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

I've had so many lovely messages about my blog, What it's like to be a mummy to a child with speech delay, that I thought its time for an update! 

We have two boys with a speech and language delay. If you have read my last blog on this subject you will have an understanding on how hard day-to-day life is. I wrote that blog in June 2016. Its now June 2017 and our life's are so different! 

In just one year, we have gone from our middle boy, Bear, not even being able to say his own name. Let alone tell me what hes felling or what he wants. To now, hearing the words 'I love you so much mummy.' He's just turned 5, and now knows his name, our names and can tell me how he is feeling. Yes, he can still trip over his words, and some are hard to make out. He may not have formed his sentences beautifully or used the best English but we are leagues away from where we where a year ago. 

I was so worried about our boys starting school. Bear a very strong little boy, who pretty much had no idea what was going on around him. This lead to him acting out and me having to hold him tight while he hit, kicked, pulled my hair, scratched my face and arms, like holding a scared wild animal. He is a little wild one. Its gone from pretty much daily, to once in a blue moon and mostly when added things are in the mix like over tiredness.  

Our oldest, was in the same boat, but without the aggression. Have they fully catched their peers up? No but I feel like we are finding our way out of a dark forest to a path which will lead us out. We are getting somewhere. Their school have been amazing, at understanding their needs and helping them to get to a point now, where they are starting to read and write. For a very long time, I couldn't see the day our boys could say their own names, let alone write them!!

Can anyone tell me why they have a delay, no. So far they have not found any underlying conditions, or reasons for it. 

They now play together, this may seam small but for our boys its huge. Before they had no way of communicating with each other. Imagine trying to play a game with someone who spoke a different language to you? This lead to a lot of aggression, frustration and upset. Yes, they are to little boys so we still get disagreements but its no where like it was! 

(One thing which really helps me is 'it goes away.' When they arguing/disagreeing over something, it gets put away. All I have to say is 'what happens when you argue over something?' They reply sadly, 'it goes away.' Mostly they then hand me the item or they work out between them who gets to play with it. This has helped me no end! Am trying to teach them not to fight over it but work it out between them, nicely!)

So this week they got a certificate from school, for being a Superstar Learner. Each week, different children are picked and they get to stand up and have their teacher talk about why they have been picked. The parents get to go in and see them getting their certificate! I was blown away with the fact that both our boys where picked in the same week!!

It was also a non-school uniform day too ;)

Am so proud of them I could burst!! We have gone from not even knowing their own names, to being a Superstar Learner!! 

Are we out of that dark forest yet? No, but we are making our way to the path. I count my self so lucky as for many parents they wont get to find that path. I feel very blessed to be thinking to my self that one day, one day soon I wont have to explain to people 'he has a speech and language delay.' That this dark cloud hanging over our life's may be lifted.

Whats my advice for other parents, your not alone, when your child is screaming and hitting you in Tescos due to the fruit being empty and not understanding you explaining why. I understand, I have been there and it will get better. Get help and support, fight for your child to get support in school. There are lots of brilliant support groups online and don't feel like you are alone. 

Am not sure if they will ever fully leave this behind or if we wont find out they do have something later down the line. For the moment though, I feel like I can breath a little and our day to day life is getting so much easier.  

People judge, hey we all do it. I get that, but after the one millionth time I have had to explain 'they have a speech/lang/understanding delay' it gets quite heartbreaking. I know they have come so far, but to the outside world, they haven't seen our struggle. I get it, am putting my self and my family out there, by blogging. Sometimes its hard. 

June was some time ago......I got to this point in writing out this blog and I got really upset and left it. 

I was writing on a forum about how my oldest was given something non vegan at school by accident and advice for how to handle it. (The school where brilliant at making sure that it wont happen again and as hard as it was at the time, I was happy with how they handled it.) I had noted in my post about how my child has an understanding delay so cant always explain what he can and cant eat. I got some really horrible comments, all about how my child should be able to explain hes a vegan and what he can and cant eat....

I posted a link to my older blog. A lovely friend sent me a message, she had said, she didn't understood why I had shared what my life was like living with speech delay.....till she saw the way I was treated in that post. She messaged me to say, now she understood why I had shared it. That she was so shocked I had to explain why my 6 year old couldn't communicate what he could eat. 

I was so upset over it. Looking back now, all these months later, I still feel sad that I have to explain but at least I know that sharing my story of living with it has helped so many others, and that its helped others to see my point of view too. 

So here we are at the start of 2018....

Wow, our oldest is now 7, he loves to create books/stories! He sits and comes up with a story and creates a book! Glue and sellotape does not last long around him!! Every day, he gets a little clearer, he is learning so fast and now reading signs as we are driving - I know your much younger child may do this but to me its huge!! 

Am scared about him starting juniors school this year as he is behind but he has done such a great job of trying to catch up. His school/teacher have really been there for him, and us. Hes caring, kind and has such a huge imagination, am excited for him. 

Bear.....well bear is still my wild child, and we have noticed a big stammer coming out now, where he is giving him self more time to find the right word and how to say it. Going into year 1 was a huge change for him and he fell back into his old ways. Hitting out and being really horrible to those around him. We kept at it though as we knew it was down to the huge change he was going through. 

Christmas has felt like such a big mile stone, he is really finding his feet now. Making friends and being able to tell me how he is feeling. I know his favorite colour is green, he loves dragons, dinosaurs and still his old love trains. When he did go back to his old ways, am not going to lie, I felt broken by it. There is nothing like having to hold your child down, singing to them, holding them, while they hit, kick and scream at you. Trying to bite you, pull your hair and hit you. He is very very strong, hes small but wow he is a powerhouse. 

As hard as it was, it was a real wake up call to how far he has come, that was my life, day in and day out at times, trying to calm him. Now he is just him, happy, friendly and so good at building. I can really see the little boy under all that scared anger. 

Dot, our youngest. She has hypermobily, and now a confirmed speech delay. My 3rd child with a delay....Quite normal as they learn not from you but the older child. The difference with her, is she is so clever! She cant say shoes very well but you say 'go get your shoes' and off she goes and starts putting on her shoes. She knows when we are going out and there she is with her shoes. At the same age, with the boys, they would have had no idea what I was asking them. The doctors are not worried, they know she knows whats going on and the words are coming. 

Being a mummy to a child, well three children with speech delay, its very easy to feel like I have failed them some how. It is heart braking, and so horrible having to explain all the time.

Bear loves to say hello to people, hes a caring little boy, but he doesn't get that strangers are different and he doesn't need to say 'hello, goodbye, I love you,' to everyone....That's just him, well both boys, they list who they love and then they add 'and everyone.' So if a little boy says hello to you, and adds love you. Don't think hes crazy, maybe he really does just love everyone and maybe his mother thought she would never hear him say that, to anyone. Maybe she spent a hour getting him to calm down over some tiny thing that wouldn't even enter your head could be a problem. I guess what am trying to say is, be kind. That child whose having a brake down in the supermarket, that child who just throw a toy, that child who is really quiet. That mother who is explaining for the millionth time, why her child is different, please be kind. 

To all the parents going through this, to all of you who may never feel like you are finding a path out of that dark forest, you have my love, my prays,  my good thoughts and you are not alone.

Alice xx