I am a mum to two beautiful monsters; a female shaped monster and a male shaped monster. The female shaped monster is 6 years old, beautiful, and crackers. The male shaped monster is pretty much the same, except that he’s 4, and is special in a different way.
His birth wasn’t particularly stressful, I gave birth naturally after having an emergency C-Section with the female shaped monster two years before. He came quite quick and did everything a new-born baby should do. We had to stay in for a couple of days so the Dr’s could keep an eye on my Section scar, but nothing particularly seemed up. Then they told us he has a Sacral Dimple, which did ring alarm bells. My mum has spina bifida occulta – and I knew from experience and research that this could be an outward sign.
When he was a couple of weeks old, we went to a children’s hospital where they performed an ultra-sound scan. From this they told us everything appeared closed. From knowledge of my mother’s condition, I know that nothing can be confirmed without an MRI scan. However, for whatever reason, they refused to do one on my son. It is something I am pushing for, but I’m waiting a while until he’s less wriggly.
Yes, he’s wriggly. Still, at the age of 4. Other than his little dimple, the male shaped monster has other wonderful ‘quirks’. You’ll have to bear with me while I explain…
I think I’ve always known that he’s (for want of a better word) special (yes, I know all children are special. But, please bear with me). He tantrumed more than the female shaped monster, especially when he is in a new situation. Just before his 1st Birthday, there was an accident, where he ended up in hospital under sedation. Or, he would have been had he calmed down enough for the sedation to work. Four hours it took before the sedative worked on him. At birthday parties he would go slightly mental if he saw someone with their face painted. He still gets upset if I put make-up on. He wasn’t progressing like the other children his age. He wasn’t crawling, he wasn’t babbling, he wasn’t feeding himself. I voiced my concerns then to the GP, who just pooh-poohed it saying that all children are different. He’ll do stuff when he’s ready.
By the age of two, he was walking, but not babbling still. We potty trained him in less than a week. It took the female shaped monster nearly a month. Although this should have filled me with glee, it didn’t. It scared me slightly. Aren’t boys supposed to be harder to potty train than girls? He wasn’t interacting well with children of his own age, but would play with his sister or by himself beautifully. He could do jigsaws and put things together extremely well.
By three, still no sounds, never mind words. I was frantic by now, as he was due to start part-time nursery in September. No one would listen to our concerns, until a chance visit by the health visitor, in which I broke down in tears, and he hid behind my legs the entire time. All of a sudden we were referred.
We had our first appointment in October. We are still not moving very quickly. He still doesn’t speak, although he is having speech therapy, with what is quite possibly the worst speech therapist on the planet. The last session, which was before Easter consisted of her showing me ten makaton signs once, and expecting me to train them to memory. Er, no. He still struggles with new situations. If we go somewhere – for example, physio (as he is also extremely clumsy), he will sit on my knee and curl up into a ball. If I then try to move him, he makes himself extremely floppy and so impossible to maneuver. He still throws mega tantrums – in one example he was that upset that Nanan had left without him, he punched me in the stomach. Unfortunately, I was having an Endo attack at the time, and ended up throwing up on his head, which made him throw up on my feet, and so on… Another tantrum was for the same thing – his Nanan had come to give me a driving lesson, but then left without him. I carried him down the cafe, while he’s screaming the entire time. When we got there, he was still in full voice, thumping me, pulling my hair, not letting me sit down, go home, go to the shop for some pennies, or go into the cafe to order. A friend was sat there the entire time, with a look of what I can only describe as pity on her face.
As of yet, we’re not entirely sure what it is with him. Autism, Aspergers, Dyspraxia and Extreme Shyness have been bandied around. But, the medical professionals have never seen a tantrum. He had one at school last week, because he had fallen over, and wouldn’t let anyone clean him up. They rang me, but as I was covered in chicken pox, had to send the Mother in law to fetch him home. She didn’t ask the right questions. Saying that, she’s only seen him tantrum once as well – in which she said to us, ‘please don’t leave him like that with us again. It was heartbreaking’. My simple reply was ‘welcome to my world, each and every morning.’ She didn’t say much after that. Grandma (my mum), has experienced it once as well. She rang in tears, in sympathy for me.
It’s even harder because his speech is that of an 18 month old. He uses single words coupled with grunts and pointing, and his vocabulary is extremely limited. I’ll list a couple of his words as he says them.
Nananananash – Nanan’s (the Mother in Law)
Mimi – Dummy
HoHo – Rudolph the Red Nosed Reindeer plush cuddly toy which was a Christmas Present off one of my best friends.
Ooopshtairsh – upstairs
Miaow miaow – cat
Peeesh – please
Coo – Thank you.
Grashe – Grace – his friend
lu you – love you
As of yet, we don’t claim any benefits for him. The chances that the medical professionals are just going to turn around and say there’s nothing wrong is just too high, and we’re too worried that we’ll have to pay everything we ever claimed back if they do. I don’t want to feel even more fake than I do. Every single day is a struggle with him. He craves my attention when I have to work. Right now he’s sat at the side of me grabbing my arm. He was playing a few minutes ago, but when he realised my attention was elsewhere, he came for a squeeze please. He’s anaemic, and has to have a lot of medicines. He gets knackard walking anywhere, and sits down in the middle of the pathway with not a care in the world. He’s affectionate, but he’s a little sausage when he wants to be (punching me in the stomach)…
We have a new referral to a children’s’ hospital next month, with some specialists. I’m counting down the days.