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Mum to a child with additional needs

icedoveuk
icedoveuk Member Posts: 11 Connected
Hi :-) 

I'm Nicola and I have joined the group today to seek out support / advice / help others if I can and generally know that I am not alone in the world. 

A little about my story - I have 2 children (5 year old daughter & 3 year old son). My daughter was born suffering HIE grade 2, meconiam aspiration syndrome and nearly didn't make it through the night or some of the following days. She had potential seizures on the first few days and was hooked up to every machine possible at the NICU. 20 days later, we were able to take her home but were warned that we had to wait and see what her future may hold. HIE is a lack of oxygen and blood flow for a period of time to the brain. She was without oxygen for quite some time and we now see the results of this. 
She has focal seizures and tonic clonic seizures (albeit being better controlled at the moment with 2 strong medications) and also has global development delays alongside learning disability and possible autism (undiagnosed). Every day is a struggle with her behaviour. She is a stubborn little girl who needed that fight to survive, but now it is adding to the stress of her behavioural and emotional issues. She struggles to communicate (often parroting words) and gets very easily (and understandably) frustrated when she can't explain what she needs or wants. We are still toilet training after regressing following a massive status seizure that lasted 2 1/2 hours. She doesn't have an awareness of needing the toilet which can be very challenging for both us as parents and the school. 
Anyway - just wanted to say hi and look forward to looking at some of the discussions that take place.
Thanks for reading :-) 



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Comments

  • Adrian_Scope
    Adrian_Scope Posts: 8,551

    Scope community team

    Hi @icedoveuk and a warm welcome to the community!

    Your daughter sounds like she's a tough cookie, but also a bit of a handful at the moment. How are you coping?

    Many of our members are parents of children with additional needs, so I hope you'll find lots of brilliant support here.

    I'm not sure how big your support network is, but we've recently launched our Parents Connect service if it's of interest to you.
    Community Manager
    Scope

    Tell us how to make the community better for you. Complete our feedback form.
  • Firefly123
    Firefly123 Member Posts: 525 Pioneering
    Hi and welcome I joined the site for the same reason. I have learned lots of useful information and know there are many of us going through the same experiences.  :) 
  • April2018mom
    April2018mom Posts: 2,868 Connected
    Hello @icedoveuk

    I signed up for the same reason. To find support and advice on a number of topics. Feel free to take a look around or ask a question. 
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Hi @icedoveuk and a very warm welcome to the community! How are you doing at the moment?
    Scope

  • icedoveuk
    icedoveuk Member Posts: 11 Connected
    Thank you for everyone's lovely comments. I hope that I can help others as well as seek support here. 
    @Chloe_Scope - right now? I am a bundle of stress. My daughter, Evie, will be starting Year 1 in mainstream tomorrow. The summer holidays have been a huge challenge with the lack of routine and behavioural difficulties so it has ended up being a last minute write up in her communication book to summarise the summer holidays! Taken the day off work to be there for her first day and will the  be cracking on with housework!! 
  • April2018mom
    April2018mom Posts: 2,868 Connected
    icedoveuk said:
    Thank you for everyone's lovely comments. I hope that I can help others as well as seek support here. 
    @Chloe_Scope - right now? I am a bundle of stress. My daughter, Evie, will be starting Year 1 in mainstream tomorrow. The summer holidays have been a huge challenge with the lack of routine and behavioural difficulties so it has ended up being a last minute write up in her communication book to summarise the summer holidays! Taken the day off work to be there for her first day and will the  be cracking on with housework!! 
    Good luck! My little sister is also beginning Year One tomorrow. 
  • icedoveuk
    icedoveuk Member Posts: 11 Connected
    icedoveuk said:
    Thank you for everyone's lovely comments. I hope that I can help others as well as seek support here. 
    @Chloe_Scope - right now? I am a bundle of stress. My daughter, Evie, will be starting Year 1 in mainstream tomorrow. The summer holidays have been a huge challenge with the lack of routine and behavioural difficulties so it has ended up being a last minute write up in her communication book to summarise the summer holidays! Taken the day off work to be there for her first day and will the  be cracking on with housework!! 
    Good luck! My little sister is also beginning Year One tomorrow. 
    @April2018mom best of luck to her as well!! Super exciting and scary at the same time!! Had to make the decision whether to stay in mainstream. 
  • April2018mom
    April2018mom Posts: 2,868 Connected
    icedoveuk said:
    icedoveuk said:
    Thank you for everyone's lovely comments. I hope that I can help others as well as seek support here. 
    @Chloe_Scope - right now? I am a bundle of stress. My daughter, Evie, will be starting Year 1 in mainstream tomorrow. The summer holidays have been a huge challenge with the lack of routine and behavioural difficulties so it has ended up being a last minute write up in her communication book to summarise the summer holidays! Taken the day off work to be there for her first day and will the  be cracking on with housework!! 
    Good luck! My little sister is also beginning Year One tomorrow. 
    @April2018mom best of luck to her as well!! Super exciting and scary at the same time!! Had to make the decision whether to stay in mainstream. 
    Oh we did not have to decide. Based on her needs, we finally decided to homeschool her but follow the Year 1 schemes of work during all of her lessons. She lives on a US military base with my mom since she is still working for the military training new recruits and also doing paperwork on the base. I also spent years on the base. There are no good schools nearby to send her to. 
  • icedoveuk
    icedoveuk Member Posts: 11 Connected
    @April2018mom Norfolk based? I am :-) We have opted to stay as part of Evie's developmental problems are with social and emotional. She absolutely needs to see others and how they behave. To home school must be tough but I think that is an incredible and strong choice to make. Xx

