My good friend Angela, who is my 'co' in co-chair at Family Voice Surrey, always has an air of unflappability. I'm not quite sure how she does it.
As well as being the parent of two sons with ASD, she is studying to be a psychologist. Angela's younger son, Monty, is a delightful boy who attends a special school. But his ASD means that, like other children with autism, he has a schedule and a sense of reasoning all of his own that can be exhausting.
Here, Angela writes for SNJ about a morning with Monty.
***
In the distance I can hear screaming. It sounds terrifying and it’s coming closer.
I struggle to work out where it is coming from. I awake slowly, suddenly light fills the room and the source of the screaming is here, in my bedroom. It’s my 8 year old son Monty.
Groggy from sleep, I try to calm my son who by now is totally hysterical. “Take me to East Surrey Hospital!” is as much as I can work out in between his sobs. I try to cuddle him and offer words of comfort to no avail; I have to let him get over this alone and that hurts. I check the time. 4.25 am.
Eventually, when he is calmer and can speak, it becomes apparent, through interpretation, that he has had a night terror about wobbly teeth, Monty is petrified about loose teeth and when he has one will often not eat solids for weeks at a time, So Monty’s request to me in the early hours of the morning is simple; take him to East Surrey hospital where he can see the dentist and have all of his teeth removed.
Our day has begun! The following two hours are spent trying to help Monty understand that he needs to keep his teeth but it is an impossible task. Anxiety prevents the information from being absorbed and what would normally be a reasonably easy explanation becomes a frantic search for information to demonstrate to Monty in pictures why he needs to keep his teeth.
As with many ASD children, Monty becomes very fixated with certain items, objects or scenarios. Most of the fixations are anxiety driven and the need for sameness. These are not necessarily the same things but the outcome is often very similar, a huge inconsolable meltdown.
Take for instance after Christmas, the holiday advertisements begin. The ones showing sunny countries abroad are seldom a problem, however the ‘short break at Center Parcs’ is. Monty absolutely loves Center Parcs (we’ve been a few times and had a fab time on every visit) and when he sees the advert he wants to go back...NOW! Even pre-empting this is difficult (we use visual prompts where and when possible) as his learning disability (in addition to the autism) often makes the retention of any information practically impossible.
So again I watch helplessly as for the duration of the advert and often for a period of time afterwards, Monty will be completely distraught, wailing and hitting himself or trying to pull his hair out. I have to be strong! I use a very low but calm voice and tell him it’s OK, I repeat this over and over, even when he vents his anger on me. Eventually we get there and I vow that we will only watch programmes on BBC in future...
It’s now 06.30 and I have been up for two hours, feeling a little tetchy, regularly batting of the barrage of questions that come my way, anything from, “Are those clouds cumulus nimbus outside?” (twenty or so times) to a lengthy question and answer session on electricity and where it comes from etc etc etc.
It is now I offer Monty breakfast and realise what a mistake I have made, we are instantly transported back to the night terror and removal of his teeth....Damn, How could I have forgotten that? I calm the situation by finding a pre-recorded episode of Max and Ruby, an all time favourite programme of Monty’s about two little rabbits having a variety of adventures. I snuggle up on the sofa with Monty, duvet over us both, tea and hot chocolate to hand and watch a few episodes. All is calm. It’s now 7.30 so I decide to sneak off and do a few chores whilst waiting for the expected load of snow to drop. Dishwasher and bins emptied, washing folded I think I’ll chance it and have a sneaky look at Facebook.
Two minutes in and I am so engrossed I forget to fast forward to the next episode and before I know it there’s an advert for Alton Towers short breaks.....Here we go again, did I forget to mention that another ‘specialist interest’ of Monty’s is theme parks? Ho hum!! And it’s only 8.15am..
Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.
- WEBINAR RECORDING: Will the SEND Improvement Plan fix provision for disabled children and young people? - March 16, 2023
- Can you legislate for love? The Government’s plans for children’s social care aims to - February 3, 2023
- Don’t make it harder to get EHCPs warns Equality and Human Rights Commission as DfE considers “raising the bar” - January 26, 2023
Reblogged this on multicolouredsmartypants and commented:
Great post!
Prince’s obsessions are not the same, but other than that it’s like reading about the same boy – endearing and exhausting all at once 🙂
Thanks for reblogging!