Being An Additional Needs ‘Grizzly Bear’ Parent

Most of the time, as parents of a child with additional needs, things work as they should. That doesn’t happen by accident, it takes a huge amount of planning and energy to ensure that everything goes smoothly, but to an unknowing onlooker everything looks under control, relatively calm, generally successful, like watching a grizzly bear fishing for salmon.

Every now and then, however, something doesn’t go as it should, somebody gets it wrong. And if in getting it wrong, they adversely affect our additional needs child, well they’ve just given a grizzly bear a poke with a stick. That’s what happened last week.

James visits a nearby community centre every week as part of our programme of engaging him with the world and giving him a variety of opportunities of things to do. Taking the bear metaphor a bit further, it’s the equivalent of us taking our (rather large) cub to the river to learn to catch fish.

James really enjoys going to the community centre, but in the few months that he has been going there his underlying anxiety prevents him from getting out of the car and going inside. So, the team have been doing an amazing job in bringing craft activities out for James to do in the car! It’s been a great demonstration of inclusion done well. One of them brings out a tray, shows him what to do, and then we support James to do the activity. When it’s done, a team member comes back out to see what James has created and to congratulate him on his excellent work; there are high-fives all round! Until last week…

James doing a craft activity in the car

Last week we arrived with James in the car as usual to be told that a decision had been made by ‘senior management’ that unless James was able to get out of the car and come in to the centre, he would not be allowed to join in. The manager concerned had even phoned the team while off on sick leave to reinforce this instruction. James couldn’t get out of the car, so he couldn’t do his craft activity. Even though we were already there, we were not allowed to even go in and collect the craft activity for him. The team were clearly uncomfortable with this decision, but weren’t willing to go against the instructions received. I didn’t blame the team, they had been put in a very difficult position. The senior manager was unavailable as she was on sick leave, but she had poked the grizzly bear.

We took a very sad James away, wondering why he couldn’t do his craft as usual. Wondering why in an already tough world, someone had decided to make it a little bit tougher. We took James to get some McDonalds (via the drive thru, he is unable to get out there either) which cheered him up a bit, but while we sat in the car eating our meal my inner grizzly bear was raging. How could they do this to my boy?

It was time to act. Time to contact James’ Learning Disability team, time to contact his Social Worker, time to remind everyone that James’ needs are what is important here, not just some arbitrary ‘rule’ that had been imposed. Reasonable adjustments had been made to include James at the community centre for the past few months, there was no reason for these to suddenly stop. There is a duty to make and maintain these reasonable adjustments enshrined in law, and despite Government plans to change or replace the Equality Act 2010 it is currently in force. This ‘grizzly bear’ has teeth and claws.

James with a recent completed craft project

The clock is ticking; James is due to have another session at the community centre in three days time. James’ Community Learning Disability Nurse has demanded answers from the senior managers that run the session at the community centre, there is another ‘grizzly bear’ joining in the fight! We’re not hibernating anytime soon.

We have other ways of campaigning to get this sorted out, other ‘grizzly bears’ that we can call on to join with us. We’ll bring an army of ‘grizzly bears’ to the fight if we need to, but hopefully sense will prevail.

Many parents of children with additional needs find themselves in difficult situations like this, or worse. It shouldn’t happen, but it sadly does all too often. That’s why sometimes us additional needs parents come across as ‘grizzly bears’, we have to, it can be exhausting but we don’t have any other choice, it’s what we need to do for our child. Just don’t be the one to poke us with a stick!

Growl!

Mark

UPDATE: What a difference a week makes!

We’re back!! After a difficult visit last week (see above), we were back at the Community Centre yesterday for James’ car based craft activity… A Christmas tree 🎄 😀

James on his return to his in-car craft session, with his Christmas tree artwork

Thanks to ‘growling’ and praying about what had happened previously, when James was refused his ‘in car’ session at the Community Centre, and having enlisted the help of some professional ‘grizzlies’, James’ Social Worker and his Learning Disability Community Nurse, we were able to persuade the person who had made the bad decision about barring James to allow him to come back.

Unsurprisingly, when our ‘growling’ dug a bit deeper, we discovered that a big part of the previous decision was financial, James needed to have his in-car sessions paid for. Social Services are picking that up now and have formally confirmed James’ place at the session each week.

We can now get back to what we love best, helping our ‘cub’ to get the most out of life and giving him opportunities to engage with the world; until the next person makes the mistake of poking us with a stick…

So good that everything is sorted out and that James can keep making these wonderful pictures… we now have enough for the calendar so watch this space!! 😀

All text © Mark Arnold/The Additional Needs Blogfather, header image © National Geographic, all other images © Mark Arnold/The Additional Needs Blogfather and James Arnold

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