what is took to get a yes to doing an ehc needs assessment

This week we were told by the LA that they had reconsidered our case, and will carry out an EHC needs assessment for our Son, just a week before we were due to go to mediation.

We were beyond excited and relieved to get that phone call as it has been a long 3 months. In that time we have had some highs and lows, as we struggled to gather together the evidence required to support our EHC needs assessment request.

Finally our perseverance in trying to get assessments and reports from every professional we could self-refer to, seems to be paying off.

The Road Ahead

8 weeks before a decision is taken on whether an EHC plan is needed for our Son

We are very much aware that this is only the first hurdle that we have managed to overcome, however we are a little more hopeful. Fingers crossed, we now have enough evidence now to support getting a plan in place with an adequate level of support.

Have you been through the EHC Assessment process - how did you approach it and what was your journey like? It would be great to hear about your experiences, so future parents have more insight into what to expect ...

pathological demand avoidance

April was a flurry of assessments, form filling and debriefs with various professionals and we now have a confirmed diagnosis (or two). Autism Spectrum Disorder, with a sub-diagnosis of Pathological Demand Avoidance. Or, ASD with PDA, for short.

Autism Spectrum Disorder, with a sub-diagnosis of Pathological Demand Avoidance

We have been expecting the ASD diagnosis, however were slightly caught out by a diagnosis of PDA by the Neuro Psych (who is also an Ed Psych).

From the little that I have read PDA is characterised by:
  • A need to avoid ordinary demands and expectations, where children with PDA will come up with all sorts of excuses to avoid these demands. 
  • Children can seem to be outwardly sociable, however their need to be in control can cause problems in socialising with others. 
  • These children also have a level of imagination and engage in pretend play to an extent not usually seen in children on the spectrum
  • The key to managing children with PDA is to reduce demands and try to allow them some control in a situation

    need to avoid ordinary demands and expectations

    We identified with many of the traits described on the NAS and PDA society websites, however it was hard not to be concerned by some of the descriptions of the associated behaviour difficulties which are likely require a huge amount of support into adulthood.

    we don't know whether the difficulties we are already experiencing will get more challenging as our Son gets older

    The most concerning part is that we don't know whether the difficulties we are already experiencing will get more challenging as our Son gets older, or whether we will be able to find a way to reduce the level of anxiety and associated negative behaviours.

    Being told you are going to be faced with an enormous challenge for years to come is daunting, and my resolve to be Mindful and avoid fretting about the future has been severely tested this week. At least practice makes perfect.

    I had thought that getting a confirmed diagnosis would open doors, provide enlightenment and help us get the support we needed. I am no less confused, have more questions than answers and still have a way to go to get the support we need. 

    we now know more about what questions we should be asking

    The one thing that has changed, is that we now know more about what questions we should be asking, and have a firmer plan of what it is that we need to do and where to go to find help. We also have additional confidence and conviction when stating what help and support we believe is needed for my Son and for us. 

    Next step on this journey is our mediation with the LA to try reach agreement on getting an EHC needs assessment, so we don't need to go on to lodge a formal appeal. Fingers crossed - the professional reports and our new found diagnosis will help us make our case!

    What does getting a diagnosis mean to you, and has it made a difference to helping you get support?

    I have quickly found that you need super human powers to successfully navigate the many twists and turns that come with trying to get a diagnosis, obtain an EHC needs assessment and maintain positive relationships at school in a challenging situation.

    After months of trying to run as fast as I could to get help for my Son, I had to call time out on Autism.

    The constant pressure to find help, combined with the frustration at how slow things move and the fact that there was little that I could do to move things on were starting to have an impact on me.

    Things had got to the stage where I didn't feel like I could take any more challenges and I ended up in the Doctor's surgery crying that I didn't know how much more I could take. The problem was I needed to find a way to switch off - I literally had to stop myself from worrying.

    In case of emergency apply your oxygen mask before attending to your child

    --- Airlines

    For the past 4 weeks I have stepped away from it all and used this time to reconnect with myself and my family. During this time I have taken time to read books that were not autism relation, explored my own interests, caught up with friends, spent time with my kids and tried to practice the art of mindfulness.

    This time out to focus on myself has allowed me the time to breathe, regroup and find the strength I need to challenge the LA's decision to not carry out an EHC assessment. I also feel that I have a new perspective which is focused on our longer term goals, rather than the short-term needs in reaction to the situation we have found ourselves in.

    Sometimes you need to step away before you can move forward

    I have also realised that I don't need to address everything today, and need to slow down to allow the process to take its course since getting a diagnosis and the right support is going to take time.

    From now on, I will be ensuring that I continue to make time for myself and the family - after all I won't be able to do much for my Son if I am not able to cope due to stress and exhaustion.
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