By Aileen Burnett
My name is Aileen, and I live with my two children, Isaac, who is 13, and Ozzie who is almost 8. Ozzie has Developmental Language Disorder (DLD) and I am passionate about raising awareness of this hidden condition for benefit of other families. So let me tell you about some of the ways in which DLD affects our family.
School / education: Ozzie’s difficulties with language became apparent when he was very young. The health visitor agreed he had a language delay but that it was too early to intervene and kept him open to follow up. He was getting to a point of being able to go to the local school nursery class at age 3. That experience was awful! It was a large open space with about 50 kids, very noisy and it seemed difficult for them to adapt the environment or system to suit Ozzie’s needs. They referred him to Educational Psychology and it felt as if they were trying to locate the difficulties within Ozzie, rather than looking at what they needed to do differently to meet his needs. Ozzie didn’t settle and I made the decision to send him to a local private nursery, that my older son had gone to. They were nothing short of outstanding! They accommodated Ed Psych and SALT appointments. They sent their staff on training. They used all the strategies they were taught consistently, and were a massive part in developing Ozzie’s confidence and sense of safety with others. When the time came to think about primary school we all agreed that mainstream would be unable to meet his needs and applied to the Local Authority for a specialist placement. He got a placement in a language base attached to a mainstream school. The base runs for 3 years as most children are then able to transfer to mainstream. The school is just amazing. They have regular SALT input who provides advice and training, and individual and group input where indicated. All teaching is differentiated to each child’s needs and delivered using the SALT strategies. He gets an ASP every term which allows us to track his progress. I can’t speak highly enough of them. At the end of P3, we all agreed that the jump to mainstream in P4 would be too much so we applied to the Local Authority for further specialist placement. However they were worried about the impact on his self-esteem and identity of being in an ASN base, which is a worry I shared. It felt like being between a rock and a hard place. So, incredibly, they offered him another year in his current provision, but integrated with the mainstream P4. It’s the perfect middle ground for Ozzie and will provide him with the best change of successfully transitioning to mainstream next year.
You’ll note I didn’t mention my older son in this huge paragraph! All of this happened during my older son’s first year at high school, his first experience of heart break, his first year of being a co-Santa with me. All of this angst and worry and thinking about these huge decisions and learning about education and the law and the LAs responsibility took me away from Isaac. Luckily for me, he is mature and kind and wise beyond his years. But there is no doubt he has missed out on a level of support he should have had as a result of this. And I know we will likely have the same process again at different stages. And we’re only at P4! I can’t let myself think too far head about getting to mainstream or not and definitely cannot even fathom high school! I just know it’s always going to be an issue to make sure I get my head round what Ozzie needs, and make sure he gets it, and that has an impact on Isaac.
Social and Leisure Activities: Ozzie used to go to swimming lessons. It was the only out of school activity I could get him to. He did one to one lessons as the class was too distracting for him. I think he enjoyed it, the teacher was great, but one day he had a meltdown and begged me not to send him back. This was so sustained, and heart felt that I agreed. It was only a whole year later, that he was able to tell me he didn’t like it as the teacher didn’t get in the water with him. Which for a child whom communication is an issue, makes perfect sense! I’ve tried to get him to go to Beavers, arts and craft classes, drama classes etc etc!! But the fear overwhelms him. My sense of it is that life is just pretty scary. The unknown is a big thing. Parties of school friends is usually okay, because he’s in such a small class he knows them all well and there’s normally not tons of kids. But I absolutely have to stay with him. There are lots of activities I think he would enjoy engaging in, but I haven’t found any that can be delivered in a way (eg with small numbers and clear, helpful communication and lots of nurturance and not much distraction) to suit his needs. I used to send Ozzie to an after-school club, and they were great. But it was busy and loud, and he was already exhausted. I was approaching breakdown point of what to do when he was awarded DLA so I used it to reduce my working hours, so he doesn’t need any out of school childcare at all. That has been a saving grace. But really restricts where I can work as I need to be home before and after school.
Family and friendships: I’m so lucky with my family. My parents were teachers, my sister and brother in law are teachers and my other sister is a doctor. They all are supportive and understanding. However, the only person I can ask to babysit are my parents. My mum was a special needs teacher for most of her career, and she and Ozzie have always had a special bond. I think because she has specific skills in getting on a child’s level he always felt listened to and communicated with. I’m so grateful for her and her support every single day. Ozzie can find it too “peopley” when all our family are together (we’re a pretty chatty bunch!), and they understand when he hides away in a quiet room to get a break.
Ozzie has friends in his school, but because he travels to a base class, they are not local so hard to see out of school. My very best friend has a daughter who is the same age. They are friends but the DLD does get in the way sometimes. For example, the closer we get to the end of term the more Ozzie needs to just zone out after school, which is often the time his friend comes to play. And he just isn’t capable. My friend and I are so close so we can talk about that and find ways round it. She has a sound understanding of the entirety of the impact of DLD on us as a family unit and on Ozzie’s emotional wellbeing as well as the straightforward communication angle, which massively helps. I can’t let him out to play with kids in the street though without close supervision, in the way I would do his older brother. So, DLD definitely impacts on his social life and world.
