First Steps

I began the search for day care yesterday with a visit to one of the possibilities in our area – there seem to be 5 or 6 that might be suitable for Joshua’s needs. This one seemed to be the most keen as they called me in response to my emailed enquiry and they even spoke to school about Joshua and his needs, which showed initiative. They have two sites and I chose to visit the one that was closest to home, which is based on a business park on the edge of town, 12 miles away.

It was a lovely surprise when I arrived to see two familiar faces of ex-pupils from Joshua’s school that I knew, so that was encouraging. The man who showed me around was a member of staff, who’s daughter was their first ‘member’ so he was passionate about how much fun the young people have and how much his daughter loves to be there. In the lounge area, there were two young people playing pool and my first thought was the damage that Joshua could do to the windows if he threw pool balls. some were sitting on settees and more were huddled around computers watching films or playing games I think. The tour included the changing facilities, a kitchen where they cook daily, a gym , a sensory room, a woodworking workshop full of tools! and an outside space with picnic benches for eating outside.

I have nothing yet to compare it with so I have made notes to refer back to , but it was not homely, but that will not be what they were aiming for and it did have the benefit of space. Joshua would be supervised I am sure, but I was concerned by the chaos and danger that he could create with pool balls and cues, weights , saws and screwdrivers. I am usually largely unaware of health and safety risks – that is my husband’s department to worry about such things! – but these leapt out at me while looking around.

I realised also that there is a fine line between allowing the young people to choose what they would like to do and offering structured entertainment. I was told that each morning they have ‘circle time’ when they discuss the plan for the day and what activities are planned and the young people are allowed to opt out if they like. That is great for the verbal ‘members’ and those who are able to make such choices, but what about Joshua? He would shake his head to everything that he was offered, even the things that he loved. So he would end up going with the majority vote but then when he got there and saw what it actually was, he would vote with his feet and refuse to get off the mini bus if it was not to his liking. That being said, he would need some structure and encouragement to try the gym, karaoke machine or the pool table or else he would be liable to sit all day , watch others and kick doors.

It was a really useful introduction to the world of daycare and it was a really good start as a point of comparison for my next visits, but the most important thing is that I have taken the first steps.

Day 9 of Holidays

Joshua does not get to choose much for himself in his life : I decide what he will eat for his meals, where he will go and what he will wear for instance. I try to give him choices between two alternatives but more often than not, I make decisions for him. But yesterday morning we went out on a walk together and I let him determine what we did. My husband had cycled to a vintage car show  and we left the dogs at home,so there was just the two of us to please.

We stepped out of the gate and Joshua could choose whether to go right , up the hill to the high street or left, downhill towards the beach? He chose the easier option of downhill so off we went, me holding on tight as it was steep and he was almost running down.  Joshua selected a left turn at the bottom of the hill and we headed towards the pier, I had planned to go to the regatta to see what was going on on the seafront, but Joshua had other ideas: he dragged me onto the pier. Once inside I let go of his hand and let him lead the way; he wove through the various slot machines and computer games, halting briefly by the ten pin bowling to watch the familiar sounds – he goes bowling with school. But then he headed onwards again to the cafe where we ate tea last week and he went to sit down at the same table, but unfortunately it was occupied and I intervened, and moved him along by one table. He crossed his legs as if to say he was staying, so I ordered myself a mug of tea and him a bowl of chips and an orange juice, which came quickly and he tucked in.

He decided when he had had enough and took off back towards the amusements. I could see that it was now pouring so I was in no hurry to move him on. He hovered by a baseball game where for 50 pence, you got 45 seconds of throwing two basketballs into a hoop. So I found a pound coin and he enjoyed two games. At first, he wanted to throw the ball outwards, towards the amusements but he soon learned that the game was to aim at the basket and he even got a few in the target. He was enjoying the game so much, that I changed a £5 note and he had another ten games!. It was so lovely to find something that he was enjoying and focused on and something that he had chosen, that we had a great time.

After the money was gone, he wandered towards the exit but saw the rain and changed his mind. Instead he turned around and he went into the bar where we had stopped for a drink the other night – he may have been looking for his Dad. But I bought us an orange juice between us and we sat by the window looking out at the sea. He had a few sips but was not really interested in the drink, so we left and we walked back up the hill to the house. He stopped just once when we were almost back, but I was able to persuade him that we were almost home. Once back, he curled up on the settee and we were both satisfied with our morning’s entertainment. I was thrilled that he had made his own choices and played on the pier amusements, like other teenagers do.

A perfect fit

I have packed up Joshua’s bag ready for his respite weekend away and he gave it a glance as he went to bed, so I am sure he knows what is about to happen later today. I anticipate that he will be extra-clingy this morning but once we arrive there, as we have to drop him off in the school holidays, he will not give us a backward glance as he will have a whole team of staff there to make a fuss of him. He just loves the attention that he gets there, there is always some member of staff to tease, to smile at, to flirt with and to flash his tummy at and I am sure that is what he loves about where he goes for his short breaks.