  • April2018mom
    April2018mom Posts: 2,868 Connected
    icedoveuk said:
    @April2018mom Norfolk based? I am :-) We have opted to stay as part of Evie's developmental problems are with social and emotional. She absolutely needs to see others and how they behave. To home school must be tough but I think that is an incredible and strong choice to make. Xx

    It is. Good luck for you both! 
    And no I am in Surrey. When my parents went back to the US, I stayed here alone but I keep in contact with them. My sister’s development issues are physical only she has spastic diplegia cerebral palsy diagnosed in the early part of 2016. She has had corrective surgery already. 
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Good morning @icedoveuk! How did it go this morning? I can see why it would be a stressful time, but I hope she has a great first day back!
    Scope

  • icedoveuk
    icedoveuk Member Posts: 11 Connected
    @Chloe_Scope This morning was a bit tough. Evie tends to wake during the night time and last night was from 2am until 5am where she was very hyper and wouldn't settle. Hoping she gets on ok at school. We all woke up a bit late!!
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Sorry to hear that @icedoveuk, I hope the rest of your day has gone okay and that she is getting on okay at school! :)
    Scope

  • April2018mom
    April2018mom Posts: 2,868 Connected
  • icedoveuk
    icedoveuk Member Posts: 11 Connected
    @April2018mom
    @Chloe_Scope
    Thank you ❤. Well, she apparently got on really well. She has a one to one which we are lucky to have. She got her straight into the work that is set for Evies level and it was a good day with no issues. She just got a bit tired towards the end (not surprising though!) 
    @April2018mom
    How about your end? Did first day go well?xx
  • April2018mom
    April2018mom Posts: 2,868 Connected
    icedoveuk said:
    @April2018mom
    @Chloe_Scope
    Thank you ❤. Well, she apparently got on really well. She has a one to one which we are lucky to have. She got her straight into the work that is set for Evies level and it was a good day with no issues. She just got a bit tired towards the end (not surprising though!) 
    @April2018mom
    How about your end? Did first day go well?xx
    It went okay but my two pupils are toddlers so formal learning is not possible just yet. I spent part of today teaching them about water. They played with it too. 
    As for my 5 year old sister, she did alright. Today she started off with math and then did history followed by a quick lunch. After lunch, she had a spelling lesson after which it was time for science. Lessons stopped by four pm for the day. 
  • April2018mom
    April2018mom Posts: 2,868 Connected
    And I too am the mom of a child with special needs. My son has no leg function due to paralysis and uses a wheelchair. He has braces and shoes too. He was born with clubbed feet as well. None of this tells you about him however. Today he helped me bake a cake, clean up his room and behave himself. 
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    That's great @icedoveuk! I'm glad she has the right support in place and that the day went smoothly!

    @April2018mom, sounds like you had a really busy day! I hope they all enjoyed it. :)
    Scope

  • April2018mom
    April2018mom Posts: 2,868 Connected
    That's great @icedoveuk! I'm glad she has the right support in place and that the day went smoothly!

    @April2018mom, sounds like you had a really busy day! I hope they all enjoyed it. :)
    They love it. We are on the road driving to a museum for the day. 
  • April2018mom
    April2018mom Posts: 2,868 Connected

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