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10 things I wish I had been told at diagnosis


1.     Your child is a person with gifts and skills and equal to all others.

We are programmed as a society to feel sorry for people with disabilities. They are people to be pitied because they will never be normal like us. This is the view that parents are expected to take on diagnosis. Yet everyone has a unique set of skills and gifts that should be treasured and shared with the world.

2.      Notice the people who light up around your child and hold on to them.

Because we still have a segregated society most people don’t understand disability. They can be scared to say or do the wrong thing and it can appear as if they are not interested. This often isn’t the case but it can be tiring to have to change this perception. There are people out there who just automatically understand your child, can see their gifts and skills, and recognise that they are an equal. These are good people to have around. Hold on to them!

3.     Everyone can communicate and learn a full language if you show them how​.

Back when Leia was diagnosed people didn’t believe that people with Angelman syndrome (and many other diagnoses) could learn a full language system. Many who can effect change still don’t believe in language for all. But everyone should have a robust communication system and can improve their communication. Like the rest of us Leia is learning new communication all the time. She surprises us often and has a lot to say. I would have loved to have known this at the beginning. I am grateful that it’s never too late to start a communication journey.

4.     Listen to communication; understand and acknowledge it​.

This is still something we could be better at, but I wish we had realised how important it is to properly listen to all communication and to respond to it appropriately. Leia communicates in very clever ways, but it is not always recognised by others. She feels most supported when people listen to her and acknowledge that she has communicated.

5.     Neurological differences mean differences in sensory processing​.

This may seem unusual now, but no one spoke about the sensory system beyond the usual five. We had no idea the vestibular or proprioceptor systems existed, let alone the impact of sensory dysregulation on regulation. When we eventually did find out Leia was 5. It helped explain a lot.

6.     Everyone can learn and will continue to learn their whole lives.​

It’s not that we were told that Leia couldn’t learn. But everyone expected that the ceiling would be low. There are still big gaps in the education system for those who have attended special needs schools. There is much evidence-based practice for teaching people who cannot use spoken words or handwriting to learn but sadly, it is not common practice. If school isn’t willing to follow these practices you can do them at home.

7.     It’s our job to make all learning engaging.

Education often has boring and repetitive tasks. For most people, it isn’t much of a bother to complete the tasks. However, if your body finds it hard to stay still, communicating is harder because you use alternative means to do so, and you struggle with the motor skills required for many learning experiences, it is just too much effort to do boring and repetitive tasks. This is especially when you are asked to repeat the same tasks again and again with no progress. If we expect Leia to make the effort, then the least we can do is make the task worthwhile and engaging. 

8.      Trust yourself and your parental instincts.

If you have little or no experience of disability, diagnosis can be very scary. Often professionals and others will tell you not to expect much of your child. You become “mum” a passive observer of your child’s life, you think you cannot possibly know what to do with a disabled child as they are different. You believe that everyone else knows better than you. This is simply not true. It took us years to figure it out, and we listened to some bad advice along the way but Leia needs the same things her siblings do. Sure, she needs extra tools and time to learn some of it and you might not know about those. But listen to yourself, you know what is best for your child.

9.      The best information will come from other parents.

Related to the point above. There will be times when you are struggling, you have asked everywhere you can, and no-one seems able to help. It could be a very specific problem or more generic help that you need. The best people to ask are the ones who have travelled this road before you. There will be people who have been where you are and figured it out. Plus, they are generally very willing to help. They know the system can be tough to navigate and want to stop others from making their mistakes. Help does not need to be diagnosis specific either, so if your child has a rare diagnosis you are not alone.  

10. It’s not all bad.

There are positives from having disability in your life. We appreciated not waiting in long queues at a theme park, we have a lot of fun, an honest opinion can be very refreshing, and we have met lots of wonderful and diverse people. It can be a rollercoaster, but those highs are very high.  



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