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Mum to a child with additional needs

icedoveukicedoveuk Posts: 11Member Connected
edited August 30 in Parents and carers
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 :-) 



Replies

  • Adrian_ScopeAdrian_Scope Posts: 2,984Administrator 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.
    Senior Online Community Officer
    Scope
  • Firefly123Firefly123 Posts: 293Member 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.  :) 
  • April2018momApril2018mom Posts: 1,660Member Disability Gamechanger
    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_ScopeChloe_Scope Posts: 3,940Administrator Scope community team
    Hi @icedoveuk and a very warm welcome to the community! How are you doing at the moment?
    Chloe
    Online Community Officer
  • icedoveukicedoveuk Posts: 11Member 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!! 
  • April2018momApril2018mom Posts: 1,660Member Disability Gamechanger
    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. 
  • icedoveukicedoveuk Posts: 11Member 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. 
  • April2018momApril2018mom Posts: 1,660Member Disability Gamechanger
    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. 
  • icedoveukicedoveuk Posts: 11Member 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

  • April2018momApril2018mom Posts: 1,660Member Disability Gamechanger
    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_ScopeChloe_Scope Posts: 3,940Administrator Scope community team
    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!
    Chloe
    Online Community Officer
  • icedoveukicedoveuk Posts: 11Member 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_ScopeChloe_Scope Posts: 3,940Administrator Scope community team
    Sorry to hear that @icedoveuk, I hope the rest of your day has gone okay and that she is getting on okay at school! :)
    Chloe
    Online Community Officer
  • April2018momApril2018mom Posts: 1,660Member Disability Gamechanger
  • icedoveukicedoveuk Posts: 11Member 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
  • April2018momApril2018mom Posts: 1,660Member Disability Gamechanger
    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. 
  • April2018momApril2018mom Posts: 1,660Member Disability Gamechanger
    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_ScopeChloe_Scope Posts: 3,940Administrator Scope community team
    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. :)
    Chloe
    Online Community Officer
  • April2018momApril2018mom Posts: 1,660Member 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. :)
    They love it. We are on the road driving to a museum for the day. 
  • April2018momApril2018mom Posts: 1,660Member Disability Gamechanger
  • icedoveukicedoveuk Posts: 11Member Connected
    @April2018mom I had to go into work this morning but my husband said that Evie was very happy this morning (having slept through the night!) I understand from her communication book that today was not so great. There were a few 'time out' moments. However, she is testing her boundaries with school as she hasn't been there for a while. She also DOES NOT like being told what to do!
     Thank you for sharing a bit of your story with me. It meant a lot. xx
  • April2018momApril2018mom Posts: 1,660Member Disability Gamechanger
    No problem @icedoveuk. Forgot to mention my son is 2 years younger than Evie. He was born in 2016 and this is his first year of education. 
  • icedoveukicedoveuk Posts: 11Member Connected
    Same age as my son - Daniel :-) Although, he is still in nursery and will be starting school next year (June baby). It feels like a blur with all the troubles and celebrations you go through with your little ones....next thing, they will be teenagers!
  • April2018momApril2018mom Posts: 1,660Member Disability Gamechanger
    icedoveuk said:
    Same age as my son - Daniel :-) Although, he is still in nursery and will be starting school next year (June baby). It feels like a blur with all the troubles and celebrations you go through with your little ones....next thing, they will be teenagers!
    Yep. I also had twins (even scared my mom when I told her) one boy one girl born almost 3 years ago just before Christmas 2016. They keep me on my toes constantly! 
  • April2018momApril2018mom Posts: 1,660Member Disability Gamechanger
    Good luck for tomorrow @icedoveuk!
  • Adrian_ScopeAdrian_Scope Posts: 2,984Administrator Scope community team
    Hi @icedoveuk, year 1 can seem like a huge step up to them from receiption/pre-school as it's a lot more formal. 
    Did she go in happily today? I hope she's getting on okay. :)
    Senior Online Community Officer
    Scope
  • icedoveukicedoveuk Posts: 11Member Connected
    Hi @April2018mom / @Adrian_Scope ;
    Apologies for not replying. It's been a bit of a tough week emotionally for my husband and I and with school as well. 
    Evie was sent home yesterday with loose stools (this is a constant battle we have). She has always had them and today we spoke with her neurologist who will be writing to the school to confirm that she can still attend school rather than have to stay out for 48 hours, unless it is obviously a bug - which it isn't. It has meant a lot of messing around as I work 4 days and my husband is full time. We have also had a couple of nights with little sleep which always makes things worse!! 
    However, the neurologist today has told us she will be referring us to a Sleep clinic, also the paediatrician that we previously saw (because the school are once again mentioning about the need for her to go into special provision) and from what I understand, he can get things moving on this. We are also being referred for gastro to see if there is anything else that could be causing issues with her bowels and then we are also being booked in for another MRI of Evie's brain. She has had 3 so far in her short life but this one will be after 2 massive (status) seizures that she had last year that have shown a definitive change in her development. At the age of 4, she was completing jigsaws of up to 75 pieces without any assistance. Now, she can barely do a jigsaw of 35 pieces. We feel there has been significant regression / possible further brain damage caused by these seizures so we are getting an up to date MRI for this. 
    I also got a call to book in our respiratory appointment as well because Evie has had weaker lungs from birth (following the meconiam aspiration and also the holes she had in both lungs that require chest tubes to heal). So, all in all, it's been a quiet week!! (Honestly, I have to laugh, otherwise I will cry (again!) 

