It has dawned on me that I have not really explained about Jude’s disabilities and what they mean. Most people assume he is just autistic but actually I think his (still as yet undiagnosed) autism is the mildest of his issues. Jude was born with Microcephaly and as such has Global Development Delay. I had all the usual scans during my pregnancy and at the final one at 20 weeks, all seemed fine. I have no idea what happened in the second half of my pregnancy but I will forever wonder if I did something wrong…Mother’s Guilt strikes again. I get that a lot, don’t I?!
Anyway, so I went into labour on my due date and Jude was born two days later. He seemed perfectly well and normal. He weighed 8lbs 11oz but I don’t remember the staff measuring his head circumference or anything else; I guess they must have as I vaguely remember his weight and length being on the 75th centile line but his head circumference only being on the 9th. I had no inkling that anything was wrong whilst in hospital so carried on in the usual bumbling new mother, I-have-no-idea-what-I’m-doing kind of way.
Microcephaly basically means small brain – “micro” = small and “cephaly” = brain. It can lead to learning disabilities as well as other health issues. Every case is different!
This is quite an informative basis for understanding Microcephaly for anyone interested…http://www.cafamily.org.uk/medical-information/conditions/m/microcephaly/
Global Development Delay is generally where a child does not reach two or more milestones across the developmental areas of gross motor, fine motor, communication, cognitive and social/emotional Here is an interesting description of GGD http://www.cafamily.org.uk/medical-information/conditions/g/global-developmental-delay/
During his formative months, Jude’s 9th centile head circumference was monitored each week by Health Visitors when I went to get him weighed and despite his weight going up, his head size never did. In fact, it slowly slid down the chart and now does not even reach the 1st centile. I never had that normal state of emotions that new parents feel because of all the worry and professional input literally from day one. It sounds awful but I don’t remember even having time to love Jude and get to know his personality, it was literally worry and concern plus that dreaded unknown and being led blindly by our paediatrician and subsequently the physio and other people involved in Jude’s development. Obviously, I loved him entirely but for anyone who remembers what it feels like to be a first time parent, I was in a haze. A complete blur of nappies, trying to work out routines, feed times plus attending hospital every week for various appointments and therapies. I was worried something terrible was wrong and didn’t understand what it meant for the immediate future let alone long term. I felt distain towards other new parents who were concerned that their baby would not nap when they wanted he or she to nap, or who were struggling with weaning or breastfeeding. How dare people complain about these NON problems! These feelings have long gone but I guess that was my immediate reaction. Why me?! I didn’t feel I was a strong enough parent to cope with this level of nightmare.
On the positive side…following so many years of therapy with Jude, I now feel I resemble a pretty competent physio or OT. I know things many parents never even think about!
But time moves on and you get used to your unique situation and now I cannot imagine having purely non-disabled children. I’m not saying that wouldn’t be lovely but I know now that I am strong enough to be Jude’s mother and will continue to be so for as long as he needs me.
There is a fab organisation in America that holds Microcephaly conventions each year, I considered setting one up over here but just do not have the time to dedicate to running a charity on my own so live in wait for someone else to do it! The American one is at The Foundation for Children with Microcephaly http://www.microcephaly.org Go have a looky, it’s quite detailed.