DLD can get in the way when the children of friends and family are excelling in language and educational accomplishments. Their parents should be allowed to celebrate and enjoy their child’s achievements, but I can be overly sensitive and find it hard to hear.
Siblings; My oldest is 13 so prob needs less time with me anyways, but he has always had to come second place to Ozzie, which is just awful. If the three of us are somewhere, I absolutely have to be with Ozzie. If Isaac needs or wants to check something out and Ozzie doesn’t want to, he has to go alone. He is curious about the DLD and learns about it and finds ways round it for himself. But sometimes he gets annoyed that Ozzie appears to get away with things he wouldn’t have at that age. Which is probably right!
Routine: We need to plan, plan, and plan some more! Ozzie is at an early stage of understanding time concepts so that leaves a sense of not knowing what is going on, which is scary and unpredictable. He has a calendar with where he’s going on it and we cross days off at nighttime and count sleeps till he sees his dad or till he gets time off school or whatever. We repeatedly go over what is happening that day and the next day. Especially at weekends where routine is different. We can be a wee bit spontaneous but it’s a complete hit or miss how well that will go down.
Holidays: we have gone abroad to France for the last four years. I think if I hadn’t done that when he was so wee, I probably wouldn’t contemplate it now. But he LOVES it! I’ve stopped trying to persuade him to go to kids’ clubs, and just accepted that the holiday for him is an escape from the pressure of a life where he is constantly on the back foot and having to work so very hard to just get through the day. On holidays I can be totally kid led, what does he want to do and when? Go to the pool? fine. Lie in bed and watch Netflix? Fine. Play with your toys? Fine. Colour in? Fine. The holiday is completely Ozzie led. And he thrives on it! For me that means that a lot of my worry and stress is lifted which makes it a bit of a holiday too, but I’ve had to let go of fantasies about having the kids occupied and I can go to the spa! It also means it’s very little Isaac focused. I am better at booking in things for Isaac to do and Ozzie will just have to accommodate it, but when I plan activities and the timetable it’s definitely a consideration in my head of what can Ozzie tolerate.
Other stuff: bedtimes are difficult. It’s where all his fears and vulnerabilities come out. I have to sit with him until he is sound asleep. Can be ten mins or two hours. It gets harder as we get closer to the end of term and his wee brain just gets taxed out. Food is a NIGHTMARE! I don’t think DLD makes him fussy, but it makes it harder to reason with him. And is just something else to get stressed about so I’ve just relinquished all control and as a result his diet is awful! He gets very scared that teachers will get cross if he doesn’t eat his packed lunch. Even with all the reassurance in the world that he can pick and choose what he wants, his fear is massive. I have recently started using the 17 year old daughter of my best friend for babysitting of a few hours. He loves her and she is gentle and kind and familiar. Apart from them and my grandparents, there is no one I would leave him with. And apart from my mum, no one I would leave him with at bedtime or overnight. It’s just when he’s at his most vulnerable and I think he’d find it intolerable, but as I write this I wonder if I’m being over protective. I often translate for him. I’m not always sure it’s as necessary anymore, but it feels like a default. I also find myself explaining to folk that he has a disability as I think I’m scared they judge when he appears more babyish than his age.
Regular things like the optician and dentist are a NIGHTMARE!! No one ever understands the actual need. They are kind and sympathetic and do their best, but no clue how to alter their language or communication style. I dread these appointments and often just avoid them if I’m feeling as a family that we’re not robust enough to manage it.
I’ve noticed I’m far more patient with him than I was with Isaac. Partly due to just being older and being more chilled. Mostly because the slightest row or sense of frustration has such a negative impact on his wellbeing and sense of self. He is so sensitive to making people cross or angry, that is the most heart-breaking thing of all. Seeing his wee face crumple when I snap because I’m tired and grumpy is awful.
I worry more about Ozzie’s future more than I do about my oldest. I worried about Isaac but with no real grounding. Now I’m pretty confident that he’ll have an amazing future. But with Ozzie, it’s all so unknown and unpredictable. I have no idea what to expect apart from there will be challenges, some known and some unknown.
But with all of that, I wouldn’t change a hair on his head! He is a joy, an utter delight. People always comment on his smile and his cheekiness and his nature. He has absolutely the right personality style to cope with having extra challenges in life. We have had just fantastic support from services, the local Speech and Therapy Department are just phenomenal. I tell you our story to know that DLD isn’t just about a child’s speech, but to demonstrate that language underpins our ability to access every aspect of human existence. It is fundamental. And with two children in every class having DLD, we really need to up our game to ensure we’re delivering the right services to the right people at the right time.