I now have a list of adult alternative provisions that we need to call up and look around, so that we can have something ready in place for next March when he turns 18. I plan to make appointments once Joshua is back at school and we will both take a look, before we introduce them to Joshua. I am hoping that I have an instant gut feel for the new place and staff, as I immediately felt at home where he goes now.

He has been going there for over three years now and I can still remember my first visit to suss it out : A smiley lady opened the door and she asked , before introducing herself or saying hello, ” can you walk like a penguin?” and I replied ” yes I think so!” and I thought, on the doorstep, Joshua would love it here. The rest of the tour was not really needed as I had already made up my mind but I went through the motions with the manager, getting more and more excited.

Once outside sitting in my car, I called my social worker up and said that we had found the perfect place and he tried to encourage me to visit another alternative. I replied that there was no need, as I had found the perfect place so I would just be wasting everyone’s time. I am delighted to say that that initial gut reaction was not wrong, it has been the perfect place for our son. They took care of him when he was ‘sleepy Josh’ but they are loving the cheeky, lively teenager that he has become. They humour him when he hides from them, giggling in the ‘garden room’,  they allow him to’talk’ on their telephone, even though he then loses it for them and they even take him out to his favourite Donalds for a treat. The staff were as worried as we were, when he stopped eating last winter, as they are ‘feeders’ like me, so they will be delighted to get the greedy, food-pinching Joshua back and I have warned them that they will not be able to fill him!

The new adult provision will have massive job to convince me that they can take care of him as well as the current place does, but at least now, I know what I am looking for as we have been spoilt with the very best provision. I have never been good at change, or transition as professionals like to call it! I can remember begging his nursery school head teacher to keep him there until he was 16, and she very earnestly said to me ” I’m sorry but I can’t… he will grow too big for the furniture!” I loved the fact that she used Joshua’s size as the only reason why he could not stay, not that she would not love to keep him otherwise! But if he had not moved up to mainstream primary and then his first special school, and then his current special school, we would never have found the perfect place for him for his education either , I know that  nothing stays the same, but it does not mean that I have to like it.

Togetherness

Joshua used the word ‘together’ a lot over this weekend and beautifully in context too :

On saturday morning, when he came downstairs, he looked out of the kitchen window and commented ” No bus!” which is what we call his school taxi, so I replied ” That’s right Joshua, no school today.. we are going out in the truck later”. He loves a drive out in our pickup truck so he replied ” Truck.. Together” and he beamed at me. That warmed my heart to see that the prosepct of a family outing, made him so happy.

On that trip later in the day, we pulled into a service station for diesel. I hopped out of the truck and told him that I would not be long and he replied ” together!”. I filled the car up then went inside to pay, during which time he had kept opening the pasenger door to peep at me. Joshua slid his feet onto the ground – he has very long legs – and swivelled round in his seat, but thankfully he was trapped by his seatbelt and so he could not get out , so that we could be together.

Finally at teatime, I asked him if he would prefer to eat his lasagne at the kitchen table or on his knee in the lounge, in front of the television? He pointed at the kitchen table and requested ” together”, so that is what we did.

This progress is so special as he is using so many more words these days, but he is not just repeating them as he did this time last year, he is using them perfectly in context, to express his clear preferences. He has never in his life really had that interest or communication skill to enable him to make such choices. In these three examples, Joshua clearly indicated , more than once, that he wished to be with me, his mum, which , coming from a 17 year old, is very special indeed.

Smarty Pants

Staying overnight in a party city, full of hen and stag parties, made me feel very old as as we were returning after our concert back to the hotel, groups of young, glamourous girls were leaving the hotel, just going out for the night. I was yawning my head off and reaching for a cup of tea before bed and they were certainly looking to drink something stronger. Even when I was a teenager in the 1980s, I could not party like that and so now, there is even less chance. Even when I did go out with my friends back then, we could not afford to get drunk and we never went to city nightclubs in high heels – the only clubs that I frequented were Student nights when we were at university and even then, looking back, we did not dress up for the occasion. It was a time when I thought my legwarmers and sheep jumper, like Lady Di’s, was trendy!

Joshua does not choose his own clothes or dress himself, so he cannot express his individual style through his fashion. He has not been able to join the skinny jeans trend as those trousers are so skin-tight on his legs, that they will not slide over his splints and enormous boots. I have had to cut him out of trousers before now that would not come off. I like him in blue and so he tends to wear a lot of blue, but I do not know if he has a favourite colour. I have always joked that he is not interested in such things as fashion, but I do not really know if that is true. When he was younger and more vocal, Joshua, whenever he had something new to wear or even admired a new haircut in the mirror, he would repeat that he looked ‘smarty’ and be very proud of himself.

Having the independence to select his own clothes and dress himself to go out in his own style, is something else that Joshua has been robbed of. I must offer him some more choices so that he is not simply the boy who is dressed by his mum, so that he has the opportunity to express himself. A 15 year old would not necessarily choose his smartest shirt and jumper to wear to family gatherings, but I always try to dress him up beyond his casual jogging bottoms on such occasions. Thinking about it now, I have never offered him a choice of outfit and given that I am trying to encourage him to make more choices for himself, how he dresses would be an obvious step for this control-freak mum to make.