24.. actually 20/7

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The missing 4 is the 4 hours Dinky actually sleeps!

What the local authorities do not seem to realise is that adequate respite for parents with children with additional needs can actually transform the lives of the families in those local areas.

I have Dinky at home 24/7, she sleeps for 4 of those and she is supposed to be in her room for at least 9 hours. However those 5 hours before she ACTUALLY goes to sleep is filled with her constantly coming down the stairs and requesting something as small as a hug, up to her trying to manipulate me into having her stay downstairs with me for a while. All the carer events going on next week for carers week, I cant go to because (and note the irony!) I am busy caring for Dinky!

Yes I said it! I am her parent and her Carer! It goes way beyond the parent child dynamic when a child has the level of need Dinky does.

What I am sick of is the ‘but you seem to be coping ok’. NO, no I am not! I love my child and it is a good thing I do as on numerous occasions I have been close to sending her back to the old school until September just to get the break I need. That may sound selfish, but I can bet you anyone who really thinks that has No idea what our life is like.

This week is half term, and this shouldn’t make a difference to us as Dinky is at home, but I swear it is so hard reading parents who do not work or who work short part time hours, rushing around to get their half term respite sorted with different workers and family members as to not have the constant onslaught of their child with additional needs. I have to pay for someone to have her for 3 hours tomorrow because I am at the point where I am thinking I cant do this. I know I will feel differently, these phases come and go, but it would be nice to actually have someone say ‘we have respite that will work for you and your child’. The social worker is supposed to be sorting it, but she hasn’t as of yet, and I don’t know if she will, as she is leaving in 2 days.

I have spoken to the SEN department and although the statement is due in 2 days, the person who is supposed to be finalising it, is off this week! I had been trying to get hold of him for 4 weeks and now he is on holiday! Considering he hasn’t sorted any of the amendments that the lady I spoke to could tell, it was going to be at least a week late. This left me in a bit of a quandary. Do I say ok, and wait for the 6th June, or do I say- do you know what, the only way I am going to get people to stop using BESD for Dinky, is to provide them with a definitive diagnosis. 

So I opted for the second option. I told them that I wasn’t happy and that NO parent should have to wait to get a diagnosis to prove that the school who wrote BESD were wrong when the provisional diagnosis written by an actual medical professional- which incidentally the head teacher and senco at the school are NOT! said that Dinks has PDA, which is an autism spectrum condition not a condition that would fall under BESD as BESD generally is the description given when it seems there is no medical cause for the problems. Dinky has a neurological condition and on the 16th June I will PROVE IT!

The woman on the phone was slightly taken aback by my forcefulness, however when I explained how we go to where we are, she seemed to understand and said she gets why I am so angry.

I got Dinky’s letter for her diagnostic appointment.

The GP surgery phoned and said the GP had asked for me to pick up the ADHD scales myself and the school filled out as they would be essential for the appointment. it was interesting reading the schools one, their scores are indicative of ADHD, and to be fair, I will take them, as I am quite sure they are right she does have ADHD too. Today I asked her how she is not tired after only sleeping for 4 hours. Her response “I have lots of energy, I am Dinky!” Yep!

The Speech and language therapist came to the special needs club house this morning to see dinky’s interaction with her peers. It was interesting, Dinky was a special mix of HFA (high functioning autism) and PDA today! Again the SaLT was saying things during the visit like:

“Hmm, she is very controlling, yet she is trying so hard to play with the other child”, and “I can see what you mean, she cant just pluck something out of her imagination, she has to look around to adapt something to imaginative play”

when she was finished she said:

“Her main problem with interaction is her need to be in complete control”, and, “She has such high anxiety when she is not in control”

it does give me hope (and makes me feel better about being so adamant on the phone yesterday to the SEN team!), that Dinky will get a PDA diagnosis at the appointment. 

So everything is on hold now until the 16th.

  

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What a week! (Parent event, zoo, hospital and diagnostic team SaLT)

I was meaning to write a post over the weekend, but didn’t get round to it, and then I couldn’t….

Friday:

I went to a parent carer event. I went for the 1:1 with the professionals really.
Spoke to some people who couldn’t help, DLA advisor and child disability social worker. The social worker was pretty rude and a bit of a muppet with absolutely NO common sense.
The I spoke to the diagnostic team salt, who was due to some out on Thursday (we shall come to that later)- she said that it was good to talk away from Dinky. She was really nice, said that she completely agrees with PDA from what she has seen, and the reports she has seen. She asked a few questions and then asked me how best to approach tasks with Dinky at the home visit so they can get an idea of where she is. (Which is bloody brilliant!) So I gave her some advice and we spoke about the statement as it doesn’t come across as social communication difficulties being the main issue, which it would be under the headings NOT BESD! She completely agreed and said “she has autism not BESD”!
I then spoke to the social communication team who also agreed that Dinky has social communication difficulties and not BESD, and were going to contact the SEN team to discuss it!
It was brilliant having people on Dinky’s side!