    @April2018mom ;
    I really admire that you have twins as well. A lot to cope with as well and a handful I can imagine!! I hope your week has been going ok...xx
  • April2018momApril2018mom Posts: 1,660Member Disability Gamechanger
    edited September 11
    icedoveuk said:
    Hi @April2018mom / @Adrian_Scope ;
    Apologies for not replying. It's been a bit of a tough week emotionally for my husband and I and with school as well. 
    Evie was sent home yesterday with loose stools (this is a constant battle we have). She has always had them and today we spoke with her neurologist who will be writing to the school to confirm that she can still attend school rather than have to stay out for 48 hours, unless it is obviously a bug - which it isn't. It has meant a lot of messing around as I work 4 days and my husband is full time. We have also had a couple of nights with little sleep which always makes things worse!! 
    However, the neurologist today has told us she will be referring us to a Sleep clinic, also the paediatrician that we previously saw (because the school are once again mentioning about the need for her to go into special provision) and from what I understand, he can get things moving on this. We are also being referred for gastro to see if there is anything else that could be causing issues with her bowels and then we are also being booked in for another MRI of Evie's brain. She has had 3 so far in her short life but this one will be after 2 massive (status) seizures that she had last year that have shown a definitive change in her development. At the age of 4, she was completing jigsaws of up to 75 pieces without any assistance. Now, she can barely do a jigsaw of 35 pieces. We feel there has been significant regression / possible further brain damage caused by these seizures so we are getting an up to date MRI for this. 
    I also got a call to book in our respiratory appointment as well because Evie has had weaker lungs from birth (following the meconiam aspiration and also the holes she had in both lungs that require chest tubes to heal). So, all in all, it's been a quiet week!! (Honestly, I have to laugh, otherwise I will cry (again!) 

