What is it like to be a mum of a dyslexic – my mum reveals all:
While I have been in Devon due to the covid situation I have taken the time to interview my family members. Hence why I have not written in so long. This will not be like my other articles as I want to show their real responses. I hope that their experiences will help to raise awareness for relatives of dyslexics.
Interview with mum transcribed:
Me: Right mum, all the questions I ask now will be relating to the times before I was diagnosed.
Me: Considering you had Christina before me who is not dyslexic was there anything you noticed as odd about me growing up?
Mum: You could not tell the time. Very clumsy. You told me mannequins in shops moved. But I thought you just had a vivid imagination.
Me: Was I slow at anything?
Mum: You were slow to talk and fast to walk. Your dad thought you would never talk. Then you started and didn’t shut up. Haha.
Me: When you say slow to talk how long?
Mum: For example, your sister was 9 months and you were, possibly a year.
Me: What would you say I was good at as a kid?
Mum: Getting into trouble. Ummm…finding out how things worked.
Me: How do you mean?
Mum: You were always taking stuff apart and building stuff. Very active. You had whole imaginary classroom of pupils you taught presumably because you found it difficult in school yourself haha.
Me: I was more imaginative then?
Mum: Yeah very much so.
Me: Was there anything you realised I liked straightaway?
Mum: ummm…I knew you didn’t like reading (said in a mum tone). But you loved drawing.
Me: How did you know I didn’t like reading?
Mum: Haha because you refused to read. You liked books with pictures in but not very many words.
Me: When you say I refused – was I grumpy, sad?
Mum: You just wasn’t interested in it.
Me: Would you say I was a particularly happy child?
Me: What was hardest to get me to learn?
Mum: Time. Could not get you to look at a book just were not interested at all.
Me: What did teachers used to say to you about me?
Mum: They used to say you tried hard…but…you just couldn’t get it.
Me: Get the grades?
Mum: yeah. You spent the time trying…. although I am not sure they realised that.
Me: did you ever get frustrated with teachers?
Mum: When they called you stupid. Which I knew you weren’t. Called you lazy which again I knew you weren’t. I just thought they were obstructive.
Me: Was there a common sentence or phrase or feeling that I used to say but you never realised was linked to my dyslexia?
Mum: You used to say things moved but I didn’t realise how they moved.
Me: I didn’t explain it to you?
Mum: No not at all. It wasn’t until your Irlen’s test that I realised you had flashing lights and words sliding down pages. And that the reason you jumped through the door frame in lounge isn’t because your flamboyant but because it was you trying to get through before it moved again.
Me: Ok so moving onto the questions relating to after being diagnosed. What is it like to be a mum of a dyslexic when you are not dyslexic?
Mum: Confusing. I don’t see what you see.
Me: Does that frustrate you?
Mum: Yeah, it is difficult to help someone when you don’t know what the problem is.
Me: Was there any times you found particularly difficult?
Mum: Not really. Because you were born so early (3 months premature). I was just relieved you were alive. The fact you weren’t academic wasn’t my main priority.
Me: When you found out I was dyslexic how did you feel?
Mum: I felt guilty I hadn’t realised. But you don’t know what you don’t know. Relieved because It explained a lot.
Me: You were the one who arranged all my support and test for uni as I had to get re-diagnosed – can you run through how you did it. I can’t really remember what happened?
Mum: You arranged your own test at secondary school when you were 17 – 18.
Me: How did you feel about that as I didn’t tell you?
Mum: um…I was quite impressed.
Me: Was you not annoyed I didn’t tell you?
Mum: No it was quite common you didn’t tell me things. I didn’t know there was anywhere you could go to be tested they didn’t advertise the fact.
Me: When I come home was you surprised, I got tested?
Mum: No I am never surprised by anything you do (said in laughter).
Me: Did you get a call from school after I got diagnosed?
Mum: Nooo I got it all from you. You come home and told me.
Me: Oh its lucky I said then
Mum: Your uni didn’t accept the test your school did as it was out of date. And then from there we managed to book a test at a college which we went to and again you did your test on your own while I waited outside. And then they mentioned you needed an Irlen test which I had never heard of.
Me: When you got the details for South Devon College – how did you get them?
