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Living with Developmental Language Disorder

Updated: Dec 22, 2023

Bob and I don't live together but we share our daughter Emily. Emily has a developmental language disorder, which means she thinks differently. We always knew that she was different from our other two children and whilst it wasn't too much of a problem when she was really young, she was just really bouncy and was quite energetic all of the time. 

It was so tiring because we had to be on alert all the time and the demands on us were significant.  Both of us were together then but family life became difficult, just trying to run a house, support our other two children, advocate for Emily's needs, and try to get through the day. 


When Emily was little, a lot of the time I spent sleeping on the settee because she really wouldn't go to sleep. It didn't matter what I did, she just demanded my attention. The situation at home was quite high stress I would say, and I don't think my husband coped very well. He was in some ways very similar to Emily, and I think he was recognising that. She was like him when he was young, and I think this worried him desperately. He had spoken of how different he felt as a child and what problems he had through his school years. 


I think there was a lot going on in his mind, but we really didn't have a chance to talk about it because we were too busy trying to be good parents to the children. There wasn’t really any support, it was a challenge trying to get people to listen to me about the problems that we had.  We had such long waits to get appointments for doctors and professionals, we seemed to go from pillar to post, it was years that passed before we got a formal diagnosis.  She was diagnosed with DLD when she was 11 years old! 


She was almost at the end of primary by that time.  We had muddled through it. Somehow, we managed to get what she needed but I always felt that I let her down because I knew how much she struggled.  I watched her at home crying and upset because she couldn't keep up with things going on in the class. The demands on her physically and mentally were too much. It became clear that the way that her mind worked, and that she was happy to be by herself, didn't fit into what was demanded of her within an education setting. 


Teachers were willing to help as much as they could, but I think they really struggled because they just didn't have the skillset to give the support that she needed.  Certainly, putting her in a class with a support needs teacher really didn't do anything, it was a holding space for Emily, which only amplified her difference rather than supporting her. Nevertheless, we got through it.  Somehow. 


What it has done to my daughter’s confidence and mental health I can only ponder. There was no one offering any help on this front.  She doesn’t have the words to talk about how she feels, but as a mother you can see how negative the impact is on her. I see when her body is hunched over, and she goes quiet when she comes home. People don’t realise that access to services for ASN children are very hard to find, it becomes even harder for kids who don’t have the ability to express themselves in words.  


These professionals can completely lack that extra training to support kids who don’t understand a lot of complicated conversation and get overwhelmed by questions.  Kids often give the wrong answer because they don’t understand the questions, or they answer yes/no in order to cover up their deficit. Of course, that can hugely influence the outcome of the assessment, which often ends up in frustrations for parents because they know what’s going on with their children, yet this 30-minute interaction with a therapist or a clinician is the deciding factor. Just ask any other parent who has had a similar experience how this can place you back at square one. You are constantly on the go and you’re kind of forced into negative conversations, perceived as the complaining, problem  family. It really wears you down because you’re very much on your own. 


Unfortunately, my marriage didn't survive the constant stress day in, day out, trying to juggle so many things as well as being worried and vocalising frustrations to my husband every night. Probably not being able to share our thoughts and feelings just made us drift apart.  


Things became slightly easier when Emily went to secondary school. I think she found it less demanding because she had slightly more freedom.  By then we had found some external support from the SLCo, who had helped us to put in place a structure for school and also offered some support for social opportunities, which I think really helped build Emily's confidence. 


Emily's been connected to SLCo for a few years now and that has given her an outlet which has really helped with her emotional health and developed her creativity. It has helped me as a parent to be able to step back and I get a break too. I’m connected to other parents as well and also a member of the parent and training network. I’ve learned an awful lot of skills and an awful lot more about myself. 


The set up they’ve got is that you can join in when it suits you and that works for me.  It's a bit chaotic at times because we share Emily between two different homes and other relationships have now begun, but everybody is working together a lot better now.  


Emily is a really intelligent girl and whilst she has a brain that thinks differently, she has the most acute sense of others. She knows that there are other children who have experienced similar things to her and is very keen to be supportive of younger children.  She has taken up a volunteer role with a SLCo at a club, helping younger children. That’s developed an interest in a potential career in childcare. 


I wanted to share my story with other families. Things can get really bad and sometimes it does feel like there's no light at the end of the tunnel. But if you can stop and really recognise that you can’t fix this on your own and reach out to people who understand what it's like, it’s a relief.  I was tired and really didn’t know what else to do when I found SLCo. I wish I’d known about them sooner. I don’t know what it was, but I felt I was in good hands right from the first five minutes on their Helpline. They listened and really understood because the people that work on the Helpline have experience as parents themselves.   


Knowing that you can pick up the phone and just talk to someone or find out specific information is really beneficial. I'm sure that they'll be other mums like me that could never find the right information. There’s so much you can learn which really helps you be a better parent.  I didn't realise that speech and language problems can be fundamentally problematic as part of a neurodivergent child's brain difference, if a child has autism or ADHD. 


It’s great to see what she's become and how happy she is. It makes such a difference to me. I’ve worried for years whether she would be able to realise her hopes and dreams.  I used to feel so guilty because my own hopes and aspirations for her were likely not to be fulfilled, but I’ve learned that I just want her to be happy, in whatever way that looks. I think her dad feels the same way too.  


There’s a lot of emotional distress that goes on for a long time within families that support disabled kids, and I would encourage people to do something about it before things get too bad and there isn't any way back.  I know how it feels to think if you let the feelings out you won’t be able to cope so you just have to carry on, but it's not the best way. The best bit of advice I can share is seek help. 


We're all fairly settled now, with a happier and healthier family, but when you take a chance to sit and reflect on the choices and decisions you made, and what may have gone differently, there's a stark reality about how our lives may have gone differently by picking up the phone and asking for help. 


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