“I may have a daughter with autism”

Imagine giving your child a few packets of sweets, a can of cola and just to top it off nicely a bowl of ice cream topped with sprinkles. You watch their eyes widen, their body begin to go at extra fast, their voices louder and they become uncontrollable. That’s what it’s like to live with P1 right now.

As soon as those little bluey green eyes open for the day she is loud, she jumps all over the place, grabs you, doesn’t listen to anything from the smallest insignificant things to really important things, she’s always flapping her limbs about and generally uncontrollable. That’s just one side of the problem.

P1 seems unable to understand when she’s done something wrong. She cannot process her emotions or the emotions of others. Being told to do something like put her coat on ends up with a full blown mental breakdown. The school are noticing issues with her concentration which is effecting her school work.

She’s hypermobile which I think disguises a lot of her behaviour problems. She’s unable to run around like other children so everything she bottles up comes out in a ball of fury, in one place. She’s also got dyspraxia and mild diplegia which is effecting her writing and she is falling behind.

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Since going into Year 2 things have got incredibly worse at home for us. There’s snippets of the day when she is such a cutie and of course I love her no matter what. But the majority of the day is spent asking her to calm down, to stop jumping on things like her sisters or sofa, to be quiet or not so loud. I watch her against her younger sisters and I really worry. She can’t see that her sisters are telling her to stop because she’s hurting them, then has a huge shouting, slamming and stomping situation when she’s told off for pushing her sisters.

The issue is that the school don’t see this side of her. Apparently she’s calm and well behaved. She’s social and kind to her friends. Her Year 1 teacher once said to me “P1 doesn’t have autism, children with autism can’t just switch it off” and that has really stayed with me. It’s not true. They can. Some children really thrive in a routine and P1 is clearly one them. When she comes back from a weekend with my Mum, she’s a nightmare to get back to normal. She reacted rather badly to having two sisters arrive in her life.

Last week we had a meeting at the school with an Educational Psychologist. I was asked to go in and meet the EP before she was to assess P1. I wasn’t sure what they were there for exactly, behaviour or school work or what, but I wrote a list of the things that worry me about P1 so that I was prepared and ready to answer anything they asked me. I’m so glad I did express all my concerns because for the first time ever I feel like I was listened too.

The EP agreed with me that children with autism can cope with the condition better in certain situations. That girls show different characteristics to boys. For example, P1 may be able to cope in social situations better than other situations. The meeting was eye opening for both myself and I think her teacher. It was quite emotional to finally feel like someone was on the same page as me and going to actually help us.

I have no idea if P1 has autism of any sort. I understand it’s a huge spectrum because my brother has Aspergers which took a very long time to diagnose. I am really looking forward to the report in the next few weeks and I feel like this year has started well. All I’ve ever wanted is the best for P1. For her to be happy and content with life and with herself. 

I honestly feel like I haven’t been the best mum to her recently as I’ve struggled to come to terms with the way she’s behaving. Struggling to accept it because this isn’t how I want my daughters to behave. But this could just be her, the way my future is set to be, the way her future is to be and I have to grow up and be her support. I may have a daughter with autism. 

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30 comments

  1. Aw hun sounds like a tough situation I am glad you got to talk to someone and put all your thoughts and concerns forward. Hopefully you will get some answers soon xx

  2. With no personal experience of autism without our family I have no wise words for you, but I’m so glad someone finally listened to you and understood your concerns. It must be really tough dealing with her behaviour with 2 other daughters to take care of but I’m sure you are doing your best hun xxx

  3. Great honest post, loved it! I am sorry you have these things to deal with, I expect its expecially hard when its constant and your tired too. I hope you get some answers and therefore some help that you need so that she can progress at school and you can feel more in control x

    • lifewithpinkprincesses

      I am lacking so much control that it scares me. She has no idea of the world around her and that makes me so anxious

  4. Oh bless you – it must be so tough not having the answers at the moment. But do you know what, you sound like a bloody amazing Mum. The fact that you are so honest with how you feel makes you an even better one in my opinion. I have just read the comment above and have also heard something similar re food – my cousin is autistic and his mum (my first cousin) is a nutritionalist and she was convinced that his difficulties were exacerbated when he had wheat/gluton or any refined sugars or heavily processed food. She basically tried to do a “paleo” type diet and she noticed a huge difference. I also try to eat this way as can have really bad IBS and it has helped me a lot. It hasn’t meant cutting out all treats though and so if you do consider it, it really doesn’t have to be that restrictive. I hope things get easier for you soon lovely xxx

  5. It sounds like you are having a really tough time. I am so glad you had someone who actually listened to your situation and understood you. That is always a great support in itself. P1 is such a cutie, she has such a lovely smile in her photo.That is a great comment from Belinda and definitely something you should look into. I definitely find with my two and certain foods they eat. Good luck lovely, sending you lots of well wishes and hopefully you get support where you need it. x

  6. Please don’t be so hard on yourself. You are the best mum that you can be and no matter what the reasons are for her behaviour, it’s something you’ll have to come with terms with and it won’t just happen overnight so give yourself time to digest what is going on. It sounds like it’s really tough but believe me, you are doing a good job. 🙂

    • lifewithpinkprincesses

      Thank you so much Jenna. This means a lot. As a mum we are always worrying about our kids and whether we are doing the right thing aren’t we.

