Welcome Alice to Diary of an Imperfect Mum. Alice is a mother of three children, one of whom is her 10 year old son Jude. Jude has severe learning disabilities and attends a special needs school. He was born with Microcephaly and thus has Global Development Delay and undiagnosed autism.
1. When did you first realise your child has microcephaly?
Jude has microcephaly, Global Development Delay and as yet undiagnosed autism. I say as yet undiagnosed because I would literally bet my life on the fact he is slap bang on the Spectrum but because the waiting lists for assessment is so ridiculously long in Hertfordshire (around a year and a half), we’re still waiting. Our assessment should be done February time.
I realised Jude had something different about him when he was literally a month or so old. I was part of an antenatal group and he just wasn’t like the other babies. Vacant, he could just stare at something but it was as if he was looking through it at times whereas young babies generally look as if they’re taking everything in.
2. How did you feel when you found out that your child has microcephaly?
We asked to be referred three times before we were allowed to see a Paediatrician, he was about ten or eleven months by now. I think I felt quite blasé about it all really which sounds so stupid to me now. Our Paediatrician couldn’t really give us any hard and fast answers such as will Jude ever catch up with his peers? This was a big question I wanted answers to but needless to say because everyone is different, it’s entirely unanswerable. After the blasé attitude went away, I didn’t really feel anything negative for a while as he was still so young and his differences could be brushed away with a simple “ahh he’s just tired today” or “No, he doesn’t really know how to do that yet.”
3. Where did you first turn for help?
The Paediatrician we saw at Addenbrooks Hospital in Cambridge was fantastic and she guided us to a Physiotherapist so we could help Jude begin to move and crawl.
4. What advice would you give a parent who suspects or has just found out that their child has microcephaly?
I think I’d tell them to not give up on what you want for your child - you know what they need and what your family needs so don’t back down. I’ve had many a battle with our council but feel I’m slowly carving the services out of them that Jude really needs.
Also, it’s ok to feel super exhausted so don’t feel bad about asking close friends and family for support. I literally couldn’t survive without my parents.
5. What exactly is microcephaly? Did you know what it is when it was first diagnosed?
Microcephaly basically means small (micro) brain (cephaly) Jude’s head circumference was way way down the charts when he was born in comparison to his length and weight which both always cruised around the 75th centile line. At birth his head circumference was on the 5th and it slowly sloped downwards rather than up the chart. It’s marginal though, you really can’t tell from looking at Jude.
I wrote a post about it a while ago so if anyone would like a look then the link is here
6. What are the biggest challenges facing your child and your family?
Wow, where do we begin. Jude is a million miles behind his peers and currently functions at around 4 years old. Behaviourally Jude can be a nightmare which I think is partly down to frustration but also his autism. He’s literally like a jangling bag of energy and emotions. His speech isn’t great so he gets frustrated from lack of comprehension and communication. He struggles with fine motor skills so self-help skills are very poor - he can’t yet do up buttons or zips. He has mild physical problems because of low muscle tone so is pretty wobbly on his feet. He was turned down for Physio and Occupational Therapy for a long time but recently I kicked up a massive fuss and they’ve agreed to assess him again for both (yay me)
As a family we struggle because Jude often won’t do things we’d like to do so for example if we want to go for a walk into town but Jude’s in a funny mood then he’ll refuse to leave his bedroom so I’ll be stuck in with him and Joe takes the girls out. We can’t function as a family and it’s really becoming a difficult situation for us all.
7. What has been the greatest help for you, your child and your family in overcoming these challenges?
I’d love to say that social services have helped take the stress out of our lives but that would be a massive lie.
My mum. She used to drive all the way up to Cambridge from St. Albans to attend multiple hospital appointments with me from when Jude was tiny. She continues to be the support our family desperately needs and as a consequence her and Jude are incredibly close. She has always been a huge part of his life and we are forever grateful.
8. What has surprised you the most about raising a child with microcephaly?
How much it has changed me as a person, or perhaps not changed me but helped me realise what is important. You’d be surprised at some of the negative comments people say to you, how many people stare and point and how incredibly unimportant and tiny you can feel in society. There are times when I choose to stay in with the children because the thought of going to the swing park with Jude is too stressful. I actually wrote a book about our experiences which is mid-publication at the moment because I felt it important for people to see that not every family is as perfect as what they perceive their own. I also wrote it because I realise how many people with a disabled child feel incredibly isolated and this can lead to all sorts of mental health issues.
9. What’s the main bit of/the best advice you’d give another parent who has a child with microcephaly?
I’m not sure I have much advice for people but I guess I’d say to not listen to any negativity, your child has as much right to do whatever they want to do as any other child on this planet. Fight for what they need and what you need as a family and just be happy. Do what makes you all happy, we don’t all read from the same script.
10. Generally, what have you learnt about parenting, life, people or children from your experiences as a parent of a child with additional needs?
I’ve learnt that parenting a child with additional needs is more exhausting and relentless than you can possibly imagine but as with life, everyone’s experience is different. I try to focus on the positive because the negative (which I could literally talk all day about) just drags you down.
I have realised that there are some wonderfully kind and caring people out there and we are lucky enough to encounter them by raising a child such as Jude. He is beginning to have Support Worker time and it is amazing how wonderfully caring these people can be - Jude still talks about his first ever Support Worker who sadly moved abroad. She was wonderful and really set a benchmark for our expectations.
I have learnt that children can be really wonderful people and through watching interactions at the swing park or other playground-type area, people should really listen to their children more. I’ve had little children give up their swing or place on a roundabout for Jude and show other acts of kindness. It really humbles you.
Alice blogs at Living with a Jude. She examples life with her severely disabled son plus his two younger sisters. I love the honesty with which she writes. Alice started to write as a way of connecting with people in similar situations, she had done a lot of reading on parenting a child with learning disabilities and was horrified about how isolated many people feel. She didn’t want anyone to feel they were alone. What an inspiration! I particularly loved her comment - we don't all read from the same script... Thank you for taking part in the series.