Our Girl is special. I know, I know, ALL children are special but she’s special and ‘special’.
She has global developmental delay including speech delay, poor fine/gross motor skills and sensory integration problems and might be on ‘the spectrum’ as well. But on the plus side, she is beautiful, funny, inquisitive, easy going, secure and happy and well liked by children and adults of all ages. Some days we are in our lovely bubble where all is fine and some days we are forced to remember that we are on a journey to who knows where and we don’t know what’s round the corner…
I keep trying to remember how I felt at each stage of discovering my Girl’s limitations and difficulties. But it’s so hard to really get back into that frame of mind. I think the only way is to delve into old emails and see what I was writing about her at the time.
The Girl is nearly 2 – went to paediatrician today cos she’s not talking yet so she might be starting speech therapy and physical therapy cos she’s still very wobbly at walking as well. She’s a lovely thing though, still happy and bubbly – the Dad found his smurf collection in the attic and she’s loving them!
My Girl is such a lovely little thing! Always smiling, full of cuddles and she’s beautiful. BUT she’s always been a bit behind in her development which I first tried to pick up with the doctor when she was about 18 months as she wasn’t walking or attempting to talk. It’s taken a lot of examinations, assessments and various professionals but we’re now getting speech therapy and they think it might be dyspraxia (they worried us by saying it could be cerebral palsy but a MRI scan showed nothing). Doesn’t matter whatever it is, she’s my little treasure!
We love the Girl so so much but it’s hard. She is not trying at all with potty training, we have good days and bad weeks….we’ve tried stickers, toys, marshmallows, pretty pants (that’s ‘panties’ to you americans), shouting, reverse psychology, talking about babies v big girls, confiscation of fav toys…..everything….but she is not ‘engaging’ so we have to face the real prospect of her starting big school in nappies. Her talking is still very basic, just had to cry at the speech therapist to get some more sessions. I have a child who is starting school in 5 months who has never had a real conversation with me…I have NO idea what’s going on in her head, she has her little phrases ‘baby birdies hatching outta eggs, mummy get worms for dinner’, blah blah blah…rubbish, rubbish, rubbish – all mainly a load of nonsense that has no relevance to any real thing that’s going on. But if you ask her what she wants to do, it’s all single words ‘beach’, ‘jelly’, ‘game’ sometimes with ‘please mummy’ afterwards (very polite for a girl who is almost mute). She can count and she knows all her colours but she can’t make sentences and still struggles with conforming to normal behaviour like other kids her age are starting to do quite well e.g. sitting still in a group listening to a story, walking beside me and not running off.
Anyway we just have to plod on and try out best but no-one seems to know what’s wrong with her. We are going through the statementing process at the moment so fingers crossed she will have full time one-on-one support when she goes to school. She will need so much help as she can’t dress/undress, can’t do zips, buttons etc. needs help at the toilet or with nappies, can’t use cutlery, can’t hold pencil properly, climbs on everything, escapes if there are unlocked doors, will not sit still and concentrate and most importantly can’t communicate so doesn’t really play or engage well with her peers. At preschool she is starting to play with the 2 and 3 year olds who seem to have a similar level of playing to her but the 4 years old are far too sophisticated for her.
Scary that in 2 weeks she’ll be in school…really scary given that she can’t even talk still…it’s all ‘I love cats, I love dogs, look mummy a skipping rope’ I just hope they don’t have to do a show and tell about their holidays in the first week. ‘i big girl, i wee and poo in the loo, i love cats’. actually now that I write it down it doesn’t sound too bad but it is, believe me!
I think I want a sibling for the Girl but I really want a perfect sibling….not just any old child and not another with special needs….but beggars can’t be choosers. I wouldn’t swop her for anything, she’s wonderful, really really special and I have high hopes that she will end up a great adult but it’s hard. It’s making me a bit mean-spirited. We have a friend who’s 3 yr old child G is really ill. I read all the horrendous medical details that this tiny mite is going through with such cheerfulness and want to cry for her. Then I read about the good moments they have together in this awful cloud of bad and that usually makes me want to cry for the Girl and us. G’s language seems more advanced than the Girl’s and her mum has been telling everyone lovely details like G calling all the nurses ‘my little sugar lump’ which she has picked up from Fireman Sam. I just find myself feeling really sad as the Girl wouldn’t know the difference between Fireman San or The Wombles and certainly could not memorise and repeat a line in the right context….sometimes I wonder if it will ever happen. Anyway it’s all so illogical because we have so much and they are in such a bad place so I should just get over myself really.
In 2016 we are still on this journey and it hasn’t got any easier! But she’s still special…
Today’s earworm: Destiny’s Child – Independent Women
Last night’s different dinner score: 3