The SEN diagnosis I pushed for, then didn’t want

When you know, you know.

You hear that so often, don’t you? When will I know I love him/her? When will I know if I’m ready for kids? How will I know if I’m in labour for the first time? Even, when will I know it’s over?

That annoying answer, which often doesn’t really help, applies so often when you become a mum (quite possibly when you become a parent, but I can’t comment first hand on fatherly gut instinct).

So much of parenting comes from within and even when you’re treading the path for the first time, and you so often feel totally out of your depth, there are certain things you just know.

So when your child isn’t developing as they should, you know whether they’ll catch up, whether they’re just taking their time, or whether there’s a more serious problem.

Toddler with SEN diagnosis, looking up and smiling

You’ll watch others around the same age and you’ll know your baby isn’t the same.

You’ll listen to well meaning friends, family and even professionals, tell you that all children develop differently, and that little Amelia isn’t talking yet either, or Harry still isn’t crawling, and you’ll know that they’re wrong about your baby.

You’ll smile. You’ll say ‘maybe you’re right’. But you’ll know they’re wrong.

Make no mistake, you’ll wish with every fibre of your being that it’s you who’s wrong, that there will be no SEN diagnosis. That the paediatricians will tell you they’re fine, you’re worrying about nothing and that you’ll have to hold your hands up. Admit you’re a fussy mum.

I think everyone comes to terms with things at different rates. And we will all have a different factor which makes them take matters further, trust their gut, and make that first appointment. Start the journey.

In my case, it took another person to take me seriously. To tell me that they agreed with me that something possibly wasn’t right, to give me the conviction I needed.

I’m not sure the GP believed me. CDC declined our referral. Each time I was doubted, it made me more determined to find someone who would take me seriously again.

I found myself chasing an SEN diagnosis, or at least that’s what I thought it was likely to be. Searching for someone who would take me seriously. I knew something was wrong, but how could I access any help without a professional giving us some kind of a label?

I was lucky enough when I burst into tears at a weighing clinic, to sob on the most wonderful Health Visitor, so took all my concerns seriously, listened to my worries and fears, and put together the most comprehensive second referral you could ever wish for.

After nine long months, we finally got an appointment with a community paediatrician. She was kind to Lottie, and to us. She listened, watched, played and observed and her later report encapsulated everything about my little girl. Not only her struggles, her delays, but also her wonderful personality, her tenacity and a little bit of her gentle soul.

I don’t think I’ve ever been more scared ahead of an appointment as I was before we met that doctor. But I left feeling that a huge weight had been lifted. Oddly I was relieved. Someone had believed me. Someone had taken me seriously. And more to the point, someone professional had agreed with me and given us our SEN diagnosis.

My gorgeous girl, my firstborn, the one who made me a mum, has Global Developmental Delay.

When the doctor first spoke those words, I cried. Quietly. Gently. Perhaps nobody else even noticed. But I couldn’t help it. So many emotions were tied up there and those few tears would not be held back.

But then I sat up and listened. I needed to take everything in, so that I could do my best by my girl.

She told us that she thought our daughter’s developmental age was around 12-18 months behind her actual age. She would refer us for a myriad of tests. We may never find a cause. It may be that this is just Lottie. But we needed to investigate and put support in place to help her.

And suddenly, I wish I’d never asked.

The relief was short lived. And was soon overcome by sadness, by grief, by worry. The relief had been well and truly eclipsed.

Why did I push for this?

I don’t want her to have a label. I don’t want her days to be filled with appointments with various professionals. I want to go back to the carefree days of taking her to the park, to playgroup, for play dates.

I don’t want her to be scared when the kind nurses tried to take bloods for her genetic testing. I want to watch her play pretend with her doctors set and teddies at home.

I don’t want every game we play to have to have some learning objective behind it. To help her speak, help her develop her strength, to help her learn to use Makaton. I want to just play, for the fun of playing and let the learning happen by a happy accident.

And don’t get me started about what I worry about happening for her future. That is a whole post in itself.

I know we needed this diagnosis. I know I’ll deal with it in time. I also know I’ll never be OK with it. I know it doesn’t change who Lottie is. I know she’s still my kind, gentle, funny, sweet little girl. No labels will ever change that.

But my word, do I hate it sometimes.