    @April2018mom ;
    I really admire that you have twins as well. A lot to cope with as well and a handful I can imagine!! I hope your week has been going ok...xx
    It started off alright. Today was a hard day however for other reasons. In 2001, I watched my aunt die after two commercial planes struck the World Trade Center.
    The twins distracted me today from what used to be a difficult day. On a much more positive uplifting note, my son had a evaluation today. His cognitive and speech development are on track. I even managed to fit in a walk today this morning. My partner also was offered a new classroom job which hopefully he will start soon too! And I managed to finally get my hair cut and nails filed yesterday morning as well.
    Best of luck with the appointments. We have a appointment on Monday of next week to discuss respite care with a social worker and another appointment later in the week. 
  • icedoveukicedoveuk Posts: 11Member Connected
    @April2018mom ;
    I'm so sorry to hear your Aunt was involved in the awful attacks. We were on holiday (at my Aunt's) in Oregon when it happened. It was also my Mum's birthday. My Mum passed away at the age of 53 (2 years after the attacks) and today would have been her 70th birthday. Every year I cry over what happened with the World Trade Center and every year, I cry over the huge loss everyone suffered there and also for my Mum (cancer sadly took her). 
    So very happy to hear that cognitive and speech development are going in the right direction. And to actually get some you time is great. I struggle to do that at the moment!! I have been considering looking at respite care as well as we could really use the support. I just don't know where to start with that! We already have short breaks funding from the Local Authority but that is only for providing one to one support at afterschool club and we still have to put additional £1000 towards it to cover it all. 
    Any advice on where you started with respite would be great to hear if you can!
  • April2018momApril2018mom Posts: 1,660Member Disability Gamechanger
    edited September 11
    icedoveuk said:
    @April2018mom ;
    I'm so sorry to hear your Aunt was involved in the awful attacks. We were on holiday (at my Aunt's) in Oregon when it happened. It was also my Mum's birthday. My Mum passed away at the age of 53 (2 years after the attacks) and today would have been her 70th birthday. Every year I cry over what happened with the World Trade Center and every year, I cry over the huge loss everyone suffered there and also for my Mum (cancer sadly took her). 
    So very happy to hear that cognitive and speech development are going in the right direction. And to actually get some you time is great. I struggle to do that at the moment!! I have been considering looking at respite care as well as we could really use the support. I just don't know where to start with that! We already have short breaks funding from the Local Authority but that is only for providing one to one support at afterschool club and we still have to put additional £1000 towards it to cover it all. 
    Any advice on where you started with respite would be great to hear if you can!
    Thanks. I hope you don’t mind me asking but was your mom in or near the WTC/Pentagon at the time of the attacks?  
    Regarding your other question the NHS has a useful guide on social care services. 
    https://www.nhs.uk/conditions/social-care-and-support-guide/. Do you have a social worker or not? My son’s social worker helped me find out about respite care and we are meeting with another social worker on Monday for a needs assessment to be done. 
  • icedoveukicedoveuk Posts: 11Member Connected
    No, she was in Oregon with us on holiday. We had been to New York before but a long time ago. We were out in America for 3 weeks when the attacks happened but then had to return home (obviously) which was about 2 weeks after. We attended candle lit evenings with the community where my Aunt lived to pay our respects. An awful, awful time. Sadly the attacks mark the same day as my Mum's birthday which make it all the more sad for me. Myself and my family were luckily unaffected by 

    Thank you for the link. There is just so much information out there, you can be blinded by it!! xx
  • April2018momApril2018mom Posts: 1,660Member Disability Gamechanger
    I still do not think I can ever forget. We lit a candle for the victims of the attacks first thing this morning and said a prayer too. 
    No problem. My advice is to call your council social services team to request a needs assessment pronto. That link is a starting point. 
  • April2018momApril2018mom Posts: 1,660Member Disability Gamechanger
    And yes it makes things easier. I honestly do not know how parents of non verbal kids with severe LD cope. I thought I had it bad because my son is non ambulatory with serious bladder issues but thanks for helping me see the bigger picture! 
  • Sam_ScopeSam_Scope Posts: 7,569Administrator Scope community team
    @April2018mom Please remember to take care to present your views tactfully.
    Scope
    Senior online community officer
  • Adrian_ScopeAdrian_Scope Posts: 2,984Administrator Scope community team
    No need to apologise @icedoveuk, I'm sorry to read it's been a tough week for you and your family. 

    A friend's daughter has a bowel condition and she's found the same battle that the school are regularly sending the daughter home misunderstanding that it's not the same as a bug and there's no need for her not to be at school A strongly worded letter from her GP helped resolve the matter so I hope it's the same for you. 

    Your daughter is in mainstream school at the moment isn't she? You mentioned that they are pushing for her to go into special provision and I just wondered how you felt about this? Do you have a preference? 
    Senior Online Community Officer
    Scope
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