The Sound of Silence

I have always been a sociable person, loved lots of noise, music, people coming and going but lately, not so much.

As Jack's condition has deteriorated so much over the years, I have needed more and more outside help coming into the house just to get him up in the morning and put him to bed.

I have gotten used to this, albeit very slowly but because he is now transitioning from child services to adult services the amount of people coming into our house has ramped up to the point that it no longer feels like home!

It is a necessary evil at this point as looking after Jack requires a person to have more skills than a ninja! There's training for his pep mask, nebuliser, suction machine, cpap machine, peg training, percussion training (and no that doesn't involve music!), epilepsy training, VNS training, cough assist machine, medication training and then there is the whole other part of medication....the As Required Meds!!. Then there is the theory to learn about why we have to use these tools in his care.

In order to gather information about Jack and his care I have had loads of people coming to visit to find out what they need to do in order for the transition to go smoothly.

So far we have had visits from the physio, dietician, social worker, community nurses, management from the new respite service, carers from the new respite service doing shadow shifts, occupational therapist to name but a few. These people are brand new to Jack, Holly and I so we are having to slowly build up a relationship with them, which takes time.

The transition only really started in January as there was a bit of a mix up and Jack's file ended up with the wrong social work team. The right team then only had 3 months to get a package in place before Jack turned 18. The respite unit he had been going to as a child were not willing to negotiate keeping him on a couple of months more after his 18th birthday to give us a little more time to get the adult respite unit up to speed. So we were really up against the clock.

I have learned that what is acceptable in Children's Services doesn't easily transfer over into Adult Services. They have to have a brand new protocol for EVERYTHING!!! Written in a completely different format too!

This is a good thing in my opinion but oh my, what a shock to the system that has been.

In our house, we have a camera in Jack's room leading to a monitor in my living room. This means when Jack is in bed at night asleep or not, as the case may be, I am able to keep a close eye on his breathing, seizures, whether or not the cpap machine is leaking as there is no alarm on it, whether or not Jack is bypassing the cpap, whether or not he is attempting to climb out of the bed or pull the hose off of the cpap! This is a very useful tool in his care because it's either that or I have to be in the room with him at all times which I have done and he then doesn't sleep very well at all as he is aware of the other person in the room. Jack also has what they call "cot sides" on his bed and this is also an issue of concern in Adult Services as this is seen as restraint. Without them, he would fall out of bed as he has no sense of danger, no saving reactions at all. I know this will happen because it already has!

The camera, monitor and cot sides, according to the Adults with Incapacity Act is seen as a Deprivation of his Liberty. I had never heard of that sentence in my life before but believe me it is indelibly printed onto my brain now.

No one is able to look after Jack without this valuable tool. It doesn't replace us checking on him as he his checked hourly when fast asleep and every 15 mins when agitated or restless. This tool was requested by the Occupational Therapist when he was about 9 as the epilepsy monitor on his bed was not picking up half the seizures that he was having and therefore I was missing so many of them. Usually he was at the laboured breathing stage of the seizure before I would hear it through the baby monitor I had at the time. I would then have to run at breakneck speed, down the stairs and through the hall to his room to try and help him.

Believe it or not, we had three separate doctors coming to our house last year during the application Holly and I had put in to be Jack's joint guardians. They saw what we had in the house in order to keep him safe but not one person picked up on this being an issue but it is now.

Jack's social worker sent a letter to our local Paediatrician at Dr Gray's Hospital and she wrote back detailing the need for these tools and the reasons why he can't be looked after by anyone without them. Respite are happy with this and have a copy of the letter which the Care Commission have said is sufficient evidence for them to use the cot sides, camera and monitor but it's not for us!

So now Holly and I have to apply for what is called a Variance to be added to our Guardianship order, giving us the power to use these tools to keep Jack safe. It is so damn unbelievable. It has shocked the social worker at Rachel House children's hospice to the point that she was unable to form a sentence without getting extremely angry for quite a while.

No matter how crazy if seems to me or anyone else, the facts are that it needs to be added into our Guardianship Order.  So now I just want to stop talking about it and get it done.

Jack had his first four nights of respite with Adult Services on the 8th April. Unfortunately respite didn't have a suitable bed for him as the one he requires had not been ordered; this was due to a confusion as to whether the funding came from the NHS or from Social Care. It has since been ordered but this meant that the respite care had to take place in my house.

Sooooo many people coming and going, it was crazy! I managed to get an hour or two respite, here and there but I think I was more exhausted by the end of the four days than ever before. Saying that though, it was really really useful and I think the staff are perfectly capable of looking after my complex but very gorgeous boy, they just need to relax a little. It was also good for them as they were able to pick my brains at any time and also see that I am quite a laid back, approachable person which makes it easier for them to ask me questions.

We are all in this together after all so it is vital that all the services work together to achieve the best result.

