Podcast Episode 28. Being listened to and being understood are important to us all, but this can be difficult when you struggle to find a common language. Language is the way we communicate and if you can’t communicate with others the impact can be devastating. This week I talk with Veronica, Mum to Emma, who has a speech and language impairment. Veronica explains what this means for Emma and her family.
Veronica guides us through her daughter’s diagnosis and the difficulties they had in getting others to acknowledge the problem, and then how that should be addressed. She also talks about the impact of getting a diagnosis and the feelings that come with that.
Veronica discusses the importance of finding people that can support your family and have an understanding what you are going through. She talks about how she found a support network and how it helped her daughter and the whole family. Veronica reminds us that people don’t need to be going through the exact same thing as you to understand how you are feeling.
Finally, Veronica talks about how important it is to teach our children to demand to be listened to and to value their voice. These skills can then be used outside the home to help them become more independent.
Finding a common language helps us be heard by others who can offer support, understanding and remind us we are never alone.Show Full Transcript
DEBRA: Welcome to episode 28 of the Journey Skills podcast. This week, I’m talking to Veronica, Mum to Emma and Emma has a speech and language disorder. I know I’ve said before that one of the things I really love about interviewing people for the podcast is hearing other people’s journeys and, in a way, gives me a chance to reminded that I’m not alone. I don’t know about anyone else but sometimes having a child with additional needs can be pretty lonely even when you have great family and friends around you.
Veronica talks about something else that I think some of us feel at some point and that’s realization that things always turns to be a little bit different. I remember interviewing someone else awhile back and they told me that one of the hardest parts of finally getting a diagnosis for their child was this realization of lost opportunities. Of course, there are other new opportunities but at this age, you kind of change your direction quite a lot when you get a diagnosis.
Of course, we all know that having a child with additional needs can be pretty amazing and honestly feel that my daughter has added more to my life than she has taken away. And she has helped me learn about myself which has been quite a journey in itself. But Veronica mentioned about finding support and she does talk about finding support networks and in a sense, that’s where the idea for the name of the podcast came from; Finding A Common Language. Not only because this is about a young person who struggles with language but also about finding commonality with other people to help them or to help you through the journey in a way.
As she rightfully says, people don’t need to be going through the exact same thing for you to understand what you’re going through. Most of our experiences are fairly unique, but we’re all on the same road really to get the best possible outcome for our children.
There are also some other things in this interview that we visited before, namely delays that we experience in getting our children the help they need. Veronica goes through this journey to where she is today, explaining how they got the help and what kind of things that Emma is now able to learn at the school that she’s in which is ultimately the right school for her. And these are the kind of skills that will help her when she’s older to be more independent.
But it doesn’t appear to be a solution to this idea of getting an early diagnosis but I guess we can all take it on ourselves to help others coming along behind us by reminding them to ask early and ask often. I really believe the earlier you know what’s going on, the better you’re able to provide the right support.
Veronica also talks about how Emma has gotten older she’s starting to manage the people around her. I think it’s all about maturity. It’s something I’ve noticed in my daughter in the last couple of years. And actually, it’s pretty fantastic. I know as parents we always talk about teens rebelling; wanting to move away from their parents and that being a pretty difficult phase for everybody, but as a parent of a young person with additional needs, I’m really enjoying my daughter rebelling. Actually, a lie. It sends me completely crazy but it’s amazing watching her develop her real desire to live her own life.
And as Veronica says, these are skills that we need as parents to help our children develop so that they can take these skills outside into the wider world. I know you’ll find plenty in this podcast that resonates with you. And also, be reminded to stay optimistic that with patience and support, our children will get there, wherever that might be for them.
DEBRA: This week, we’re talking to Veronica. Welcome.
VERONICA: Thank you.
DEBRA: Tell us a little bit about your story?
VERONICA: Emma’s 13 now. She has a twin brother and she was just the same as her brother. In fact, she was almost a little bit more canny than her brother as a toddler. She was always quieter but much more secure emotionally so he needed cuddling to go to sleep and she was always like “Oh leave me alone” but not that she didn’t cuddle or like the cuddles but she was very particular about when she wanted to cuddle so very sure about what she wanted.
As they started walking around, she would kind in their bubble send Tom to explore, and watch and see if he gets in trouble. Well if he didn’t, she’d follow him but if he did, she just stand there and watch Tom get into trouble, basically. So, we were like, “Oh we know she’s quiet but actually she’s quite clever. Look what she just done! She got you into trouble. We knew what she was doing.”
And then when they started talking, Tom was very much more chatty than Emma, we just thought Tom was talking for Emma. She was kind of just sit-back-and-watch kind of child and she’d say the old words and she’d say it at the same time as him. So those first words, she said at the same time as him and looking back at those early videos now, which we do sometimes, there is no way that we could’ve known what was going on those kind of under 3.
