Personal Posts, special needs

Is This It Mum? Forever?

Have you, as a parent, ever sat down and thought "is this it?"  Have you ever sat in despair wondering if it would ever get better?

It's heart breaking and it hurts but it is nowhere near as painful as hearing your child say those words to you.

It has taken me a bit of time to be able to write this post as the pain of hearing those words was almost my un-doing.  I'm seen as a strong woman who can handle anything that is thrown at me; and, to be honest, I like to perpetuate that myth - in the hope that it will one day be true.

However, a short while ago, my youngest son came home from school and as a mum, I knew something was amiss.  I asked him but he reluctant to share and said he was fine.  I presumed that it was just a small blip.  He hates not being able to do something really well and I thought he had just struggled with a lesson that day.  The one thing I do know is not to push him to share, he will always tell me when he is ready so I left him alone.

He went off to bed and Chris and I set about the usual evening routine of lunch bags, dishwashers, paperwork and trash tv.  Within an hour, he was back down the stairs but as all parents will appreciate, this is pretty much the norm (it's amazing how many excuses children find to come back down after bedtime).  How I wish though, that he had just had a silly reason to come down the stairs.

He sat down on the sofa, Chris and I grinned, waiting for the usual "does Mickey Mouse really exist" or "my sister won't let me sleep and I really want to sleep, honest".  We were totally unprepared for what came next.

"Is this it, Mum?"

"What do you mean, is this it?  Is what it?"

"Being blind.  Is this it?"

My heart broke.  In fact as I write this, I have tears rolling down my face.

"Is this it forever?  Will I always be blind?"

I took a deep breath and tried to keep the emotion out of my voice.  I couldn't even look at Chris because I knew the expression on his face would mirror mine and I would fall to pieces.

"Why, darling?  Why do you ask?"

"Because I don't want to be blind anymore, Mum."

I cannot find the words to express just how painful that was to hear.

explosion-1046489-mI felt as though my whole world had just exploded; I felt sick to the stomach, I wanted to burst into tears and I wanted to scream and shout with the pain I felt but the Queen of Comebacks was speechless.

I sat biting my lip and trying to think of an answer.  I could tell him about the amazing advances in science and explain how it was possible that one day, he may be able to have vision.  I could tell him that being blind wasn't that bad.  He wanted an answer and I had to come up with something.

"Why do you want to see, darling?  What has brought this on?"

It took some persuasion but he eventually told us that a friend at school had been talking about a magnifying glass and he wanted to use one too.  He was fed up of not being able to do everything his sighted friends can do.  He was also fed up of not being able to understand what things meant - his friend had tried to explain what a magnifying glass did.

"It's not fair, Mum" he said.

How often do parents hear those words and laugh - I remember saying it to my parents and my mum's response was always "and it's not raining either".  However, this time I agree totally with my son.  It isn't fair.  There is nothing fair about it.

We spent almost an hour talking about why he was blind and how thrilled we were to have him here and healthy after his premature, eventful start in life.  We talked about the progress being made in science but also had to make it clear that this didn't necessarily mean he would ever have vision.  We also talked about all the things he would like to do but believed he couldn't.

He went back to bed and I sat and sobbed.  As a mum, I want to fix things and make things better so I choose to battle the system and get my children the support they need.  However, as a mum, here is something I cannot fix and that hurts more than any refusal from a service or any legislation change which doesn't benefit my child.  As hard as that may be, I can wake up the next day and do battle again.  I can't battle anyone to give my son vision.

As I write this, I am crying.  This was so painful and nothing and no one had prepared me for this.  I am also aware that my daughter is starting to realise that our family has different dynamics to her friends at school.  I know that soon I will be answering more painful questions.  How can I give an answer when I don't have the answers myself?

You may ask why I am sharing this story.  Well, Tania and I want to keep this blog real.  We want people to remember that we are also parents of children with a variety of SEN or Disabilities.  We may sit on boards and we may write about SEN reforms with an informed voice but we do that because we know how rough it can get, we know how events can break you and we know how it feels to fight a system for your children.  We are in this Jungle with you.

On a more positive note, J did what all children do and woke up the next morning as if nothing had ever happened.  I hardly slept, I had bright red eyes and as he came down the stairs, I was ready to grab him and give him the reassurances I thought he would need.

