Parents of children with complex physical/mobility needs

[Tegans Mama]

How do you feel about your LO going to school?

Tegan starts preschool very soon and I'm really nervous. She has to be lifted a lot (she is paraplegic and uses a wheelchair) and I'm nervous about another person having to do that. At the minute we are the only people who look after her, except respite for one day a month.

I think the fact she is so physically dependent on other people is what is making me more nervous about her going. She's also incontinent and will need someone to change her nappy/pants if she soils herself (she is mostly dry now). I just don't know how I feel about it? She has a TA, and it will be the same TA all the time. We will meet the TA before she starts and my OH is going to be staying at preschool with her for the first few days while she settles in. She's going for 2.5 - 3 hours a day (she only has a TA for 2.5 hours a day and is unsafe to be left unsupervised)

We originally planned to homeschool her and we will if school turns out to be too demanding for her (she has concentration/energy issues meaning she gets very very tired very quickly) but we decided since we plan on having another child we need to at least TRY to put her in school, because if we're homeschooling one, we're homeschooling both.

 

[Tegans Mama]

Anyone?

 

[Lottie86]

Findlay will be starting nursery next year (think it will be September due to when his birthday is) and I'm terrified about the idea. He will have to go for 2 full days and a half day (15hrs) each week someone said to me which seems an awfully long time and I'll miss him loads plus I know I'll be sitting at home worrying about him and whether he's been given his meds at the right times, Vented if he's crying, whether he's had his nappies changed often enough, had his position moved if he's having a really floppy day etc althouh with it being a SN nursery (it's attached to the school he'll be going to) they should hopefully be well used to complex high care needs children. I also worry that he gets tired very easily and still has hours of naps during the day which obviously once he's at nursey or school he won't be able to have and I worry about how that will impact on him.

 

[Tegans Mama]

It is a scary time isn't it! Tegan is starting sometime in the next week and I just feel like changing my mind and keeping her at home. I'm scared the care there won't be up to my standard or she'll be left out because she's different (we were advised to try a mainstream school first because there's only one SN school here and she's apparently not disabled enough to go there )

It's been really stressful preparing the school for her going there too. Like Findlay, she has a lot of really complex needs that people don't understand unless they research them a lot, and I'm really scared that they'll dismiss them because they seem unimportant.

 

[Midnight_Fairy]

I hope it goes ok xx

 

[Tegans Mama]

Thankyou

 

[DanielleM]

Sorry Lea I have only just seen this thread. How is Tegan doing at school now she has been there for over a month?

Evan has been in school for 3 years and has just started his 4th year. He is also paraplegic and has 2 TA who job share and take him to the toilet, he uses the disabled toilet as his TA's are female and can not go into the boys toilets.

To be honest Evan loves school, he loves his friends there and they adore him too, I know this is a frightening time for you and I hope it is going well. If you need anymore advice/info just give me a PM.

 

[Marleysgirl]

I'm worried about Andrew possibly going to nursery next year, as he'll only just be three years old. If he stays on track, he'll be around 2y10m corrected age, 2y6m developed, and the size of an 18m-old. Then there's his unresolved hearing impairment, and his attention disorder ...

But that is nothing compared to the level you must have about Tegan, and also Lottie about Fin starting pre-school. You are such wonderful mummies, and it must be more stressful for you to think about handing over care of your children to others.

 

[Tegans Mama]

Things are going quite well actually, I'm surprised how smooth it's been. She goes to nursery for 3 hours a day 3-5 days a week depending on how she's feeling because 5 days is sometimes too much (she tires very easily and literally never sits still at nursery so needs a day at home to rest every now and again).
She's off school today but back tomorrow and friday. She gets on with her TA really well, they're getting to know each other better now. We have a home/school communication book which her TA fills in daily to keep a record of how she's doing.
I still spend the 3 hours a day she's there nervous and hoping she's ok. I spend so much time with her I feel like my arms been cut off when I have to leave her.
I know she's only three but I'm getting scared already about secondary school

 

[Midnight_Fairy]

I know the feeling, its horrible! I have to apply for Matthews secondary in 2 yrs...HES ONLY 7 grrr

Glad its going ok hun and that she is enjoying it. xx