An overdue blog and a pie chart

Writing my next blog has been high on my guilt list. There were so many things I have wanted to write about over the past few months to celebrate some wonderful milestones. So apologies if this is a long one but do read it as it has some nice stuff and some important stuff in here as well as a pie chart which I am very proud of.

In October, just as I thought she was maybe never going to do it, Marigold found her feet and started walking. When your child walks for the first time, it is always one of the most incredible moments, but I can’t really explain the magic of this when you do not have the certainty that it will happen. Walking outside is still tricky, but inside she is now beetling around like any other manic toddler and I have promised myself I will never, ever tire of the sight of her doing this.

She has made great progress in her understanding and communication. Her receptive language is really strong and whilst she is not speaking, with the use of some Makaton signs and other visual aids she is able to tell us wants she wants (which is usually Peppa Pig.) On that note, her vocabulary now extends to Mum, Dad, Peppa Pig (obvs) and “donkey” and “chocolate”, both of which she has said twice, and paints a fairly bizarre picture of her motivations. She loves books and nothing makes her happier than sitting on your lap and being read to…for hours…and hours…and hours….I am able to recite Room on the Broom, Paper Dolls and Peppa Pig and Her Golden Boots off by heart now. She adores animals, babies, dressing up, pushchairs, playing in her toy kitchen and all the other things little girls her age enjoy doing. We feel that there is so much knowledge to be unlocked in her little head and are hopeful that it will come, in its own time, in Marigold time.

Finally, in January, Marigold started at a new pre school two mornings a week. A throw back to my own nursery days in the – ahem – mid 70s (#old), the setting is a huge church hall with every activity you could think of in it: a reading area, a sandpit, messy play, a music room with hundreds of instruments, play houses, a climbing frame, dressing up…. children of all ages, all nationalities, all abilities, staffed by a wonderful, caring, kind, experienced team. It is the inclusive and accepting environment I had hoped to find for her and with the dedicated support of her key worker she is integrating well. It is wonderful to see her interacting with her peers, finding her place, growing in confidence and to see how the big girls look after her. It makes me think that with the right support in place, Marigold could thrive in a mainstream setting.

But there is a mirror image to the picture I have painted. And that is “the fight” that every parent who has a unique child like Marigold is familiar with.

As I am sitting here typing, I am trying to work out why it has taken me so long to write this. And I guess that is because to find a spare hour of head space these days is virtually impossible. My husband’s plea to me at the start of 2017 was to “please, please not be too mad this year.” By that, he meant to not get involved in everything and stretch myself so thin I am breaking. I am trying really hard, but even with this mantra in my head at all times, it seems like an impossible task. I am currently all about the data, so thought I would maybe create a pie chart of what is going on in my brain according to the following categories:

  • Professional self and work
  • Family life
  • School stuff
  • Politics / campaigning for causes
  • Children’s social calendar
  • Time for me and husband that is not Game of Thrones
  • Time for me and my friends
  • Chores / dealing with ongoing domestic disasters
  • Exercise
  • Peaceful time in the French countryside
  • Dealing with Marigold’s healthcare

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You will note the biggest category in light blue with the arrow pointing to it. This is the category proportionally dedicated to Marigold’s healthcare. But not only to the time spent in appointments, therapies the like, ie useful, productive time which helps her development, but it is the time also spent chasing referrals that have been lost, calling for appointments to services where we seem to have dropped off the list, trying to organize multi-disciplinary appointments with her support team, challenging those services where we do feel we are getting the input she needs. Most recently, a huge part of that blue area has been taken over by research into of Marigold’s educational future and what we will need to do in this respect. And it is a daunting prospect. The more I delve into the world of the EHCP (Educational Health Care Plan), the more stories I hear of children not getting the funding they need, who are not in the right setting and the support they need to ensure they achieve their potential, of parents worn down by “the fight” to get their child what they need. (And many of these are parents such as myself with the experience and skills to try to navigate the system. I can’t imagine how overwhelming it must be for those who don’t have that. ) All this is against a backdrop of funding cuts in social care and education, which I fear could really impact on child such as Marigold.

I see this said so often on forums. “I am tired of fighting.” But despite having children who are more vulnerable, who need more help, despite having already faced the many challenges that come with a genetic diagnosis, it seems that fighting is what you need to do.

So apologies in advance if you find my blogs fewer and further between. As my unique little daughter blossoms and grows, I will be focusing on my energies on working with her support team to ensure we get her the best possible input. As well as valiantly trying to redress my personal brain pie chart to be a healthier balance.

PS: it is sad to note that the small orange section was the category ‘Time spent with husband that is not Game of Thrones. Must do better.

PPS: Sorry about the title. It is 1030pm and the all sections of the brain pie chart have been exhausted today so I decided to be literal. I am very proud of the pie chart. Did I say that already?

Helen is mother to Marigold, her beautiful daughter who was diagnosed with a unique genetic condition, trisomy 3q11 mosaicism, at 3 months old. For other parents whose children are facing similar rare or unique diagnoses, please contact Unique, a fantastic charity dedicated to support and information for families of children with rare disorders – http://www.rarechromo.co.uk.

 

4 thoughts on “An overdue blog and a pie chart

  1. Helen, you appear to have such an endless energy and it’s only when I read these blogs that I realise everything you have going on. Marigold is an absolute little star and it’s wonderful to hear of her ‘beetling around’. I really hope you can get her into a mainstream school with the care she needs to be able to thrive. As you say it’s so unfair that to get this you have to ‘fight’ so hard and I know my best friend’s mum, who was a social worker, said exactly that about – it’s one thing for those of us with the mindset and knowledge to pursue things endlessly but it’s terrible for those who can’t and simply get left behind. Sending all our love and hope to see you out in a rare sliver of friends time soon! Susan xx

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  2. Lovely blog … thank you for taking the time to write it. My daughter is 13 also with a unique chromosomal disorder and I was taken right back to those early days when reading your blog. You may not feel like it but let me reassure you that the system .. EHC plans and all that… is gradually getting better. The law and systems are in place to join things up making people work together which never happened before. And although life with a disabled child is still complicated and challenging there are new services which can help you through some steps. Look up Independent Supporters to help you through the EHCP process, your Local Offer for other information as a starting place. Systems to support our families are getting better though we still have to work them out!

    Your daughter Marigold sounds lovely… enjoy every moment of Room on a Broom and her toddling around… special times. Take care

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    • It is good to hear it is improving – I would hate to think how it must have been years ago when there was less support and awareness. but we must always campaign for better! I hope your daughter is doing well, thanks so much for reading.

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