It seems like such a long time since I have written anything new.
Maybe it was only about a week ago, I don’t know, but if it was only a week it has been a tough one. Life feels a bit like an emotional roller coaster at the moment, one that I would quite like to get off, or at least slow down so that I can see the view from the top of the high bits for a while if that would be ok please??
Its not even that we have good days and bad days anymore, it can change hour by hour. Also its not just Charlie’s challenges which are causing the roller coaster, they kind of add to it but there are plenty of other reasons why everything is crazy at the moment.
I suppose the biggest thing is that the charity I work for is running extremely low on funds which means that my job and the jobs of everyone I work with are under threat of redundancy. Sometimes it feels like it is too much and I just want to give it all up but even that is hard because I love the work that we do and our clients constantly remind us just how vital it is.
On wednesday morning I was feeling particularly down about the job and a bit sorry for myself until I got to the office where I found 2 ladies and a baby sitting on the steps outside waiting to see one of our caseworkers, they had been sat there in the freezing cold since 6 o’clock in the morning, because they have nowhere else to go. Our center is unique and there are very few other places where our clients can go where they will be welcomed and helped, so they come and they sit and they wait.
Life is hard at the moment but we must never forget that there is always someone who is fighting a much more difficult battle than we are, if our center goes then so will their life line.
On Thursday I took another lady who is a volunteer, client and friend all rolled into one out with me to a school to talk to the teenagers there about the work we do. She spoke about how we as an organisation are her family and friends, her occupation, accommodation and support. She cried, I cried, the teacher cried, the teeneagers did their best not to show emotions – as teenagers do. But I am in no doubt that they were deeply affected by her words.
Personal testimony is such a powerful tool for reaching people.
Last week we had had to make the devastating decision to cut the very small grants of cash support which we give to our destitute and most needy clients through our food store, this is a horrendous decision to have to make, but the cupboard is literally bare. This week the situation changed significantly for the better when a partner organisation stepped in to fund supermarket gift cards for the same clients.
The atmosphere in the office is stressful, people are on edge to say the least but then the next high came when a colleague from another charity called to ask if she and some friends could organise a fundraiser for us.
At home there have been similar highs and lows, Charlie and Lillie have enrolled in a circus skills class, after school on a Monday night, the group is specifically aimed at kids with special needs and their siblings. While the kids have an absolute ball, playing and learning there is tea coffee, support and advice for the parents. Its a safe place and its great to learn from and share with other people who a walking similar paths to our own. Even though we share hard stuff I always leave the group feeling like my spirits have been lifted.
School has been tougher this week. It started out great, with Charlie’s teacher having done a day of training around sensory processing during the half term break so on Monday he was excited to tell me how well Charlie had “modulated well all day”. This is both good news that Charlie is doing well at his self regulation and also that his teacher now has a much better understanding of his needs. However on the flip side school sent home Charlie’s first IEP, now from what I understand this is a document which we are meant to draft together in partnership with the school, but for some reason they went ahead and did it without us. We were invited to a parents evening meeting to discuss it, but that was later cancelled. I sent a note into school explaining that when the meeting does eventually happen that one of the things I will be wanting to discuss is why there is no mention of feeding or eating in the IEP or anywhere else at all. Now I’m sure that the school can’t focus all their attention on helping us in this area it would have been nice for them to acknowledge it in some way as it is our number one priority and primary concern around development, and we had made this very clear to them before we accepted the place in the school.
Looks like my note didn’t go down too well with the school…
So on Tuesday after school I ended up spending an hour in the there on my own and unprepared trying my best to explain to Charlie’s teacher and classroom assistant how important it is to us that they have a plan for how they will help him with his eating. Sometimes I feel like I am speaking a foreign language, which nobody understands. I had to bite my tongue when the classroom assistant told me oh he sounds just like my fussy eater. NO this is not fussy eating, this is not a kid who refuses to eat green veg, this is a kid who lives on only Cheerios and milk or toast and butter!!! She told me that he eats custard creams (cookies) in school, and had once licked a piece of ham, I asked why they had never sent this information home, she had no answer, so I told her that if she really understood how important it is to me to know that kind of information that there is no way that she would have not told me.
Even though in the meeting I asked for consistent, clear, accurate written communication around food the next day when I collected Charlie another classroom assistant announced that he had eaten Jelly (Jello) in class. I was shocked, “Jelly? I asked, “did he really eat jelly?” she said yes, so I pushed her further, “what colour/flavour/consistency/brand did he eat? How was it served? Was it in a bowl with a spoon?” “Oh” she replied, “he didn’t eat Jelly, he ate jellies, I mean sweeties like haribos”. He has eaten Jellies before, now Jelly is a whole different sensory experience, it is wet and wobbly and unpredictable, had he eaten Jelly I would have been pleased, no more like ecstatic, instead I just went away annoyed about the poor levels of communication.
But then come the highs, meeting and making friends with another parent at the school, finding an advocate to support and represent me in the process of communicating with the school and looking towards the future of possibly having a statutory assessment and statement. Little delights like the fact that it turns out that he is the father of one of my all time heros, oh and by some miracle, because God is indeed good, the head of the school happened to call me to discuss the situation and arrange a meeting while he was in my house, Oh and there is more…he is available and willing to come to the meeting with me.
So there you go, up down, up down and repeat all week long. Hold on tight, next week is coming way too quickly