Saturday:

Dinky went to a birthday party, it was at the old special needs clubhouse and was very much ASD friendly. Dinky had a few moments, but did very well.

Sunday:

Special children’s day at London zoo. It wasn’t the same as last year, very much not bothered this year about making it special, it seemed more of an inconvenience to them.
Dinky really wanted to see the new tiger cubs but didn’t get to as there were too many trees in the way.
A few meltdowns, but dinky summed it up well by saying “next time- chessington”
Right at the end I got something in my right eye. All the way home it was driving me insane, almost as much as my dad was!

Monday:
I couldn’t open my eye and it was extremely light sensitive, to the point where I could only be in the living room with the curtains shut and my eyes closed. Not exactly the best condition to be in when you have a 6 year old and a dog!
My dad took the day off work as an emergency so that I could go to the walk in urgent treatment centre.
A few hours later the doc said he couldn’t see anything, to which I replied… Neither can I! With the local anaesthetic drops I could see better as the light didn’t hurt as much. But apparently it wouldn’t last and I was given some eye cream.
Told me if my symptoms changed or didn’t get any better in 24 hours to go to A&E which is either 2 buses (2nd bus takes 45 mins) or 2 buses and a train away.
When I got home I went to my room so I could keep my eyes closed. All I could hear was my dad and Dinky clashing, but there was nothing I could do.

Tuesday:

I went from being super light sensitive to being less light sensitive but with extremely blurred vision in my right eye meaning to actually see anything I had to keep it shut. So my dad came over so I could spend yet another day in a hospital… (Some people will do anything for respite lol)
The doc there was astounded that the doc the day before didn’t see the “MASSIVE corneal abrasion”. She over emphasised the ‘massive’ bit. I then had to sit up at eye casualty for a while, but it was nice and quiet.
He got the bit out of my eye and gave me some drops.
By that evening it was starting to feel better!

Wednesday:

Dad took the day off again so I could relax and not have to go out so I could rest my eye.
By the evening it was much less blurred. Dinky was not impressed with my dad being put in charge for 3 days, and Wednesday she had a massive meltdown of epic proportions, the likes we haven’t seen since she was at school. It was a mix of lots of things, but my dad tipped her over the edge.

Thursday:

Diagnostic team SaLT home visit!

I can’t begin to explain how weird it was to watch!
When dinky wasn’t being super avoidant, she came across as very autistic. She didn’t give eye contact, turned absolutely everything back to lego, couldn’t name a single friend but named the parts they played in her ice age game.
The salt couldn’t get dinky to do the activities, it was only when she completely ignored dinky and started doing one herself that dinky took part.
It was a sequencing story… Dinky put them mostly in the right order, but when the salt asked about the girl crying dinky said “because of the tigers” and grabbed her tiger and used it to flick the cards off the table.
I had to stop myself laughing!
The salt gave me a ‘oh my word, how do you get ANYTHING out of her‘ look!
More talking to dinky about lego… It was weird watching it working out how the salt was ‘scoring’ dinky.

In the end she said that the CDC team agree that dinky is best described by PDA, and that just an ‘autism’ diagnosis won’t lead to the correct support as it isn’t the correct signpost. She said the CDC are in meetings to discuss how to word the diagnosis but said she will get one on the 16th June!

She is going to come out during half term at the special needs clubhouse to see Dinky’s interaction with peers, but only to get a full picture of Dinky’s social communication difficulties.

So we shall see how it goes!

Today I have been trying to get hold of the sen team about Dinky’s statement which is due next week, we have no clue about which school will suit her, nor an idea about amendments!

I also got a call from a primary PRU about a place for dinky until we have a new school.
Yeah.., not happening!
So I have to find out what is going on with that!
Dinky has found out about a new lego series of toys ‘ultra agents’ and has emptied her piggy bank (of raided coins that were on the sides), plus the coin from her second tooth coming out, wants to go to the toy shop…. Wish me luck!

PDA awareness day- caught up in PDA issues!

Today is PDA awareness day! It has been a year since I started publishing my blog rather than have it as an online diary, and what a year it has been!

we hadn’t seen the paediatrician, we had just moved schools, and things were all new.
Now- well, Dinky has a provisional diagnosis of PDA- final diagnosis should be 16th June, is out of school and has a proposed statement which will be finalised by the end of the month! I would not have seen any of that coming at this time last year.

