad wasn't about, I might reinforce that it's OK to just want dad AND what can I do to help right now. I've personally been working on using the word And instead of But. It can change everyones perspective to help recognise that things are a little more grey than b&w and it's not the end of the world, just another part of the journey :) 

    However, I might suggest (if you haven't already) starting with sensory issues. Turn your home into a "safe space" (think: plant nursery, greenhouse, animal sanctuary). What do they need to thrive? And this will usually come down to what is human-friendly and natural. 

    I really like this blog: https://autcollab.org/2020/04/30/autism-the-cultural-immune-system-of-human-societies/?fbclid=IwAR37xumHkRga0hADICA80wxaWycn7_Kr9Oc6uZhcs2zJ0QzamXOI4qwU2bQ It expresses quite well our neuro-design and makes sense of it. I once heard a neurobiologist say “All Senses are Tools for Calculation”. And when thinking of pre-historic eco-spaces for humans, this makes sense. We need these tools to identify what is safe and what to be mindful or even fearful of (volcanoes in neighbouring islands, bears, seasonal changes) so we can prepare properly. Senses are meant to identify matters of safety. When they're not being overloaded biologically or psychologically, our emotional state is in a state it can thrive and learn and grow. 

    Here's my list to help with sensory overload at home: 

    Textile: All clothes are 100% natural fibres: wool, cotton, silk or tree based fabric. If a blend, it's a nano-percent. 

    Polyester is a bi-product of petroleum which is basically plastic. In a fire, it would melt to the skin and turn to plastic. Human skin cannot breathe in polyesters, so instead of keeping us warm, it causes us to sweat and does not allow for the body to regulate temperature properly.

    Cleaning products: Detergents, soaps, countertop sprays and liquids are all either Unscented like EcoverZero or like Dr. Bronner’s, have natural essential oils. You might occasionally use bleach (which you’d use away from kids anyway) and maybe dishwasher tables which can dry in the dishwasher, blocked from breathing in the scents. 

    All candles are beeswax or soy (not petroleum based) with pure essential oils & rarely used. No plug-ins or incense. Bicarbonate of Soda and activated charcoal are second best to cleaning for removing unwanted smells.

    Lightbulbs! Buy mostly halogen/energy saving halogen, note that lamps and fixtures need to be build FOR halogen as LED works on a different electrical set. Saving maybe a Salt lamp with an LED because the salt breaks up the light properly. And maybe LED for safety. Get a Light Awareness card: https://lightaware.org It is legal for individuals with light sensitivity to buy these and use them. LEDs are proven to damage the retinas in infants, they deplete rare earth minerals and do not have the full spectrum of light like filament based bulbs which mirror the sun. They contain too much UV and no IR. The human eye uses infrared (IR) to see with contrast. For every one halogen on, one might feel they need to keep turning on LEDs for feeling like they just can't see properly, because they can't. 

    Sound: Ensure there’s no ongoing stream of noise/drones around the house. Things aren’t buzzing as the socket is turned off when not in use. Maybe there’s outside traffic, and bird chatter, and that’s more noisy than anything inside. Birdsong is amazing IMO :) 

    Visual: Clutter!  Maybe take more liberty with allowing space? Visually simplistic/minimalistic walls. Maybe fun colours, but minimising this can help. There is something to be said for very simple walls and a mess of lego bricks. But not also a disaster of a play room. As a mother, my mind is racing like how to manage! Ideals are great, we can't be everything and perhaps just once a week being methodical about everyone working together to put things back in their place is enough.