Mum to a child with additional needs

icedoveuk

@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

April2018mom

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. 

icedoveuk

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!

April2018mom

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! 

April2018mom

Good luck for tomorrow @icedoveuk!

Adrian_Scope

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.

icedoveuk

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

April2018mom

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. 

icedoveuk

@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!

April2018mom

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. 

icedoveuk

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

April2018mom

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. 

April2018mom

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_Alumni

@April2018mom Please remember to take care to present your views tactfully.

Adrian_Scope

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? 

April2018mom

How was school this week @icedoveuk?