Mum: ummm…You gave the paper work to me from school. Which was dangerous because you forget to give me paperwork all the time. I then had to phone up the numbers and arrange the tests myself.
Me: Was it hard?
Mum: It had to be done within weeks because you were due to go to uni. It was quite expensive.
Me: How much as an idea?
Mum: Bearing in mind it was years ago as you were 18 and now your 27. Dyslexia test was £250 and Irlen’s test was £200
Me: That was just for me to find out?
Mum: Yeah just bear bone basics to find out if you had them to get support for your uni
Me: If I wasn’t you don’t get that money back?
Mum: You got your frames for your glasses for free with uni and your support such as laptop and scribes if you were diagnosed but if not you don’t get anything. And no if turn out not dyslexic don’t get the money back for the tests. And I had to come up with that in two weeks.
Me: I know you found it easier to sit in on my Irlen’s test. Would you have found it useful to sit in on my dyslexic test as well?
Mum: yes. But if it were affecting the test then I wouldn’t have done. That’s why I didn’t say a word in the Irlen’s one.
Me: When you saw me in the Irlen’s test what were your thoughts?
Mum: I was amazed that you were able to learn to read at all. And it explained a lot. Explained why you were so tired all the time.
Me: Was there any examples I know you said before about flashing lights. Was any of the questions surprising to you?
Mum: I was surprised that the woman who was testing you was not surprised by your answers because I was amazed.
Me: What answers were you amazed at?
Mum: When words slide down a page, bits drop down, lights come out , things go in, things move around
Me: When you looked at my face did you see me uncomfortable?
Mum: no you were just really serious trying to think.
Me: Did it annoy you?
Mum: You weren’t surprised and you thought that I shouldn’t have been surprised as you thought I see what you see. But I don’t. Like when you got your coloured glasses you said it calmed and things didn’t move as much you said to me is this what you see like? And I said well mine doesn’t move at all. And you replied what not at all? So you don’t understand my world and I don’t understand yours.
Me: you got to admit when I was younger I used to clash a lot with you. Well in my head I did. I used get so frustrated because you didn’t understand what I was saying.
Mum: yeah you used to stomp off and slam doors a lot.
Me: With the Irlen’s test was it worth me getting it in the end?
Mum: oh yeah, I wished you got it when you were around 7 would been much more useful and the dyslexic test.
Me: what changes did you notice in me once I was diagnosed?
Mum: More confident.
Me: How much more?
Mum: lots. Lots. Also you had something to work on as you then started to get help. Before you would say you couldn’t do something and someone would call you stupid or lazy. So in the end you never went and asked. Because you just got blocked.
Me: So I kind of just gave up?
Mum: Yeah. You ask several times and you don’t get help you stop asking.
Me: In your opinion what is the best way to help with dyslexics education as a mum. Like if they have homework?
Mum: umm…don’t badger them…because they are really trying if they cant get it its not laziness or not trying it’s because they just can’t get it
Me: Any hints you can give a mum?
Mum: Read up on it. Go on the internet. If you get examples of other people and you suddenly see it and remember bits you have missed before.
Me: Did it help?
Mum: it made you feel stupid that you didn’t pick it up but again if you don’t know to look for it you don’t see. Also you used to cover really well.
Me: what do you mean?
Mum: You never let on to all the problems you were having?
Me: I don’t think I told you until uni what I did or what happened in school…
Mum: No I had no idea.
Me: I don’t really know why I never told you…like when I hid my grades – because I did use to hide them from you.
Mum: yeah, I didn’t see it
Me: What is your opinion on schools and dyslexia could it be better?
Mum: (Rolled her eyes) yes!
Mum: Schools need to be taught about dyslexia. I thought I knew what it was but it is way more diverse than I thought. And I think the stuff I found online even if they just have that to share would be nice. I had no support as a parent.
Me: What things did you find online? Were there bits you didn’t realise that was dyslexic?
Mum: I didn’t know everything moves around. I just thought words would change places but still. I didn’t know they moved. I certainly didn’t know realise that crowds would be a problem for you.
Me: That’s probably more my Irlen’s the crowds.
Mum: Bright lights and daylight, white, cartoon figures….none of it
Me: Some mums I have heard from have said they didn’t know as they thought it was just because they were a teenager.
