Chez Samuel

The occupational therapist from the council came to our home today (same lady who sorted Samuel out with his new highchair) to talk about our options for making changes to our house to make it easier to move Samuel about as he gets bigger.

Although Samuel is only two years old, he is getting noticeably heavier to move around the house. He doesn’t hold on or help, so you have to provide all the support when he’s being carried. Imagine carrying a 6-week-old baby the size of a two year-old.

We discussed the following options:

  1. Stair lift – it’s a conventional stair lift with something to go in it to hold in people of Samuel’s size. I don’t like this option as our stairs and landing are very narrow¬† and once it gets to the top I’ll have to take Samuel out right at the top of the stairs. Keeping in mind how much support he needs, plus his seizures, I don’t think this is a safe option, to which the occupational therapist agreed.
  2. Lift – our spare bedroom (slightly bigger than Samuel’s current bedroom) is above the garage. The lift would be positioned in the garage and go up into the bedroom. Although our garage is integral, there is no access to it from inside the house, so a doorway would have to be created so we can access the garage and lift from inside the house. In the bedroom the lift would take up a fair amount of space and of course we would have to make sure that there is adequate space around it to take Samuel in and out of the lift. As the bedroom is already rather small, it would hardly leave any space – we were struggling to work out how we’d fit in his chest of drawers! Because of the amount of space it would take up (plus I’m not sure I like the idea of sending Samuel up in a lift on his own), I’m not entirely fond of this idea.
  3. Garage conversion – our garage is integral, so we could convert it into a downstairs bedroom for Samuel. To do so we would have to create a door from inside of the house into the garage/new bedroom, but we’d hope that wouldn’t be a problem. Apparently the council would rather not create a bedroom off the kitchen (which Sam’s would be if we did this), but they still do it when necessary.
  4. Extension – we have an end-of-terrace house with quite a good-sized front and side garden so there should be space to build a bedroom for Samuel on the side of our house.

Once the council decides which are the best options for us and our home, they will then choose the cheapest option to fund. If, for example, we were very keen to do the side extension but it didn’t come out as the cheapest option, we could take the money they are prepared to give us and add to it from our pockets to create the extension.

The other issue we looked at was access to the house. We have a very steep drive and a small entrance way, so it has been suggested that we could look at using the garden entrance/exit for Samuel. If we did do this then I would ask the council if it would be possible that one of the spaces at the side of the house could be marked up to be used by Samuel, as we simply can’t park at the end of the street because someone has taken the space!

As the back doorway is very narrow and can’t be made bigger because of the kitchen units (but is currently the only access point other than the front door), it was suggested that perhaps we could look at changing the large window in the adjoining lounge/dinning room to french doors. I think this is a great idea, but only problem is we wont be able to use our already small dining area, as the dining table sits in front of where the doors would go! So, perhaps if we somehow come into some money we could look at building a conservatory on the side of the house to use as a dining room, if we haven’t already used the space for an extension.

This process is a long one, but we have at least got the ball rolling. We thought we should get things moving now, before Samuel gets too heavy to take up and down the stairs and we find ourselves in a pickle. We love our home and want to make sure that Samuel can continue to be at the heart of it and doesn’t miss out on anything. Oh and we don’t wreck our backs carrying him around!

So watch this space I guess! If we do financially contribute to the work then we will have to do some fundraising, so you will hear from us if we need your help…unless some building and decorating fairies happen to pop by!

Physio’s headache

Samuel sees a physiotherapist and an occupational therapist about once a month. Both have known Samuel since the beginning and the girls are always very good with Samuel and seem to have a real understanding of the little man.

In the past, some physio sessions haven’t been terribly successful. Not because of Samuel’s seizures, more that he goes to sleep and proves hard to wake up. I’m not sure whether this is some kind of subconscious tactic of his to avoid the session but it can be frustrating. I’ve had to ask the girls not to give him a cuddle at the start of the session now because I’m sure this makes him extra snoozy! We’ve found that the way to wake him and keep him awake is to do tummy time with him which he doesn’t like as it means he has to put effort in.

You see, when he first started having physio sessions regularly, the girls would do very gentle movements with him and he would mainly stay on his back on the mat. But then they progressed to making him do more work, including tummy time. He doesn’t like it. He just wants to lie on the mat and be stroked!

Samuel has quite bad positioning. Where the physios would like him to lie straight and keep his head, arms and legs central, Samuel has other ideas. His favourite position is to lie head over to the right side and his body to be at an angle in a kind of banana shape, with his ankles crossed and his arms stretched out like a scarecrow!

Samuel isn’t mobile at all and it is anticipated that he may never be. But for good general physical health, it’s good for him to have good positioning. Plus our aim is to strengthen his neck and encourage him to support his head with the hope he might be able to sit up sometime down the line (at the moment he has to have full support like a very young baby).

We do quite a bit of physio with him at home and sometimes combine physio with play. I’m always finding myself moving his arms down, turning his head gently to the middle and uncrossing his legs, but that boy may have special needs and disabilities, but he knows what position he likes to relax in and is very stubborn. So if I don’t use supports (like rolled up towels, soft toys etc – not very high-tech), before long he’ll return to that position! I’m not sure if we’ll ever win the battle of Samuel’s positioning, but we love him, even if he’s our scarecrow banana boy.