Follow:

20 Comments

  1. May 31, 2018 / 11:30 pm

    Oh darling, this is such a beautiful post and I read it with tears in my eyes. No matter what, Lottie will still be your funny, gentle, loving and truly wonderful little girl. And you will always be her absolutely amazing mother who loves her with every fibre of your being. But you can still hate the diagnosis. That is natural. Sending you all so much love. Hugs Lucy xxxx

    • heelsandhooves
      Author
      June 1, 2018 / 11:26 pm

      Thank you so so much. You’re so right, nothing changes the beautiful little person she is. I just worry so much about what it will mean for her as she grows up. Lots of love xxx

  2. June 1, 2018 / 9:52 pm

    Oh Katie I cried reading this. It could have been my post only I’m not brave enough to write it because I don’t think I will ever stop crying about it. I too wish it was wrong at that someone would turn around and say we’ve got it wrong.
    We have a battle ahead but we can face it together
    Big hugs

    • heelsandhooves
      Author
      June 1, 2018 / 11:27 pm

      It’s nothing to do with being brave lovely, it’s just different strokes for different folks. I’ve always been an oversharer and worn my heart on my sleeve a bit, so in a weird way it helped to write it down. We’re stronger together and our girls are just perfect. Loads of love xxx

  3. June 2, 2018 / 12:14 pm

    Ah, yes. I can relate. My eldest was diagnosed with high functioning autism at 11. The diagnosis floored us. I’d looked for signs of autism since the day he was born and found none. He hit every milestone. However, his new school asked us if we’d noticed anything peculiar about him and although we had, we just thought it was who he was. We initially thought ADD (anything but autism, really) because he fitted the criteria. When the diagnosis came there was an element of relief but there was much more “how could we have missed this” and wondering how much he’d struggled without us being aware. I totally understand how a diagnosis brings more worry than not having one – we can no longer just say “oh, that’s just who he is”. We have to face up to it and worry about his future. However, having an official diagnosis has been the best thing for him – everyone understands him and his needs better and that wouldn’t have happened if we were still in the dark. I know it’s tough but those fears will alleviate a little. It’s always better to know about these things!

    • heelsandhooves
      Author
      June 4, 2018 / 2:50 pm

      Thanks so much Tracy. I’m sorry to hear you were hit with an unexpected diagnosis. It floors you doesn’t it! I think the worry about her future is the main thing that I’m struggling with. If I stay in the here and now, I’m fine, but as soon as I let me mind wander forwards, I get in a state. You’re so right that the diagnosis brings all the help they need and that’s what I need to focus on xx

  4. June 2, 2018 / 7:40 pm

    What an amazing post. I don’t know anything about this area of parenting but you’ve been so brave to open up about all of this online

    • heelsandhooves
      Author
      June 4, 2018 / 2:52 pm

      Thank you so very much. I didn’t see it as particularly brave, but many people have said the same. I just hope that someone somewhere may feel a little less lonely after reading this x

  5. June 3, 2018 / 10:44 am

    Beautiful post and entirely natural reaction. Our children are such individual, wonderful people that no simple label is ever going to be able to sum up all they are (even positive ones). It must be so hard, when there are already so many other limits imposed on kids, to find your daughter being put into such a scary box. But, as you say, this is how she gets help fulfilling all her potential. And there will still always be fun and joy and love!

    • heelsandhooves
      Author
      June 4, 2018 / 2:53 pm

      Thank you so much. This is a really good way to look at it, the label is just a part of who she is, not the sum of her xx

  6. June 3, 2018 / 12:17 pm

    Lovely post about what can feel like a daunting thing to many parents. I’ve taught a number of children with Global Development Delay and interestingly what they do varies ever so greatly. The one thing I’ve always noted though was that when there was a supportive parents – the child would be happy and still progressed – even if a bit behind the others. You sound like a loving mum – Lottie’s in good hands.

    • heelsandhooves
      Author
      June 4, 2018 / 2:54 pm

      Thank you so much Jenny. I love the bones of that little girl, and we’ll do all we can to help her, along with her wonderful teachers at preschool like you, and all the other professionals. This is really reassuring to know xx

  7. Lauren Davis
    June 3, 2018 / 3:15 pm

    Such an amazing post, you are being so strong. Just remember in the long term you are doing your best for your little girl. In the future you will be able to have those care-free days becasue of all of the work you are doing now. Stay strong and remember you are doing your best x

    • heelsandhooves
      Author
      June 4, 2018 / 2:55 pm

      Thank you so much. Yes you’re right, the appointments will die down one day. And we try to make the most of the other days for the time being. xx

  8. June 4, 2018 / 3:24 pm

    What a post, with so many emotions, I reall almost cried while reading it. I’m sending you much love to you and your lovely girl.

