Bethany update

[Skywalker]

I know its been a while since I last gave an update but I have been finding it hard to write to be honest .

Its sad to say as I put it shes starting to lose a little bit , This brings lumps to my throat writting this .

We decided to take her off her medication as only 1 in 3 people with her condition can have there seizures controlled by medication and we wanted to see what/if any changes there would be without it .

Happy to say her development shot right up in 2 weeks of coming of the meds and we started to see the true Bethany which was such a joy but then the seizures got extremly bad and ended her up in a few worse for ware states so she was put onto a new medication and this is not helping either .

We have been trying to get her a statement to join a normal school as we want her to try and develop and be around normal children and for some reason were hitting problems trying to get her a 1-on-1 at a normal school and I have told them that if she doesnt get it im with holding her from education .

I have also recently been diagnosed with Asthma and spent my fair share of time in hospital aswell but I have given up smoking on the plus side

 

[VirtualAdept]

I've said it before and I'll say it again... you and your entire family group are incredibly brave and an inspiration to others.
I'm really sorry to hear about her deterioration. Anything more than that would be trite, so I shall say no more except good luck

Mads

 

[Mr.Pink]

Have just read your previous post and really, really hope things improve for all of you. I have a young boy myself who was strong medication from 6 months and has learning difficulties and a statement.

Its hard but keep positive. I am like a man possesed and fight tooth and nail making sure Ben gets the education and support to help him fulfill his potential.

I really do wish you all the best!

 

[Aero]

Once again good luck with the future to you and ll your family. You've been through more than your fair share I imagine.

As VirtualAdept said you are an inspiration and incredibly brave.

Warren

 

[TaKeN]

Sorry to hear that Skywalker

I wish you all the best.

 

[yermum]

I am sure that every single person who has followed your family's story on this forum would wish you well.

I know that it is difficult when you feel like you're fighting every step of the way and there is very little that we can do except let you know that we're here for you whenever you need us.

 

[Jonny69]

Sorry to hear that, but do keep enjoying your dad-times with Bethany

 

[Cosimo]

Sorry to hear that. Chin up and wishing you all the best.

 

[do_ron_ron]

Desperately sorry for you and your child.

While trying to get your child into a normal school have you considered the effect on the other young children if Bethany had a bad seizure. One of my younger brothers had one at his house and his girlfriend who had never seen one panicked and still takes about it.

 

[Voltar]

Really sorry to hear about that Skywalker


All the best mate

 

[Skywalker]

Desperately sorry for you and your child.

While trying to get your child into a normal school have you considered the effect on the other young children if Bethany had a bad seizure. One of my younger brothers had one at his house and his girlfriend who had never seen one panicked and still takes about it.

Yes ofcourse , I'm not going to bottle her up so no one see's her or her seizures . My sister-in-law saw one of the newer fits and ran out the room crying her eyes out saying she couldn't believe something so horrible could happen to something so sweet and how we can deal with that everyday . She was panicing for hours after she saw it and couldn't calm down so I had to take her back in the front room to say to her look at Bethany now sitting here smiling and this is why we do it everyday as Beth sat there being her sweet self as always which made me start crying (what a big poof I am)

I have and always will push Bethany to exceed to a higher level than we and the doctors ever think possible . Putting her in a special needs school will only hinder her as most the children in them here are terminal including a friends son and who wants to be in a school where friends are dying around you .

Anyway a pic as I normally like to do so

She has a liking for hanna whatever her name is if you didn't guess

 

[JodieO]

She looks lovely Sorry to hear about the troubles I would say though, don't give up with the school and make sure you put everything in writing. Contact the LEA and get a copy of the school's SEN policy if you haven't already. There is no real reason why the school couldn't apply for extra funding for a 1 on 1 teaching assistant for Bethany, a friend of mine has this with her son who has Autism and he is in my daughter's class at school. The other children are all "fine" with anything that happens and, actually, I think it's good for them to be around lots of different people.

Keep at it and good luck.

 

[Skywalker]

She has a 1 to 1 at nursery at the moment so couldn't understand why she needs the statement to get one in the next school . They have already taken 3 months getting details from all her doctors and theropists etc so cant understand if they need to contact that many people they dont understand she needs it .

 

[ColdAsIce]

School budgets are being slashed, I know for a fact the school I work in has to reduce outgoings by about 6%

Support teachers have been cut over the last two years to save on paying their wages. Schools are being put in an impossible situation.

 

[^TANK^]

I wish I could add something more positive to this thread but I cant really, just that you're a better man than me as your situation would break me.

 

[Hades]

As a father with a little daughter I really feel for you. I wish you all the best.

 

[ten1a]

My brother also has special needs. He is 21 and has recently been diagnosed with epilepsy, so I totally understand where you are coming from. It is such a terrible thing to see someone you love go through, and no words can describe the fear I feel every time he has one

It is a struggle to get what you think is best for your child (I've watched my parents do this forever!) but you have to keep going - don't give up.

My brother was at a "regular" school for a couple of years or so before my parents eventually fought for him to attend a special school. It takes time and every effort to fight the council/LEA to agree with you (especially as they pay for 1-to-1's) but keep going! It is worth it in the end as I'm sure you'll agree.

Good luck Bethany is beautiful by the way