Thursday, 2 June 2016

What it's like to be a mummy to a child with speech delay

I've seen a few things coming up in my newsfeed about what it's like, what it's like when your child has a speech delay.

Both my boys have severe speech delay, what's it's heartbraking. Some days is quite sole distorying and exhausting. It's taken almost four years for my second son to say 'mummy.' Am not sure he fully understands that's me, he mostly only says it now when he's repeating me:

'say, mummy.'
'Say, please mummy, more water.' 

I cried the first time he repeated it back.

Our first born son, Pops, he's like his Daddy, a libra. Balanced, thoughtful, thinks through his actions, weighs them up. He's interested in others, wants to interact. So, when he didn't know the words, he took his time to work out a way to show me, what he wanted. Yes there was a horrible faze where he used to smash his head on the floor, be that carpet or pavement. Frustration, many children get this faze, I was reassured by health visitors. It's seen as normal. It does not feel normal to hold your son tight while he tries to smash his head on concrete, while you hold him, he smashes you. Better than the floor I would hear my mind say. Pure frustration, how scary it must be to not be able to communicate. I used to describe it, as living with a foreigner. He had his own language. He still at 5 years falls back to this, when he's over excited and talking fast or making up a story, he fills in the gaps for the words he hasn't learnt yet.

No one can prepare you for having to hold your son, count to 10 slowly, while he scratches, hits, head buts, kicks and screams. 

That's been my life with Bear. Also has a severe speech delay but angry too. He's the complete opposite of his brother. Built strong, stocky, small and uninterested in what you want. An Aries. Everything has to be in a set way, perfect. He has no idea of his strength and when he leans in am not sure if he's going to hit me or hug me. He gives the most amazing hugs in the world. He screamed and cried and throw things at me today, why? I offered him a plaster....he got a scratch on his foot from the garden.....he pushed his sister over, throw a toy at my head, screamed and cried. Why, cos I tried to do my job as his mother and put on a plaster. 

What's it like to be the mother of a child with speech delay. Heartbraking. When those little 'ask your child these questions' thing comes round on Facebook. What does it feel like. To me, it feels like I've failed. Bear couldn't tell you what his name is, his age, what his favourite anything is. Am not sure he could point to me and call me mother. Everly time I get 'how old is he?' I think through in my mind, do I explain? 

I guess having lived though it with our oldest, who now at 5 years can tell me almost his full name, that he's 5, who his brother and sister is and many other things. I feel hopeful. This time last year, he could barely speak, but now I can have quite a long conversation with my 5 year old. It may have taken an extra 2-3 years but he's getting somewhere. Am blessed to have him, he amazes me, but still I feel like I must have let him down. No one can tell me why, why he's been so far behind. As much as he has come on, he's still not up with his peers and his school are worried. Worried for him starting year one.

So here I am, with two beautiful, happy, clever, engaging and special little boys. Who when the outside world see they have no idea how hard their lives have been so far. How each day poses new difficulties to them, how do they explain they want to know or do something. How do they tell that other child, they did what that toy, or to play with them. My child has been buillied already, at 5, cos other Childern don't understand that he doesn't fully get what's going on. Each small thing, that another mother may think is tiny, for me is huge. Someone was saying how long it took their child to say 'mummy' I was like, almost 4 years! And I still count my self lucky, some mothers never hear that! 

What's it like when your child has speech delay? Everything takes longer. Leaving the house can be frightening, they don't pay much attention to me. They don't have much idea of safely. They will just run, run in different directions and sometimes I just don't have the strength to say, go to the park. Something easy for others. It's hard to 'discipline' I get 'my child wouldn't get away with that' or 'you should put him on the naughty step' 

How do I explain to my child, that small thing he did which upset you, is a problem, not cos he was naughty but that he doesn't fully understand social protocol. He's only 3 (he was when one of these issues came up.) He doesn't understand, and now you want me to punish him for not understanding. 

It's hard, it's sole destroying. It eats away at me, what could I be doing better, what else should I be doing, I need to work harder. I've let them down. It keeps me up at night. Then I remind my self, each day it gets better, they say a new word and it fills me full of hope, that one day, I won't have to explain 'my son has a speech delay.' I won't have to think through all the things he maybe trying to explain to me, I won't have to guess or hold him while I try and explain that we are getting in the car now and he can play later. I won't have to hold my breath and not scream at him, for pulling my hair out or scratching my face. That one day, he will hug me and say 'I love you mummy.'

Next time your baby, says he loves you. Remember how much that truly means. How important those words are, and if like mine, they struggle to say that yet, know they think it. 

Huge love to all the mummy's and daddy's to live with speech delay. 

These are some of the things which have worked for us. 

Singing, they have learnt lots of words by singing. We have a 'good morning' and 'goodnight' song. This helps them to understand what's happening but also they can humm the tune to let us know they are sleepy. 

Counting on the stairs, every time I walked up and down the stairs, I counted. From when they where babies, through to holding their hand walking up and down. So they could count very early on. 

Colours, we have different colour plates. At dinner time I would ask him to pick a colour by saying it. It's still hit and miss but helps.

Naming things, their draws have their names on. Sounds simple but it got them used to what their names looked like early on. Also gave them ownership of their things. Their chairs have their names on and even though they couldn't say their names they would pick the right chair to sit on. 

Find things which fit in with your day, I found many things where just to advanced, like flash cards. In the bath is a great time to try things. We use very simple flash cards in the bath, sing songs and tell story's. 

My advice is to get help early. At the two year check you can be referred. It sounds early but the first step is a hearing test. Getting this done early is really important. Also you know your child, stick to your gut.

If I had a pound for every time I've heard 'they all learn in their own time.' I would be rich! Yes they do, but when your child is 2-3 years behind this is such a depressing thing to hear over and over again. Yes they do and fingers crossed mine catch up. 

Many people just don't understand how much harder daily life can be when a child doesn't understand the world around them. I know we are all as busy as our hands are full, but please don't hear the age of a child and assume that they should be able to understand. 

1 comment:

  1. It's really heart breaking when your child has speech delay and you see other kids doing everything and not your child.its more frustrating for a child too.i hv a 4yrs granddaughter who has speech delay I feel very low at therapy has helped. V must be positive in life they will catch up with other kids soon��