I was going to write a post about PDA and how I came across it ect for the awareness day, but EVERYDAY is awareness day in this house, especially with Dinky at home full time, and the developments come thick and fast. these don’t stop for awareness days! So this is how today went….

After 6 hours sleep Dinky came into my bed at 5am. Between Dinky and the dog it was obvious that I was not going to get any more rest, so we all got up.

Dinky took one look at her visual timetable and got all anxious about the visitor who was coming out today. I explained that the lady coming out was just going to talk to me and talk about what we do while she wasn’t in school. She seemed ok with that. Hyper ball of hyperness was back, which is how she tends to be when visitors descend. So I was researching alternative placements for Dinky and slipping onto facebook at times (naughty me!), and Dinky was playing with her lego up until Sky’s walk.
I managed to find a childminder to have Dinky for me for the Child In Need meeting on the 28th and sent an email to the social worker. Dinky was back on the hyper, and was winding the dog up so I sent her upstairs.

I got a call from the social worker, she said that they were cancelling the meeting as it was in half term and hardly anyone could make it, as she is leaving at the end of the month it might not be her doing the hand over to Child In Need team, she said she really wanted it to be her. She asked how things were as I seemed pretty stressed out in my last email to her when I said I was close to sending Dinky back to THAT school. She said it did make her laugh, although she understands how stressed I must have been feeling. I said that I wasn’t doing much better as I was now unsure about Dinky’s future school placement. We discussed it and she was really nice about it all, we will find the right placement.

I believe my stress was obvious as she said she was going to talk to her boss and get back to me as she didn’t know what was going to happen now with the meeting and the social workers.

I got back on with it with Dinky. We did some lego building but she was getting the hump with me for not getting it right, so I gave up and let her play by herself. I got a call back from the social worker. Which was a shock to me! She said that she had talked to her boss and got approval to request 9am-4pm respite one day a week. She said it would be a foster family who are registered to care for kids with special needs, and she has requested that they have it on the same day with the same people and the same times every week. She said she had put Dinky as priority and that she has requested ASAP, although admitted that she doesn’t know how quick their ASAP was!
A social worker who actually tries to understand is a miracle! She said that she would keep in contact and let me know what is happening. I actually believe she will!

I phoned the parent partnership people, who are so useless! They said they couldn’t tell me which schools to look at, or which schools would even be the right category.

Then the Alternative provision lady came.

Dinky was her usual controlling, hyper and disruptive self when visitors come. We did manage to discuss the options after discussing the reason we were at this point. She did comment on the fact that the school have seemed to failed two children with PDA in quick succession!

I explained that I didn’t want dinky in a mini PRU unit they have, and the woman said she had read the EPIC 135 page document that went with Dinky’s referral. (I couldn’t believe it was that long and I had no input into it. Normally no one can be bothered with the paperwork and I end up doing it all! haha) She said that she wouldn’t dream of putting Dinky in there. She also said that from the paperwork she doesn’t think that providing a tutor to come into the home would work either. Which I agreed with. Home is Dinky’s safe space (and mine for that matter!), and it wouldn’t work. So they are going to look into a space to book for Dinky and asked if I would be the second adult, I said she wouldn’t listen if I was there. So they are looking into a second adult.. It will be 5 hours a week split over 4 days.

She did explain that it wouldn’t be straight into learning and they would take it slow, I don’t think they will get round to doing any learning but hey, its them that want to do this. We discussed Dinky’s favourite things and she commented on the fact that she will go back to her boss and explain how much I have in place for Dinky.

So… kind of a big day, we are getting there with respite 9-4 one day a week soon (ish), and alternative provision starting soon (ish), I’m doing all I can to find a placement for Dinky.
So I am not exactly raising awareness today, but trying to sort things out for my child with PDA, as we need to start from scratch really.

I look forward to next year… I feel things will be even further on than they are now!

Not a good day!

I think stressed was a good way to sum up how I have felt today.

It has been a trying time, and any time I have not been with Dinky as of late, I have been out of my comfort zone. Even with her, when we are out of the house, we are normally out of our comfort zone.

Today was the first time in a long time I have taken stock of that.

As it happened Dinky was not quite over the whole trampolining malarkey yesterday, so was not in the best of moods either.