When they went to preschool and we started to having more playdates and seeing other children the way they spoke, we kind of think “She’s not putting it together”. She had just turned 4 and she was going to be starting big school reception in September and said she’s not talking in sentences, not even the small simple sentences that he’s talking in. And she got straight through to the speech-language therapist and so she started school and we’ve done lots of work with some holidays, they’ve given us lots of worksheets, and she started school but not saying when the speech-language therapy will be coming in but as is often the case something went on to maternity leave, so she basically waited a year for somebody to come in and sit down and say “Oh yes, she got problem”.
So, we were going to year one and it’s kicked in and she’s got speech and language therapist coming in every week and then they don’t go into the class with her so then what she does in the therapy is great because she’s got wants one and she’s great mimic, which she doesn’t do in a class. And so, it only took a whole of that year for us to cope. But she’s not doing it in a class and it just takes a long time so she was just getting more and more stressed.
In the school, she got split with her twin brother in year one so she no longer had him to protect her, and she didn’t really have great language skills, so she told us less than you would get from a normal 6 or 7-year-old. So, it took us ages to work out what things were going wrong. Part from the education side of it why she was getting so upset and why she would cry and not being able to tell us why she was crying and just have to sit with her for like half an hour why she cried and then “Do you feel better?” and that’s the best you can do because she hasn’t got the skills to actually tell you what’s going on.
They’re great in education, the downside of that of course is she’s coming at the class every day, she’s getting special treatment, other people in the class don’t like you getting special treatment so whilst it was great for her education, it wasn’t great for her friendship groups. They’re all learning new skills of how to communicate with each other and she’s way behind. She’s not even on the first round of that ladder so she just got farther and farther apart.
Luckily, in year two, to support Emma, my husband and I found her a tutor and she was Dyslexia tutor so Emma had been going to her for a year but she did an assessment of Emma over a couple of weeks right at the beginning of the year. So, Emma was 6, she was the first person to sit my husband and I down and say to us, “Your child has a language disorder. She doesn’t have Dyslexia yet because it’s before that and she needs specialist teaching and I think you need to get your head around, you’re gonna need to walk beside your daughter for the whole of her life.” And that was really hard to hear. That was a “Oh, this is not getting better”. And she said, “No, what you got is a pervasive need and it won’t get better but she can get support.”
And once we got past the emotional trauma of that and went to spoke to a friend of mine and she has a down syndrome child. I was just having coffee with her and I said to her what this lady had said and I burst into tears. And she burst into tears. And I went, “I know you’re the only person I know who can understand what that means and how that feels.” And it was so nice to find somebody to share it with. That was the first time outside at house that I’d spoken to anybody who actually understood what it was like because no matter how much you talk to your siblings and uncles and dads and grandparents if they haven’t experienced it, they don’t know. And they did their best. Everybody does their best but actually to know that you’re sharing with somebody who has experienced what you’re experiencing, just like you feel so much less lonely. And it still took ages to find people but I did eventually. And for Emma, as well, to find people that she was similar to.
DEBRA: How did you find people? What did you do?
VERONICA: So, the dyslexia tutor sent us to the Meet School as a contact point to get her assessed for her statement so Emma got a place in Uni. So once Emma got settled in the Uni, I decided that I needed a little bit of a break. And I went often, I go learning when I need break for me. So, I took up Italian. And one of the ladies in my Italian course had a child with needs and she used a club called Afasic as a social club for her child. Her child was now 17/18, he was in the adult club but she’s adult. You’ll meet other people there. Afasic is a charity for speech and language and communication needs. So, we went there. It was brilliant. They won’t overfull so they let her brother go with her, both of them could go into this youth club, turned out that at the school that she was at, they also had people there who knew about her. So, she went on to this club and said “I don’t know anyone. Can Tom come in with me? I walked in and some people from school were there.” So that was quite useful for her. That’s how we got there. That was my first port of call of finding other parents. I used to drop them and instead of coming home, we go public store and gone off a drink and we all started bonding and we had this group of parents and then we build that circle.
And then 6 months later, there was this home-school link worker at my son’s school who started coffee mornings once a month and I went to a couple of those and that was just brilliant! At coffee morning, I met some SOSSEN which is a charity that helps people with the paperwork. Fantastic charity!
DEBRA: So now she’s in a school, what kind of things that they teach do you think in terms of independence?
VERONICA: So she’s learning how to travel and walk strangers off safe. So, they do a local area pass and she got that end of last year and she can go off twice a week with a friend. I’ve got too many main routes here, I wouldn’t let her go to the shops here. I would let her go with her brother because he’s on a trained in school and traveling. I would let her go with him but she wouldn’t feel confident because there’s more traffic. So, she has to build her confidence in really small ways, and in very small steps. It’s about learning how to pay for things and make sure you that give the right money and get the right change. It’s talking to safe strangers and not just talking to anyone, which actually isn’t a problem for Emma because she wouldn’t just talk to anybody.
