It was #Blogtober17 that first gave me the idea of an A-Z of me series. For day one, I wrote the ‘A to Z of me’. I figure that now is a good time to come back to it and expand on the things for A to Z that make me, well, me.
A is for Additional Needs
There could be so much more to expand on but most who read regularly will know that my life heavily revolves around additional needs. Macsen has a speech delay. Enfys has 22q and with it hypermobility, global development delay, a compromised immune system. Anwen has funny kidneys.
Macsen’s Speech Delay
Macsen’s speech delay is typical of dyspraxia. He’s 3 and often can’t make the sounds to form words. We have recently completed another development assessment with the health visitor. The results were astonishing. He has no additional needs other than his speech delay.
In most areas of development he is at the level of a 48 month old (4 years). He is 42 months. His speech development is at 36 months. I’m over the moon about a 6 month delay because back in January that delay was 19 months. In March, when he started speech and language therapy, it was probably larger again.
I am super proud of my boy.
Enfys and 22q
Enfys has a global development delay. This affects speech, motor skills, social skills and personal skills. She’s a quiet child who is more into herself than most 2 year olds. She’s roughly 6-12 months behind where she should be. It’s so rewarding when she achieves something, even if she is doing it 6 months behind similar aged peers.
When she was first diagnosed with 22q, we were told that nobody knew what to expect. We didn’t know if she would walk (she did at 25 months); we didn’t know if she would climb (she does, well!). 22q is a spectrum disorder… there is no correlation of the severity of the symptoms a sufferer can experience.
Hypermobility is Enfys’ biggest problem at the moment.
Her ankles are unstable therefore her knees, hips and everything else are unstable. Walking for Enfys is like us walking on floating rubber mats wearing stilettos. It is hard work!
Anwen and Crossed Fused Renal Ectopia
Anwen’s kidneys aren’t really considered additional needs but they do make her a little bit more special. I’ve written more about her special kidneys here.