Summer 2017: Week 1

What a week; it’s been a rollercoaster ride!

Our eldest has been out of sorts this week, his sleep pattern has gone awry and he’s become overtired. He has ADHD alongside his autism and when overtired he just cannot stay still or relax enough to get the sleep he desperately needs. Unfortunately, these occassions, though rare, are when he can present with challenging behaviour and a 2 minute outburst, during which he hurt a staff member, has left one care provider hitting the panic button. Meanwhile we have to work extremely hard on very little sleep de-escalating and doing what needs to be done to get things back on track. Experience has shown us that a moderate amount of exercise, helping him to feed himself or adapting to finger foods (he becomes unable to concentrate to us a spoon like normal), plenty of car drives (difficult to move excessively when sat in the car) and avoiding being stuck indoors all day, which makes him very frustrated are what works best, but anyone than us is reluctant to head out into the community when he’s unsettled, so even if we do have some care for him we either have to sacrifice it to do the job ourselves or risk an incident which might jepardise a service.

Wednesday was both the day of the incident and the deadline for our LA to respond to the SEND tribunal regarding his appeal. Fantastic news they have agreed to fund another year at college! We still need to work on agreement over the EHC Plan content, but such a relief! 

Our youngest has had a pretty good week. She has struggled a bit with her brother’s noise and we are having to watch that she doesn’t aggravate him but overall she’s done well. She even coped with the car journey to school with just her dad on Thursday, which is a huge step given that her anxiety was so great at the start of the year she was refusing to let me out of her sight, school refusing and refusing to go in the car anywhere. 

Finally, this week I finished our letter of complaint to school, LA and CCG regarding how she and we were treated during a crisis period that started January 2016 and are still dealing with the consequences now. Always a bit nerve racking actually posting such letters, but it absolutely needed to be done so we’ll wait and see what happens next…..

Our NT daughter had a belated 18th Birthday get together with her friends this week when the “auties” were at respite. We were banished from the house, so took ourselves off for a rare evening meal out and even managed to avoid talking autism all evening too!

So, now we enter the six week period of everyone at home. Shattered already from two weeks of dreadful sleep. Expect we’ll survive, we usually do!


About barbgrant

full-time parent/carer and part-time OU student
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One Response to Summer 2017: Week 1

  1. DGGYST says:

    Hang in there!

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