The way we work it at home is that we gradually have just built more skill in conjunction with the school so I know that the school sending her off to pay for things so when we go out shopping, I’ll say “How much money do you need? What no is the right no? Give her the no and send her to the teel and come back.” But a couple of weeks ago, she went to the shop with a friend and she lend a friend because the friend didn’t have the right money, she said “You owe me £1.70” and her friend said “Well, I’ll give you £2” and she said, “No, you give me £1.70” and she couldn’t work out why £2 was okay for her to give her change because she wanted £1.70 and I literally had to sit her down and had to say, “This is how many coins you’ve got in your purse, this is what she owes you and if she gives you £1.70 this is what the amount is, and if she gives you £2 and you give her £0.30 change, this is the amount is. Can you see they’re the same?” And that’s how she needed to see it because she couldn’t see it in her head. For her, she was having to pay up money when somebody owed her money which was a really difficult concept for her to get her head around.
So, I can understand she’s not quite there. I think giving her money and expect her to come back with a big amount of change is quite a big thing for her so she can work out when it’s just a penny more or just a few pennies more, but if it becomes really complicated, she just doesn’t have those skills. So that’s kind of like out in the world shopping skills. She’s happy with the oyster pass because I put money on that side so she can tap in tap out, she gets the concept of that. No problem. But the money side fee, because her math skills is quite depleted. Math is tough for her because she has memory problems. She can’t remember a times table.
DEBRA: Did you ever come down to repetition then just with money? And also, I wonder, would technology make a difference? You mentioned that she likes to use the contact, do you think that’s a possibility that when she gets older, just to use contact list?
VERONICA: I think that’s a wonderful idea because I think that’s exactly what she’ll do and I think she’ll be able to understand the concept of ‘Go to the bank, check your balance and know how many times you can use it’. I think she’ll be able to work that out. It’s also possible that she’ll tap too many times and go way overdrawn.
The skills she has now compared to a year ago are slow-growing. So, I can’t predict how well she’s gonna be at 18. That’s the absolute truth of it. I don’t know at 18 if she’s gonna be able to manage contact list or manage her money. But I do know she can’t, by the age of 18, she’ll be able to ask for help and that is also a massive big thing for her. She’s learning the skills at home of telling us not to interrupt and to give her space to think of her words because she has word-finding difficulty and short-term memory difficulties, as well as, the understanding what’s being said and understanding what is she wants to say but she also can’t find her words so at home they’re teaching her the way of saying “Can you just give me another minute to sort this out?” It’s a massive thing. It’s a massive skill for her to learn because she can do it in the home but now, we need to transfer it. Can she do it outside? Can she move it outside to aunties, grandparents or if we were with other people, can she still manage to do it? These are all skills that will all be built by us through repitition. “Are we talking over you? Are you following the conversation?”
The thing is, in social gatherings, everybody talks to each other and quite often I turn around and go “Do you know what’s going on?” She says, “No. I haven’t got a clue. I’m way lost. I’ve just switched off.” And she doesn’t even put it that way, she just says “No” and I’m like “Would you like me to tell you?” “Yes” and then, “Would you like me to slow down the way I’m speaking?” “Yes”.
DEBRA: You mentioned before, you don’t know what she’ll do when she’s 18 and what independence skills she might have, do you have a scenario what you’d like her to be able to do?
VERONICA: I would love her to be able to live on her own, to be in a job that she enjoys and that gives her enough money to live on and I think that she’ll be able to with time. I think she might not make it at 18 but I think she’ll make it by 25, and I think that she’ll just need a bit longer to get there.
DEBRA: So do you think it’s just patience to wait to develop those?
VERONICA: I do think it’s patience, yes. I do. Her language difficulties are there. They’re not going to change and all she can do is not to stress around it. And at the moment, she’s learning how to cope in a specialized environment and then when she’s got the confidence in these coping skills, then she’ll be able to take them out and then she’ll have to rebuild her confidence in the outside world.
It really is two different worlds for her and I see that every time we get together as a massive family and everybody is together and everybody’s talking and everybody’s doing their own thing, she participates next to everybody and it’s not because she’s got this massive amount of other skills and isn’t bright it’s because the world we live in is built on complex language and once you get your head around that it’s like “Ah okay. I’m gonna be walking beside my daughter” and that’s absolutely fine. Because I love her and she’s fantastic and she does her utmost to make sure that everybody around her is always happy so tha’s the least I can do for her.
DEBRA: Top tip for other parents in similar situation, maybe at the beginning or even where you are now, what’s the one thing that you wish you’d done?
VERONICA: Find your support, find the group, find your like-people. They don’t have to have children with the same things going on but to share the burden of being frustrated with somebody else who might be frustrated for completely different reasons but is still frustrated is so much nicer than burying it on your own because you need other people. Find the groups. They’re out there.
DEBRA: Thank you so much for your time and your story.
VERONICA: It’s okay.
DEBRA: Key takeaways? Find support. Find people to talk to to share the burden of frustration as Veronica calls it. They don’t need to be going through exactly what you’re going through, but they will probably have many of the same feelings that you have.
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