A plethora of challenges

How has your summer been, friends? It feels like yesterday that I was wiping away a tear at being handed Big’s registration card as she left Pre-school. I feel like I fell asleep and missed a chunk of the holidays. They’ve whizzed by.

Sleeping is not something I’ve been doing much of, though. Medium has always been a tricky sleeper. Ever since she was tiny, she’s bed hopped in the middle of the night. This has never bothered us. She would just snuggle up and go straight back to sleep. In the last month, this has changed drastically. She wakes several times a night and just screams. She’s awake – it’s not a night terror – but there is no reasoning with her and, as yet, we’ve not found a way to calmly settle her. She can be up for hours, intermittently screaming, crying and settling. A nasty ear infection and perforated ear drum hasn’t helped. That, coupled with her insistence that she can’t fall asleep unless I’m in the room, is both worrying and exhausting.

I had successfully employed the Gradual Retreat technique when she insisted on me being in the room some time ago. I will brush that one off and try it again, but discussions with the Health Visitor about the midnight screaming haven’t really helped. She believes it’s associated to Medium’s developing imagination and awareness of her dreams. I’ve bought books to read to her to help her understand this, but I don’t hold much hope. I don’t hold much hope of ever sleeping again. I’m averaging between three to four hours a night and I can feel my grasp on reality slipping a little. I made a cup of tea this morning, then swiftly threw it in the bin and put the teabag in the dishwasher. It’s amazing how your ability to function deteriorates along with your sleep.

Alongside employing sleep training techniques with a very stubborn Medium, I’ve started my journey back to health and fitness. I’ve joined Slimming World and the gym. Dieting with a side of sleep deprivation is hard. My body is crying out for chocolate, crisps and caffeine to get through the day but, as yet, I’m staying strong. It’s fine to fall asleep in yoga though, right?

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A plethora of challenges

Fighting for Big

I’ve alluded to the issues that pre-school have identified that Big is struggling with. Being the consummate professionals, they don’t – and won’t – label her. Something I am hugely grateful for. She’s four. She has a lot of growing up to do.

At the beginning of last term, they secured extra funding for her to up their adult:child ratio so that they could spend more time with her. How they managed this without the supporting statements of a million professionals is extraordinary. Like I’ve said before, Big’s pre-school is outstanding. And not just because Ofsted say so.

At a recent meeting to discuss her transition to school, They – the faceless decision makers that hold a child’s future in their hands – decided that Big’s primary school will be able to meet her needs, despite that place having not yet even been offered, without extra support. I received a letter that was so badly worded it took me several re-reads to work out exactly what they were saying. I even had to pass it by pre-school’s supervisor to check I was reading it right.

Let me be clear: Big certainly doesn’t need to go to a special school. Her issues are not severe at all, but pre-school maintain that she will need extra help to reach her potential. I went to our GP to ask for a referral to the Child Development Centre in order to get some sort of paperwork to support their concerns. The CDC refused to see her and referred her to Speech and Language, who promptly discharged her and referred her back to the CDC. Unwittingly, I’d entered a playground of swings and roundabouts where reaching the top of the slide seemed impossible.

We’re incredibly fortunate to be able to engage an educational psychologist privately. I am incredibly fortunate to have received a fantastic education and having been brought up with parenting that resulted in my becoming a tenacious and confident adult, willing to question to status quo and fight for what our family needs. I lucked out with Lovely Husband who supports me unequivocally and, when I said we needed to pay for an EP, didn’t even question me. Like I’ve said before, he rocks and he is my rock.

Yesterday, the educational psychologist visited us at home and took Big through a battery of tests. Some that I didn’t even understand myself. Big’s unwavering cooperation and concentration was brilliant and I felt immensely proud. The EP will visit her at pre-school the week after next to get a rounded view of her in two different environments.

Today, the EP emailed me her initial thoughts and she confidently believes that Big has a Specific Language Impairment (SLI): a type of speech, language and communication need. This means that, while she is as able, bright and healthy as other children, she has complications with talking and understanding language. This could be a legacy from her hearing impairment days, or, more likely, something that developed before she was born. Our bright little button talks ten to the dozen. In fact, she never stops. Much of her monologue though, is irrelevant – a trademark of SLI. She has ideas in free fall, but she can’t necessarily articulate them.

Big needs instructions and questions posed to her in a certain way. If you ask her to, for example, pass you the tractor after she has put the car behind her back, she’ll give you the tractor and forget about the car. Instructions need to be clear; ask her to put the car behind her back, let her do that and then ask her to give you the tractor and she’s there. Her dialogue can be muddled: She will talk about what she wants to talk about, despite the conversation you were engaged in seconds ago. Most importantly, children with SLI can find it hard to join in and follow what is going on in the playground, and that epitomises the concerns that pre-school rightly raised with us and it’s that which I most want Big to be able to overcome. I want her to enjoy meaningful relationships with people that have her back.

SLI can (and hopefully will be) short lived. It can affect children long term. Either way, children with SLI need appropriate support in and out of the class room. I have already been back in touch with Them and they have agreed to reassess Big’s needs as soon as the ed psych’s report is ready. Good job. It’s not as if I would’ve let it lie. Will this guarantee her the funding she needs? No. But it re-opens the conversation and those that know me, know that I can talk the hind legs off a donkey.

But how do I feel? I feel angry for the children of parents who may accept the status quo and either can’t afford to or don’t have the confidence to question it and hire their own experts. How will children with additional needs ever succeed if those needs aren’t supported? We could’ve left it; we could’ve taken Them at their word and assumed that because they said they’d reviewed her file and she’d be fine, that she would be. It breaks my heart to think of her beautiful little face becoming worried as she tried her best but couldn’t quite understand what was being asked of her.

I question myself. I question if this is my fault; did I grow her wrong? And then I chastise myself for even thinking it: Big is wonderful. She’s a bright, kind, funny and beautiful little girl. She’s an eternally bubbly and happy little soul, despite the challenges she faces. I didn’t grow her wrong: I grew her and this is part of her story. She’s my amazing daughter. Maybe more amazing because of this. I’ve lost count of the amount of people that have looked at me like I’m mad when I’ve told them of pre-school’s worries. That clever little girl has found a way already to muddle through. But I don’t want her to muddle through. I want her to fly. I will make damn sure she does. No matter who I have to convince, no matter who I have to harangue. The fight is on. And I’m ready to step into the ring. My little girl will fly, even if I have to blow the air under her wings.

 

Fighting for Big