Welcome to the first post in my new series.
This is a series where I meet mother's of children with speech, language and/or communication difficulties and ask them about their experiences, how they have coped, what they have learned and what they wish to share with others. The interviews are transcribed in the tellers own words.
Today I met Zuhra, mum of two girls, one of whom has a rare genetic disorder that causes developmental delay, seizures and autism.
Tell me a little bit about your children
My name is Zuhra and I have two girls' age 12 and 13. My 12 year old is the one with special needs. She has a gene deformity that causes her epilepsy called Dravet. It causes epilepsy and other health issues such as ADHD, Autism and Sclerosis. My daughter has autism and the syndrome also effects her gait, that means their posture and their hip muscles. It also affects cognition and so she has severe learning delays and speech and language delays. I think that's it. Living with it everyday you tend to forget lots of things involved, as it becomes the norm.
Can you remember the point when you received the diagnosis?
Her seizures started when she was four months old. She was diagnosed, just when she started reception. It was two diagnoses that happened at the same time. First I was told she had the defective gene and then she was diagnosed with autism after that.
Do you remember getting this diagnosis? Was it done sensitively?
The diagnosis that hit me the most was the gene diagnosis. The first word that came out hit me and then everything else was a blur. My brain focused on this is a genetic condition and therefore there is nothing to fix it, it's going to be a lifetime. So when they told me about the autism diagnosis, it didn't really sink in, I was thinking this is not the worse case scenario, I have already been hit by the worse case scenario. The neurologist who gave me the diagnosis did not really elaborate further, so I wasn't given that much info on what it means. I wanted someone who could give me a holistic approach, as it effects so many areas of her life. It lacked that side of empathy. As a parent it hits you really hard but some professionals are just focused on the child and medications. For a while I was surfing on the internet but back then there wasn't much info.
Going forward from the diagnosis, what was the overriding emotion?
Emotionally I was devastated, there was no support really, or even just signing you to where you need to go. After a while I found there was a support group for epilepsy conditions. I didn't go because when I was looking on line it seemed as though the other kids conditions were so severe, I felt embarrassed going there because compared to them I felt my daughter had a slap on the wrist. How could I go and sit there between parents who were having children with hundreds of seizures everyday children in such a worse situation and me sitting there complaining about my child who has just got a mild form of it. For years I didn't go.
Eventually I was looking for help, as I had a problem with her school as well. She was in mainstream when she got the diagnosis of autism. It was an absolute nightmare because the headteacher wanted her out of the school. I didn't have any support at all, from anyone that could help me with schools and education. Thankfully I found an organisation called Kids, but they directed me to another organisation called Elfreda Rathbone who had parent advocates. The parent advocate, Lorraine, was absolutely brilliant, I can't thank her enough for the rest of my life. She had a child with autism, she completely understood, the listened, she empathised. There was a second parent too, Kerry, she didn't have a child with special needs but she was very understanding. They supported me with her school which was a nightmare for months, they helped me move her to a special needs school, they helped me with her transport, they helped with when she needed a wheelchair. They were amazing and I can't thank them enough. I would direct anyone to them!
What have you worried about the most?
I am the kind of person who likes to ignore problems when it gets too much! This is good and bad in a sense. It is good that it carried me through the toughest times, but bad in the fact that if you bottle things up, they do come back to bite you in the back. You don't want them to come and bite you in the back when you are already in a terrible situation already. I worry about her never talking, is she going to stay like this forever, is there hope of her going to mainstream school? Having an education, going to university all things you would assume for a neurotypical child. You have to adjust to the fact that that is not going to happen.
You need to meet your child at their level, wherever they are, whatever progress they make that is a huge achievement for them, and to just celebrate the wins and the achievements that they do. It does every now and then hit you, when you see your other child's and they are moving schools and making friends, yes it does hurt, you try and brush it under the carpet.
In reality what was the best help you got?
The best help I got was knowledge. I see this in a lot of other parents, just knowledge. Because you get the diagnosis and you are like what does this mean? Looking back I would have done better going to that support group. I would have been in a much better position now, rather than suffering on my own.
I am a person that needs to know about everything regarding speech and language, communication, autism. Until I got that I couldn't rest.
What would you tell other mum's in your situation
Go and look for information, you will find it somewhere, it might be difficult but you will always find it if you keep looking for it.
And just be patient with yourself and with your child
The guilt is always there as well because you can be tired and exhausted from everything you are doing for the child but you are a human being at the end of the day so don't feel guilty about anything. Whatever you haven't done today, you can do again tomorrow.
All that matters to your child is that they feel loved and they feel safe and they feel that they are taken care of. There's always tomorrow to do better.
Just be good and gentle to yourself, and be patient. Tomorrow will be a better day.
Thank you so much Zuhra for your insight, strength and words of wisdom, I know I won't be the only one who found your story inspirational x
Zuhra is a fellow mum in business follow her over on instagram @fondovit