Play time

As you may imagine, playing with Samuel is different to playing with other children. All the toys he has have a purpose. They light up or sound or have a certain texture. The techniques we use to play with Sam are of course different too. Play is deliberate and very important for his development.

At Julia’s House, Samuel’s hospice, there is a lady called Sue who is the play therapist. She works with all the children and whatever their disability and condition, she devises a special individual play plan for each child.

Now before I go on I’m a bit of a fan of Sue’s. Not only is she fantastic at what she does and wonderful with Samuel, she’s great to chat to and just seems so in tune with everything and she just makes you believe that anything is possible.

Thanks to Sue we’ve already had a mini break through with Sam which I noted in ‘star of the week‘ and she’s really encouraged us and inspired us with different play techniques.

Sue, the play therapist,very kindly gave us this toy which plays the ‘Twinkle Twinkle’ tune.

This week Sue gave me song which she had written for Samuel to be sung to the tune of Twinkle Twinkle Little Star. Samuel’s Dad will of course change it to Daddy when he sings:

Samuel, Samuel I love you,

Yes, oh yes, oh yes I do.

I’m your Mummy, I love you,

Yes, oh yes, oh yes I do.

Samuel, Samuel, I love you,

Yes, oh yes, oh yes I do.

Sue has suggested that whenever I sing it to Samuel I should lay on the floor with him, or cuddled up to him on the sofa. As we go on, we will use hand bells to make a sound every time we sing Samuel’s name to reinforce that this song is for him.

I will let you know how we get on. I may even post a video sometime of us playing and singing the song. Maybe.

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.

Respite to the rescue (part 2)

So the lovely people from the hospice came over for our assessment and to properly meet Sam. As usual there was a million forms to complete, but I’m use to all that and to have to answer a whole lot of questions. I did find it difficult when they would ask whether Samuel likes this or that as it’s hard to tell. We know he likes being held and cuddles. We just accept that he tolerates other stuff – which basically means he doesn’t get upset or the item/activity in question doesn’t start off a seizure!

Anyway, we have our first play session at the hospice this week and I’m really looking forward to it. They said that I’m welcome to stay for the sessions (alot of parents do just to see what happens and how the child responds) or maybe go off somewhere for a coffee. It could be a good opportunity for a break.

They do arts and crafts and even baking with the children and when I enquired as to whether they still do all this with chilren who are very limited like Samuel, the nurses said that they most definately do and I’d have to get use to him coming home with lots of paintings and so on.

There is also a dedicated play lady who devises a special plan for the individual child and she has had some really good results. I actually had a look on their website last night and this lady was mentioned and she sounds marvellous.

The ladies seemed to really understand me, but then I expect they’ve heard my exact same story many times before. They realise that I’m keen to meet other parents so have said that they will put me in touch with some of them and apparantly the parents often arrange trips out and get togethers amongst themselves.

We of course talked about respite in the home. A carer coming here to look after Samuel. If I’m home (apparantly some parents choose to still be at home when carer is over but uses opportunity to have a bath, a snooze or do other things or they just enjoy the company of another adult around) then they will only send one carer but because of Sam’s level of needs if I’m not home then they will send two carers. I still feel a bit strange about having respite in the home, not sure why, but I think that if I start by being involved with the hospice and leaving Sam there, then I’ll get use to the idea of them looking after him at home.

I’ve also decided to stop referring to it as the hospice. I don’t like that phrase. Instead I will refer to them by their name, Julia’s House. I think that is much nicer.

I think becoming involved with Julia’s House could be a real turning point for both Samuel and me. For me it not only gives me the opportunity for a break but also the chance to meet other parents like me and a chance for me to feel normal. For Samuel, well he’s going to have a load of new people to cuddle and adore him. He’ll have more people to help him and bring out the best in him.

I just can’t wait.