I have always thought of my home as my safe place. The place I can just be me and no longer have to put on a brave face for anyone. That hasn't been the case lately as the last few weeks have been a major challenge with the amount of traffic coming in and out of our home. I have had to keep the "brave face" welded on, the smile on my face struggles to come naturally now and feels forced and I feel invaded. I want to batten down the hatches and put up signs on the front and back doors saying "Enter at your own Risk" and that the "Those of a sensitive disposition should turn around and leave as swearing takes place here" or even "Don't poke the bear, she bites"!!!

That is why, these days you are more often likely to find me in the house when no one else is there, with no TV or radio on enjoying the sound of silence. I never thought I would say this but honestly it is the most amazing sound ever!

I'm going down, I'm yelling timber!

Life in the McKenzie house is, as usual, a cocktail of everything, on the rocks, with a twist of lime!

Jack's health has been up and down but his new VNS seems to be working fine. No two days are the same: he can be so very alert and active and the next day he can be sleepy and listless. You just have to roll with it.

Holly has had her appointment in Edinburgh and the consultant saw a marked deterioration in her hip in the short time she'd had to wait to see him and that was just based on an examination of her leg! The hip by this time had degenerated so badly that he said she requires a hip replacement.

There were lots of tears but now that she has gotten her head around it, she just wants it to happen....NOW!

We had booked to go to Disneyland Paris for Christmas and we had asked Holly's friend Georgia to come with us to be the other helper. We were over the moon when she said yes, especially now since Holly was going to have to be in a wheelchair for the whole 5 days in the park. She can walk, just not very far.

It was really important to us that we went on this holiday without a fleet of carers for Jack but it turned out to not be as magical as we had thought it would be. I blame Disney for this because they have changed the priority card to cover every available disability making sure that they are being politically correct. So the card is no longer based on need, it is based on any disability, even if that is an aching knee which you don't need a stick for but you have a letter saying you need assistance. I know this because we met someone like that!!!

This meant that families of up to 12 people (that we saw) were being allowed to go on the rides together as they were a family but they wouldn't allow us, who had two wheelchair users, one who could walk a bit, go on any of the wheelchair accessible rides together because as both Holly and Jack had a priority card, they were treated as two separate parties even though we told them we were a family and that Holly could walk a bit just not long distances.

This, as you can imagine rubbed quite a bit of the magic off of Disney, coupled with the ignorance of other people using the park who thought nothing of stepping over the front of the wheelchairs rather than go around them as well as crowding around the back of them with no respect for personal space and boundaries. There was lots of other things too but it would take way too long to go into just now.

Despite that, the four of us had such good fun but really we could have been anywhere and I don't think we will ever go back again which saddens me quite a bit....but it really isn't the same now.

After we got back from Disney, Jack came down with a bug, passed it to Holly who lovingly passed it to me! I rarely get unwell but oh boy this was a horrendous one! I haven't felt that rough in a while!

Holly and Jack's dad came for a visit just after New Year bringing gifts for the kids. Before he arrived Holly told me that his new car (a Ford Mustang) had arrived and he was getting it on Tuesday. So I asked him about it and I nearly fell away when he told me it cost him £28,000.00. On further discussion it turns out that price is for the basic model and Father of the Year hasn't gone for that one but the sportier version costing a wee bit more!

I was totally stunned and it's not because it's him. Anyone who knows me, knows that I don't care about his money and even if we were still together paying that amount of money for a car would not sit well with me! BUT when I think about how I struggle financially just to provide Jack and now Holly with the things that they need and how anything they needs costs an arm and a leg because it's a specialist item....the idea of spending that much on something just for myself....well it just blows my mind especially when I think of all the other things I could buy the kids to make life easier with that kind of money!!!

A week ago we got word that Holly's hip operation is on the 15th February 2016. We knew it wouldn't be long but EEEEKKK!

So this week has been quite frantic trying to arrange care during that time for Jack who as you know cannot be looked after by just any old person. Luckily he is in respite for a part of that week so it's just getting care arranged for the the days leading up to going into respite that I have to worry about.

I have also had to order all the little bits of equipment that she will need for afterwards like a grabber, a long handled shoe horn, long handled shower sponge and a sock aid! She has already gotten to grips with the grabber and has used it to steal the glasses off my face and the socks of my feet!

My stress levels are already quite high at the moment because we are going through the transition with Jack from child services to adult services. As usual it's been a case of lack of communication between the powers that be and it has all been left to the last minute. He is 18 in two months so can no longer attend the respite unit he has attended for the last 15 years and it doesn't look like the adult respite unit will be ready for him by then so I face the scary prospect of no respite at all for an indefinite period.

Sometimes I totally want to resign as an adult, build a blanket fort with a bed of pillows and hide inside with all my toys and a great big bag of sweeties and refuse to come out!