Practical Advice For Parents Whose Children Are Going Through The Diagnosis Process

It’s said that three of the most stressful events in a person’s life are getting married, starting a new job and moving house. And I agree, all of those things can be immensely stressful. However for parents of children with SEND, going through the diagnosis procedure, applying for an EHCP and going through transitions of any kind can definitely top that list.

This post aims to provide support and advice to those currently going through the diagnostic procedure:

You Are Allowed To Feel However You Need To

This isn’t the first piece of advice by chance. It’s the first piece because it matters. There is no right or wrong way to feel. And if you are going through the process with a second or third child this is equally relevant. You are allowed to feel sad, you are allowed to feel angry, and equally you are allowed to feel happy and even elated. For most families a mixture of emotions will be present. For me, my overriding emotions were fear that I wouldn’t be up to the job, relief that I was going mad, and sadness that my daughter’s life would be harder for her than I imaged. Over the years thousands emotions have changed, there are still days when I feel both fear and sadness but now they vastly overridden with pride of what she has overcome and happiness that I struck lucky enough to be chosen to be the Mum of such an incredible daughter.

Nothing Happens In The Timescale You Expect It To

The diagnostic process often involves multiple appointments with multiple professionals at multiple times. You are unlikely to get more than a referral (each of which have their own waiting lists and assessments which again can take multiple visits) on your first visit to the paediatrician. Whilst some areas have shorter waiting lists, it isn’t unusual for the process to take over two years from start to finish.

You Don’t Need A Diagnosis To Apply For An EHCP

Contrary to popular belief, you don’t need to wait for a diagnosis before applying for an Education and Health Care Plan, and therefore secure support for your child at school. The education system works on the basis of need rather than any diagnosis. The key is for you and school to document the things your child is finding hard and anything over and above the norm that is being done to support them. If they need extra support now, do not feel that you need to wait.

Getting A Diagnosis Doesn’t Necessarily Equal Support

It’s all too easy to see diagnosis as the holy grail, believing that it will automatically result in additional support for your child and the family as a whole. Sadly, all too often this isn’t the case. It’s just one of the reasons I encourage families to be proactive in gaining knowledge and implementing strategies even prior to starting the process. With my mum head on, this is one thing I learnt the hard way, and it’s definitely a big driving force behind the work I do now. 

Follow Your Gut

If I had a pound for every person that said to me in the early days ‘but she doesn’t look Autistic’, I would be one very rich woman. But the truth is despite lack of support from Nursery and from some friends and family members, I knew that I wasn’t imagining things. Never be scared to stand up for what you believe is right. You are your child’s most treasured advocate, and even though sometimes it won’t feel that way, your views are important and should be treated as such.

Be Kind To Yourself

There will be times when you will wonder if you are doing the right thing, times when you seem to spend 3/4 of your life on the telephone arguing with professionals, and times when you wonder if you really can carry on. And that is ok. Ask for help from friends and family, and take care of yourself in thecways you can. Remember it’s ok to find this hard, and that to be there for others you also need to be there for yourself.

WHAT NEXT?

Why not join our lovely, friendly Facebook Group full of parents determined to make sure their children are #UNIQUEANDSUCCESSFUL.

If you do want to learn more you might find our autism section a useful place to start. It’s full of different strategies to try out.

Or if you’re looking for more personal support to help you take that action, why not check out our Consultancy Services.

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