It may be almost Easter time, but we’re already looking forward to August for two reasons – the Twincesses starting school, and a special holiday.

Yes, our babies are starting Primary 1. The best bit is they are both going to mainstream classes.  I can remember as far back as the girls still being wee and we were just told all about Katie's conditions and her prognosis and thinking then: what will we do when they start school?

And if Holly is at mainstream and Katie is at  a special needs school, who's would we go to first? Wee things like that were worrying me then, now they will both be going to the same school on the same day.

We have always been told that education would be our biggest challenge yet especially as Katie needs one-to-one and we all know how learning assistants are like gold dust!

I was prepared yet again to roll the sleeves up and fight for Katie's rights.  I must admit we were taken aback at just how keen and hands on the primary school are.

At the enrolment we sat with the deputy head and had a good positive chat; between the tears and laughs I had a lot of questions and not just about Katie but Holly as well.

We wanted to make sure they were going to be in separate classes. I just don't want Holly to feel as if she has to be responsible for Katie. They are individuals and need to be their own wee persons and make their own wee friendships with others.

I beat myself up as it is about things that Holly could be doing but can't because of the demands I have with Katie’s needs. I suppose being honest when I look at Katie I feel guilty for all the things she would like to do but can't!

The biggest issue just now is eating in front of her: Katie can't eat orally at all as she can't swallow but that does not mean she wouldn't like to. Even the smell of cooking just now makes her salivate more. She does wear patches about the size of a 10p which release the chemical hyoscine and help to dry up secretions and saliva, we stick these behind Katie's ear, alternating her ears each day!

She has also had botox round her face into her glands but that didn't help at all; in fact it made it worse for a while!

I can't not have “normal” meal times as I don't ever want Holly to think she can't eat in the house or in front of her sister but how do we do it without feeling guilty when Katie sits and watches or smells food?

I pointed all this out to the school which gives plenty of time before August to think about how they can manage playtime and lunchtime.

I also mentioned the offer we have had of a trip to EuroDisney, which came from a charity who take disabled children every year, and got in touch after I appeared on ITV Daybreak in December.

The dates have been confirmed as the end of August and school starts in the middle of the month so we didn't know what to do as the Twincesses will only be at school for a couple of weeks and then we will have them off!

The deputy head asked us why we were even doubting about going, we can't miss out on an opportunity like this, we won't ever have another chance...Looks like we will be going after all :)

Not only is it something for the girls to look forward to but we are actually going to be meeting and spending time with other families who are just like us and that is something we have never been able to do.


It has taken 18 adults to meet and plan the transition from nursery to primary for Katie: myself and Derek, Katie's nursery teacher, keyworker and also the nursery head, speech and language therapists, dietician, community physio and occupational therapist, education psychologist, eye specialists (Katie has a lower field vision impairment), three members of staff from the primary and a community school nurse who will be responsible for all training of Katie's equipment such as the suction machine, feeding pump, administering medicine etc...

The meeting started off the usual way with introductions, who was who and what they were to Katie.

Katie's nursery teacher started off updating everyone of her progress in each area of the nursery and how well she has progressed from last year.

Her communication and signing and use of her picture/symbol book has been great, she can point to different pictures which represents areas of nursery such as the book corner or the smart board, her interaction with the other kids has been fantastic and likewise the kids have been fantastic with Katie.

They even use her book to tell her where they are going to play and ask if she wants to play as well, then she points to the sign yes or no. Honestly, it's amazing, and we get really choked when we hear all this as I always worry that maybe the kids might not want to play with her or that Katie might get frustrated if no one knows what she wants, but these strategies have really helped cross that barrier and allow interaction from everyone!

(I think all parents have these emotions anyway whether their child has additional needs or not, I used to worry about Holly as well and it didn't help when she would come home and say she wasn't playing with anyone then we would go into nursery and she was running around with her friends.)

The physio and occupational therapist spoke about how well she is doing and how much she really enjoys being in her standing frame with her splints on, she is the same height as everyone else and has a better vision of things, the occupational therapist has already had a walkaround the school and has noted sizes and all access points, fire exits etc... so she is going to try different chairs that Katie will have to use in class and what she will use in the playground.

The dietician couldn't really say much at this point as we don't know yet how we are going work out Katie's feeds and meds. This was when I brought up the whole issue about eating, so we thought maybe plugging Katie into a feed at 12pm when everyone else was having lunch and that way she will feel included and in a way having lunch with her friends. With regards to the smell of food etc we will just have to wait until the situation arises and take it from there and see how she copes.

The nurse is going to liaise with the school re training and once Katie's primary teacher and learning assistant have been identified then they can work out appropriate training for staff.

The primary school staff didn't really have anything to say, this for them was more of a learning and listening meeting, seeing everyone and establishing what has to be done.
We feel really positive about the Twincesses going to school, as I have already said it has been a huge worry of ours but I really can't fault the way so far the transition has been dealt with.

We came home from the meeting and explained it all to the girls, they are just excited about starting school.

Holly keeps asking about homework, saying she can't wait..we will see if she is still as keen when the time comes!