The Parents Perspective.

I wake up Niquita at half 7 everyday for school. She still can't tell the time but she knows if I'm a minute late or early. And god forbid if you aren't on time, all hell breaks loose!
I have to wake her up the same everyday, using the same words the same actions. So I switch her light on, and say "time to get up sweetheart, lets go get ready". It has to be me to wake her up, and it has to be my voice she hears. I then have to leave her room and wait for her downstairs.
I always have her breakfast done ready, in her pink bowl and pink spoon, this has to be the same everyday. We once had an incident when her bowl was broken so I'd replaced it with another pink, but it wasn't the right shade of pink, that didn't go down well.
Usually while eating breakfast she'll change her mind, telling me she doesn't like it today or she doesn't want milk today. Due to the sensory processing disorder, she's not being fussy her oral perception changes everyday.
Then it's time for getting dressed. I have her clothes piled in order for her, it has to be the same everyday, pants, socks, skirt, t-shirt, cardigan. I cut all labels out of the clothes because they irritate her skin. And she wears her socks inside out because of the seam! I help her do any buttons and make sure everything's on the right way round.
Teeth brushing is a pain everyday, she has a pink toothbrush, we have to hold her head still to brush them. Due to the sensory issues, brushing her teeth and hair can be painful as her bodies perception to this is pain. We usually have tears or physical outbursts over teeth!
Niquita has an app on my ipad so she knows what she needs to do in order every morning. Communication with her in the morning is very limited, her brain is usually overloaded so letting her take control of we routine is so effective. She comes to me when she needs help, and doesn't need to ask because I know what's needed.
I have a communication book with her school that I write in every day, to tell them how Niquitas been and any problems etc. Niquita knows about this and I always discuss with her in simplified terms what I'm writing and why.
Niquita often misinterprets what I say or doesn't process my words properly so I make sure that she understands and if she doesn't that's fine ill find a different way to discuss with her.
So once I've grabbed all her bits and made her drink for school in her pink bottle, we go get in the car. I play whatever music she wants to listen to, thank god she's got good taste!
Once she's in school she's perfect! They have a rigid structure and visual aids so her behaviour is completely amazing. Hence why I've had a job getting the school to listen and believe me. I've had many times where I've shut myself away and cried tears for hours. As a parent I've felt alone and isolated and when the school refused to believe me I felt like maybe it was me and maybe Niquita wasn't disabled at all. That basically I was just a shit mother. I still have days like that now. I want to make things better, and to protect my daughter from the wide world of ignorance and evil! I know that's impossible but somedays I feel pretty useless. Other days when I get the littlest of things right with her I feel like the best mum in the world. Parenting certainly is a roller coaster but when you have a kid that's got special needs its an unpredictable roller coaster at times, not knowing where the peaks and troughs are.
I pick Niquita up from school and will know the minute she steps out of the door what mood she's in. Just from her face. She won't tell me that of course but I'm lucky she wears her heart on her sleeve. She struggles socially at school with her peers, they'll say hello to her and she probably won't answer. That's just her way though. She's not being rude, but she doesn't understand social expectation and social rules as we do.
We have to take the same route home every day, even if there's traffic.
When we get home she has a snack of her choice, then ill do some sensory activities with her, to awaken and relax her senses. She then goes to her room in the dark, turns her star lamp on, it's cool it projects stars and galaxies on the ceiling, and she relaxes under her weighted blanket. It applies pressure to her body which calms her down.
Most days my son will interrupt her and then we have a problem. Tantrums that last for hours. Physical outbursts and verbal lashings occur quite often. I've been kicked hit scratched in fact you name it, it's happened. I don't love her any less though. It's her way of venting her feelings. More often than not if I hold her in a bear hug I can calm her down.
Tea time can be troublesome, but before she goes to school she knows what's for tea and I remind her when we get home from school. Again she has her pink plate and cup. Sometimes she'll eat it all other times ill be lucky if she eats any. Just depends on how she feels. I never make fuss out of the fact she doesn't eat, it's her choice and if she was hungry she would tell me. Making a fuss always equals making it worse!!
Bathtime is always the same, Niquitas bath water must be the perfect temperature and the perfect depth, if it isn't you won't get a chance to rectify, she won't be getting in! I wash and dry her and give her shoulders a massage to wind her down. Her pjs are laid out in order for her to put on.
Now bedtime has always been an issue. Seasons are a bugger, even with her blackout blind. In the summer she is far worse, because at 8pm it's still light, therefore in her mind not bedtime. A few months ago I had a 6hour tantrum till 2am when she was sent to bed at 8 and obviously didn't think it was bedtime cause it was still light.
Every night I read her a story and tuck her in, tell her I love her and then shut her door. Noises spook her so having her door shut is a great idea. She gets out of bed every night to check the front doors locked, asks what's the buzzing noise is (the lamp post) and then tells me she can't sleep. I have to say the same thing. "Go back to bed, shut your eyes and think what your going to do tomorrow, good night love you". And off back to bed she goes.
Just recently she's only been getting out of bed the once, but we can have upto 10times of the same thing before she goes to sleep.
All in all my daughter is hard work, challenging but absolutely worth it!! She's my star, she's determined, articulate, and to hell with anyone who thinks a kid with special needs isn't worth the time of day, cause if I could do it all again and change anything I wouldn't. For all her problems Niquita has a positive quality to counter! I love being a mum even with all the hard times, they make you appreciate the good ones so much more!