However, as he stepped onto the last step, he shouted

"Mum, is Mickey Mouse real?"

Life was back on track but that point-changing moment meant it wouldn't be the same track again.

Debs Aspland
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46 Comments

  1. Janet O'Keefe

    Our child has only half a heart and even that is now starting to fail due to his high anxiety levels due to inappropriate support. We have to focus on what we can do and the positives each day or we would constantly be in pieces. You are right life isn’t fair and it is heartbreaking. But it would be so much easier if we didn’t have to constantly fight for everything. Big hug Debs and thank you.

  3. Helen Renouf

    Thank you for sharing – it is so hard, whether it is blindness or a different disability, whether it is something other people have or it is rare and no matter how hard you try to make things right for your child, you just know you cant make it perfect!

    You are amazing for sharing this…. putting it into words is hard, reading it is hard, acknowledging the truth is hard … but empathizing with you is easy!!

    Hugs

  4. Christina Critcher

    As Mums we want to make everything ‘right’ for our children, the guilt and pressures we put on ourselves can be so much greater than those from the outside where lack of understanding or downright hostility can knock us for a while.
    Thank you so much for sharing such a special moment. You are doing so much for all of us and it is so clear that you are doing so very, very much to guide your children with love, honesty and compassion. From the photos you display I see very happy, healthy child with a cheeky grin and a ready smile. I know it hurts – what a lucky boy to have such loving parents.
    Great Big hugs and thank you once again.

  6. Mary Lewis

    I am a grandma of a very special child too and I admire your honesty, and courage and one day your son will thank you for being honest with him. You are doing a wonderful job and may you always be as strong as this through your family’s life they are so lucky to have a mum like you God Bless.

  7. josuren

    Oh my! I’m in floods of tears reading this. I just don’t know what to say. Instead, here’s a link to Beethoven’s Moonlight Sonata…the legend says that one day a rather poor Beethoven was taking his shoes to the cobbler to be mended and he heard, from the back room, some terrible piano playing. He asked the cobbler who is was. “My daughter, she’s blind, but she loves music”. Beethoven offered to teacher her to play, in return to the cobbler fixing his shoes. Well, one evening, Beethoven was sat, teaching the girl and wonderful moonlight was shining in through the window. Beethoven realised that the girl would never know what the moonlight looked like. and so, he wrote Moonlight Sonata, as his musical interpretation of the moonlight.https://www.youtube.com/watch?v=O6txOvK-mAk

  9. staceyvj

    Wish I had not read this just before I go to school pick up. I am sobbing! I had a similar moment with my son asking why he was different and why he struggled with things other children didn’t. I was devestated. I wished he was not aware. Like your son life returned to normal the next day. However I will never forget how powerless and bereft I felt. Thanks for sharing this. X

  10. KerenH

    This made me cry. There’s a tendency to think that people don’t miss what they’ve never had, or that they just get used to it. My husband was born with cataracts on both eyes. They operated on one when he was 3. The op went wrong and he became blind in that eye. They wouldn’t touch the other one, so he has been virtually blind ever since, but coped so well, that my assumption has always been that he has never given it a second thought. Maybe I’m wrong. Stay strong. Your son looks gorgeous!

    1. Debs Aspland

      Thanks Keren, most of the time he is so happy, chatty (and cheeky) that this “blip” came out of the blue and it was really upsetting but he is gorgeous and I know that these “blips” will happen and they will hurt when they do xx

  11. Nikki

    This touched me deeply. I can remember a particularly bad time when my son was only about 2.5 years old and way before I knew anything about SPD or PDA (still owe Tania big time for her blog educating me). I hadn’t slept in about a week, my son was constantly fighting me physically and mentally over absolutely everything. I’m a single parent and had just about reached the end if my tether. I sat on the floor and sobbed. My son watched me for a while and then came over and touched my face and said “it’s ok mummy my brain doesn’t work like everyone else’s but its ok”. Now I’d never ever said anything like that that to him but he had heard my friend explain to her 6 year old son that the reason his sister (my goddaughter) behaves the way she does (she has specisl needs) is because her brain thinks in a different way to other people and that’s what makes her so special. It astounded me that at such an early age my son could see that in himself. Our children are amazing and so are the people who care for them xxxxx

