This week I have had quite a few appointments with Jack and a review at the respite unit he uses.
My first appointment, on Tuesday was at the High School to meet up with the physio to try out a standing frame for Jack. I feel like I have come full circle because when Jack was just over 1, I was given a standing frame for him. I was told he would never walk so being the type of person I am, I made it my mission to prove them wrong but I have to say I nearly fell at the first hurdle when I saw this wooden torture chamber that we had to use. For the first week I kinda of gave it a kick every time I passed it, so angry was I that my poor boy had to be subjected to this but once I got over that it was full steam ahead. Together with endless exercises and this standing frame, he eventually managed to stand alone and then he was off and running, literally!
Jack soon learnt to walk, run, climb and was always on the go. I was so proud of him. He loved being outside, always at the back door turning the handle to try and get into the garden. He had no sense of danger though so a high fence had to be put up and the gate kept locked. The garden soon became his playground and the trampoline was his favourite thing. Holly and I nicknamed him Tigger cos he was always bouncing!
Then the seizures started and life as we knew it changed drastically.
Now we have come full circle and my little Tigger can no longer stand never mind walk, run or climb.
My reaction to this standing frame was so very very different to 11 years ago. This time I saw it with new eyes. My first thought was how the hell am I supposed to get him into it myself? But then it was wheeled through and lo and behold it ran on a battery and you just used the controls to lie it flat so that he could be hoisted onto it and then strapped in. God how times have changed, this was so much easier than trying to keep him upright and fastening the straps at the same time. This piece of equipment was metal with a funky cover on it and looked so much more modern and I didn't feel the urge to give it a kick at all!
Once Jack was safely fastened into it, they used the controls to straighten him up into a standing position and that's when I realised how tall he was. He looked so straight in it and he was looking straight at me, eyes wide open, taking it all in cos suddenly his world had tilted and he was seeing it from a long forgotten view. I had a huge lump in my throat and tears were stinging my eyes but I held them in cos I was not gonna show my feelings in front of half of Kestrel House, no way hose!
The coolest thing about this standing frame is that it is on wheels so you can wheel it about while he is in it so there is so much more he can see. The world around Jack will open up again and hopefully he will continue to be alert while he is using it. Watch this space.
While at the school the new teacher, Kate, who has been on the Move programme, asked did I think it was a good idea for Jack to be out of his chair in the afternoon? Well, hello?? Yes most definitely. Good she said cos that would really benefit him to be on a mat, so he could move around by himself. Only problem she said was persuading the "girls" who work with him cos they are not happy! Wtf? Apparently they wanted me to show them how to hoist him onto the floor!
Eh?? Isn't it just the same as hoisting him onto a changing table?
So the two girls in question were brought over and were laughing cos they knew how to do this don't you know so I'm like "well what is your issue then?" Turns out they are used to doing this type of thing as a group and it was deviating from their "usual"! From where I was standing it looked to me like they were just resisting cos it meant that once he was on the floor it would only need one to look after him and they wouldn't get to chat to each other!!!
It totally frustrates me and makes me angry when the very people who are supposed to be helping Jack are often the ones who put most obstacles in his way. When are they gonna start thinking outside the box? This is about Jack and most definitely not about them unless of course it was a Health and Safety issue which it most definitely is not. Then they asked me "well what if he has a seizure?" at which point I did laugh cos really? you're kidding right? If he is on the floor, lying on a padded mat then that is one of the safest places to have a seizure cos he has nowhere to fall and nothing to bang into while thrashing about. As you can imagine my stress levels were rising with their attitude.
I still don't think they are happy but Kate was adamant that she wanted this to happen, I just hope she is strong enough to smash through their obvious reluctance to change the status quo.
My next appointment, straight after the physio was with the Hygienist at the Dentist. The lady who sees Jack is just lovely and is very gentle but firm with him and gently looks and feels inside his mouth like the professional she is and it doesn't faze her that he might inadvertently bite her. She managed to get his teeth polished this time and he was so very good. She always asks how he is doing and how I am and I came out of there feeling totally chilled which I was needing after my earlier school visit.
I left there to go straight to Dr Gray's hospital to see the Dietician. Again, no stress with this appointment as the dietician is lovely and puts you at ease straight away. She doesn't laugh off my questions or worries and listens to what I have to say and adjusts his feed etc as necessary.
Leaving there, I was feeling that my brain was gonna explode cos over the morning I had to answer/ask so many questions and sometimes it just gets too much! Having a child who cannot speak for themselves takes so much out of you at times, that and the endless driving to and from appointments, the stress of getting parked in the limited parking available, trying to fit in feeds/water boluses in between, taking medication with you: it takes multi tasking to a whole new blinking level!
Jack, meanwhile was totally chilled and having a good laugh at the fact that his mum had literally started gibbering. And I wonder why I struggle to remember my own name sometimes! Well that's my excuse and I am sticking to it :-)
Two days later, I had the review at the respite unit. Luckily I didn't need to take Jack but I did take Granny Mac for moral support as the organisation that has caused me the most stress this year is definitely this place.
To let you understand, Jack gets 4 overnight stays in the respite unit a month. Usually a weekend: Friday afternoon to Monday morning and another 1 night slotted in somewhere in the month. They rarely cancel the night on it's own but recently they have cancelled parts of my weekend, usually with only two days notice. This has played havoc on what little social life I have and I have arranged to go and stay with a friend 3 times this year and 3 times they have cancelled one of my nights. It is a 3 and a half hour journey to her house, hardly worth going for a night when I am already shattered.
Sometimes it is the Friday night which means he then doesn't go in again til 2.30pm the next day, other times it is the Sunday night and I had to come back early from a weekend away with my sisters but it is when they cancel the Saturday night in the middle of my weekend that it upsets me the most. I mean wtf? What can you do with that? Bugger all let me tell you as the first night of respite, if I am not going away I just collapse on the sofa in an exhausted heap.
Jack's key worker at the unit has been a great support and at the meeting encouraged us to make a formal complaint about the cancellations, saying it won't be resolved really unless parents start bringing it to the attention of the senior management. So she gave us the relevant details of who to send our complaints to so that is my mission this week at some point. Granny Mac has the details so I will wait til she has finished before I start my "novel" to the Head Honchos.
After spending an hour and a half in there, I then had to head home and finish filling in forms for Holly so that I could hand them into the local council offices as the deadline was that day. Arrived back to a message on the answering machine from the school O.T. re Jack's school chair. That's a different O.T. to the one I had to call already this week re Jack's shower/shower chair. AAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHH!!!!!!!
Now my will is totally being sucked. If this was a job, I could clock off at the designated time but for the many parents out there in the same position, there is no "home time" or "holidays" from this type of work.
Even my ex, when we were divorcing, reckoned I should be working cos Jack isn't that disabled!
Oh it must be nice to be on his planet, no disability there huh? I reckon he is on the same planet as half of the professionals we meet in our child's lifetime, the rest are just like us,they no speaka alien! Ha ha ha :-)