The day started with Dinky just being in the most foul mood, irritable shouty, whining… by 11.30am I had just had enough! I had tried to get her into doing something- anything, but she wasn’t having any of it. She wanted to sit on the sofa with the dog and every time I took my eyes off her, I turned back round and she was doing something silly with the dog, whether it was pulling her paws, lifting the dogs head up, pulling her tail, sniffing or licking her (that’s dinky doing it to the dog, not the other way round!). It is enough to drive anyone crazy. Dinky DOES NOT learn! I don’t mean this in the ‘I’m a bad parent and cant be bothered to instil discipline in my child’, I mean that literally Dinky can not retain the information of not doing things she is not meant to. A good example is walking near our house, we have lived here for nearly 15 months, and Dinky always walks right on the edge of the path onto the grass. The grass is covered in dog faeces. So I say to her EVERY TIME we leave the house ‘Should we walk on the grass?’ Dinky says ‘No, Dog ickies!’, WITHOUT fail 5 minutes down the path I have to remind dinky about why we don’t walk on the grass as she is, again, walking on the grass. I don’t shout, when stressed I will get angry when I say ‘should you be on that grass?’. It is a simple thing, yet she has walked in dog faeces a few times when it has been on the edge, she doesn’t connect the two things.

Sky (our dog), is also to blame, she sometime growls at Dinky for pulling at her, but she stays on the sofa, when she has an old duvet lining the bottom of a large create for her to lay down in! I cant win, one day Sky will nip Dinky and then all hell will break loose. dinky wont leave Sky alone, and Sky is a daft dog who wont go to her bed to sleep!

In the end I shouted at dinky and sent her to her room to play with her lego!

I felt bad but, in that moment I was thinking about where her school uniform was, and how the school would react to just having Dinky landed on them, as technically, they were still responsible for providing her with an education!

It was at that point I had to mentally slap myself! I was NOT ever going to end her back THERE!
So I emailed the social worker who is supposed to be working on setting up the Child In Need meeting.

 Hi,

I know you are working on it, but we really need something in place soon… One trampolining session yesterday and today Dinky has been an absolute nightmare. I love my girl to bits, but I’m starting to consider putting her back at [school] I’m that desperate for support. Not that it would ever happen!

Is there any news on the child in need meeting?

Dinky’s mum

 

she emailed back

Ha ha – you must be stressed!

CIN mtg for 28th (weds) at 2pm in  library.  Would that be ok for you?  Probably be for an hour and hopefully the new social worker will be there….

How are you otherwise?

SW

It is great that she has a sense of humour, but I lost all humour at that point. Half term. It is hard enough to get child care in term time, but half term, I have NO chance! I don’t know how I am going to attend this meeting.

Then I got the email back from the SN group leader. Dinky wanted to go horse riding on the Friday of half term, she said that she didn’t want to go to the cinema AGAIN. For some reason Dinky nearly always gets the cinema trips and she wants to do something energetic, not sitting down and then going to mc donalds. Dinky only likes going to Mc donalds when they have toys she wants. She would much prefer to eat ‘green and white trees’ (Broccoli and cauliflower) than chips. Also lunch is late and not her usual lunch of pepperami, cheese, yoghurt, melon/apple and other not so healthy snack item.

What did Dinky get?

Cinema and Mc Donalds.

I have emailed the SN group leader and said that Dinky is not going.

Now, I know people will say ‘you cant be picky if you say you REALLY need repite’.

YES I CAN!

If dinky is not going to enjoy herself, why should I send her? If I am going to spend ages forcing her to get ready and to go out and then pay for it when she goes back, it hardly seems worth it, for either of us.

I’m also annoyed at another respite service that has got in touch recently. Apparently they would spend a good number of visits at home first. I don’t like that idea.

We have lived in this house for 15 months, the only people to have come inside are my dad, my old friend from Dinky’s playgroup with her two kids (they came round a total of 3 times), and professionals. I don’t like people to encroach on my personal space. Our home is our haven. I have nothing to hide, I am constantly putting photos on facebook, I don’t have a dirty house, sometimes it is messy, sometimes it is tidy, it all depends on what has been happening.

I don’t see why they have to come to the house and cant meet somewhere neutral, so I keep putting off the meeting. When either of us is struggling I shut everyone out and NO ONE but my dad comes through our door.

 

I then got a phone call from alternative education provision, they are coming out to the house on Thursday to discuss providing some form of education for Dinky until she gets a place at a school that can meet her needs. I don’t want them at the house. I don’t want them at the house for 1hr 15 minutes a day. I also don’t want Dinky in a PRU or similar unit until she goes back to school.

I cant explain any more than this is OUR space, to why I don’t want these people here. Dinky gets unsettled, and there are so many that want to come to the house. I’m not having it.

Right now I am tired, and I just want this nightmare to be over. I just want Dinky to be at a new school, for her to get her diagnosis next month and then we wont get so many visits to the house and I might actually get some time to recharge.