  13. ALiCe__M

    Well, your son is a very perceptive little boy and I felt that his reaction showed how great the realationship was with his parents : something bothered him, so he came down to tell his parents. This is both natural and beautiful. And yes, this is “it”. But in both ways. I mean, since you can see, you’ll *never* experience truly how it feels not to see and never know what “being blind” means at all. So “this is it” for you :you were born that way, you can see, you can hear. Same for your son, he will never know how it feels not to hear a single sound *ever*. Because he was born that way, with 2 good functioning ears : “this is it” !!

  14. StephsTwoGirls (@stephc007)

    I’m so glad I was pre-warned I’d need the tissues for this – I did, of course. Life is not fair in lots of ways, but none tougher than for our SEN children. I understand how you want to ‘fix’ him, to give him the same chances and experiences in life as the majority, to make things easier for him. You are doing the very best you can, and he will show he appreciates that (in his twenties at least though I’m afraid!) but actually he already will be appreciating your support. It’s true that having a toddler is physically exhausting, but as they grow older it turns into mental exhaustion and we really can’t prepare ourselves for every question, and every disappointment. But we can be there with them, celebrating the achievements and holding them up with out love x

  15. Pouch (@pouchbags)

    I found your blog via Mumsnet and I think it is such a heartfelt blog post. I don’t have an child with SEN needs, but a post like this helps people to empathise with your situation and to help anyone else who is going through the same thing. This is why I love the blogging community and particularly why I love the parent-blog community. By being brave and honest, you help so many other people to learn and cope with similar situations.

  16. ouremuk66

    Incredibly poignant. Just this evening my wee girl told me she didn’t want to be autistic any more as she had had enough. I have no idea what she meant in particular, but to read your post tonight has made my heart ache for all our beautiful special children who have it tougher than most.

  17. Yessica

    Another tearful reader here. I’ve no personal experience of SEN children, but the schools my children go to are incredible and support SEN children in mainstream schools in a way that is amazing. My son has a girl with Down’s Syndrome in his class who’s moved up with her age group each year since Reception, because the schools have totally supported her and her family. There’s also a SEN school in between the infant & junior school, and it’s treated as part of both schools, so pupils of all three schools grow up together.

    I honestly don’t know what to say without sounding trite and patronising, but I am in awe of you and your son. He sounds like he’s pretty damned amazing.

    1. Debs Aspland

      So good to hear about a positive experience in a mainstream setting, that has made me smile.

      Don’t be in awe of us, just remember us when you are speaking with other parents of children with SEN.

      Thanks for taking the time to comment, I really appreciate it.

  18. Swazi

    I started crying when I read the title and am in floods now. What a terribly sad question to have to answer. Thank you for sharing this – it is impossible for someone else to know what your life is really like and your honesty is touching.

    My heart goes out to your lovely boy (and I hope you told him of course Mickey Mouse is real !).

  19. Kate Taylor

    Thank you. From the bottom of my soul thank you. We have SEN issues with our family and you’re right, you can fight the injustices of the establishment, but not the injustice of the hand you have been dealt. The darkest hour is before the dawn, and your little boy will feel the heat of the morning sun and you will hear his laughter at the bird song. As I told a vicar friend of mine recently ‘God only gives us what we can handle – apparently God thinks I’m a bad ass.’ In the words of Curtis Mayfield, keep on, keeping on. Children have a beautiful resiliency for doing as such, we just have to keep up. Whoever is reading this, you are never alone xxx

  21. Debbie Goldthorpe

    Debs u r an inspiration..I often feel it isnt fair for Ella although she doesn’t know any different at present….I find myself feeling almost jealous sometimes when I hear someones child speaking to their mother and wonder if I will ever have this relationship….big hugs to u, u r a fantastic mum and all 3 kids are wonderful, beautiful and most of all happy and that it down to u and chris xxx

  23. Char Kollecker

    What an emotional read Debs. Very touching had me in tears. Ty for all you do…. Hi to Janet O,Keefe up above! Lovely lady who’d is a report for my daughters Statement and attended her Tribunal and she is now thriving 🙂 xxx

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