Thursday, 31 March 2016

Guest Post: Not All 2 Year Olds...

It's often difficult to explain Foetal Alcohol Spectrum Disorder , never mind how it effects a child. It's such a huge spectrum and unlike other spectrums, where you sit on it in terms of diagnosis, has little to do with severity but rather at what stage in pregnancy alcohol was consumed and if the effects are physical, emotional, behaviourally or most commonly a mixture. The simplest explanation I find is to say that my child, Annie, has brain damage. It's an uncomfortable thing to say but it's also true. (I'm still learning about the neurobiology of it)
I'm well aware when people see my bright, entertaining and lovable child and I talk about her special needs I sometimes sound (and feel!) like an impostor. When I explain her behaviours and challenges I know I am usually describing what most parents experience and it's hard to see how this isn't the same and how I'm not just a new parent freaking out (although I have been prone to do so on occasion). So I took this idea from a great blog I read earlier and thought I'd give it a go. My house is full of laughter and chaos. Currently as I type, Annie has made her own game from a plastic tomato and cup which is making us both laugh. (Although it's very rare she will play without my undivided attention) I never knew a 2 year old could have such personality and make me laugh so much. But it's always a constant balance of letting her have fun but trying to time how much stimulation she can handle because if I get it wrong and the day is done for. (Some days we have reached our limit before 8am and there is no redemption - just surviving). I spend a lot of time calculating and balancing our days and trying to figure out if what we do next will be the tipping point or do we have the strategies to manage. (If she wasn't such an extrovert it would be simpler.) Most of what I do is about planning, strategies, supervision and winging it! So here is my list about 2 year olds. Most parents will relate to some of this, but when you build it together like a jigsaw it becomes clear that my daughter isn't like most 2 year olds. 1. Not all 2 year olds have meltdowns that they pull chunks out their hair, bite their hand until it bleeds and bang their head against walls because they can't cope 2. Not all 2 year old hate transitioning from 1 place to another that it can take days to recover 3. Not all 2 year old are awake 3-4 times a night with medication because their brain isn't wired properly to sleep and the simplest noise or change in environment wakes them for hours. (4 hours of mooing 1 night last week, why mooing???) 4. Not all 2 year olds need routine so much that when you get their snack from a different place to usual they have a complete meltdown (see point 1) 5. Not all 2 year olds love falling so much they would rather throw themselves down the steps of the slide than go down it properly (sadly landing isn't as popular and the NHS is amazing!) 6. Not all 2 year olds will ask for food seconds after a meal or will fill their mouth until they choke or eat until they vomit 7. Not all 2 year olds will hurt themselves, then immediately do it again, and again... 8. Not all 2 year olds have such sensory needs that they put their hands round their neck and squeeze (panics me more than her!) or put their fingers down their throat until they vomit 9. Not all 2 year olds communicate through screaming or one word that could mean anything. (Thankfully she is now making progress with communication but is still very delayed as she is with most of her age appropriate skills.) 10. Not all 2 year olds can repeat the same word for 40 minutes. Not in a "I'm trying to annoy you way" but because they are so fixated on it that they cannot stop repeating it. 11. Not all 2 year olds have to take medication for their bowels because something has not formed correctly during pregnancy. 12. Not all 2 year olds need ear defenders to cope with day to day life -( not that she keeps them on) 13. Not all 2 year olds will eat cat food and polystyrene and pretty much anything they think might be food 14. Not all 2 year olds will get in a car with a stranger because they smiled at them without even a glance at their parent or leave a room because another stranger took her by the hand 15. Not all 2 year olds laugh and smile with everyone they meet then explode the second they are home because really they were being overstimulated but can't let it out until they are home and safe. 16. Not all 2 year olds have to be weighed and measured every few weeks to check their growth or are at risk of microencephaly or have dysmorphic facial features (although thankfully only recognisable to those looking for it) 17. Not all 2 year olds are unable to cope with simple noises like kettles boiling, brushes sweeping, chopping veg or hoovers 18. Not all 2 year olds have such poor special awareness and coordination that simple tasks like getting a spoon in your mouth or arms in your sleeves are so frustrating 19. Not all 2 year olds learn to speak and play by copying but cannot attach the meaning of the word to the object or grasp imaginative play 20. Not all 2 year olds can spend hours doing the same activity without once making eye contact or responding to her name because she is so focused. Yet another day cannot sit still for more than 10 seconds. My daughter is amazing. And the list is just a snapshot of how her life is different through no fault of her own. The good far outweighs the bad and she is flourishing. She is so much a part of me that I can't remember what I did before I had her. But every day is a mathematical battle of keeping her calm, and safe and happy without going too far and having her in a place where her brain cannot cope and she self destructs. FASD is complicated and hard but the successes are amazing. When she signed for the first time (reindeer) or put 2 words together (ducky juice) or finally let me brush her hair (sensory issue) without it becoming a battle of wills I'm so happy and proud because already she is overcoming her battles. But as a parent its sad to see how much harder her life is and how much more she has to cope with. She is a normal, mischievous, hilarious 2 year old on the surface. Underneath she is caring, and musical and lovely but battling against a world that her brain isn't designed for. I was warned to expect an uphill battle. That I was entering a world where other people wouldn't get it. That my child would either be seen as naughty and needing discipline or where I would be seen as a liar because the self destruction is saved for home where she feels safe. FASD isn't easy to explain and never will be. It's not all negative, although I think it often sounds like that. But it is a different kind of parenting. One where you learn to adjust your expectations and rejoice in the small things through the deepening levels of sleep deprivation.

Today's Guest Poster is Claire who is currently a full time parent to Annie, cat feeder and avid tea drinker. Professionally (although taking some time off to parent currently) she has spent her career working with vulnerable and disadvantaged teenagers; Particularly around sex, drugs and social injustice.

If you'd like to contribute a guest post about Adoption; FASD or ADHD to Life with Katie then do get in touch at


  1. Brilliant post - so comprehensive - found the line 'battling against a world that her brain isn't designed for' very familiar and very well put. Thanks

  2. This reminds me of our child so much, yet he doesn't have FASD. He has a diagnosis of autism, although we're not quite convinced that is it either. Neglect and attachment issues have a lot to answer for too!

  3. Thanks for sharing this. Fantastic post especially through the deepening levels of sleep deprivation!