The first good news came early in the month for us in the form of AMEGREEN, an agency that had agreed to take on a care package for Toby that was awarded back in June but no one could provide the staff to help us out.
We’re very lucky that we get ten hours a week so for two 2-7 shifts a week the nurses and carers have been getting to know Toby. He’s a sociable little chap and enjoys all the (female) attention and even more people to play with and has rewarded them with his beaming smile, hair pulling and a full spectrum of seizure activity.
We’ve deliberately asked them to do the late afternoon shift so that they get to see Toby at his ‘worst’, as he gets tired his partial seizures get worse and he’s more likely to have a full tonic clonic seizure in the evening and so far he hasn’t disappointed. We’re very lucky in that the two ladies predominantly working with us are lovely (and have alliterative names, Respite Reni & Respite Rita) and Toby takes real pleasure in being with them.
It’s been a rollercoaster this month, a handful of fully convulsive seizures have taken us by surprise but it’s the partial seizures that have really got us, the anxiety of watching him jerk and twitch while we wait to see if it will build to something more is a killer. We often wonder why we’re so tired, in part I’m sure every parent is no different but for us the two hours of adrenaline pumping through our bodies before Toby’s bedtime mean that when he does go down we crash, exhausted before crawling into bed.
School and beyond
Before Christmas we visited the Redway Special Needs school in Milton Keynes as the first step in trying to work out what would be best for Toby in terms of education.
Developmentally he’s around nine months old and physically very weak, he has a few different noises which represent different things (up, again, yes) and whilst he can stand aided and can ‘walk’ with us holding his hands he’s very wobbly and unstable on his feet. As such we need to find the right place for him.
Redway is a fantastic school that caters for children with all sorts of disabilities and has great facilities however it’s quite a trek for us to get him there and once there we’ll lose some of our respite so it’s about working out what is best for all of us.
The first step is to get an Education & Health Care Plan in place, this is where the council co-ordinate all the different professionals to come up with a plan for what will be best for Toby for the short and medium term, this will help decide where the best place for Toby is both from an educational perspective and healthwise to ensure he is safe. The plan takes around 20 weeks to put together due to the amount of people involved.
As such, Toby had his first ‘assessment’ by an Educational Phycologist (tests at his age!) so she could understand his development level and more of his medical background. It’s this that’s so hard to get right, developmentally Toby could be in any pre-school but if he has a seizure his medical needs are high and immediate so finding the right place that will cope is really important to all of us. We pleased we’ve started this process but it’s very emotionally draining reliving what has happened to Toby from when his seizures began at 8 weeks old and all the things he is ‘behind’ on.
Recognising that Toby struggles with over stimulation we decided to get him into a setting where he could get used to being around other children so in the last week of January Toby has his first session at Filgrave School (pre-school), a day we never thought would come but he managed a couple of hours playing with toys and interacting with other children while I looked on from the side-lines. Kim or I will always be with him just in case something happens but it’s a start to get something in place and Toby being out and about with other children which is a huge step for us all.
As Toby isn’t walking so we still carry him around a lot, at 15kg’s he’s not only heavy but a dead weight as he doesn’t grip or support his weight in any way as such we’re both struggling with bad backs, and this is only going to get worse as Toby gets older so we got the local Occupational Therapists involved to discuss potential adaptations to the house for disabled living.
One problem we face is that we don’t know what the future holds for Toby, will he be in a wheelchair? If so, when? Will he be able to get in and out of a bath? If so when and how long for? It’s difficult for us to make plans when the future is so uncertain.
The OT’s brought a surveyor from the council along to discuss options for bathrooms (ours is too small to be disable-friendly) through to lifts for getting Toby upstairs. A few suggestions were made but nothing has been agreed. It was incredibly emotional looking at how to carve up our home to meet Toby’s needs and our needs no longer being important, particularly when we don’t know what we need in the long-term.
The little things
Whilst I wish Toby didn’t have Dravet and our lives were different, Toby’s condition has opened our eyes to the people around us, the generosity that they can show us on a daily basis and the importance of quality time with our loved ones.
If Toby had been ‘well’ Kim would undoubtedly be back working full-time by now to finance our ‘normal’ life of holidays and nights out but instead she does three days a week and gets precious time four mornings a week reading books in bed, we often have breakfast and lunch as a family and it’s easy to go for a stroll around the park in the evening before it gets dark.
We’ve met some incredible people who do lots for us but it’s often the small things that bring a tear to our eye, a visit from one of our closest friends, a message to check we’re ok as we’ve not posted on Facebook for a while, a box of thank you cards so we can write to people and say how much we appreciate what they do for us and a pint over lunchtime to talk about the marathon and fundraising it all adds up and we feel very lucky.
So, as ever, thank you, you all keep us going and make us feel very special and loved.