Parenting from a special Perspective: Caring in the Chaos

25 April 2016

Ever wondered what it is really like to parent from a special perspective? Parent to a Special Needs Child? Where do you turn for help? What challenges do you face? What has surprised you? What have you learned? Every month I will be featuring one of my brilliant fellow SEND bloggers and sharing their reflections on raising a child with special needs.

Welcome Nadine. Nadine blogs over at Caring in the chaos. A blog about her journey as a single mother and a carer to a beautiful toddler. A place where she shares learnt developmental tips in speech and language, Occupational therapy and Physiotherapy. Please pop over and take a look. 

1. When did you first realise your child has Chromosome 18Q?

I had no idea my daughter was born with a condition, all was fine throughout the pregnancy it seemed, up until 36 weeks when they thought she was a bit small - so they opted for a planned c section. When she arrived she was tiny at 4lbs but she was healthy - it was only 6-8 weeks later things started happening infections, crying and trips to A&E that alarm bells started ringing.

Around this time I started to suspect something was wrong with her head, as it seemed bigger than normal. It was hard to get people to agree with me - as she was born so small, I was reassured constantly that she was ‘just growing’ but something didn't feel right and I went to Dr Google and came to the conclusion she may have Hydrocephalus (Water on the brain). Her face and eyes were different, her eyes had a sunsetting look. I was however ignored by doctors - brushed off as a nervous first time mum.

Some 6 months later she was formally diagnosed with Communicating Hydrocephalus.

It was not one of those times you actually want to be right.

This lead to genetic testing where she was diagnosed with Chromosome 18Q.

2. How did you feel when you found out that your child has Chromosome 18Q? 

I felt relieved I had something to pin these medical mysteries on - because since she was born I was jumping from one problem to the next and felt lost. This gave me something to help formulate my thoughts.

3. Where did you first turn for help?

This is a hard one - there wasn't anyone really. We spoke to our families but they didn't really know what to say. She was a baby and it was an invisible illness, the general consensus was “She would be okay” and that was that. There were no support groups I could go to. But I spent a lot of time on google and the Unique website trying to learn as much as possible.

4. What advice would you give a parent who suspects or has just found out that their child has Chromosome 18Q?  

My advice to parents in general is trust your instincts and let go of the notion that doctors know best or everything. Doctors are great and can be a valuable source of information, however your child and situation are unique so whatever the diagnosis try and remain optimistic. Also allow yourself to grieve and grieve again - when your child has a life long condition the future you imagined for them may be drastically different and that can be hard as a parent to accept. Acceptance doesn't always come immediately - forgive yourself for that and go through the process of grieving if you need to.

I am also a big advocate of counselling. Speaking to someone impartial allows you to express your deepest fears, worries and even guilt. Speaking to friends and family is good but having the freedom to talk without judgement can be healing.

As a parent I felt immense guilt - did I do something wrong? Am I bad for wanting to wish the condition away etc etc? - Counselling has helped heal a lot of those thoughts.

5. What exactly is Chromosome 18Q?

Did you know what it is when it was first diagnosed? Chromosome 18q means on her 18th Chromosome the long arm has some information missing. A chunk of information was ‘deleted’. So thousands of pieces of data that should be there are not. How this affects her or anyone else with her condition is totally unique to them. The deleted part is never the same as someone elses. Only 1 in 40,000 children are born with it and so it is very rare.

I was completely ignorant to any chromonsonal problems - I had never known anyone with a disability or born with any differences and so It was a steep emotional learning curve.

6. What are the biggest challenges facing your child and your family?

Being a single parent and single carer can be emotionally and physically draining - the constant hospital appointments, meetings, therapies can seem endless. But thankfully she has a great attitude to all of theses and takes it in her stride.

A personal challenge is the unknown - will she be able to live an independent life. That is what you want for your child. Will she be able to talk? Walk independently. These are all unknowns and it can be draining constantly chasing these goals - but I never stop fighting for a best possible future for her.

7. What has been the greatest help for you, your child and your family in overcoming these challenges?

Counselling, growing in mental strength has enabled me to change my attitude about a lot of things and helped me become a better mother and carer.

8. What has surprised you the most about raising a child with Chromosome 18Q?  

Having a child with a condition has thrust me into the “Special Needs” community. A community I knew nothing about and purposely avoided. However what I have encountered is a community that go through so much often behind closed doors, with little support, understanding and respect from the wider world. I have met people who have overcome insurmountable challenges but who are still fighting. I have met kind, clever, intelligent, loving and misunderstood children. My heart has been cracked open in a way it never would have been had my daughter not been born with her challenges.

Often I get asked “whats wrong with your daughter?” And it upsets me - there is nothing ‘wrong’ with her. She is 100% perfectly ‘right’ and she has helped me become a better human through her existence.

9. What's the main bit of/the best advice you'd give another parent who has a child with Chromosome 18Q?

Keep a medical diary - this will be your bible, it will help you keep track of infections and medications taken. It helps you work out patterns and can often help you find solutions. Doctors are intimidated /facinated by rare conditions but they do not have all of the answers. Being proactive and recording information will help YOUR child.

Keep a food diary - Food plays a massive part in development and if your child has additional challenges (Physical delays as an example) being aware of certain foods that could be increased/decreased can help you immensely. For example if you child is delayed walking you may find they are more susceptible to being constipated so increasing fish oils and magnesium in their diet can help.

Thank you very much to Nadine for taking part in the series. 

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