I want to talk about shame and I don’t mean the shame I have spoken about previously in which we blamed ourselves or where we weren’t willing to admit anything was wrong. The kind of shame I want to talk about today is the type others try to inflict upon you for the decisions you make.
And in what I can only describe as in true Cersei Lannister style I am not sorry!
When you open yourself up like we have you kind of expect everyone to have an opinion and believe me the internet isn’t full of sunshine and roses. Its a place were someone can remain annonymous, write hurtful things and suffer no reprecussions.
Our first instance was within three months of setting up the blog, we had no social pages other than our personal ones in which we shared the blog to our friends and family, we were never the type of people to add strangers on our accounts. Within those months things went really well and we gained a few followers, a few subscribes and it felt like we made difference by sharing our story. It was maybe December/January time when I recieved a message. ‘nobody cares’ ‘Maybe you arent trying hard enough to teach him’ ‘you feel guilty coz it id your fault’ (actually spelt coz, are we 12 and limited to characters again?)
By this time we had grown stronger in our acceptance and I deleted it and haven’t given it a seconds thought until now but could you imagine if that was to someone more fragile than us? Someone looking for reassurance or hell even guidance!
Fast forward to May and the wonderful Beth (Check her out here) designed a logo for our blog and our newly established social media pages. A lady commented to tell me about my use of the puzzle piece and how it is a hate symbol for autistic people. I appreciated being educated but I also felt like I was being told off. Like I was doing wrong so far into our journey and I should know better. The puzzle piece implies that they don’t fit in, that there is something missing or that they are a puzzle to be solved. Due to the juvenile type of picture commonly used it can also lead people to believe it is something that only effects children. Like its a bad haircut they grow out of.
I absolutely love the puzzle piece symbols which is why it was incorporated into our logo, I see it as a beacon of hope for William. He is a piece of this world that fits perfectly but we just need to find the right place for him. Its not about changing him but how the world sees people like him. To try and make it a better place not only for our autistic children to grow up into but for all children and that message I can imagine is very important to a lot of people.
The infinity symbol is supposed to represent math and a love of numbers, something shared by many people on the autism spectrum (I do think this statement is a massive sweeping generalisation) but not all, so far William has no association with math of any kind so to me this one isn’t as personal to us as the puzzle piece. It is also used signify inclusiveness and the integration of people with autism into general society, since there is no beginning or end to the sign. I just don’t feel anything towards it like I do the puzzle piece. I look at it and think of tattoos loads of people in their 20s and 30s now regret (mines a tramp stamp 🤣)but I don’t look at it and feel hope, I feel nothing.
And now I bring us to present day….
As a family we have always been open and honest which is why it hit us hard when we struggled to open up about William’s difficulties because it was so unlike us. There are pictures and stories about me online that I have no shame in sharing and same goes for David. I have always been willing to share my dark days, my good days and days in which I’m just an absolute airhead and say or do something that is just inconceivable for someone of my age and education.
for example here is me in a pair of pyjamas (which at the time I felt were wholly acceptable as an adult) trying to frighten Dave by being a bear 🐻 GRRR
I love and hate twitter with equal measure. I shared an anecdote about how our little boy laughs uncontrollably if you tell him to stop touching his diddle, this was accompanied with a beautiful little gif (check it out on our Facebook page here) Twitter always opens up the floor for trolls and/or unsolicited advice and 2 men decided to tell me that I should not post these kinds of things because I would damage him when he is older, because facial recognition is soo good now that he will be identified putting a risk to any future employment… Let me tell you something, there are pictures of my passed out drunk in a field at 14 years old and I still have a good job. There are pictures of Dave in drag (as a work event for one of his Saturday jobs?) and he too has a very good job. When William is able, I expect him to take over our pages and continue to share stories of his life just like we have our own for years with Piczo sites, Myspace, Beebo, Facebook, Twitter, Instagram and many others that have been and gone.
I want him to continue to tell the world and show them how he has grown and how he navigates life, the good and the bad. Funny anecdotes a plenty! If he decides he doesn’t want to or wants it deleted then I am happy with that too.
Remember when I last posted about the ‘temporary’ suspension to EHCP’s? Remember how I worried that it wouldn’t temporary?
I hate to say I told you so but the suspension has now been extended further until 30th June… This could be extended even further closer to the time.
In case you are unaware an EHCP is an Education, Health & Care Plan which is a legally binding document that is written by the Local Authority (with parental and other professionals help) regarding a child’s additional educational and care needs. The plan outlines the type of support or intervention that the child will receive to ensure that their needs are being met.
Due to the coronavirus pandemic I did understand why this had been placed on hold due to the changes which schools were facing in regards to social distancing and how many staff and pupils in a room etc however June 1st is the day they have been pushing for kids to go back to school but with the latest announcement it seems they didn’t mean all kids, they didn’t mean the kids that need additional support.
“Make no mistake, I want the UK to be the best place in the world to educate your child and make the most of people’s talents.
Gavin Williamson, Education Secretary
This was taken from a speech Mr Williamson gave about his plans for post-Brexit education. He focus on improving technical education and welcoming international students, what Gavin missed out in his little speech was education for the already under funded and overlooked SEN children.
The new announcement is disappointing but not surprising.
Instead of Mr Williams sharing any of this to his twitter account instead he shared this…
‘Hello NSPCC? I would like to reportcountrywide neglect of those with special educational needs.’
I suppose we will have to wait until the end of June to see if this suspension of pivotal EHCPs is lifted, I for one will not be holding my breath.