This week, I feel a bit of a wreck. On a few occasions, I genuinely thought I was going to have a breakdown. I think I’ve been slowly getting more and more stressed and tired and the vicious circle of chores, routines and trying to work has really got to me. A few times this week I haven’t even had the energy to eat dinner, literally the motion of putting food in my mouth was too much effort. Basically, I’m a mess.
But hey, it’s ok because I have Herts County Council supporting all of Jude’s needs! Oh no, sorry I haven’t. You know when you feel like you’ve really reached the end of your tether? Well, I’m there. Last week, I was optimistically told by my contact within the social care department that Jude’s school would be visited on Monday (three days ago) by my elusive SEN Officer to ascertain whether they felt traditional education was the best route for Jude. I have been arguing that Jude needs a more therapeutic approach and that notions of geography, maths and science are simply a waste of time for him but I guess they need a balanced viewpoint – parents and professionals.
I hadn’t heard anything by today so called up the main council switchboard and asked to speak to the lady who’s name I was given as my SEN Officer. It rang and rang and rang and eventually I was put through to someone completely different. The “Gatekeeper” (remember that cracker of a title I mentioned yonks ago?) for Jude’s new school that he’s starting after Easter. Now here’s the great bit…not only has she never seen the email that, in a distraught and desperate state, I sent to the council, but she knew nothing of the visit either. She gave me another number to try. I called it straight away…voicemail. I left a message and guess what? No one called me back.
I was concerned that my email had become lost, floating around the virtual matrix that is t’internet so called back the generic number, not really knowing who I needed to speak to. I asked to be put through to the lady who, five weeks ago, had originally given me the email address to send my email. I didn’t know her surname but knew her department but no one could find her.
I went back to my original email and re-sent it, asking that someone respond asap just so I knew that it had been recognised. Nothing.
So here we are…it appears that no-one has read my utterly beseeching email. I don’t know who my SEN Officer is because she has never called us. Does this person even exist? No-one visited Jude at school and I’ve got no-where. Literally no-where. I don’t know what to do or who to contact and I feel comprehensively beaten. Is this how the council keep costs down? Confuse the people that need the most help to an extent where they just give up?
I promised to publish the email. I think it’s pretty comprehensive so if no-one at the council is going to read it then I may as well show you:
As I sit here writing this email to you, Jude is in his bedroom, unable to go to sleep because of the anxiety building up inside him. He’s crouching on the floor and picking at the wooden floor boards as this is one of the ways he is able to contain his emotions. He has huge anxiety tonight because tomorrow morning his Support Worker is coming to take him out for a few hours and the anticipation is too much for him. We have been allocated four hours a week Support Work through the council and frankly, it is causing more problems that it is solving. The waiting, Jude’s inability to understand how long it will be until she is here, is just so all consuming it more often than not leads to huge tantrums and melt downs during the night.
- Consistency. He will wake up and be at school already. There will be no transition stress for him and he will therefore be able to concentrate better knowing that nothing worrying is coming up.
- More therapeutic approach. Schooling for Jude is not working, in my opinion. He is nearing the end of year 6 now and still cannot write his name legibly. He loves numbers but can see no correlation between what he learns at school and his life in general. If you asked Jude why he needs to learn about numbers so he can go shopping, he would not have a clue. Jude needs an environment that focuses on therapy, sensory sessions, learning how to be independent in terms of self-care, using his initiative and developing social connections, none of which he can do whilst in a standard school environment. The school he has attended up until now has worked tirelessly with him however, even within the confines of a special needs school with tiny classes of eight, he requires one to one attention most of the time. His lessons have never progressed and I feel have been a bit of a waste of time.
- Jude would benefit greatly from having to use his own initiative and from socialising with friends more often. Granted, this is something that can be arranged outside of school however without huge amounts of encouragement, he won’t do so. In a boarding school I believe he will build that camaraderie unavailable through day school. He would be part of a community, obtain goals through his own means and generally feel more independent and confident.
- Jude is lost at home and can “stim” for hours if left unattended. Obviously, I don’t leave him unattended but he would benefit massively from an environment set up for people with learning disabilities, where sensory requirements are fulfilled and he can learn from every encounter he makes.
- Following on from the previous point, it isn’t possible to give Jude the 24/7 one to one care he needs and craves and in reality, I think I am failing him by even attempting this at home.
- I could go on for hours but I think these are the top few reasons for me.
- Elsa is incredibly grown up for an eight year old and more increasingly over time, is having to look after herself. Obviously, I don’t mean this in our entirety but she certainly has to attempt things herself that many of her peers do not. This is because Jude takes up a huge amount of my time, followed almost equally by Emmeline because of her age.
- Elsa, by her own admission, doesn’t like to be at home very much and spends a great deal of time with her grandparents because of the stress of being around Jude. This kills me. I feel I am failing her as a mother and it is totally because of how much emotional as well as physical energy Jude takes from me. I am not only Jude’s mother, I am Elsa’s and she is due the same quality of attention as he is. Sadly, because of the stress of caring for Jude, I am often impatient, snappy and emotional and I hate Elsa to bear the brunt of this. I know I can work on this but it isn’t easy and I hate her being my supportive rock when really she should purely be my eight year old little girl.
- Elsa does not sleep properly. If Jude has a two hour melt down before bed then she rarely sleeps before 10pm. She does a lot of sport and music plus she obviously attends school so not gaining enough sleep is massively detrimental to her development.
- Elsa rarely has friends over because of the impact Jude has on her time within the house. She doesn’t get any of her own time very often and therefore prefers to visit friends than to invite them over.
- I genuinely worry about Elsa’s emotional state. She is an incredibly smart, wonderful little girl and I can see the spark seeping out of her personality and I will do whatever I can to help her.
- Emmeline finds Jude fascinating but is quite wary of him at times. I can’t leave Jude with her as he has a habit of pushing her, scaring her or just generally upsetting her in some way. She is learning resilience however, I do not want her to learn it at the pace she is requiring at the moment.
- Emmeline is not able to behave as many toddlers do and cry out for her parents in the night. As mentioned above, for fear of waking Jude up, we prefer to bring her into bed with us. This isn’t fair on her or us.
- Again, Emmeline is not experiencing all she could because of Jude’s erratic behaviour and I fear she will grow up resentful, shy of social gain and displaying the signs of stress that Elsa does at times.
- We are constantly stressed, depressed and our relationship is suffering massively.
- I have lost a lot of weight recently and it’s all from stress. I have also recently seen my doctor for anxiety and stress. This is obviously having an impact on my life as well as the children’s lives.
- I suffer from weekly migraines caused by lack of sleep and exhaustion. Looking after Jude is relentless, even when he is asleep I cannot rest properly for fear he will wake up. I literally dread that telling sound of his duvet being thrown on the ground and it stops me from sleeping at night.
- My emotional health is in ruins and recently I have realised how ill I am becoming.
- I need a break from Jude during the week. I need time to function as a normal person and to be the parent that Elsa and Emmeline need me to be. I also need to be the partner that Joe needs me to be. We work as a unit but this unit is being broken apart.
- I haven’t been able to work much of recent. I’m self-employed and focus most of my work in the evenings because of Emmeline not attending school yet however, by the time Jude is in bed I’m often too upset to concentrate. Obviously, we are now struggling financially because of my inability to work to my full requirements.