    • heelsandhooves
      Author
      June 4, 2018 / 10:48 pm

      Thank you so much Scarlett xxx

  9. Hayley thomas
    June 4, 2018 / 6:08 pm

    My little lad (now 7) was diagnosed with global developmental delay and severe speech dyspraxia at 3. Never babbled, nothing. He’s my first and only so I had nothing to compare him to. It was a massive shock. The shocks keep on coming over the years when an MRI discovered my son’s brain is missing a whole lot of connections and is very abnormal. I grew him that way. Me.
    He was statemented and sent to a special unit for school, mainstream was not an option, my partner was particularly devastated by this. I had been dealing with it all, the appointments, the therapy, I just learnt to get on with it.
    I watched his peers leave him behind, I watched other parents staring at us and making comments about his behaviour, after all he ‘looks’ pretty normal, so he must be a naughty child surely. ( This is what I still find hardest, people can be so cruel, my boy was trying to look at his new school jumper I was queuing to pay for. He was on reins and wasn’t doing anything but taking his jumper out the packing, We were asked to leave as she was sick of kids touching merchandise before it’s bought!! I said ‘ I’m so sorry, he has additional needs and wants to feel it’ to which the store owner who should have known better replied ‘oh don’t they all love, don’t they all’. After having a complete break down on my knees sobbing the horrified woman couldn’t apologize enough when I explained he is brain damaged and has no connections for speech, and we were there buying uniform for a school we were being forced to go to.

    I cried constantly his first day of school in the specialist unit, like I’d let him down. Until I realised something, my son had the biggest smile on his face when I picked him up. I watched him hug his new teacher and sign ‘i love you, thankyou’ in makaton, and she signed back. It was the very first moment my son had been able and felt brave and encouraged enough to communicate with someone other than his parents.
    In that moment I realised that though our life is very different from how I ever imagined it, and every day is a new challenge with several other diagnosis on top including epilepsy, OCD and anxiety, I see it now.
    My son is strong, brave, absolutely hilarious (after 3 years of intensive speech therapy in school that will continue for many years to come, there is now never a quiet moment in this house) loving and above all a bright little boy despite all his challenges and I wouldn’t have him any other way. I am so proud of him and I owe alot of it to the very special people day in day out that take care of him, educate him and above all from that very first day in the specialist unit they saw HIM, and all he could and will be (a mechanic by the way, he tells me everyday, even a price list. I am going to be his receptionist apparently) They take care of me to. The very place I was terrified of him being is now our ultimate solace. They adore him, doesn’t matter if he spends the day causing havok, they still ruffle his hair as he gets in the car. They support me completely.

    We are lucky enough to have a couple of very supportive non judgemental friends who make me feel so much stronger when we go to places as they are braver than me, a whole lot scarier than me and have known us pretty much throughout our journey and good kind families.
    I just want to say I know you must be terrified of what comes next, perhaps educational support, or standing tall against judgement Al ‘outsiders’ etc but just know that with the right help support and understanding, the world is your little girls oyster. Xxxx

    • heelsandhooves
      Author
      June 4, 2018 / 11:10 pm

      Hayley, you are an inspiration. After everything you went through, you’ve still managed to find the positive. To see your gorgeous boy for the wonderful little person that he is. Your strength, support and bravery, along with his own, is exactly what has got him to where he is today.

      It’s so lovely to hear how well your boy has got on at the specialist unit. Lottie is currently in a mainstream preschool, but we don’t know what the future of her education will hold, so it’s a big help to hear how others have got on in that environment. I think decisions, or even moves like that are really tough, because they are like markers of how your child’s life is so different to other children. So I totally understand why your partner struggled with it. We’ve recently decided to defer Lottie’s start of school by a year (she is summer born, so it was a possibility even without her additional needs), and I agonised over it. When I look back rationally, it’s the only decision that makes sense, she spends another year in preschool, where they are more specialised in her developmental age, she has a higher staff to child ratio, etc, etc. Yet somehow, it felt like another big realisation that she wouldn’t cope with her peers.

      I think other people’s reactions, and to a degree, the fear of how other children will react to Lottie in future, is one of the hardest things for me to come to terms with. I’m so sorry that you’ve experienced cruel and inconsiderate people. Lottie is young enough at the moment that other children are very accepting and we have been lucky enough to not have any first hand experience of adults being rude. If I could change one thing about human beings, it would be to make them kinder, more accepting of others who are different to them.

      You’re also exactly right, I’m terrified about Lottie’s future, but hearing such positive stories as yours is hugely helping me to realise that with the love and support she has around her, we’ll get her through whatever she comes up against.

      Your comment means so much to me, thank you xxxx

  10. June 5, 2018 / 10:30 am

    I’m so sorry you all have to go through this, but fingers crossed you get the extra help needed. Every person is different, we all have different skills and strengths, and so does Lottie. Hugs.

    • heelsandhooves
      Author
      June 6, 2018 / 9:42 pm

      Thank you so much. You’re right, she has some amazing qualitites, so we need to focus on those xx

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.