Your Disabled Child Is Now An Adult - Preparation Is Key!

cerebral palsy children with disabilities empowerment encouragement goals happiness mothers support Aug 09, 2020

Excuse me, when did you become an adult?

As any mother of a child with a disability will know, no matter what the age of your child, there is ALWAYS a longing to sort things out and make sure your child is happy and has the support needed.  Now picture this, after 17 years of sorting things out, I am informed as Dana is 18 years of age its not my responsibility to make discussion, she’s an adult now and we will not discuss anything with you, you can imagine it all came as a bit of a shock.

Let me set the scene, throughout school years and even 6th form as a mum I was at every meeting, including the SENCO ones. I even called meetings when communication in school was woolly and mixed messages were being heard. I was the facilitator between health and school ensuring everyone was on the same page. Being proactive and getting things done was second nature as the only goal was ensuring Dana achieved her potential, whether in schooling or physically. I was the buffer in protecting her from unhelpful comments when teachers laughed at her when she firmly stated she wanted to study Law at University. I was a coach and helped her develop skills for her own personal development. In my mind there was nothing Dana couldn’t achieve with the right mindset. Yet others found this incomprehensible to understand how a child with Cerebral Palsy could possibly go to University and that she should not set such high expectations - perhaps looking at something less ambitious would suit her better.  Fortunately one of Dana’s strengths is a strong will to succeed and an assertive streak, and Dana achieved 3 distinction stars in 6th form which equalled to over and above the required points for the University she was keen on. So in September she started her Law degree at Canterbury University and as a parent this was one of the proudest moments. I knew how much harder she had to work because of her disability and the resilience she showed was a credit to her character. 

To be honest, it didn’t even occur to me Dana turning 18 would have any difference. I naively thought I would still be involved with matters when Dana was in University, yet how wrong I was. Apparently as Dana is 18 years of age she is considered an adult therefore makes her own discussions. This was difficult for me to process as Dana was shielded from all the nitty gritty stuff and all the paperwork, so this was a massive undertaking for her and learning for me to step back. I felt I was abandoning her by not providing her with the protective shield. Yet Dana resilient as ever took it all in her stride and dealt with matters. Sometimes not urgently so they escalated into bigger issues, but it was all learning for her.

Dana has now been at University nearly a year. She has gone from living at home having things done for her and taken to and from school daily to a life of complete independent living, shopping for her groceries, budgeting her spend, doing her own laundry, cleaning and cooking. She does have a carer a couple of times a week who helps with tasks but again Dana has responsibility for assigning these tasks for her specific needs at the time and to schedule in the carer. Dana also attends lectures with no 1:1 support, unlike school. I think she is doing a pretty good job managing with everything. And as for me letting go, although is one of the hardest things to do is one of the best things you can do for your young adult.

Here are a few tips to consider now, whatever the age of you child:

  1. It may seem you are going through an enormous amount of issues at school currently, this really is not important. Step back and think of what outcome you want to achieve, rather than get sucked in to the schools issues. If you are looking for a comprehensive answer, always start your questions with how or what, avoid why and closed answered question (where they respond yes or no).
  2. Start thinking about where you see your child or what your child wants to do when they leave school. Is there anything you can put in place now to achieve that goal?
  3. Encourage your child with personal responsibility, this could be setting a weekly budget spend for them to go shopping – paying for items themselves. Allocate chores around the house, even if its targeted to their bedroom.
  4. Empower them with life skills, get them involved with how you run your household.
  5. Share with them things like what an EHCP is and explain its purpose. Discuss with them their disability and the terminology used.
  6. Start thinking about the areas for you to take a step back and where you can empower your child.

These are a few tips to consider and not all may be appropriate for you at this particular time due to the age of your child. I hope it has given some thoughts to forward thinking and making the transition from child to adult a bit smoother. Visit HERE to utilise my free resources!

Sera xx

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