Mum: Yeah because also as I was learning about you – you were 18 so you were a teenager. You were doing daft things and having tantrums anyway without dyslexia in the mix.
Me: Was they worse than my sisters?
Mum: ummmm….no not really you both have Italian temper. You used to flounce off.
Me: What was the most frustrating for you?
Mum: I couldn’t help. As a mother you try to find solutions.
Me: But you did help. I don’t think you realise how much you did help me.
Mum: But most frustrating time was when you were 8 or 9 when you trying to learn the most and you used to be practically having a breakdown every time there was a test.
Me: When I had a mood how did you calm me down
Mum: left you alone…no reasoning with you best to leave you and come back haha.
Me: I remember student finance for uni being a big issue. As I remember something going wrong and we clashed and my sister had to become the mediator. As you were not good on computers, but you needed me to tell you the information. But for me to read the info I need to shake the mouse up and down so screen moves but you then couldn’t put the info in.
Mum: yeah….well you decided you wanted to do it yourself. But you read the wrong year and ended up putting it in and having it returned. And I said I would do it and you would talk over my shoulder but then you were flicking it back and forth and I said for god sake keep it still.
Me: obviously with dyslexia my memory is not that great. Do you have any examples of when I am distracted?
Mum: You can be talking to me and you suddenly change topic and go off on tangent and I have to stand there and wait and then remind you that you were talking about something entirely different before you come back to me.
Me: Is that annoying?
Mum: Just used to it now.
Me: As a parent was there any worries for my future that you had
Mum: Concerned you wouldn’t learn to read. Worried for you to look after self and live on your own. Like you couldn’t read a bus time table and no car so how would you get to places.
Me: Was you nervous when I moved from Devon to Cheltenham for uni?
Mum: yeah! You were 3 hours away and if there was a problem, I can’t help you
Me: yeah, I used to get lost all the time and call you – mum can you street map me I don’t know where I am.
Mum: Yeah haha.
Me: Sid you get any bad reactions. For example, I know when I got diagnosed I had people go you get good grades anyway why do you need help. Did anyone say anything to you?
Mum: I used to get quite angry how people didn’t see how hard you worked even though you couldn’t achieve probably as much. Like that teacher rang me and said you were unreliable, and you have been sat behind me at the dining table working for 3 hours straight after school over your books and homework
Me: On an average school day for me what would I do?
Mum: Go to school, you would eat and then you would crash. Quite a few hours. Then you get up and you would be working in your room but for hours! Homework should take you two hours at the most but you would be there for 6 hours. And still not have got it.
Me: I remember you trying to clear the table for dinner once and I shouted at you because I hadn’t finished.
Mum: Yeah, I remember that.
Me: Now you seen me go through school, uni and I work – what would you say is the most important thing?
Mum: Getting diagnosed. Once you have been then you get the help. I feel like schools should do a dyslexia test out of routine and if found then check for irlens too on entry to primary to give an idea.
Me: Would you say dyslexia is good or bad?
Mum: It makes life harder for you but it makes you think in different way. Like for your criminiology degree you gained because you think in different way. But made life difficult for you because you can’t write, read or do the same as others. And the world is designed for non-dyslexic people.
Me: What advise do you have for a parent just generally?
Mum: Try to find out more but don’t always go through school. If you think they are just call dyslexic association.
Me: Would you encourage to be open about it?
Mum: Yes, what is there to be ashamed about.
Me: oh one thing spec savers.
Mum: oh god yeah.
Me: so, we went to opticians and warned I may not be able to read the chart and the optician said dyslexia didn’t exist.
Mum: Yep I could have punched him. Haha. I went in there expecting him to help. But we got you another one who had a friend who was dyslexic and he tested your eyes in different way. You had perfect vision. The teachers who helped you all had relatives or were dyslexic themselves. So, they had experience of it.
Me: Thank you mum.
Mum: Happy to help.
Apologies that this is such a long article but I hope this helped any parents who may be going through the same feelings.
Next two articles will be an interview with my sister (7 years older) who is a non-dyslexic and my dad who is dyslexic (but undiagnosed).
Keeping reading and stay safe guys.