Your Disabled Child is Now an Adult - Preparation is Key

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 6^th 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 6^th 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.

Letter to Older Self - Setting Intentions

Letter to Older Self

When I was younger and still at school, the thought of writing a letter to my older self did not enter my mind. All my thoughts were swimming in my head, imagining my wedding, thinking I would have 2 children and live in a nice house in the suburbs. Career-wise I knew I wanted to become a Hairdresser so that was a given. There were no second choices - it was my destiny. I did become a Hairdresser and worked for John Frieda. I am married and have two children living in the suburbs. My career now is in personal development and coaching.

So this weekend as I’m busy clearing our house for the big house move, I’m in my daughters room, who is now in Canterbury University studying Law, and I come across some old school papers. Among the assignment sheets was a white envelope with a letter inside. I take out the letter and start reading. WOW I’m stunned, my daughter wrote a letter to her older self while still at school and this is what she said:

  

What was so amazing as I was reading, Dana knew her destiny and her mind was set with a clear intention, yet there were many teachers who would laugh at her because how can a girl such as Dana who has Cerebral Palsy be capable of going to University and study Law. Others urged her to lower her expectations, as they did want her to be disappointed. Dana had a clear belief and nobody was going to get in her way.

There are two facts in this letter which are not true, the University Dana is studying Law is Canterbury and she achieved 3 distinction stars and a pass.

So what clear intentions can you set yourself today to make your hopes and dreams became a reality? If you have a belief isn’t it time to listen and take action.

Why Having A Daily Ritual Saved My Life

Why having a daily ritual saved my life

2016 was not a great year. From the start of the year, my father’s cancer returned to another part of his body - his spine. Going in and out of hospital and having carers in the home was so traumatic for him and seeing him lose his independence was awful.

That day in February when dad was picked up from home and taken to his routine Radiotherapy appointment, little did I know he would never return to his home again. February came and went, then March and finally April when he was discharged to a Nursing Home. During these months, all stressful with little support, asking questions, querying processes, coordinating hospital, social services and nursing home.

Coupled with conflicting information from the hospital, firstly told my father had a year to live, then told by a consultant he had 3 months to live, only to be told that consultant got it completely wrong. Being constantly involved in my fathers care making sure everyone was talking to each other was so stressful. Being wrapped up in financial statements with social care to check on my dads financial affordability for his care. Looking after my father house and keeping my eye on the issues relating to my fathers needs was a full-time job.

The first nursing home was negligent in their care and so in April he was moved to another nursing home. Again all arranged by me. My father by this point had lost all mobility and was confined to a wheelchair. In just 4 weeks he had given up speaking with anyone and was short-tempered. He refused to see visitors and refused to answer the phone when his friends called. He had urine infections which were not clearing. The hospital was not interested in the changes affecting, even though on discharge they specifically said to inform them of any changes.

On the 14^th June my father died, exactly 3 months from when the consultant said he had 3 months to live.

The anger I felt at the hospitals relaxed approach, covering up the truth was beyond words. The guilt I felt being wrapped up in the silly financial things instead of spending the last few months with my dad is something I feel I had been robbed of. The unfinished conversations brought a deep hurt in my belly.

Parallel to this I was working plus preparing my daughter for university as she was starting in September.  And now I had my fathers funeral to arrange, in addition to dealing with the estate as the executor.

The red tap and bloody mindlessness of the hospital, care home and social services had taken me to breaking point and I was signed off work in September. The vultures were desperate to get their money. They say money brings out the worst in families, how true this was.  How I was feeling or the amount I was dealing with were not important. I felt I was having a breakdown and had no one to turn to. My vestibular condition returned with force and to be honest started months ago, but I could manage it. The stress of everything was the tipping point.

It got to a point enough was enough, I was at my lowest point and hated how I was feeling. I had to help myself get out of this deep sense of depression and stress.  I still was not grieving my father as this was buried as I was sorting out the practical things and being pulled in different directions by people - just to satisfy their needs.

I had seen 4 different GP’s, only 1 GP was not dismissive and actually listened. The others suggested if I felt like giving up to speak to someone. Actually, I thought my GP was someone I could speak with.

I took control and started helping myself. I managed to stop taking everything on at once, mainly to control the vestibular. I booked to see my previous vestibular physio for treatment as an appointment with the NHS was not imminent. A referral to see an NHS physio was made in February and an appointment came through for August. 

Today I have people around me helping me. I have a personal trainer. I eat clean as much as possible. I meditate morning and night and have a gratitude journal.  I continue my rehabilitation and focus on positives, staying away from negativity as much as possible.

My daily ritual has saved me.