Of course all children's typical days are different, and days for disabled children can be wildly (sometimes literally!) different. So, this should not be taken as an example for all disabled children, just Freddie.
Our average day hasn't started off very average as it's been snowing. At 1:30 Freddie's trying to get into our bed; now that is average! Why do my children always try to get in my side, not my husband's? Freddie has disruptive sleep, although it's been much better since we got a weighted blanket, nevertheless, these days I get up almost on autopilot to take him back to his room where fortunately he settles again quickly. It seems like I've only just closed my eyes and he's back again - with all his teddies. It's 5:30 - not too bad so I let him snuggle in and go back to sleep again. At 6:30 my husband gets up and finds Freddie downstairs watching a DVD at full volume - he can't yet put on his hearing aids. For the sake of my sanity, I taught him how to turn on the TV and operate the DVD player - when he was 4!!! Children with Downs Syndrome may have learning difficulties, but mine certainly doesn't have any trouble whatsoever with technology.
Freddie wants toast and marmite for breakfast and to practice his speech, I make him ask for it properly, rather than the easier option of just pointing and making random noises. Freddie can eat very slowly (particularly in the morning) and it takes him 20 minutes to get through his toast and milk. With my other boys, I start to chivvy them along if they're not dressed by 8:30 - with Freddie I need to start half an hour earlier. Dressing can take anything from 30 seconds to half an hour, and is usually the latter. Today it's definitely the later and ten minutes after he starts dressing he's standing in the middle of the room and has only got as far as his trousers; which are back to front!
While the boys are having breakfast, I check his hearing aids (he has bone anchored hearing aids) and hearing loop (which his teacher wears) and clip them onto his head. We'd normally drive to school, but today's a bit different, because it's snowed and the road is sheet ice! How do you get a child who doesn't walk too well to school? On a sledge! A lot of my life seems to involve lateral thinking.
As usual when we get to school a group of friend rush over the playground to say hello (and throw snowballs!) and I do a handover with his support assistant. He's in year 5 at the local village school and has a Statement of special educational needs with full time support. Mainstream school has worked very well for him. He has lots of friends, is well known locally and has made academic progress. About 80% of children with Downs Syndrome now attend mainstream primaries which is a big change over a very short time.
As his needs are particularly complex, we have decided that he has reached a stage where they will be better met in a special school and we have asked for him to move next September, so this will be his last year in school with his friends until they all meet up again in college when he's 16.
I'd normally hand Freddie over to his support teacher, but she's been held up by the snow. So has his class teacher and there's a supply teacher on duty. Much of the smooth running of our lives relies on people being practical and flexible, which they are in this case. The supply teacher organises a friend to help Freddie get his work started and to give him a hand until his support teacher arrives.
Once Freddie's organised, I take Samuel to his classroom then go home to start work. One of my concerns early on was that I wouldn't be able to work. Freddie is often unwell and has had numerous hospital visits and 11 operations. Maybe I could have found a forward thinking employer, but I decided that the most flexible option would be to employ myself by starting a small company making websites. I only work one or two days a week, but I am a very considerate employer and give myself time off whenever needed. I am also lucky to have very understanding clients. I often feel that I'm working simply to pay my accountant, insurers and childcarers, but it keeps me sane!
School finishes at 3:20 but on working days both the boys are picked up by a friend. I spent a long time trying to find a childminder, but they are like gold dust in our area and sadly the only two who had places suddenly didn't when I told them Freddie had Downs Syndrome. Luckily I have a friend who was happy to have them over in the evening and I pay her for their tea. It's an essential break for me and fun for the boys too. I have also found another childminder who's delighted to have Freddie at short notice which is a good solution if I suddenly need extra cover.
I pick them up at 5:45, then it's home for relaxing and heading into bedtime routine.
I often wish I could have looked into the future when he was a baby and seen days like this. I'd have saved myself so much worrying about things that haven't turned out at all like I feared. We had a great day today!