  7. It’s good to hear that the school have the educational psychologist involved, that’s really the first step to getting support in school. It’s worth speaking to your doctor about your concerns, she can refer you to a specialist who can help with diagnosis, and can give you advice on her behaviour issues at home.

  8. Oh bless you, i think it’s great you’ve written this post, it sounds like it’s been challenging for you all but hopefully you’ll get the answers you’re after soon! You’re such a good mum and supporting her the best you can xx

  9. It’s really hard when you don’t know exactly what’s going on and don’t have any answers to all your questions. I really hope you get to the bottom of it and are able to come to terms with any changes in your life. I’m sure your doing the best you can with a difficult situation x

  10. Sweetheart. I applaud you for writing this post. It must be such a worrying time. You are doing all the right things and hopefully you will have some answers soon. Just remember you are not alone xx

    • lifewithpinkprincesses

      Thank you so much for your kind words. I have no idea what I’m doing but I hope it’s in the right direction.

  11. Oh bless you! You are doing the best you can and you are supporting which does make you the best mother to her lovely. don’t put yourself down

  12. Oh Jodie, this is a fact that is hard to acknowledge, even to yourself, and you are very brave! I think the first step on getting her better is seeking for help, which you are doing. I hope there will be a diagnosis soon, if that is the case, and help for you in the years to come, lovely. but whatever way this will develop, do remember that you are a great mum who loves her and wants the very best for her future.xx

    • lifewithpinkprincesses

      Thank you so much for this comment. This was a really hard post for me to publish. She’s a lovely girl deep down it’s just things are getting a little bit too much to deal with lately.

  13. It is a huge spectrum, which is why one person’s opinion cannot be taken as the only one. It’s good that you are finally getting some help and support. Keep pushing it because it’s the only way to go. There is a lot of support on-line for parents of autistic children too, so it might be worth looking some of them up. I can let you know a couple of them if you want.

  14. Well done for writing this post, you’re a good mum no matter what and I completely understand how your child’s behaviour can affect the way you feel about them. As you know my son, Logan, has autism and I sometimes hate the way he treats his sister or others but I also know that he can’t help it. It’s the way he’s wired, he deals with the world differently so the other half and I have had to come up with coping strategies for him. It has helped but there’s never a dull moment and something always happens. I feel like that parent at school, I’m always waiting to hear who he’s hit today!

    I hope you get support and help from the school and local health resources etc. I’ve been on so many different parenting course but they do help and if anything it’s nice to talk to parents in the same boat.

    As for getting dressed etc my boy still won’t dress himself, he does it at school as it’s in the routine but at home he takes forever or just doesn’t do it. He hand flaps a lot and gets quite excited by certain things which trigger his senses into overload. I wouldn’t have him any other way though. Oh and autism normally runs in families, it does with my other half. Be sure to tell the health professionals that your brother is autistic as they like to know family history.

    Anyway enough of my rambling, you’ve probably heard enough 🙂 But do give me a shout if you want to chat xx

    • lifewithpinkprincesses

      I am so thankful for your ramblings!! Seriously thank you for being a great support and taking the time to comment. I really appreciate it. I think we just need to be told that that is how she is, rather than just looking at her like the naughtiest child in the world at the moment. It’s been really difficult.

      • You’re welcome. It really is difficult and going through the diagnosis process isn’t easy. I really hope you get the help and support you need. Also when you said P1 sometimes takes a meltdown when asked to do a task could she have PDA (pathological demand avoidance)? Give it a wee google, might help.

  15. It sounds like such a challenging situation for you all. P1 sounds like such a darling, sweet girl and It is so wonderful that she has a family who are so loving and supportive, and looking for answers. Great that you are working so closely with P1’s school, regarding your concerns.

    Another factor to possibly consider, is food sensitivities. May not be causing all of the problems, but in many cases, can be contributing to the problems.

    A book called ‘Fed Up’ , by Sue Dengate, may be of help to you. ( I’m Australian, so there may be alternate resources available in the UK). It has made enormous impact in my life ( I have several food sensitivities) and also in the life of my youngest son, who is now 4. By removing certain food chemicals from his diet, which are troublesome to him, it has really helped him to settle down with his behaviours, stop frequent night waking and become much less erratic.

    All the best.

    • lifewithpinkprincesses

      Oh wow. I never even thought of food to be a key for behaviour. Thank you so much for your kind words and taking the time to comment. This was a really difficult post to write but I’m glad I have.

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